Debilitating symptoms. Brain fog...extreme memory loss...spacey 24/7!

Posted , 640 users are following.

The last year of my life has been a brutal one. At the age of 22, I am in the lowest of lows and I desperately need some help!

Here’s my tale:

About a year ago, a couple months after an extremely strenuous relationship, I began noticing that I was tired all the time…and all around, I wasn’t really satisfied. Don’t get me wrong, I still enjoyed my friends, and activities…but life just wasn’t as bright and vibrant anymore after a month of noticing this ever-present fatigue, it got a bit stronger. I would wake up each morning completely zombie-mode…and that feeling would remain throughout the entirety of my day, until my head hit my pillow that evening.

Initially, I suspected some form of sleeping disorder. I set up a sleep study, got my thyroid checked, ferritin levels, all the basics. Sleep study revealed I sleep just fine and all my other blood tests came back negative.

The fatigue and the weight of the world slowly got worse over the next handful of months, UNTIL I woke up one morning and everything escalated greatly. I felt completely stoned. I couldn’t think right. I couldn’t concentrate. I felt inebriated. I felt totally disconnected and spacey. I felt as though I had no control over myself. I lost drive and motivation. I lost a lot of confidence.  I always had an incredibly sharp memory. It was actually something well known about me to those in my family and friend circles. Yet, on this morning, almost all new information could not be retained. Things that happened earlier in the day, by evening, I felt they happened a day or two before. I could no longer recount the activities I took part in. This is possibly the worst of all the symptoms. The extreme short term memory. I have no context for time and I sort of feel like I’m just floating through life suffering.

For months I visited doctors getting tested by specialists. I visited a neurologist, infectious disease, I had an MRI, & I had about 20 different blood tests. NOTHING. My doctor literally said “I have no idea what this could be. I am beside myself” TOTES reassuring! I tried altering my diet entirely to organic and all natural. I continued my workouts and ran 15 miles a week. I tried sleeping even earlier. I tried all I could think of .

I have scoured the message boards and found a few people suffering from the same, but without answers.

I’m not sure if depression is the culprit, but depression sure has found its nasty venom-coated fangs into my veins. Tired, depressed, failed memory, no drive, scared…it’s no way to live. I want my life back.

PLEASE OFFER INSIGHT! I will be so grateful J

Sincerely,

Taylorsaurus Rex

54 likes, 1428 replies

1428 Replies

Prev Next
  • Edited

    It won't leave because we hold on to it too much
    • Posted

      Do u have it jen? I really really try so hard but it doesn't go then I get upsett. Its better when I'm out in the air worse when I'm in meetings, at meals etc. I'm thinking of changing my meds 
    • Edited

      I have it worst in bright or flourescent lighting. Does that trigger you?
    • Posted

      Erm when I think about it I'm better in the dark but iv not noticed it as such. God it mist end soon !
    • Posted

      Yes mine just started three days ago right before I got my monthly and iv always been um prone to blond moments but this is odd and at night I'm fine...
    • Edited

      i feel the exact same through the day the feeling is worse and at night it seems to be better im thinking that the senses are more hypo through the day and when it gets dark our senses are slowing down thats how im looking at it but mine only started about 6 weeks ago and its driving me insane tbf but ive just been given sertraline and cbt therapy so hope this helps we are all in the same boat by the sounds of things

    • Posted

      This is really interesting to me, I have episodes of all of these symptoms that everyone is describing but strangely it doesnt seem to happen when I am at home. Most mornings driving to work this wave comes over me where the pressure (not pain) feeling in my head makes me want to close my eyes and go to sleep. When I am at work this happens at some stage every day, as well as mental confusion, I can barely talk to people I cant get words out properly and constant confusion, concentration issues, my eyes feel so strange and nothing feels real. I have been diagnosed with migraines with aura as I have severe light sensitivity. Also noise sensitivity, different noises together makes me infuriated. I have 2 large computer screens at work and also under fluorescent lighting, it is almost unbearable. I am not convinced its migraines, the neurologist I seen prescipred me amitriptyline daily 10mg, but it hasnt changed much in 8 months

  • Edited

    Hey guys! Thank you so much for replying...means a lot.

    Anxiety and stress are definitely potential culprits. 

    Its strange, really. I feel a constant irritation in my head....like pressure almost. Not quite a headache. Does anyone else struggle with the memory portion? I'm not talking a slight impairment. I'm talking...I can't remember what I did two-three days ago let alone a week. I used to be able to recount mon-sun NO PROBLEM! Now, I just feel like my brain sort of gave up on me. If a friend reminds me of a converssation, I am able to recall...but I'll have no context for when it happened whether it was a few days ago or a week plus...

    anyone else have anything else? Other symptoms?

    • Posted

      Sounds like anxiety/depression, has the relationship ended now? 

      Discuss possibility of above with GP and take from there, it can only be ruled out or treated? 

    • Posted

      Has anyone had this and now recovered from it,? My first time sertraline worked great this time ,7weeks on fluoxetine and still got it sad
    • Edited

      Kinda like your brain is wrapped in plastic wrap and it's being pulled a little too tight? Yeah, I know what that's like.. This last week, I go to wash and refill the cats water bowl, and forget what I'm doing in the middle of it. Cats go without water until I or someone else notices... I also have a constant low grade fever along with everything you mentioned above. Lately I have trouble with words being mixed up when they come out. I've had all the same tests also.. If you find an answer please let me know, this is slowly killing me...
    • Posted

      Im with you in this. Cant remember most of what happened today. Feeling al the symptoms you mentioned. Now as times goes on even more freak out as already had problems with work and family. So far Im only trying to better understand my situation but no memmory improvement. Have you found any clues?
    • Edited

      I have the exact same thing, and it's just getting worse. It gets worse when my core body temperature goes up. It even causes double vision, bright flashes, and now my vision is rapidly changing. The worst by far is the mental impairment. It's affecting my ability to take care of my responsibilities. Doctors haven't been able to help me, have you found out anything else about your condition? I have found that cutting out coffee has helped. I'd appreciate any information/suggestions you have. I've had this for a while now and I'm scared it might be alzheimer's.
    • Edited

      Me too, I have no idea how to get better. I also suspect dementia of some sort. How old are you?
    • Edited

      I turn 38 this month. I've been having problems for a while, but here lately they are getting worse. I'm suposed to go see a neuroligist ,again, but I don't have much hope there. My doctor suggested I see a doctor about depression, but I've never heard of depression affecting vision, or being affected by temperature.

       

    • Posted

      HI poepoe, I had these symtpoms for 2 years now, and finally discovered that I suffer from 'silent' migraine. I never heard of this before, but after reading all the symtpoms that come with it, I know this is it.

      Not having headaches made it a long journey to find out it's migraine, also because I didn't know migraine involves a lot more than just headaches: tingling limbs, diarrhea, fatigue, concentration/memory problems, speaking problems 9slurred pseech) brainfog etc.  Do a google search on silent migraine, you will be amazed how it matches your symtpoms, including susceptibility to temperature changes (and weather/air pressure changes, did you notice that?)

    • Edited

      Hi Lindathepinda, Thank you for the suggestion. The more suggestions the better. Maybe I can figure out what this thing is. but I don't think it's a migraine. My first doctor did think it was migraines, because I do get ocular migraines with aura, but the specialists I saw afterward didn't think so. I don't really think it is either. I have this "brain fog" all the time. It never goes away. It does get worse with activity, so it is worse at certain times, but it is always there. The light flashes aren't because of a headache, they occur when I look too far left-right-up-or down. The flashes occur less often here lately, but now my vision has gotten worse. While I don't think that this is migraines, I will try to read up on them more, just in case. Leave no stone unturned. 
    • Posted

      Hi poepoe, I never have headaches either (hence the 'silent' migraine), but I do have the brainfog, blueish light flashes, aura and blurry vision, amongst many other symtpoms,which all seem to come from the silent migraine.

      I also found it hard to believe since I, just like you, have symptoms all the time, but when I started to take Petadolex ( a herbal remedy; I'm not into the junk I got prescribed by the neurologist) for the first time in 2 years my symptoms started to clear up, so there had to been something to it. I'm still not clear of complaints, but feel much better now and am able to function again.

      I recommend finding yourself a migraine specialist, most neurologists have limited knowledge on migraine, especially on the silent form.

       

    • Edited

      Hey, I noticed this comment was from over a year ago. I am experiencing the same exact thing with  my memory. My memory used to be so good and I could multi task and reatin knowledge easily... Now its as if after a few mintues, the memory of the time as gone. I dont notice time passing nor the days. I cant remmember what I did in the morning and definintly cant remember what I haved done or said the day before. It has been seen August of 2015 I have been feeling this way but only in the past few months has it been extrememly messed up like this. I never feel present it almost feels as if I am just watching everything happen. I cannot truly feel connected to emotions or even reality around me. Everything feels like a giant blurr. I am not sure what else to do about this anymore... Has anything changed for you? Can you help?

       

    • Edited

      That irritation in head...it is not like tension in forehead or around head,sometimes when you think too much get worse?That what I have...
    • Posted

      Me too, have tou found any relieve at all? Any ideas in how to overcome it?
    • Edited

      You... You are my peoples... My weird peoples with cognitive issues but my peoples nonetheless.

      Ya I am definitely feeling these symptoms. I am 15, honestly not sure if i should share my age but meh brains too fuzzy to care, hence the obsessive online research. You can probably tell from my hesitancy of sharing my age, I have severe anxiety, and I have had a constant and frankly extremely irritating block in my head and... I dunno... a staticky feeling? I cant think straight and I have not been able to concentrate for over two years. Do you know how many math tests I have failed? Quite A lot! I do no drugs, nor alcohol. I eat... Ehhh... relatively healthy, my memory is petrifyingly bad, and I have found a bizzare amount of relief in your resembling troubles I have. No doctors visits due to the fact that I am a kid with parents who are deeply undereacting to my complaints!

      So I guess I'm not actually... Helpful in this situation... more of a... person with a connecting issue... to show your not alone with your issues... I guess...

      How I manage to be awkward even online is beyond me. 

      Anyway, since this is over a year old I hope you found some kind of resolution to your issue! 

    • Edited

      Hi,

      I have been facing this problem for past 6 years. I was academic topper ..and has a very good memory. I had been prescribed almost all ADs , anti psychotics like put the garbage in the tank.. All waste.. I still feel all the memory lost.. All the things i learnt gone.

      I even got on a violent streak.

      Lemme tell you I was doing software development for 2.5 years and had to leave job otherwise it would cause some bad results.

