Brain fog, dizziness, vision problems, head pressure, headache PLEASE HELP

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Hi everyone!

I don't know where else to go, and was hoping someone could please help me. I'll start off by saying I'm a 23 year old Caucasian female. Going on 5 months now, I have had absolutely debilitating symptoms which have hindered my daily life. I feel these symptoms every moment of every day.

It started with dizziness and a persistent brain fog. I just thought I had a bug, and tried to go on about my life. However, my symptoms have never gone away. This "brain fog" I am talking about is a feeling of complete mental confusion, I have no memory, I cannot concentrate on anything, it feels like there's a dark blanket on my brain clouding all my thoughts. I have extreme disorientation and haziness. I feel like I'm always in a dream like state.

I am constantly dizzy and feel a pulling sensation, as if I'm ready to fall over at any moment. It feels like there's air inside my head, and I'm always very lightheaded. Whenever I try to drive I feel this pulling sensation pulling me down.

Another problem I have is with my vision. I am having very blurred vision and have double vision. Everytime I look at something up close it is extremely blurry and I cannot see at all. My perception on things has completely changed. I feel like everything looks very odd and strange and I don't have the right depth perception. It's like I'm in a horrible dream like state all the time.

I have been having headaches and head pressure as well, and having horrible pains behind my eyes. The pin starts from the back of my head close to my neck and continues up my head and the sides of my temples. My eyes hurt so bad, and it feels like knives are jabbing my eyes. My head also feels extremely heavy all the time.

All these symptoms have been causing me severe anxiety, and I have been having panic attacks from them and feel like I'm dying. It is causing a strange disrespity sensation, where I feel like I'm not even here anymore and there's a detachment from myself and my body. I have had to drop all my classes at college and quit my job because these symptoms make me lay in bed all day long. I have been unable to drive for months and can barely get up to walk around. If anyone could please help me or know anything as a suggestion to try.

I have been to my general doctor, 2 ENTs, 1 neurologist, have had 2 MRIs, a hearing test, VNG, multiple blood tests, and no one knows what is wrong. I can't live like this anymore. Any help is greatly appreciated.

-Elise

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  • Edited

    Sorry to hear that but my headaches started from dizziness as well and now i have both of these every single day. 

    Not to mention the brain fog which accompanies it is really a pain.

    What are you taking now?

    • Edited

      I am currently not taking anything because every doctor has told me a different possible diagnosis, and refers me to someone else. So no one will prescribe me any medication. Is there any medication you take? How long have you had these symptoms? I went to the ER a few times and they gave me a 10 day prescription for meclazine but it didn't help at all.

    • Posted

      I have daily dizziness, headaches and brain fog for almost 4 months now.

      I have seen countless doctors and im now on Amitriptyline daily.

    • Posted

      Have any of the doctor's told you what they think you may have? Does the amitriptyline help at all? I'm sorry you're going through this too, it's horrible.

    • Posted

      Also, have you experienced any of the strange visual symptoms I described?
    • Posted

      Hi Elise,

      I sometimes have pressure feeling above or behind my eyes too.

      Amitriptyline has helped to a degree i think. Drinking coffee has somewhat helped too.

      My neurologist says i have tension type headaches but he can't pinpoint the cause. 

    • Posted

      I'm so sorry that's so frustrating you can't pinpoint the cause. Are you seeing any other specialists?

    • Posted

      I will be seeing another neurologist next week to get his/her opinion. 
    • Posted

      Hi everybody I'm Sherry I also suffer from extreme dizziness headaches child pain exedra I've had this 24/7 for 8 years now and the only thing that has helped the dizziness is Valium it has really been a godsend for me and I also noticed sometimes when I have a bad dizzy spell that is like I can hear the wind blowing through my ears and my ears feel stopped up I feel weird I can't describe it

      Also on top of that suffer from panic disorder which I'm sure is the is why the dizziness is there but I can't imagine it's been 8 years already 24/7 I mean is it here to stay