      Now when I started applying I couldn't remember the things to explain tonthe interviewers.. This memory thing messes daily when I have to recollect faces and money matters. All in head is confusion and vague

      psychiatrists here don't

    • Edited

      Hi there Taylor, everything that you are experiencing, sounds exactly what I have been struggling with the past year. The foggy, sleepyiness, inability to sleep/concentrate and really just all cognitive functions. I know you posted this a year ago, so I was just curious if you ever found answers? I had my thyroid checked and bloodwork and likewise have found no answers.

      Lexi

    • Edited

      I have been going through the same thing the past few years now, memory loss, feeling like I'm in a fog, the pressure in my head, everything. I go for an MRI soon not sure if that's going to show anything. I worry about early onset Alzheimer's, everything you said is spot-on how I feel, about your memory on how something you did that morning feels like you did it the day before reading your article feels like I'm looking in a mirror if I get any answers I will definitely let you know what I find out

    • Edited

      I totally empathise with you. I have had these feelings for au don't know how long. I just feel utterly confused, whirring temples, I tried to explain that it feels like I have woken up but do not know how to do the things I once knew, nor can I pursue anything new. Horrific

    • Posted

      i am 18 years old and i am the same way.  its not a headache but something is pushing on the front of your head.  My memory problems started a year ago with me not forming any memories and slowly have increased untill i am forgettting stuff i used to know.  any help

       

    • Edited

      Has anything improved? I feel the same, it is truly disturbing and I just cannot work, organise, schedule, I feel like I am on a constant go slow
    • Posted

      Hello, I, m dealing with the excact same.thought I was going crazy and still do.also my body goes rigid andheavy.yes it, s anxiety and only if I had a magic wand to make it disappear.i took think about it too much so it won, t leave because we won, t let it.i sing to myself when it , s bad, just my way of coping, take care
    • Posted

      Taylor, I am 24 and share your exact same symptoms! Your story is identical to mine. It's something that just came on overnight and has never gone alway. Have you discovered anything new since your posting?

      Thanks

      Jesse

    • Posted

      I have this Tyler and I am scared. I used opiates and alao have had a head injury. I am only 45 and feel I have Alziemhers. I cant sleep and they put me on benzos and serequel, then trazadone. I hope u get better cause this is bad. I can totally relate. Sometimes I hope the lord takes me cause being the oldest and living at home is tough.
    • Edited

      Hi,I was reading about your symptoms and I have the same memory issue with my anxiety,I guess that's what its from,I've had anxiety for years now and I've tried dif meds but I've been on celexa for a few years now,it helps some but lately my anxiety has been getting worse,I can't remember things like I'm losing my mind,I feel very anxious all the time,I dnt wna go anywhere cuz I feel so tense and uncomfortable,I dnt wna b alone at all,I'm always worried that something is going to happen to me,I dnt knw what to do anymore,it has taken over my life and I have 2 young boys to take care of,I'm 37 and I shouldn't be so afraid to do normal things!

    • Edited

      Hey Taylor

      I have the exact same thing, and I can pretty much guarantee at this point it's not anxiety and depression. That's just a cat hall diagnosis for when you have mental symptoms that no one can explain. If anything, depression is caused by these symptoms not not the other way around.

      This started for me in 2013. One morning I woke up feeling slightly strange. I popped an aspirin thinking I was getting a headache or something. But 15 minutes later, I had all the symptoms you described. Complete dissociation from reality, total stoned feeing, unable to remember things that happened outside of the current moment, weird pressure feeling in head. I remember callung my mom and telling her my brain felt clogged.

      Since then it's gone in waves of better and worse. It varies hour to hour, day to day, week to week.

      I've noticed I started avoiding hanging out with people because I struggle to process conversations and they're more stressful than they're worth. My memory is shot. People at work say things like, "what a great day!" and I have to struggle to remember why. Names are impossible. I forget what I'm saying mid sentance. I forget what I'm doing mid action. Time goes by ridiculously quickly because i have no grasp on it. Yet I'm exhausted by 6pm every day.

      I've also developed a chronic neck pain that seems to go hand in hand with the rest of the symptoms. Have you experienced that?

      I've seen every type of doctor I can think of. I've run all the tests. They're all clueless. Nothing has changed in the last 3 years. I'm still suffering.

      I'm convinced this is a problem caused by something new that doctors don't yet know about. When I googled it years ago there was nothing on the internet about it. Now I'm finding a handful of other people like you.

      Would love to hear where you're at.

    • Edited

      Fortunately, it IS anxiety and depression. Mainly anxiety. I used to think it wasn't and that doctors were just being lazy and decided to slap on an easy diagnosis. However over the years of dealing with this i've come to realize it is infact anxiety but a whole new transformation of it, a deep rooted chronic anxiety which doesn't feel like your typical anxiety. I too have been through every specialist in the book. I've gotten MRI's every blood test known to man and dog and all to no avail. I've taken every antidepressant in the book which never help. What DID start helping is CBT and talk therapy, I started to realize WHAT exactly my symptoms are and it's dissociation for me it was a traumatic experience that I didn't even realize was traumatic. For others it could be an extreme subconscious stress. School work, existential, anything. 

       

    • Edited

      Not saying yoir wrong i do agree in some circumstances anxiety and depression are a key diagnosis for peoples health however in these cases with people on here may experience alot more the the mental sides of an illness. I have been down the road with all the tests and consultants to be told that i may just have depression and anxiety but ill refuse these claims from any doctor.

      My symptoms are feeling drunk all the time like my vision is off, ringing in the ears constant brain fog like im living in a dream, easily forgetful and confusion as well as alot more symptoms including muscle spasms cramps fatigue ect.

      Doctors assume the mental sides when all tests come back normal and in my case i do get depressed and anxious but not because of the mental illness itself but because my body is extremely tired and dealing with a mystery every day 24/7 anyone would get worried with a problem that doesnt resolve especially when I have had it for 13 years.

    • Edited

      Yup same here, I have all the exact same symptoms as you. And the only thing that helps it is treating for anxiety and depression. 
    • Edited

      But is that just treating a part of the problem rather then the root of the problem?

      I wont take medication for it but thats my own opinion only because its not going to help out the rest of my symptoms

    • Edited

      Just chiming in to say I have the same symptoms too --- severe brain fog, bad tinnitus, just overall spaced out feeling like I'm only partially here. Most times I listen to people speak but only retain a small percentage of what they said. It takes tremendous effort to stay engaged in conversations because I tend to feel like I'm in the "twilight zone" most of time. I tired pretty much every day because my sleep isn't the best either. I dream something terrible every night and usually very dramatic dreams at that. I've been to literally 100 doctors over the past several years and the only consistent diagnosis I get is anxiety. Like my system is in a "hyped up" state and just can't relax. I don't have an extremely stressful life so I don't know why I remain this way. It was stressful years ago due to various issues in the family but most of that is over and much better now. Maybe once your system is "tripped up" into anxiety it's a very long road back to harmony again. I tried klonopin, xanax, various anti-depressants and nothing seemed to make me much better and gave me bad side effects in most cases (some of them being worsened anxiety which made matters worse) so as of now I'm not on any medication.

      Jayocaine - you treat your anxiety with only CBT right? Any medication at all work for you? Not that it would work for others, but just wondering. It totally sucks dealing with this daily and I feel both your pain. You just want to experience life with excitement and energy again. We can't give up hope though. There HAS to be a cure.

    • Edited

      No medication doesn't help at all, in fact it makes it worse. I've been dealing with this for about 6 years. I've done alot of searching and studying. I've finally come to realize it's dissociation. Derealization to be exact. 

      tell me:

      Does it get worse when you drink coffee?

      Does it kind of almost help when you drink alchohol? But get worse the following week?

      Do you think about it alot?

      Have you ever had a panic attack?

      Do you work? Or do activities? Or are you stagnant at home. 

    • Edited

      There is no cure per se. BUT good news, you can actually deal with it quite well and live a fullfilled life. I mean look at abe lincon and winston churchill and vincent van gogh they've all desbrived experiencing what we do. Anyways what we have are very very sensitive brains due to whatever caused us to be this way. What happened is the wiring in your brain has changed and due to brain elasticity we can overcome it. CBT is extremely extremely important. Medication, doesn't work for me due to my sensitive brain, even a cup of coffee sends me into a foggy state of nothingness. What we need to do is ground ourselves, it's going to sound crazy and like a pipe dream but seriously THINKING about it is the worst thing you can do. 

      Put it this way, since I started coming to these forums and thinking about it, reading about it. It's gotten ten times worse. When I was roofing it was still there it just didn't bother me because I was too busy roofing and working hard. 

    • Posted

      sorry thats not to say I didn't think about it when I was roofing, i just thought about it less. It was still there, it just wasnt as bad as it is now that i'm sitting on my computer talking about it. 

    • Posted

      surprised to see people having similar situation like me ~ i also feel its not anxeity or depression 
    • Posted

      I have the same exact thing! Low grade fever and all even though its got on my cheeks like I have the flu. No idea what it is but I so struggle with anxiety I'm trying to get help and do anything I can I want this to go away so bad!

    • Edited

      I've had the same for 11 months. I finally researched physical symptoms of depression and thought I'd try antidepressants. I've been on Zoloft for 2 weeks and I'm starting to feel better. I've had dizziness, brain fog, memory loss, exhaustion, and feeling like I'm not really living. The Zoloft seems to be helping. Maybe something to consider.

    • Edited

      I know EXACTLY what you are going through. The only way I can explain this feeling is being stoned, but uncomfortably stoned.

      I have a constant pressure in my head, constant humming in my ears, grainy vision, memory is terrible, I can't remember much of what I did earlier during the day. I feel as if I'm dreaming almost, there is a constant fog that I live in.

      Some days are worse then others. Sometimes I don't even want to leave my house because I literally can't focus on anything. On these bad days Sometimes I'm not even sure if I said something or if I thought it... I get so out of it.

      This first happened to me when I was 14. One day I was hanging out at school and then boom it was like an all of a sudden thing. Something clicked in my head and I was NEVER the same. I was terrified I prayed for it to go away and tried to just sleep it off but it never left. I'm 23 now and to this day I still feel it. It is permanent.

      Over these many years I have learnt how to deal with it. I've gotten used to it and I know how to deal with it when it gets really bad. I live a completely normal fuctioning life. If you aren't already at that point you will get there. It may take a lot of time. Took me about 2 maybe 3 years and I'm still not fully used to it. I still wish I felt normal like I used to. But if we have to live with it for the rest of our lives there is no point letting it destroy us.

    • Edited

      Did you ever have some periods in between where you have felt back to normal? I get these moements where I suddenly feel not as bad. They come all over sudden but don`t last that long.