    • Posted

      If you have been exposed to aspergillus or stachobotrus black mold, they can cause an allergic reaction that can lead to chronic inflammatory response syndrome. The inflammation will cause the intraocular pressure in your eyes to go up, which will lead to photosensitivity, blurred vision or double vision. If the intraocular pressure is high, then at night you won't be able to close your eyes all the way, which will lead to the cornea of the eye becoming dry. You will wake up feeling like someone has thrown sand in your eyes. You then need to replenish the moisture in your eyes. It can also cause the intracranial pressure to elevate. This will restrict the brain from absorbing the necessary nutrients needed to function. The brain uses cerebrospinal fluid. With the inflammation, what the brain doesn't use can't be reabsorbed. This will lead to an elevation of intracranial pressure. I understand what you are going through. My doctor continues to tell me that it is just allergies. Internal inflammation will hinder the kidneys from filtering properly, which will allow your creatinine level to elevate. It can also hinder the liver from properly filtering. I hope that each one of you can get your health back on the right track!

    • Edited

      Hi Allyson, have you found any relief yet?  I think I have been constantly exposed to mold for this entire summer. I have all the symptoms mentioned here and bouts of shortness of breath. My doc prescribed prednisone but she wasn’t able to come to any conclusion but just wanted to quell the symptoms for the time being. Although it helps with the breathing, the dizziness and the fatigue and fogginess is still there. I was wondering if you’ve found a way to manage the symptoms so the daily struggle is a little less painful. 

      Also do any of you know of a group on facebook?

    • Posted

      I had eye laser to release pressure behind my eyes .
    • Edited

      They are not gonna prescribe you anything because you have nothing. Moat likely they will give you relaxers everything going on with you i usually get and the more you think about it the less you sleep the more tired you will be everymorning and dizziness wont go away. Its all in the mind dont stress you are too young and the worst mistake you can make is reading google lol trust me your gonna be fine ive been like this for about 6 years now if it was something more serious i wouldnt be writing to you right now lol hope you get better excersise and have fun try getting into sports of a hobby.........
    • Posted

      Hey max I know this is a year old but first of all how are you doing now? And I have been getting same things aswell. I get dizzy a lot and feel my head hurt all around and my neck like it’s being grabbed and wanting to get pulled down and my vision feels weird kinda like it’s blurry and also when I get up I get dizzy and some pressure in head feeling heavy and gives me anxiety which I already have. Last night I was falling asleep and I saw like flashes of lights while my eyes were closed and it rally scared me do you know what it is?? Please help
    • Posted

      Hi  Andy,

      I have the same symptoms, I have been suffering with for a year now.

      My symptoms changes all the time every week every few days , I gets different symptoms which makes me so crazy.

      I have see so much doctors Neurologist, ENT generalist GPS etc ... all saying nothing to worry but some saying it could be Magrain or panic attacks.

      Neurologist said you need to see psychologist blamed on anxiety( may be).

      Now I get my head very tights and pressure follow by dizziness.

      I have few hospital appointment next few weeks we will see?

      I hope any one have diagnosed and tell us regarding their experience.

      I wish you a quick recovery.

      San 

    • Edited

      Elise, have you found any relief yet?  I came across your post a few months ago when I was going through the same exact thing.

      In January I suddenly felt a heaviness and pressure in my head accompanied by a headache, tinnitus, a spacey feeling, and brain fog.  All of these symptoms were constant, and never let up.  I originally thought it must be some kind of sinus issue, but I couldn’t shake it.  I ultimately had three CT scans, an MRI, every blood test possible, saw an ENT, an optometrist, and a neurologist.  Everything came back normal, and I felt absolutely hopeless.  I was having trouble living my life, raising my kids, working out problems, and driving was especially difficult.

          I ultimately ended up seeing a chiropractor, who told me that I have a reverse curve in my neck (It should be 45 degrees, and mine was a -1).  I spent several months getting chiropractic adjustments several times a week, and slowly but surely, my symptoms started to diminish.  The only symptoms I couldn’t shake were a mild pressure and spaciness.  That’s when I heard about Craniosacral Therapy from a friend.  When I researched it online it sounded like medical poppycock, but I was willing to give anything a try.  I couldn’t believe it, but it actually worked.  It took away all the pressure and spaciness, and while I need to follow up with subsequent treatments, I feel like I am finally on the road to a complete recovery.  I’m not an expert on how it all works, but apparently the skull is made up of several bones that are supposed to fuse together after you are born.  The theory is that they do not completely fuse, but move slightly as brain fluid flows.  Sometimes, one of these bones can get stuck or is in a position that causes it not to move properly.  This therapy helps put it back into place.  It is usually performed by a massage therapist or osteopath.  