      For me this is the fourth time I`m going through this and this time it`s not getting any better but rather worse. Fellong totally irritable, short fused , can`t concentrate. Now this is withme 24/7, well when I sleep I somewhat feel better but the next morning I feel bad again. And then, boom, somehting clicks again and I feel even worse. And that is then my new baseline from which it will again jsut go downhill to a new lower low.

      Right now I`m wondering for how much longer I will be able to work, things I used to do at work on a daily bases suddenly become a real task for me, I have to try and recall how i did them before. 

      My head feels tense most of the time, eithet t the top or left and right side.

      Neck is tense as well and got very often a burning in the back of my head.

      It`s all vry frustrating and all the searching for answers on the internet got me some terrifying answeres.

    • Posted

      Did you suffer from your symptoms 24/7? I asume they got worse over the time?

      It`s now 3 years for me now and before that I had over a period of 17 years the odd spell of similar symptoms but none of them lasted as long as the current one. And none of them was as bad as this one. Hard to believe that anxiety cn do all this, but maybe it`s just all it is?

    • Posted

      I'm so sorry for your suffering. Having a mysterious illness is truly painful. Most people don't understand.

      My symptoms are 24/7 but since July they have been worse at night, if I'm tired, or if I'm sick at all. My symptoms started in January of 2016. I've been tested for SO many things and they're all negative. I've been taking Zoloft for a month now and I think it's helped with the dizziness, but it's causing me some other problems, so I may have to try something else. I definitely believe that stress, anxiety, depression, and diet play a huge role in our health. Have you tried altering your diet? Please forgive me if I ask you a question you've already answered; my memory is horrible these days...it's a part of the mystery sickness.

    • Edited

      Yes it`s terrible having to deal with something and no one can give you any answers in regard to what yo uare dealing with.

      I have altered my diet way back in 2008, no carbs, no sugar, lots of veggies etc. I don`t drink alcohol neither do I smoke. But eben though I changed my diet I got these symptoms anyway. But back then they never were as pronounced as they re now nor did they last for as long. Over the last 10 years I had 4 or 5 MRIs of my brain done, all came back just fine. Buthrn there are things you can`t catch with MRIs anyway. Like dementia for example. Something I`m more and more buying into. My concentration is terrible, I get so irritable at work because of all the noise, bright lights, and stress. And the declien I`m experiencing is not like a slope but rather a steep fall from one plateau to another. Withthe new plateau being my new baseline from which it will get even worse after a while. 

    • Posted

      I am so sorry. Have you tried an antidepressant? Have you been tested for autoimmune diseases?
    • Edited

      Hi, just wandering if your any better or had a diagnosis? Im feeling same for over 2 months now,
    • Posted

      Hello I'm glad I found this. I have panic anxiety lately and foggy head weird fuzzy feeling put on Ativan as needed cuz I couldn't sleep. I really don't want to stay on it though. Going to try amino acid therapy. Trying to do some meditation, only works for so long. sad any suggestions

    • Edited

      Hey Rockers, 

           In the beginning this feeling would come and go, somedays I'd feel perfectly fine, the next, not so much. This went on for a few months, if I'm remembering correctly. Then one day it never left me and I've been like this ever since. 

      If what you experience is anything like what I have been living with for the past 9 years all I can say is that it does get easier. For me I found myself getting used to it. It's hard because you always want to feel that "normal" feeling again, which conviently never comes. But once you've accepted that it gets better.

      What I had to do was force myself to do my daily tasks. For memory I also started keeping a journal and I write down everything I have done in a day then recap when I need to, it's quite handy to say the least.

      Other then that just live your life the best you can. Enjoy the things you love to do. Evenutally you'll find yourself not even noticing it...

      Good luck smile  

    • Edited

      Hi dylan, I agree with you. Most doctors follow a protocol of blood work and various generic tests and give up pretty quikly ( especially in the U.S..). For me, I had viral meningitus when i was 30, It was caused my the Epstein Barr virus and completely wiped me out. 11 days in the hospital and the aftermath has been hell. I went into a contant state of numbness, always feeling like I had poor sleep all through the day for 11 years now. This had ruined my ability to concetrate, I do not have the ability to get credentials I need becuase of the non stop mental exuastion, In the U.S. this means I could very well end up in total poverty. One thing people should keep in mind on the forum is known viruses like Epstein Barr are in your body for life and have often been cited as possible causes of 'chonic fatigue syndrome' . I'm living proof of this, I'm numb as I write this, just as i always am, from the day the doctor told me I had meningitus from Epstein Barr 11 years ago until this moment, the relationship is clear as day.

    • Posted

      Hey Rockers what do you eat and drink on a daily basis and how many times a day?
    • Posted

      I have all you're symptoms apart from the ringing In ears,my ears have a pressure feeling .

    • Posted

      Mine came over night as well. Did you find what it was? Really struggling
    • Posted

      hey Stephen, Any sucess in feeling better or clue whats going on?

      sounds like I may have the samething but I havent found anything to help.

    • Edited

      I can so relate. Being a mum of small children is a real concern when you feel this way. I'm so worried about how my child will be affected by my impairment. My symptoms are very similar to yours! I hate that this is in my life while I'm responsible for a young child. 🙁

    • Edited

      Hi Stephen, 

      I just came across this discussion. I wrote a reply to the original post. I am suffering from the same symptoms. I am thinking that we should form a group and contact neuroscientists who might find our group useful for their research to understand brain more. I now came to a conclusion that this is my new state of mind and I gave up on hoping that I will ever have the same clarity as I used to have. It is horrible to feel disconnected and stoned all the time but what encourages me is that other people learnt to live with it. If it is more of us together forming a group, doctors and scientists would take us seriously than if we are on our own. What are your thoughts?

    • Edited

      I'm on board to contact a neuroscientist group... I have had this horrible "brain fog/zoned out" problem off and on for about 5 years now. I'm currently in a bad phase of it now and sometimes it worries me especially when I'm driving and have passengers in car. I am so spaced out that I don't make the safest driving decisions and take chances I shouldn't. I almost seem to have an "I don't care --- whatever..." attitude. I just feel like I'm so mentally messed up and unable to focus. I also get very irritable if someone breaks my focus or talks over me. It's like I've lost the ability to handle the interruptions/distractions. I don't know what's happened honestly. I have gone through a lot of stress and think my adrenals took a beating so maybe that has something to do with it along with hormonal imbalance possibly. It's a big mystery to me but I would love to feel mentally "with it" again. It's been so long... Plus I have such horrible fatigue most days that causes me to just want to lay down and sleep at any given moment. I'm on board for an experimental group to try and help us out...

    • Edited

      i know what you mean I feel the same way sometimes when I drive. I wish I knew a cure. I just keep trusting the Lord.
    • Edited

      Nice to hear you say you keep trusting the Lord. That's exactly what has carried me through all these years, and I tell you I've had some moments where I honestly thought I'd be seeing Him very soon. I was so exhausted and mentally in such a strange place that I didn't know if I'd see the next day. I have hit seasons of where I feel better, although not back to myself by a long shot, but I'm thankful for those times. Right now is pretty tough so please keep me in prayer and I'll do the same for you. God Bless you as well.

    • Edited

      i read rcently that we should thank God for triulation since it's develops patience and patience develops character. Yes I will be praying. He loves us and is with us.

    • Posted

      jaysus christ... me and you are pretty much in the same boat. I'm 15 (gonna be 16 soon) and i suffer from anxiety. My brain fog is bothering me these days coz i have my finals.  Just wanted to say the best of luck to you and your future. 

    • Posted

      I continue to pray for everyone here that they would receive healing.
    • Edited

      You described my feelings 100% right. Mine started with a panic attacks and the came the blurry feeling, detachment feelings and memory problems. I also sometimes have difficulties to pronounce difficult words and i feel like talking is hard. I had these symptoms for 8 years now. I dont think i will ever recover from this. I used go to the doctors and psychiatrist but i kinda gave up because no-one had any idea what was wrong with me. By the way, i also have problems with my neck and shoulders. 
    • Posted

      I know its been over a year since this post, but literally every single symptom you've described has been my exact situation, slowly exponentiating over the last 2 or 3 years. The depersonalization, the spaceyness, the zombie/fatigue feeling, the memory issues, the sheer lack of time context (did that happen today, or a month ago?), the lack of motivation to do things that you know you love, and how every little responsibility is suddenly a huge undertaking because of the lack of motivation / the fear of failure / the compounding stress caused by your own brain. I know I have untreated depression and anxiety, but I'm curious if treatment will help or has helped anyone here. Did you have any luck?

    • Posted

      I can't speak for anyone else but for me I just keep pushing forward. I try not to think about it, keeping busy and trust God is the best thing that has worked for me. I am trying new things and will post if they work.

    • Edited

      I'm also on board to join a group - I've been experiencing the same foggy and weird neurological issues.

      For anyone who is reading this and looking for reassurance that they are not the only one with embarrassing cognitive problems, this is my experience: 

      For a little over a year now I have been in an on-again off-again fog.  (With the fog taking over more frequently and intensely in the last few months.)  I get confused easily, am incredibly forgetful, have a hard time finding words or staying focused, I avoid social interactions because I feel like an idiot, get random blurry vision, extreme headaches, constant fatigue, lack of motivation, numbness in my hands and face.  I have a strange sense of time - hours, days even, can go by without even noticing.  When I don't have a headache my brain and ears feel under pressure.  Too much caffeine and bright lights/sunshine amplify the symptoms.  I definitely still have moments where I feel sharp, awake, and, despite sounding corny, actually alive. But those moments are few and far between at this point.

      I will be seeing a psychologist/neurologist this week, if anyone is interested in my findings/treatment let me know, I'm happy to share.

      Also, Thanks to TaylorMason for the original post, and everyone else who is struggling with this.

    • Edited

      Hi Celia, thanks for posting. I recognize every bit of what you're saying and I'm sorry you also have to go through this.  Please keep us updated on your doctors' appointment. I'm curious about their conclusion.

    • Edited

      Not sure my post went through. My son if finally rid of most of these awful symptoms and back to school. Months of searching for answers. It was anxiety and depression on top of atypical migraines causing these physical manifestations.
    • Edited

      What kind of treatment did your son get Cari? I don't think I suffer from depression or anxiety but I do from silent migraines. I also got Lyme disease. By now I'm willing to try anything to get a life again though.

    • Edited

      I would have never guessed those would have been the culprit. Amitrypline for the migraines. Zoloft for depression/anxiety. CBT therapy 2x/week for months. Now 1x/week. Lots of supplements as his

      Adrenals/Corrisol/etc were wiped out. And hypnotherapy. We tried a lot in a short period in order to get him back to college/friends

    • Posted

      Thanks Cari for your reply.

      That's quite a lot of stuff, but it's great it helped him.

      May I ask which supplements you used for the adrenal exhaustion? I suffer from that also, always have to lay down at 3PM for a couple of hours. Not very practical if one should work all day.