          I hope this can help someone out there.  I know when I was suffering, there were so many people on these forums that felt hopeless, and so did I.  If anyone has any questions for me about this, I am more than happy to help.  Between the chiropractor and craniosacral therapy, these are methods that are not generally even mentioned by a regular doctor.  Please please please give it a try, I am confident that many of you can really benefit from this.

       

    • Posted

      Hi Jennifer,

      Thanks for sharing. 

      Did you do anything specifically when your symptoms started? Mine all started after an antibiotic I took in February 2017. I have had neck/back issues for many years though too. Did you ever have any dizziness/disorientation? I have had all your symptoms but also lots of lightheaded/unsteady issues, as well. 

      I was actually under Chiro care during the time mine all started, but had been for years. I actually have stopped all physical modalities until I can regather my thoughts on what will be my next step. What kind of therapist did your craniosacral therapy? I actually tried it once a couple months ago but felt like my symptoms actually flared. It seems like all physical modalities do that to my sensitive system now. Did you find relief after just one treatment? What did it involve? The lower back of my head has been super tender constantly and so when the CS guy was pushing on that area, it just ended up hurting more, and I felt more spacy hours later! As far as neck curve, I’m not sure if mine is reverse.. it’s straight where it’s supposed to be curved. Is yours different? 

      Thanks for all your input! 

    • Edited

      Hi Bonnie,

      I am so sorry to hear about the struggles you are having.  Here is what I can tell you about my situation:

      The day before my symptoms started, I had driven a fairly long distance to meet with friends, where we bar-hopped for a good portion of the day.  This is not something I normally do, and while I will have a drink here and there, I don't ever drink all day.  In addition, I have always dealt with hypoglycemia, so when I do have a drink, I make sure it is low in sugar (which I did not do that day).  I initially thought what I was experiencing was a hangover, but it just never went away.  So originally I was going in with the thought that it was somehow related to my adrenals, but now I'm wondering since I've responded well to the chiro and cranio therapies if it had to do with the long car ride.  I am short, and the head rest always pushes my head forward into an awkward position.  A couple other factors that I now think contributed:  I have always been a stomach sleeper, which now I know is terrible, and I slept with TWO pillows.  Also, I suffered a concussion last summer.  My theory is that my neck was very messed up and maybe the car ride just pushed me over the edge.  The "reverse curve" that I have is essentially a straight neck that is just slightly curved in the opposite direction from which it should be.  

      Ever since I started with the chiropractor, the base of my head has also been very tender and uncomfortable, which I've attributed to it trying to adjust back to where it needs to be. 

      For the craniosacral therapy, I saw a massage therapist.  I will say, the first day my symptoms felt worse, like I was spacey beyond belief.  But it was the next day that I noticed I was markedly better.  I felt great for about a week, and then the pressure set back in a little bit, so I went in for a subsequent treatment.  The therapist told me that this would probably be the case, as the bones she realigns want to navigate back to the position they were used to.  

      I have dealt with lightheadedness my whole life, most likely from the hypoglycemia, but I haven't noticed it getting any worse since I have been having the other symptoms.  It is just the spaciness, which I feel like causes some disorientation especially when I'm driving.  I had noticed that the pressure and spaciness were the worst for me when I was either driving, conversing with someone, or trying to solve some kind of problem.  Basically whenever I had to focus.  

      I hope this helps a little bit, please let me know if I can help any further! 

    • Posted

      Hi Jennifer ,

      Thanks again. I can totally understand and resonate with your thoughts and reasonings on your symptoms. I am pretty sure my neck has something major to do with mine as well!! I am also kind of nervous that maybe some chiropractic care I’ve had over the last several years has done me more harm than good. This may be due to the fact of moving and working with several different chiropractors And different methods/techniques, some which may not have been right for my body issues. Now I just have to figure out who to work with that will actually help my issues. My neck curve problem is the same as what you’re explaining!  What type of chiropractor are you seeing and what technique do they use? Also,  did the massage therapist you saw specialize in craniosacral or did she have additional certification for it? Im having trouble finding someone, and would rather not go back to the person I once saw. I’m glad you found relief the day after your appointment. I didn’t seem to have that experience, but I’m willing to try a different therapist! 

      I totally understand what you’re saying on the focus issues, it’s one of my worst symptoms! I feel so “out of it” and spacy/foggy that it’s hard to focus on anything! When do you go back to get another CS treatment? Have you just had one? 

    • Posted

      Haven’t commented in a while but thought I should mention that I had a very similar experience. The day before my symptoms I had been drinking heavily and I blacked out on the train ride home. Missed my stop a went all the way to the end where I was freezing and had no way of getting home as it was 3 or 4 am. Around 6 am I finally got on the train and  I remember when I woke up my neck was in a very bad position and I felt a tight band around my head ,numbness in my face and my fingertips were tingling . I knew it wasn’t a  normal “hangover” but the worst part about it is I had to go straight to work for 10 hours in that state. It’s a miracle that I survived that but here I am today all messed up . It’s been 2 years ...
    • Posted

      Hi Bonnie!

      I just had another CS treatment today!  As before, my symptoms feel a little worse today, but I am counting on them to feel better tomorrow.  I will let you know smile  The therapist I see specializes in massage and "wellness", and she has a separate certification for this.

      One thing I wanted to mention to you that I saw on another forum a couple months back:  There was a person posting that described all the same exact symptoms I was having and suffered for several years.  He tried everything, but nothing worked until he went to the headache clinic at the University of Michigan.  He had a nerve in his neck that they needed to "kill" because it by itself was causing all of his problems.  Once he had that done, he felt completely better.  I'm wondering if I found relief from the chiropractor because my nerve was simply getting pinched, but maybe yours has had more severe damage?  I'm not sure what kind of doctor you would see about this (a neurologist maybe?), but from everything you said, it sounds like that might be the answer!

    • Posted

      I am so sorry to hear that!  Have you tried any sort of chiropractic treatment?
    • Posted

      I'm sorry sweetie but sounds like a parasite it can cause these symptoms but you can check for brain cancer is only two that can cause this but parasite is most true based

    • Posted

      Hi I was reading your story my symptoms are the exact same as elise93 it all started when I was drinking real heavy and I’m not a drinker I woke up from a bad hangover and it seems it just continues and never went away for me and that’s when the brain fog started behind all the other symptoms here I am a month in a half later and I still feel so horrible I’m seeing a doctor and hope for answers one day so far they have ran some bliss test even a ultra sound on my stomach and nothing I hope I get answers soon 
    • Posted

      Hi I am one of those who is sufferening from all the symptoms elise93 is going through I found this site on google and just kept reading so many people have so many story’s but of course we just want answers I’m glad I came across your story I’m willing to try this and look more into it I don’t know what else to do since my doctor says I’m fine with all my blood work and even a ultra sound on my stomach  now she says I have a UTI and I need to take my meds maybe I will feel better but I’m done and nothing is better next step is checking my ears I really do t know what to do anymore I want my life back .
    • Posted

      I am so sorry you are going through this, it is so frustrating and makes it so hard to live life.  I had my ears checked and everything came back fine.  From my experience, my suggestion would be to see a chiropractor or an osteopath and see if it may be some type of pinched nerve.  While I am not 100% yet, I have seen much improvement since going, so I'm convinced this is the problem.  The problem is, almost no regular doctor will tell you this or to go see a chiropractor.  The only other thing I've seen that I have not investigated is a possible virus that I can't shake.  But I have had every test possible and everything comes back normal.  I hope this helps a little, best of luck to you and don't give up!  The biggest lesson I've learned in all of this is that you have to be your own advocate, do your own research, and keep digging smile

    • Posted

      Thank you for your response I atleast know thier is some hope out there because it’s been the most hardest month in a half  of my life some days are better then others but the worst days I feel so hopeless and I’m never gunna get better , I read other stories and see how long they have been dealing with the exact same symptoms I don’t know how they have been doing it for so long I just want answers and anything helps to try and look into I’m glad I found this site also to look deeper into things because my doctor just looks at me like I’m gunna be ok but clearly she doesn’t know the feeling of living life this way . But I’m just gunna see about my ears which is her next step and I’m more then sure my ears are fine considering every other test she has done all comes back normal .
    • Posted

      Hi Sherry,

      I too have similar symptoms, I have been to ent DR, performed 3 tests found nothing wrong. My personal DR asked me to control and manage the dizziness.