    • Posted

      It was a combination of adrenal(priority one adrenal 250), DHEA, cortisol manager and hydrocortisone
    • Posted

      Thanks again Cari. I'm familiar with the compounds you mention, I've been taking Ashwagandha, L-theanine and Phosphatidylserine for a few months but I might be adding the Magnolia bark soon since I've recently read in multiple sources it could be beneficial (ironically enough I've cut down a big Magnolia tree last year and burned it up in my stove).

      I have the adrenal one laying around here for a while now, but didn't take it yet because I'm a bit wary of the possible side effects, which also prevented me from getting the DHEA and hydrocortisone. I've used high doses of cortisone in the past and got awful side effects then.

      Thanks for getting back at me Cari, it's nice to have something concrete tips to go on while having to live in this mess.

    • Edited

      Please do update on the symptoms! I am both pleased and saddened to have found this thread.  I've been feeling the same way for two months.  The good thing is mine doesn't seem to be as severe as some of yours - I'm still doing well in uni, etc. but I am absolutely not myself, random waves and spells of dizziness, pain at the back of my head, mental fog, terrible short term memory and also random muscle trembling which (yay) disappeared a few days ago! My sense of time is shot.  

      I'm also totally up for speaking to a neurologist.  The more examples they have, the more interest and studies they can undertake to solve our strange problem.

    • Posted

      Hi new to the forum thing just wondering if u ever got any help with ur suffering ? I've been suffering the same now for 2 years and it's getting worse . Brain scans. Heart scans . Blood tests. Doc says nothing wrong with me. I know there is . Someone pls help!

    • Posted

      Lots of tests for my son too. Counseling, lots supplement to balance cortisol, adrenals. Iron etc and a med for depression have allowed him to return to normal activities.
    • Posted

      So the doctors found something wrong with your son ? Was it anything in particular maybe I can run it past my doctor see if it's a possibility I have the same thing . I don't know what to do. Any more information on what ur son takes to make him feel better would be much appreciated. Thanks

    • Edited

      He is in amitrypline for silent migraines (although I now question that diagnosis) but it did solve the brain fog for 2 years. Now sertraline(Zoloft) for depression and anxiety. Weekly counseling has been a huge benefit. Plus a good naturopath to check hormone levels. He had wiped out his system living in fight/flight mode constantly.
    • Edited

      Is there any pattern to the on-off effect Celia or does it just come back on overnight?

      I got absolutely wiped out with huge cognitive issues 3.5 years ago (I was only early 20s) and now live every second of every day in a mental fog, some days are incredibly tough. Literally all hit me one day out of the blue like a brain 'attack' after feeling it come on gradually for three days prior. My memory is totally gone.

      It has progressed and other symptoms include fatigue, tingling/pins and needles in feet which has now spread to whole legs and hands, stiff knees, hair loss, floaters in eyes, the list goes on...

      Doctors don't know what's happened and I have had every blood test under the sun, MRI scan (which actually didn't come back clear but deemed insignificant), lumbar puncture, the lot. I remain undiagnosed. I would do anything to have a feeling of clarity in my head again, but for now, i have no leads.

      For anyone going through this, keep up the search and I hope you find answers. You will know in your heart whether this is caused by anxiety. In my case, after 3.5 years of searching which I can barely remember, I know it is not.

       

    • Edited

      Hi Linda, 

      I had my active B12 checked this time last year and it was almost dead centre of normal, doesn't necessarily mean i'm absorbing it though so considering a B12 injection to see how I feel.

      Had Lyme tested privately (I'm UK so testing not so thorough), it came back negative. I think it was an ELISA test but I'd need to ask my doc. Saw my GP recently who is totally out of ideas, he is going to re-run every blood test available which is good. I asked about Lyme and he said he'd expect far more nero symptoms in the weeks after symptom onset if it was lyme. I'm still tempted to run a full lyme-lab with Armin in Germany. I was bitten by something, I don't know what, in 2013 (all this started in Jan 2014), I didn't have a bullseye rash but I could see the bite hole in my shin and my whole leg swelled and went purple/blue for at least a week. Related maybe? I don't know..

    • Edited

      Sorry, Vit D was deficient in very first bloodwork when this all started. Took high-dose Vit D supplements for a month, but no change sadly
    • Posted

      Hi never20, I asked about the B12 because the so-called normal value is far too low, it should be at least 400. I've extensively researched B12 since I had a major deficiency myself when it all started.

      I upped my B12 in 3 weeks from about 150 to 390 by taking 3000mcg sublingual tablets containing the 'right' form of B12 (methylcobalamine). I didn't want Injections since they are too low dosed and the wrong form of B12 (hydroxycobalamine) and are also quite uncomfortable (having to go to the doctors office and getting an intramuscular is no fun:-s). I took methylfolate with them to facilitate utilization. I could notice the effect in a few weeks; less foggy, my shiny and thick hair returned and a little less fatigued.

      I also did my Lymetest in Germany, the GP tests are useless.

      Peculiar that you had the same 'bite experience' as me: I also was bitten in 2013 preceding my first complaints in 2014. I had a hole in my leg as well and had it severely swollen and colored for a few days. I saw the insect for a second and googled it and found out it was a Blandfort Fly. One of my neighbors has a huge pond, so it probably came from there. I've also been thinking about it being the possible cause for my complaints, but I can't find any info on chronic complaints as a result of this fly's bite.

      By the way, not all Lyme infections lead to mainly neuro symptoms initially, it's especially Borrelia Afzelii which does this, other Borrelia infections mainly lead to joint and muscle pain and feeling feverish initially.

      Lastly, if you have a vitamin D deficiency: it can take up to several months to get to a normal level (+/- 80), it's not as quick as B12. I also had a low level, and it took me almost three months to get to a normal level, even though I took a high dose.

    • Posted

      I think my B12 level was around the 130 mark, so something to consider. Have you found upping your B12 helped with any symptoms at all? I have high dose in my multi-vit and have used high dose B12 methylcobalamine oral spray before but to no benefit. I thought people used the injections because they were high dose?? And also because they take effect more quickly. 

      My vit D was brought up to 79 a few years ago after being at 25, although it may have dropped off again as there's little sun in the UK!

      With your lyme - what were your first symptoms? My understanding was that actually none of the Lyme strains affect the brain first, but in almost all cases it would start as a feverish/pains (I don't have any pain/fevers) within a few weeks of being bitten and neurological issues being a much later problem. Maybe i'm misinformed. This makes me think it is not lyme, but i'm still considering testing. The only downfall is that financially it's a huge outlay, i have some money to put towards finding an answer to all this, but if i go for lyme testing and it comes back negative, i'll kick myself that I could've looked elsewhere. Catch 22, really! 

       

    • Posted

      A B12 of 130 is way too low. A count of 120 or below is in general perceived as an increased risk for neurological complaints. These values are based on observations in the population, not based on any scientific grounds. For example: in Japan the normal value is 400, probably because people eat a lot of B12 from plant sources.

      The dose you would get through an injection in general is 1000mcg once a week. In my experience with other people it takes ages to get to a satisfying level this way, if at all.

      I doubt if the spray you took was really high dose; most of these sprays are just 500mcg. Also you need to avoid drinking/eating anything for 15 minutes.

      Upping the B12 indeed had its benefits, see my former post. I should add that I also slept a lot better.

      I also waited (too) long to get tested for Lyme in Germany, for the same reasons as you. In the end I wish I had done it earlier, regardless the outcome. With a positive outcome you can focus on one diagnosis and in case of a negative outcome you can drop at least one cause for your complaints and be relieved it's at least not this rotten disease.

       

      My Lyme started with feeling feverish and extremely fatigued, but was accompanied right away with all the neurological stuff.

      The different kinds of Borrelia species are really different animals. I hardly recognize the stories of people with the Burgdorferi kind, they suffer a lot more from body pains and headaches initially (though later on it gets more similar in the neurological sense).

      And well, the weather and vit. D.... I will supplement it for the rest of my life for sure, unless I will succeed in leaving the Netherlands. This climate is killing me slowly in every way...

    • Posted

      Ah, sorry Linda, the brain fog can be a nightmare when reading/remembering what people have said! Great to hear that the b12 helped you - a little less fog and improved hair growth would be very welcome right now! Certainly think I should get back on it. I tried a couple of methods in the past, oral spray 1200mcg (so no, not really high dose) and 500mcg tablets, although i was only on them for a few weeks and gave up - got my B12 tested about 8 months later and it was 125 (not 130, just checked results). That is interesting about Japanese diet and B12, I know they are very rich in iodine as well. 

      Yes, I do agree about the lyme testing, it's something I need to do. As you say, it can only be ruled out. I might PM you about that, if you don't mind. 

      I've often found the Vit D. deficiency interesting and its impact on people's health. Most people in northern europe should be supplemeting really. Half the UK are likely deficient, although many show no symptoms of it. 

       

    • Posted

      And by the way, thank you for your info Linda! Very kind of you
    • Posted

      No problem never20, I know all about brain fog...

      Considering the B12 it's very well possible you raised it significantly since 1200mcg is quite OK and even 500mcg daily should result in an increase, but if you suffer from malabsorption so you might need to take it indefinitely.

      I take high doses of D and B12 consistently and my blood works have been OK for the last couple of years, so it's worth it.

      Feel welcome to PM me if you have any questions.

    • Posted

      My pleasure never20, I'm happy to share my knowledge with anyone who can benefit from it.

    • Posted

      Hi Cari00,

      your comments have truly been the most helpful in this thread. Like your son, I am also in college, and I am terrified to go back after the summer break because of inability to function. I was wondering more about how he feels now specifically? Has the brain fog gone away?

    • Posted

      Hi, I couldn't find what you were replying to but if you mean redness on your nose and cheeks and it's couples with a fever maybe you should your doctor to check for SLE. I'm not a professional in anyway and am in no way trying to diagnose you. Anyway, no harm in asking your doctor right ?! I hope you're doing well.

    • Posted

      I am having the exact issues that you had when you wrote this. Did you find out what was causing this?
    • Edited

      Hi I would just like to thank u for giving me the information on your son's meds I was put on sertraline after I told my psychiatrist about what u had told me , he put me on maximum dose 200mg and told me if it works then he suspects it is chronic fatigue syndrome as this is how they treat it . I'm 95% back to my old self once again the occasional minor confused moment. It's all down to u thank u so much .hope ur son is still feeling better. ?