      This is what 1 do 1-2 times a week:

      -Nasal spray(prescribed by DR)

      -ear wax spray , over the counter/

      -Sinus rinse pot and saline

      -occasionally Dramamine for dizziness.

      Good luck

    • Posted

      Hi Tony,

      Does it work for you.

      Please let me know.

      I used Avamys spray in the past but makeshift my nasal very dry and I cannot really say it works.

      Sterimar occasionally to clear any mucus.

      PLease let me know thanks

      Sab 💐

    • Posted

      Hi jennifer,

      I have had pressure in my temple that is so overpowering it is extremely hard to concentrate. This has been going on for about 3 years now. I don’t even feel like a person anymore and it really takes a toll on me. I’m tired of breaking down about it and also faking that I’m okay to everyone including my loved ones. I’ve had so many test done and everything comes back normal. Everything I go to the doctor now I feel so disconnected with the doctor because of the lack of understanding I get from them and I always leave angry. It feels like they don’t care about me. I’m only 22 years old going on 23 and I can’t feel like this anymore it’s almost unbearable. Makes me feel hopeless. If you can give me more info on the therapy that you used to lower the symptoms it would be much appreciated! 

      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.

    • Posted

      Hi ajamaez!! I’m so sorry you’re dealing with this too. sad what symptoms do you have? are you able to drive?
    • Posted

      Hi Bonnie, sounds like I am in the same boat as you.  I am dizzy, brain fog, disorientated.  I have seen ENT, Neuro, and a Chiro.  With no luck at this point.  When I seen my Chiro he told my vertabrae 1 never fused together also my neck is not curved it is straight as well.  I only did 2 adjustments with him as I didn't want to make matters worse.  

      Do you finally feel better?  If so what helped you out.

      Thanks

      Aimee

       

    • Posted

      Well after dopplar ultrasound on my veins, a 72 hour EEG and a 30 minute EEG they still have not found anything that could be the cause of my dizziness...  Neurologist did suggest a low dose (10mg) of Amitriptyline to help with migraines.  However the whole point of this started when my ENT suggested I see a neuro doc for vestibular migraines.  That she thought I was having dizziness from a vestibular migraine even though I was not having paid with these migraines. 

      So I ask my self if I don't have pain with the migraines how will I ever know if this new medicine even works.  Other than that she suggests I start back at my General Practioner.  

    • Posted

      Aimee, tried to reply but it doesn't appear to have posted. Anyway, sorry u were unable to get a definitive answer. But FYI, vestibular migraine does not necessarily involve pain. There are even other types of migraine that mimic stroke with no head pain. My mom gets those. I would give the amitriptyline a try for a few weeks. It is used for migraine associated dizziness.

    • Edited

      Aimee

      i am going thru this too.  I have been diagnosed with several things before being treated for vestibular migraines.  I was prescribed a low dose of norotriptiline.  And my head started to clear.  So pay attention to being able to focus again.  You may not feel the headache with this disorder.  Or your head may start to clear and you may realize that you have had headaches.  I saw the director of the vestibular clinic in my area on Monday and he increased my norotriptiline.  He said that once we find the right dosage it will reset my brain and I will come off the meds.  He gave me a list of migraines triggers.  So don’t lose hope.  It’s positive you were prescribed this.  Have you found a specialist in vestibular issues?  Because this dr. Knew so much versus the neurologist who told me I just might be disabled forever.  My ENT is the one who prescribed this med thank god for her but she admitted that we were going out of her expertise.  So she got me an appointment with this amazing doctor.  Keep fighting, keep pushing, keep seeing new doctors until you get that one that knows exactly what it is.  If it’s the migraines, these meds can fix it. I was so relieved when he told me this wasn’t forever, just a reset.  He said hormones, diet, environment can trigger this entire thing.  Look up dizzy clinics in your area. This doctor is aOtolaryngologist.  Try to find this. And take the amatriptiline.  If this doesn’t clear your head after some increases ask to try norotriptiline.  

    • Posted

      Thanks, I am glad to hear someone has won the battle over this mysterious list of issues I have going on.  I will give the meds a try hopefully I will see some improvement.
    • Posted

      what was the antibiotic? are you feeling better? that's how mine started

    • Posted

      Hope you are feeling better...were you taking antibiotics or ppis when it started?? Thats how mine started .

    • Posted

      hi jennifer

      thanks for sharing your experience.. i too have similar issues with my brain fog, fatigue, blurred vision and eye problems and its been worrying me for some time.

      i live in china and often worried that the pollution was effecting me but your story makes complete sense, i had a fall in the summer and hurt my back/neck and although i generally healed very quickly this would explain the beck related causes. i also know that my skull didn't properly 'close' as a baby so your message totaly struck alarm bells with me!

      the main trigger for this was starting exercise... amazing how my body had coped until i decided to start training again (i havent trained for a few years due to knee surgery) but after reading your comments i have had a full MRI and although im waiting for the results im feeling more positive about the next steps!

      i mean... im in china, and massage and chiropractor procedure's are available readily! i couldnt be in a better position to get the help i need!! i hope you are feeling well and thank you again for sharing!!!

      happy new year to all!!!

    • Posted

      Hi Bonnie: Hope you're doing well. I know your post is from a couple years ago, but I am viewing this thread because many people here have the same symptoms I have been having for the past 5 months. Do you remember which antibiotic you took before your symptoms started? I was on a course of doxycycline when mine started - so it was interesting to read this. I read that doxycycline has been associated with rare instances of increased intracranial pressure, but I have had my eyes checked and there was no optic disc swelling (which they said would be present with increased pressure). But I am thinking if it can cause increased ICP, it might do other strange things to the neuro system (?)

    • Posted

      Jennifer, I wanted to check in with you to find out how your chiro and cranial therapy is going. I hope you can answer, I know it's been 14 mos. since your last post but I just started experiencing all of these symptoms this past Saturday. I felt your post made the most sense. This just hit me watching tv, not upset, completely relaxed, my eyes quickly flashed, got blurry and then I felt like ALL the blood rushed out of my brain, my arms got tingly, my face a tad numb, but not a particular side, just all over and my head was foggy and my brain felt like it pulsating and very heavy. Like what it feels like right before you faint but you don't faint. I didn't get chills like when you do when you faint. I was like woh, what was that - and then it did it again. This time I panicked a bit and heart started racing but because I was freaking out. I thought i was having a stroke and about dialed 911, then it stopped. Immediately though, low blood sugar, so drank some OJ, thought maybe dehydration because I had 2 large gin/tonics the night before, so mega hydrated all day, even took some potassium tablets. Also, I had a pretty severe concussion about 4 months prior to this. Thought that might have something to do with it. Had about 5 more of these episodes and just sat still, tried not to move my head and then they stopped from about 2:00 to 9:00 pm, Then it hit me the same way it did the first time. This time I knew it wasn't low blood sugar, or hypoglycemia, or dehydration, so I went to the ER. They had a hard time understanding what I was explaining. No I'm not dizzy, no I didn't faint, no I'm not nauseous, I didn't get uncoordinated, or lose my speech, or lose feeling in my limbs, I couldn't describe it so they took me in as being "lightheaded". This was a complete understatement in my opinion. They did EKG, Chest XRay, CT Scan with and w/o contract - All normal. In fact perfect! I did have a UTI though, and can't understand how a UTI would cause something like this, but the Dr. told me in women over 50 it's possible, a bacterial infection can wreak havoc in older women. I thought that was BS, personally. She put me on antibiotics and went on my way. Had 2 more episodes, on the way home! In fact, had a bad episode as the dr. was trying to explain in to me and she said maybe vertigo. Basically she didn't know. Exhausted trying to figure this out, I came across this post @Elise93 created and I'm like these people know what I'm talking about. I made a chiro appt. this morning and I'm going back for a 2nd treatment. He said my C2 was completely rotated and putting pressure on something or other. I really think this will be the answer. If I don't get relief I'm going to go ahead and get an MRI from a Neurologist, which they say is the next step. I'm also going to take your advice and do the cranial adjustment as well.