    • Edited

      SAME - a few doctors mentioned i had fluid in middle ear and prescribed nasal sprays... didnt do much
    • Posted

      Agreed. I had a great space of time without fog, and thought my gluten free diet was the key. I had maple syrup on my gluten free waffles, and the surge of sugar spiked my fog...
    • Posted

      I hope u see this sad did your tinnitus go away? I was so stressed and panick attacks and the last symptom to occur was tinnitus sad it's been a month now sad 

    • Edited

      I've read that Melatonin can help Tinnitus

    • Edited

      Wow, actually kind of a relief finding this thread. I thought I was alone. We should all meet up and form the brain fog club. Seriously though, all of this describes what is happening to me perfectly. Having conversations is next to impossible. The vision problems are what are really getting to me. Everything just looks weird. I don't know how to describe it. Things just look out of focus, or further away than they really are, or like the depth of field on them wrong. Nothing looks real. This all started for me a few months ago out of nowhere. Nothing changed that I know of, it just happened. I have anxiety problems, seems to be a recurring theme in all of these comments

    • Posted

      ExaltedNik mine started a year ago and I am now getting treatment for Lyme Disease, EBV & HPV-6.  It really sucks but I'm hoping to eventually come out the other end of this tunnel.  My vision is weird, very had to describe to people.  I just saw a retina specialist who is going to run more tests, but thinks the Lyme could be affecting my vision, said it is not uncommon

    • Edited

      Did they run a lymes test? My physiologist thinks mine is lymes too but I have had 3 negative tests, but my symptoms get better when I take a lymes antibiotic. So she is treating with the antidepressants and meds that are used to combat the physiological issues that lymes causes. I hope you get better. I'm going to a lymes specialist very soon and hopefully get some real answers , good luck 

    • Posted

       33Cody-

      Make sure you see a Lyme specialist.  Most doctors are uneducated about chronic Lyme or neuro Lyme. A Lyme specialist (LLMD) will most likely utilize specialty labs as false negatives can be very common.

    • Posted

      Hi never20!  I am so sorry that I didn't get back to you... I never got any email updates about people responding to me on here so I didn't know that there were people who were interested! Seriously so sorry.  If you're still looking for answers - I've been diagnosed with cPTSD.  It explains all of my symptoms perfectly.  I'm currently in treatment with a prognosis of about a 12 month total recovery time - so 8 months to go.  Feeling a lot better and hopeful that I'll be able to 'fix' me for good.  Let me know if you're still struggling and interested in knowing more... I'm happy to help absolutely anyone who might be going through this thing too.

      Again, sorry for the delayed response!!

    • Edited

      Exact same symptoms, the neck pain/ache is so frustrating It feels constantly there but I can't pinpoint if it's coming from my shoulders, my neck or the base of my skull, along with the forehead pressure. All becoming worse as the memory and brain fog worsen. I was always in advanced classes, graduated at 16, attend college before 17. I have always read books on a daily basis, all kinds, all the time but for the last few years I can't retain ANYTHING! I get so frustrated after the first few chapters because I can't remember whats going on. My perception of time is so off I'm sometimes convinced I'm dreaming. Things this morning feel like yesterday. Instances last week seem like I may have dreamed them. I'm 30 and I feel mentally dead. 

    • Edited

      Hi Brittany-  I am suggesting that you get tested for Lyme and viruses.  Epstein Barr Virus and other viruses can cause stiff neck and sore muscles as well as brain fog.  When I was tested I came up positive for Lyme, EBV, HPV6, Micoplasma and Parvovirus.  At least I am getting treatment now...these can be invisible diseases...you don't always know you have them unless you get tested.

    • Posted

      I was about to say...look into Lyme disease!! Get tested through...

      I've been in this same fog for years because of Lyme. sad It literally feels like I'm looking at the world through glass or something. It's the weirdest feeling ever. 

      [b]I have removed reference to individual private clinics which are not supported by UK doctors[b]

    • Posted

      For anyone who is reading this and looking for reassurance that they are not the only one with embarrassing cognitive problems, this is my experience: sorry i used some of your words thanks saved me 30 min 

      For about 15 years now i have been passing out at lest once a year not sure what issues may are may not be a part of this madness  I have been in an on-again off-again fog anxiety depression and pressure on the top part of my brain that makes it so i cant hear myself think just a ringing sound that can get so loud i get dizz and see white as i passout for about a min has anyone else had a sound in the middle of your head sounding like bacon grease frying body gos limp and i see white till i can only hear my friends asking me whats wrong and i cant move or see for about 40 secs   the fog makes it so i cant see images in my mind when its hitting me i cant think without being able to visualize what am doing its how my mind works (With the fog and pressure like some one gaps my brain and squeezes taking over more and more ive had 3 long periods where the fog and pressure last for mouths on end with little brakes of coherent thought am just now getting back to 65% of a 100% of mind power its almost 2018 this time it started in 2014 dec i can remember about 12 things from 2014 to now 12 and its hard to see it and what i can see is faded as i get older its getting worse i cant lose 3 years again  I get confused easily,finding it hard to keep up with people talking ether it sounds muffled or am still trying to think what the hell the first word that come out there mouth was i mean there are times i cant understand  English born and raised in ohio wtf is going on  am incredibly forgetful, have a hard time finding words or staying focused,hot flashes, I avoid social interactions because I feel like an idiot, get random blurry vision,dizziness , constant , lack of motivation, pressure on the top on my brain front to back one time it was only half of my brain felt like it had had the pressure i think it was my right side if that happens to help some how   I have a strange sense of time - hours, days even, can go by without even noticing.  my brain and ears feel like there poppin .  Too much caffeine and bright lights/sunshine stress stress stress will amplify the symptoms.  I definitely still have moments where I feel sharp, awake, . But those moments are few and far between at this point.  i dont know what it is but i do know for me the fog and pressure feels different when its going to last a week or longer once you know the feeling for me i get 3days to  a week after i feel a strong one  comeing b4 i feel like someone unplugged me o almost for got hope this helps someone i started out passing out for the first time in my life around 16 was just walking got dizzy want down around 20 is the first time the presser started right after that b***h fog brain showed up then the ringing hot flashes ears making sounds spacing out feeling like my body wasnt mine batter way of putting it i was in there but i wasnt the driver it was like someone took the vary basics of who i am put me in the back seat and gave that dope the wheel saw other people with a lot of the same things i went tho but didnt know it was all connected worst s**t i have ever been throw i thought i was possessed body moving and me unable to take control just able to see out my own dame eyes  but thats from start to finish as far as i can remember  i hope it helps sorry i cant spell for s**t 

    • Edited

      yes, I have all the same symptoms mentioned here.  Getting treated with ABX for Lyme now.  Praying for some resolution.
    • Posted

      I feel the same exact way! I wake up in fear everyday 😩 praying things get better for the both of us especially for the sake of our kids!

    • Posted

      Iv ptsd too and I'm constantly anxious with severe brain fog I've been this way with three years now I just don't know what to do anymore and im taking antidepressant

    • Posted

      For all that read this I’m praying that you get well. Having these things going on is no fun but there is hope 😀

    • Posted

      I cant keep track on this thread. How olds ur child ? My heads total fog sad im so dizzy and spaced out
    • Posted

      I'm happy to hear you've figured out the cause! So many people struggling with these symptoms need to be tested for Lyme. It's becoming more and more common. I treated for a long time, even with a PICC line for a while and unfortunately never got better. Antibiotics started wreaking havoc on my liver so I was pulled off of them. Now I just try to manage my symptoms as they come. Some days are better than others. Hang in there!

    • Posted

      Hey Rachel - I'm so sorry you're going through this.  Its truly so much harder than people understand (and honestly, people not understanding it makes it even harder!)  But here's what I'll tell you - I'm in an entirely different place than I was 8 months ago.  Its been hard, as I refused medication (those never worked for my mom or aunt)...and its been scary (the number of times I almost killed myself over the summer is truly embarrassing).  But I'm happy, most of the time, and I am able to clearly see when I've been triggered, have developed really good coping strategies for the weeks after a severe trigger, and am hopeful that this will only take a year of my life, not more.  (8 months in, 4 to go!)

      Here's whats worked for me - first, the book "the body keeps the score" by Bessel Van Der Kolk was world changing for me.  He understands cPTSD in ways that very few psychologists do.  This book explained, basically, my entire personality without knowing anything about me.  Ive spent many hours watching video clips of him on Youtube (included a link below!).  Youtube has been such an amazing source of stability for me - when I'm freaking out or confused or sad its so helpful to find other people experiencing this thing.  Makes me feel a lot less crazy.

      Daily things that haven been very helpful - drinking plenty of water.   Vitamin D, B-complex, and fish oils. Exercise.  Going for a long walk when suicidal thoughts come around was really helpful.  Stopping for a hot tea afterwards - also nice.

      BE VERY PATIENT WITH YOURSELF.  (this has been one of the hardest parts-I used to drink and party and play all the time...now, no alcohol in months, healthy isolation, SLOW days...but my brain feels better. confused )

      If you don't like your therapist, get a new one.

      Its a weird and difficult journey - life debilitating at times - but I'm really grateful to have found the resources that have saved my life.  Let me know if I can be of any help to you at all - you can get better.  Promise.

      Good luck!!

      Van Der Kolk:

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Edited

      I can relate to many of your symptoms;

      Mine are:

      Fatigue/Excessive Tiredness

      Brainfog/Difficulty Concentrating

      Tinnitus/Ringing in Ears

      THEN, 

      Anxiety hit me hard (all the sudden)

      Negative and Racing thoughts

      I found that the main culprit is a lack of sertonin.

      A lack of Serotonin will in turn mean a lack of melatonin(promotes sleep)

      Once I raised my Serotonin, all my symptoms started to fade away.

      How did I increase my serotonin levels?  You can do it by either a SSRI, or taking something like L-Tryptophan or 5-HTP.

      I have tried all... 

      L-Tryptophan -> 5-HTP -> 5-HT(Serotonin);  All a SSRI does, is inhibits the expulsion of Serotonin, so it stays with you longer.  (Don't mix though)

      I was taking a very high does of L-Tryptophan (up to 8 grams a day) and doing this, made me feel much better... but its a pain to take that many pills a day.  

      Another thing that seemed to work is doing a low carbohydrate diet (Keto),  after being on keto for about a week you can start feeling better.  And now, I will notice after eating meals with high carbs, that I feel high fatigue

      I am still trying to figure out why my body is not utilizing the l-tryptophan properly, or going through it too fast...  but I wanted to post my current knowledge, in hopes that others can benefit, and possibly in turn contribute more.

      I have been exploring the Serotonin/l-tryptophan pathway, and looking at other vitamins/minerals needed to properly turn l-tryptophan into serotonin.  Looks like b-vitamins, especially b6 and b9 are necessary to synthesize serotonin from l-tryptophan.  Exploring Methalyation as well... and MTHFR

    • Posted

      I am on abx now for Lyme. Did they help you???
    • Posted

      Hey awishforhealth. I decided to register after seeing your post about starting a group to get this brain fog s**t figured out. Was wondering if u went along with ur plan and got some people involved. if so id be glad to join in on the efforts. I personally cant remember how long ive been dealing with this same brain fog issue but im determined to find a solution.
    • Posted

      Hi Imzack

      just wondering how you are now. I have the same symptoms as you, has you tinnitus gone?

    • Posted

      Hi!  My situation is identical to yours! I was wondering if you've found any relief from these symptoms, and if so, what you've tried that's been successful?

    • Posted

      I can relate to many of your symptoms! I took an organic acids test which revealed a high quinolinic over 5-HIAA ratio. Basically, decreased conversion of dopamine to norepinephrine and epinephrine is indicated. I also have the MTHFR gene and believe methylation is partly responsible. Have you made any discoveries in the last 6 months that have been helpful?

    • Posted

      Your story explains exactly what I'm going through right now. Exactly! Have you going anything new out? I'm on the verge of going on antidepressants because I'm at my end.

      I pray you've gotten some relief ??

    • Posted

      Interesting, I am doing an Organic Acid Test tomorrow and hoping my practitioner will be able to make some recommendations once we get the results.  I also have the MTHFR gene mutation.

    • Posted

      Did you find anything that helped with your memory ?? Do you feel like your okd "self" ?

    • Edited

      You can count me in i would love to find out what the heck is wrong with me i too feel like im not here like a zombie i talk like a zombie my words come out all gebrish like im having a stroke or something thats why i dont go out much because i dont want to be embarrassed with the way i talk i feel off balanced when i walk dizzy feeling my legs feel like lead when i walk i forget what people tell me when there talking to me like it goes in one ear and out the other i have very bad health anxiety and ptsd. My mind is always racing non stop i have a hard time sleeping too because of it it wont shut off. Im so tired of living like this been like this since i was little. Im 50 yrs old now and its gotten worser it seems . god bless everyone on here and out there who are going through this its a horrrible life feeling like this all the time.

    • Posted

      Did the antibiotics help with your symptoms ? Memory loss?

    • Posted

      Did you find out what caused your symptoms or anything that helps ?

    • Edited

      are you under a lot of stress? ive read so much lately about how terrible stress is for your bringing and mental health. They see that stress can cause memory loss and make you lose focus. I feel that it is a vicious cycle because I’m stressed about my symptoms which makes the symptoms get worse. I honestly feel like each change in environment to get my mind off of the symptoms helps me to feel better.

    • Posted

      Hi.hope you are feeling better ..did you find the reason for these symptoms?did you find anything that helps ?

    • Posted

      Hi!

      I know this is an old thread, but what treatment did you get for lyme disease and EBV??

      thank you!

    • Posted

      Hello did you get any answers as this is like I wrote this myself it's awful I wake up everyday thinking not another day of this and when i tell my doctor they say if you had a serious illness like cancer etc u be dead now and say have generalised and health anxiety

    • Edited

      Hi, has brain fog improved? I've been ill for 6 1/2 months scared senseless. fog, memory, zombie feeling I have all of it many tests but not many answers. please if you have any advice, it would be appreciated.

    • Edited

      hi.. is anyone still on this discussion?.. i need help... i am experiencing these same symptoms i have just had a breakdown.. i don't know anyone else experiencing this stuff

    • Edited

      Going through the same, no answers from anyone yet????

    • Edited

      I'm also experiencing this!! I have a breakdown almost daily over it. So sorry you feel the same way xxx

    • Edited

      Thanks for responding, this feels so lonely...I break down everyday as well. They put me on Ativan twice a day, sometimes helps but adds fog to fog when it wears off. Trying TMS now, with a neurologist hopefully it helps. Hoping for the best for all of us...

    • Posted

      anxiety and depression are symptoms that arise from dealing with the underlying problem but are not cause or root of the problem. get your ANA tested for an autoimmune disorder. they cause inflammation of the brain which in return causes all these symptoms you mentioned .

    • Edited

      From what you have shared, it all seems to be an overload of your senses and the mind. You may not even notice this happening as it could've accumulated over the years or even months. As we sit in a certain mindset, it's not easy to notice how it's affecting us until it all accumulates.

      I strongly recommend meditation and minimizing time with your phone/computer/tv/social media to as little of time per day as possible. Also, keep your smartphone away from your pillow.

      At this time, your mind is asking for you to halt all the negative influence it's receiving. You deserve time all to yourself. In the busy schedule, set the time just for you - quiet, alone time without stimulation of your senses.

    • Posted

      It sounds like this is anxiety related. If I had to say it seems like you spend a lot of time in your head and as a result have dissociated. I'm no expert but the first step in this is to sort out your anxiety and silence your thoughts. After you get your anxiety under control I would recommend, practicing awareness and being completely engaged with whats in front of you. Don't be afraid as I think roughly 70% people suffer from this without realizing it as so many people have dissociated as a result of being absorbed by their phones all the time. Be happy that you're aware of this problem! Start taking the first steps in managing this and work towards overcoming this. Never lose hope and keep on fighting. Managing your anxiety is difficult but the longer you wait the harder it will be.

    • Posted

      Hi. I have been getting flashes of light in my peripheral vision for around 10 years now. I went to an optician and he told me that as I age the jelly like substance at the back of my eyes becomes more unstable and stretches. That is what I am apparently seeing. It started in my early 40s. It does seem more noticeable when I'm outdoors and more active. A sort of shimmering on the outside edges of my vision. He told me it is harmless. Some days I barely notice it and others I seem to fix upon it.

    • Edited

      Sorry, the previous reply was for another thread.

      I do also have problems with feeling very spacey and detached from everything. My memory is terrible too. I blame so much on anxiety and worry I am missing something more sinister going wrong with me. I feel terrible at the moment after the death of my parents and having recently had Covid, I feel shattered. I work for the NHS and am in the process of moving house. Really struggling with daily activities. Feeling dizzy, tired and anxious and having to take a list to the shops for 2 items. Hopefully things will get better soon.

    • Edited

      im with you on all that.. im exact same! need some sort of lift cus feel like my life is a waste cant enjoy it.

    • Posted

      I have the same symptoms as you and went to many,many doctors without getting a diagnosis.

      So far to lessen the Anxiety and to try an minimize the Panic Attacks I try and avoid any situation that may be stressful and drink Chamomile tea.

      It is helping somewhat.

      Still get Panic Attacks but less of them and they don't last as long.

    • Posted

      Hi Dylan, you described it so well, I have the exact same symptoms 24/7 and most of the time it is so strong that I feel like i'm fighting to say conscious, but for me also add to that a sever dizziness and moving sensation 24/7 on top of everything else. I have literarily been to all kinds of dr's and specialists tens and tens of them with all kinds of normal testings.

      (they tell you it's some kinda neuro syndroms in the central nervous system and some say it's pppd and some say enxiaty ) and at the end you're left with ten diferrent opinions and you just dont know what it is , and of course you will have "Enxiaty" if i'm feeling like this 24/7 and it all happened just suddenly over night and never went away.

      but you're saying you've had it for 13 years now , wow, I dont know what to do anymore if this goes on any longer...13 years wow!!

      my problem is that I refuse taking prescribed antidepressants. The last Dr. I saw prescribed me some natural Vitamins and supplements like 5HTP and L-Tyrosine all together.

      had anyone tried these supplements before, did it help with anyone?

      Thanks

    • Edited

      Hi, I know it's been over 4 years, but are you better? If so what worked? Not sure covid got me but ever since a viral infection , I haven't been the same.

    • Posted

      Ive had similar issues for the last 4 years. With all the lifestyle changes i have made i should be so healthy. Nonone can tell me whats wrong.

      The head pressure is one of my 3 major symptoms i describe. I get headaches anf migraines and the pressure is not quite that.

    • Edited

      everything ive just read is me to a T! i cant remember a lot - i use to have good memory as well. it feels like im living life but im not really here? It feels like im in a dream and i dont know if conversations ive had or my memories are real because it all seems so foggy! im so tired all the time - like an all consuming exhaustion. i go to bed early and it doesnt matter how much sleep i get, i still wake up feeling like a zombie. i look around and it feels like the world is moving slower. mine started a couple of years ago, after i nearly died from having a baby. its been going on so long that sometimes i feel like i can cope, but other days like today it just affects my mental health so much i want to cry.

    • Edited

      Hey Brooke, I have been dealing with the same issues as you since August of 2019. It is terrible. I just want it to end and most of the time I just cope with it because I can't even remember how I was before it started. Life just doesn't feel real and sometimes I feel like I'm going crazy. I have gotten an MRI and blood work done and everything is normal. Have you done anything that has somewhat made it bearable? Would love to talk to someone that knows exactly what I'm going through. Thanks, Michael

    • Edited

      Yes this is the part that makes me feel sad, because I do not feel like myself. The only time I get relief from this feeling is when I take an Aspirin. I may have brought this feeling back on by getting into my head this morning, about looking up every day Aspirin use and if it's safe/ok.

      I'm no expert but I am assuming the reason why this feeling persists, is because we are overthinking getting our blood pressure up, and it's causing our stress hormones to overreact constantly. I hate the feeling of not being fully aware or like I'm just observing myself from a place other than my own body.

    • Edited

      I'm so sorry that you have been dealing with this for so long. Aspirin has given me some relief. Are you seeing a therapist?

    • Edited

      ive been having the same problems and although it may be anxiety related, i dont think it's because you are too absorbed with your thoughts because i was super extroverted and had a great life until this happened. i think it is either anxiety or some nutrient deficiency or gut problem. but tell me if u find a cure bc im desperate

    • Edited

      Same here, I am in this constant state like everything is fake, and can't comprehend how my life got to this - Had this 3.5 years after waking up and getting panic attack. Been completely screwed up ever since. God when does it end, it's torture!

    • Edited

      hey! firstly i wanted to say thank you for writing this, this is word for word how i feel! its so hard to explain to someone who hasnt or isnt going through it! for me ive had bouts of "brain fog" if you will since i was 12 but usually they last about a week or two at a push a month. However last march it began pretty much the same as yours, although i havent been through a break up. As the months went on it got stronger and stronger to the point i tried to take me life because i couldnt bare it any longer (highly certain youve probably felt like that too.) a year later its out of control, ive lost my job because of it among other things. Over the past year ive been diagnosed with addisons disease and hypothyroidism and put on medication - the meds dont help at all. i wondered have you have any luck with finding out whats up? or improving it?

    • Posted

      i have the exact same thing but it comes and goes do you do drugs i know this is a weird question but i started having this after a bad trip on shrooms and a different symptom i have but didnt see is being hot all the time and its not like your head hurts but you feel something in there like just quite not right im really happy and sad you have this because now i know im not the only one but i truly feel for you my memory is quite bad but whats worse is how it affects my vision sometimes i thought i was going crazy but idk

    • Edited

      also sometimes my senses go numb or the light is too much or its too hot and i need a cold shower (live in canada btw) so it really doesnt get that hot i find it sad how im reading that it got worse for some people and some people attempted and most have no answers because mine isnt that severe right now but i really do know the pain so i understand what helps me is being distracted from my thoughts because they follow me into my dreams and i think its because of stress im only 16, im failing school, i get into fights, ive had severe family trauma before i didnt care after i did the shrooms ig everything i didnt care about feeling came crashing down on me and i became more emotional but the only thing that bothers me is the feeling around/in my head

    • Edited

      i find planning the day ahead works ik that sounds dumb but instead of me thinking why do i feel like this i stay distracted, cold showers help, the more i read other peoples replys i really think its stress or underlying stress you may not know you have especially if you were someone that used to be ok under high stress

    • Posted

      How are you doing now? Anre you sure it's cPTSD?

    • Posted

      Try the medication Lamotrigine it can evidently cure Derealization so can Zoloft at a high dose.

    • Posted

      hi celia,

      sorry if you have already replied to a question like this but i was wondering how your visit with the neurologist/psychologist went? ive been dealing with the same issues for a few months now with no explanation for them...

    • Posted

      Hi, if you don't mind sharing, i would really like to hear what your findings were.

    • Posted

      hey taylor, i dont know if this is any help but ive recently gone through an mri scan for something unrelated to these symptoms however, theyve found something in my brain called a vascular anomoly, ive done a little research on this and i feel for me and my symptoms which are very similar to yours this is likely to be the culprit! i dont maybe its worth asking for an mri and getting checked out for this?

    • Edited

      It's so weird but something almost identical happenned to me. I was 14 years old and something clicked in my head I was watching TV at home. Suddenly, my perception changed and I felt dettached from reality, as if I was trapped in a bubble within my brain. It was terrifying, I would also see grainy specially with low light (at night), and I had strange a perception of space too, as if the floor was tilted to one side. My head felt heavy, foggy and weird. I felt almost dizzy when I slept and in my dreams I was always dizzy. It has NEVER gone away (I am 33) and I have wished so many times I could be the person I was before and just have a fully normal perception. But I also learnt to live with it, and I eventually accepted that I just needed to keep on and try and think about it as little as possible, otherwise it made it even worse and got me into depression. I've lived a normal life and kept it under control for so many years. The problem is something has triggered it to come back even worse than it was after going trough Covid: constant head pressure, buzzing ears, blurry vision, awful feeling of detachment, disturbed sleep. Whatever it is, probably very deep down rooted anxiety, is always there and seems to come back when you are going through a weak moment. Now I need to go through all the work again to overcome this and get used to the new form and new symptoms.

    • Posted

      I know its been a while...has anything helped? Im suffering from this for almost 4 years and soon to end it all. Any recommendations

    • Edited

      i I am having the same symptoms for almost I am having the same symptoms for almost 4 years. has anything helped you at all I need help ASAP. everyday Monday through Sunday feels the same context of time challenging. I feel like that. please get back to me thanks

    • Posted

      h hello my symptoms are the same for almost 4 years. short term memory loss confusion disorientation the context of time has left me days feel the same. has anything helped you at all I am at my Roads End. Thanks

    • Edited

      I'm having the same issue. I'm 41 now and my brain fog just gets worse. I feel disconnected or high behind my eyes. I have had anxiety since I was a child with no real cause for it. My bloodwork and labs are 100% Since having my son in 2016 is when it started getting worse. I've been trying to find some kind of work from home job I can do that doesn't require talking to people on the phone. Its been rough for me.

    • Posted

      i know its hard but i find with me the more i think about it the worse it gets, this week i find its only coming for short periods of time as ive set daily things to do, go for a walk go to town & so on. i find when im just at home & bored its 100% worse, now i no setting daily tasks is scary & you wont feel like you want to, but i feel a distraction works for me.

    • Edited

      i get this thing with temperature too. for 15+ years i've had this thing where if i get to hot i start to disassociate. i've always gone back to this outside of my body feeling when my head starts to feel "weird" or foggy. And lately i've noticed when im hot i get really bad anxiety like i'm scared it will happen again and the anxiety brings on the forgetfulness and fear.

    • Posted

      Hi, based on your symptoms, it sounds like you could if had Covid

    • Posted

      I agree with you 100%. I have the exact same symptoms and blame it all on anxiety. I know there is something more going on and they cannot find i. Have you had any luck fixing it?

    • Edited

      Hi Taylor. I'm Michael from Sydney. I have all of your symptoms. Do you have incredibly vivid dreams? I'm trying to piece the two together.

    • Posted

      I have this too Stephanie. And when it happens during a hot weather I can explode into sweats. I can't stop it because I can't just ignore it. When I notice it starting I would then get very anxious and it's a domino effect that ends with me looking like that Jordan Peele meme but in real life. And the lady behind the counter waiting for me to tap my credit card is left wondering if I stole something out of the shop. I'm innocent I swear. But my my sweaty forehead says otherwise.

    • Posted

      Was curious if TMS helped? In a similar situation have no idea what to do.

    • Edited

      Do you feel like your brain has almost gone numb? Maybe it feels like its only half processing things? Even your sense of touch becoming weird? These are all things im experiencing and I'm still terrified. Even though I've just been told it's just anxiety it feels like something is wrong.

    • Edited

      feels so much more than anxiety.. feels like my brain is shutting down.

    • Edited

      Hi! this forum describes all my symptoms exactly and I have very vivid dreams! so vivid that sometimes I almost cant tell the difference between a dream and a memory because my short term memory and sense of time is so shot right now. very disturbing feeling to say the least

    • Posted

      my 15 yo has this too - low grade fever and everthing - we cant figure out whats wrong w her

    • Posted

      Hi. I found this forum and finally feel heard. I am SO down to be a part of a group that tries to find a Dr. who will listen to all of us and research all of this. I'm at a point that I don't know what to do anymore. I'm a high school teacher and my entire life, work included of course, is being affected by and unfortunately controlled by these symptoms. It has me feeling so sad bc I miss the old me. the normal me. I'm going soon for an MRI my Dr. ordered and the stupid thing is...I'm afraid of it NOT showing anything, therefore continuing this horrible, answerless journey.

    • Posted

      hey man are you ok because you're not alone.

    • Posted

      I literally have all these issues and do you wanna talk about it i know it would help me.

    • Posted

      I have had the exact same symptoms as you! have you buy any chance taken finasteride?

    • Edited

      Hi - looks like I've also foggily stumbled in to this little commmunity! Wow, what a relief. You've described everything I have been experiencing but feel I can't even formulate into words to describe it to anyone, including doctors. The dreams/nightmares that seem like a part of my actual day and I have a hard time differentiating has been the hardest for me to articulate. I remember every vivid detail of them. And it feels like when I list all these other symptoms, it's chaulked up to common ailments (anxiety, depression, stress, etc...) but I think we can all agree there's something freakily abnormal about it. Every time I go to my doctors, he sends me for the same boiler plate blood work that he's done a million times, like what does he expect will change? Vit levels are fine (b12, d, ferritin, and so forth). Nothing really off about any of them. I've forced more tests like ultrasounds, allergy testing, mri's, autoimmune blood panel, cortisol testing, insulin resistance tests, and more extensive hormonal blood panel. It's to the point where I'm so afraid by whats going on, and feel so unheard by medical health professionals, so I say nothing and wouldn't know what to ask for next. I'm sorry to hear there are so many individuals struggling on this thread, I wouldn't wish this on anyone and certainly feel for you all. It's caused quite a downward spiral in my life currently (24 myself). Although I'm now seeking out psychotherapy/neurofeedback not because I actually think its psychological, but to say I at least tried in order to rule that out. I've struggled with anxiety/depression as a tot and thought in my earlier 20's (19-21) it was getting better. Have tried going GF, vegan, sugar-free, no caffeine/alcohol - nothing. It's hard to explain, but it feels like my mind is hopeful and wants to do things underneath this actual physical force that's enveloped my body. I can't cognitively perform like a human being, people in my life have asked if I'm doped up on something but I've never taken recreational drugs. On my bad days I can't recall the time of year/year itself, why I am where I am (like where I'm living), I feel like my family are familiar but not connected to them like they're actually my relatives. Fever, debilitating fatigue, blurry eyes, in the twilight zone, like it's not really me left. Can't follow conversations, I'm slow/slurred, can't capture information from my brain. I truly feel this will kill me before I'll ever know. Hope you're all doing okay, I'm here to chat if anyone wants to discuss or ask questions.

    • Edited

      Also wanted to note that I get joint pain/swelling/redness, restless leg syndrome, and other chronic pain complaints (rheumotologist claims nothing could be wrong at my age and my blood work for lupus, RA, and everything was within normal range). I feel my face gets quite flushed sometimes, periods of sweating/heat (hormones are normal). By far weirdest thing has been these dreams, can't possibly describe it to someone who's not had these.

    • Posted

      I also have had all of the above symptoms plus more for some years. Been trying to get through it but it is really hard. I also started having gut problems so i had an endocsopy done. Turns out i have a bunch of stomach ulcers as well. Anyone else have any gut problems or seen a GI as well for anything. Doc was saying it resembled mild crohns.

    • Posted

      not everyone will understand this post but I have a strong faith in God and i pray and all that stuff. Theres definitely a spiritual aspect to this illness thats plagueing us. I started to connect the two when i began to have those dreams. Very wicked and almost demonic dreams. one time i was stuck in a dream loop almost like the movie inception where theres a dream within a dream. I went thru that like 5-6 times before actually waking up. Anyways my advice would be to start praying and connecting with God or whatever faith you follow or have. Ive been taking some herbal supplements and they seem to help my body fatigue a little bit but other than that its been pretty constant for the last few years for me and trying to get anyone to understand seems like a lost cause. Glad i found this forum so i know im not alone!! Keep fighting guys i definitely think its anxiety related and can be triggered by negative thoughts, stress, drugs, etc so be sober and vigilant!! Love you guys.

    • Posted

      are you bloated all the time? i had to get an endoscopy done and my findings resembled mild crohns disease but the meds they prescribed haven’t helped that much. only really with the bloating but not the General fatigue or muscle and joint pain.

    • Posted

      So guys I developed these symptoms when I was 17 and now I'm 20, is there any chance it could be some sort of early dementia? And is it possible to have symptoms of dementia in my 20s??? I feel the worst right now, I might end it soon.

    • Posted

      I have symptoms very similar to what you and others on this forum have described, my own symptoms beginning in childhood and progressively worsening as I entered adulthood. What I wanted to say is that myself including others here do understand the struggle that you are going through. A life with these symptoms is hard, and the daily struggle can feel heartbreaking and lonely at times. But however bad the suffering perseverance is worthwhile. There are many avenues to explore, and even when you feel like you've exhausted all your options there are likely others you have not yet considered. You do not know what the future holds and medical research is accelerating at an incredible rate. Remembering this is what keeps me going. So no, please don't "end it". You owe it to yourself and others to stay in the game. Take care.

    • Edited

      These questions stuck out to me -

      "Does it get worse when you drink coffee?

      Does it kind of almost help when you drink alchohol? But get worse the following week?

      Do you think about it alot?"

      This is spot on for me, and the answer is yes to all.

      And caffeine is a major trigger on its own, but it's especially overwhelming when I take drink coffee/other caffeine drinks the following several days after alcohol consumption. The during of drinking alcohol is fine (like you mentioned) but the aftermath seems to also be a major trigger. But the odd thing is that it's not all the time, or every time. There doesn't seem to be a rhythm to the episodes, even considering same triggers. Sometimes episodes happen with triggers, and other times they might not, or the severity is much less.

      To try and explain my situation...

      What I am going through is similar very (if not exact) in symptoms, but it is not necessarily a 24/7 affliction. To try and best describe, it's always there (or seems to be always there) but at the valleys it's completely manageable or an unnoticeable/normal-feeling at best, whereas the peaks are extremely disruptive and flat out scary, and exactly in line with what I'm reading here. I've just recently (this week) had one of the worst episodes to date - been dealing with this off and on for about 12 years now (I'm 36). The added symptom to this latest round was an actual physical tingling in my brain, in the temporal lobes mainly but also in the prefrontal cortex - not painful, but just tingling.

      I am now actively trying to diagnose and pinpoint any underlying issue. The episodic nature would only lead me to believe that something is triggering it when it peaks - which of course I could be completely wrong, but it seemed to me like a logical start. I'm wondering if a complete detox would help reset the baseline.

      Jayocaine - can you avoid these symptoms by not drinking either alcohol or coffee altogether? An all out detox will be my next step, because it's something I can control without doctor visits.

      In parallel I did go to the doctor just today for it. They drew blood to test, and it looks like they want to do a CT which should happen next week. I'll note that I did a blood test (unrelated to this issue) in Feb and everything looked completely normal. So I will say, I am not expecting this upcoming round of blood test results to tell me anything different - meaning I don't expect to pinpoint the issue from those results. I'm sure you all might have already heard this one too but my doctor is interested in looking further into thyroid function as well as vitamin absorption issues.

      Just found this thread and wanted to add to it as I am experiencing the same things. I really hope there's a cure or relief out there.

    • Posted

      That is exactly what i have. Along with vision out of focus, bad memory,.. Please reply back and be a part of this thread.

    • Posted

      Something is wrong i have the same symptoms along with vision out of focus and bad memory. It's been for 15years.

    • Posted

      For 15 years my life has been like this.

      One August day i woke up feeling a little sick, pressure in my head, little fever, vision out of focus.

      It never went away except for the fever.

      My brain feels like it has some shield around it, my head feels heavy.

      Vision constantly out of focus and bad short term memory.

      Before i was the healthies man alive. I would drink and do drugs no problem.

      Never had a hangover. Now the hangovers are crazy.

      15 years and this is here 24/7.

      I've done all medical researches, nothing.

    • Edited

      I'm having this for 15 years now. I'm 33.

      One day i woke up and had these symptoms.

      The main thing is like a shield covering my brain.

      Heavy head, fatigue, memory loss, vision out of focus.

      Doctors: nothing.

      Stay here please, let's find what this is about together.

    • Posted

      do you suffer with dereslization and depersonalization? feeling something is going to happen?

    • Posted

      Yes for both but i don't understand what do you mean with something is going to happen?

    • Posted

      feeling so crap, feel like my body is giving up on me.

    • Posted

      A lil bit different i think. Can you explain everything from day 1?

    • Posted

      so much to explain, i was perfect up to about 10 years ago, all started with stomach issues and then woke up one morning and felt odd, i feel constantly tired never refreshed when i wake in the mornings, brain fog, headaches(not all the time) doctor is treating me for B12 every 3 months i get injections but feel it isnt enough, some days im normal/ok and others then im weak tired anixity goes thru the roof,boat like feeling when im walking! and just feel out of it, sometimes ive floaters in my eye sight,, ive had mri scan all clear only thing that was noted was my tonsils are larger than normal. i also suffer with IBS

    • Posted

      Do you have bad memory? Worse conversation ability? Vision out of focus?

    • Posted

      Ngl, I can relate to the symptoms so much... almost scary to what extent

      Extreme brain-fog, a zombie-like state often coming with a numbing-like headache in my forehead... sometimes just struggling to focus, having short term and prospective memory issues while my "forehead" feels numb... as if there's something slightly sqeezing it

      When it gets bad I find my thoughts quite literally overflowing, looping constantly... thinking of the same thing several times over as if forgetting that I already thought of that. Forgetting what action I took 6 seconds before

      My vocabulary noticeably shrinks. I tend to forget even simple words and pause in the middle of conversations trying to remember

      My memory is just terrible... although I remember bits and pieces and usually know what memory someone is talking about when they mention it- remembering it without external stimuli is generally hard

      I don't know if that goes for you as well but at least for me this "state" does have triggers. It has always worsened during summer, especially when I wasn't required to think. Similarly to when watching dumb movies... As if totally relaxing and turning my brain off for 2h to watch a movie caused access to some sort of brain areas to get restricted. After watching (bad) movies I often found myself unable to focus, with bad, numbing headaches lasting up to 2 damn days after I've watched the movie... I never found it normal though wasn't able to make any sense out of it

      Excercise does seem to help... sometimes... sometimes I feel exactly no effect

      Usually when fully in a zombie state, I feel myself sort of lacking control... as if in auto-pilot mode... where I technically control my body but at the same time the movements feel somewhat weird... mechanical? just not quite as I wanted them to be

      along that I feel access to my desires being somewhat cut off. I remember my reasons for wanting to do something but no matter how personal nor emotional those reasons were to me, I won't be able to recall nor really FEEL those emotions then. Threatening myself with my deepest fears (abandonment, failure, death, neurodegeneration) has always yielded no result... My previously highly emotional thoughts just fail to get ANY reaction out of me

      I've also noticed myself lacking emotional access to some of my traumatic memories (as if I remember the facts but the emotions linked to them are just not there) and my perceived relationship with my parents changes depending on how brain-dead I am (I usually love them more when zombified 😕 )

      Though I don't know whether that's the cause or result of a medical condition.

      I've gotten a suggestion of this being OSDD 1b as apparently the lack of control, emotional amnesia and autopilot mode are eerily similar to what people with the disorder experience when co-fronting... though frankly, I'm not convinced.

      I'm only starting to get it checked right now... Might take several months until I get anything done (unfortunately, the medical care in my country isn't that great and I don't have money for private one). Though yeah, I'm just saying hi : P

      Glad I found this thread

    • Posted

      It's likely anxiety and depression. Also could be unresolved complex ptsd from childhood trauma (this is far, far more common than people think).

    • Posted

      This sounds like complex PTSD from childhood trauma + anxiety/depression.

    • Posted

      i wanted to chime in and say thats not the specific cause. it can be a cause but its definitely not typically. multiple issues can be. I thought mine was due to anxiety but it has to do with my schizophrenia that causes my dissociation. The fact I change my thoughts and emotions. ptsd can also contriube to feeling that way. Just want to state that before everyone automatically thinks its depression or anxiety. it can be a more serious illness. Anxiety is more worrying. you cant feel anxiety if you're zoned out unless you manipulate yourself to which would be a coping strategy

    • Posted

      Normal dissociation is but not extreme. Thats apart of my schizophrenia its def not just from anxiety or depression. Nor do normal people dissociate 24/7 or else they wouldn't be able to work and drive. or have friends. when in reality most the world can do those things easily.

    • Posted

      Id check into schizophrenia. Its not just limted to hallucinations. Or ptsd as a coping strategy. if you have no trauma it could also be an OCD symptom. Like if you think the same thoughts over and over or get depressed that you dont do a certain thing every day. Anxiety can cause you to go into it but its not a part of anxiety its more a coping mechanism kind of how multiple personality disorder is. everyone copes differently. but for my schizo I feel like im changing my brain when I dissociate I feel like im emotionless 24/7

    • Posted

      kinda strange you mentioned your tonsils are big because mine are too. had to get them removed because they blocked my throat and I experience the same symptoms but mines through schizophrenia

    • Posted

      I am also suffering the same thing i have also started to have difficulty in rembering what happened few days ago but i do remember some details tho and body also feel so tried if i join my together with my fingers interlock my fingers will start to pain it is quite hell

    • Posted

      i have been suffering from the same symptoms except I fall asleep, or I guess loose conciousness ? While driving. I say that with a? Because I don’t really know what happens. I just know that I end up somewhere that I have no idea where I am or how I got there and I wake up from it like I was asleep or something I wake up in strange places and have no idea how I got there. I was driving 3 miles with GPS on when I was out of town and ended up coming to in the middle of nowhere with my car in the side of an old building, but not crashed. I was freezing my car was dead meaning I was out for a while, and I was 54 miles away from the destination in my GPS, which was only 3 miles my phone was dead. Everything was dead. My doctor thinks it’s absent seizures, I’m currently seeing a neurologist which, as most of you know, takes a while to know anything they put me on Keppra, but it doesn’t do anything at all. It also doesn’t explain my loss for words or the ability to get the right words out when I’m trying to speak , it’s like my brain is a jumbled mess. My boyfriend is notice me moving my lips as he speaks like I’m trying to repeat him but I’m not saying anything outloud. It kind of freaked him out I thought narcolepsy. But that doesn’t explain the rest of this. This has been going on on and off for years and I’m so tired of feeling like I’m out of my own body almost I can hear the words coming from my mouth and it doesn’t sound like me and it doesn’t make any sense what I say half the time, I just don’t understand why there are any answers. I would love to know if any of you have found something to help or had a diagnosis that was helpful. I have a sleep study another MRI and I saw somebody who I honestly had no idea why I was sent to see him, which was disturbing . Repeatedly asked me if I had a head injury at any time. If you asked me what I did this morning, I wouldn’t remember if you asked me what day it was I wouldn’t know if you ask me what year it is I’d likely tell you the wrong year. I just want to figure out what this is and make it stop. I would love some insight from any of you y’all seem like the only people who would understand.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.