    • Posted

      I had the same thing.. I almost fainted, wasn't able to look straight.. wasn't even able to walk one block and thought I would pass out on the street...

      And I figured out that I am totally low on Vitamin B12- that can cause all these symptoms.. it's crazy.. I took 1000mcgr and a probiotic with lots of water and 1/2 hour later I was good..

      I also stopped eating sugary food and I feel so much better!!

      Good luck to you!

    • Posted

      Thank you for your post. it's amazing how I felt like I was the only one going through this until today!! I am going through the same as others but your post was very close to me because I am headed the same direction.

      My symptoms started in March 2018 and were pure vertigo (everything was spinning super hard.) about every 2 weeks it would attack me and the only thing that helped was sleep, about 10 to 12 hours worth. that continued until June 2018 where I was prescribed sinus meds after an MRI depicted sinus disease. At that point it was completely gone. I had no symptoms and I had completely left it behind........until 1 yr later. March 2019 it came back but seemed to evolve. I don't have the spinning as much but a lot of off balance, dizziness, blurred vision, pain and soreness in head and neck, and instant fatigue. After 3 ENT, MRI, ENG, VNG, I saw a vestibular specialist and he believes I also have vestibular migraines. he has me on Verapamil. Like others my symptoms are completely debilitating and has changed my life completely. I am wondering how your recovery is going?

    • Posted

      hi just wondering has your symptoms still gone

      ive got the same problems

      did your tinnitus go as well

      i cant think straight and every simple things are hard

      i have to really think about things i do with my eyes shut

      my eyes are blurry

      just getting me down

      its not anxiety or depression

      i always socialising and happy

      but im not sharp or seem to be on the ball

      some days really bad , brain dead

      zombie like

      thanks any info be fantastic

    • Posted

      i have all them symptoms they never leave the new one i have is tight chest arms hurt back hurts and breast pain

    • Posted

      hi did you get rid of your symptoms

    • Edited

      hi matty

      i havent been on this site in awhile. i am doing well. just saw the otolaryngologist on tuesday and my norotriptiline was increased to 80. i have my life back. i am working and traveling. i recognize the migraines now and i believe that i was having the migraines for a long time before my episodes with vertigo a year and half ago. i still have good days and some bad. but no vertigo and no foggy brain. i was lucky that the first med tried worked. i hope you get the same luck. so i am trying to manage the migraines with sleep, diet, low stress. i have figured out my triggers too. what i can say is, most people do not get this. they all keep mentioning BPPV- i wish. so ive stopped trying to explain what my disorder is. some days my balance is still off. and im tired on the weekends. but, i thought at the beginning i was going to lose everything including my life. terrifying. try to pay attention to your migraines. remember you dont need the pain of the headache to have one. lights and noise really bother me. also, too much talking to someone causes one. once you figure your triggers out you can start to control your migraines by trying to avoid things.

    • Posted

      Hi Matty,

      I agreed with hmoosey, which i always did.

      mine was PPPD and not BPPV, which i never thought I had migraine in my life until when specialist neurologist diagnosed me last year March 2019.

      I was suffering with worst symptoms since June 2017, off balance ,fogy had, balance problem, like fainting but am not, like i am in both all the time, lost 3 years of my life, i cannot work, going out, working, shopping, driving and talking to people. It was very bad for me.

      I have seen many specialist Dr but no success until March 2019.

      to be honest the only medication i have tried is candisartan. which is for blood pressures but apparently it works with migraine, I have tired it for 3 months but it low my blood pressures so i had to stopped, unfortunately i couldn't see that Dr any more, I have tried to write a letter to him with no response.

      I had to help my self, i had to go out and push myself in nice positive way to walk, to go swimming, gym for a short time like 45 min and i start to see the benefit of it.

      I am still have bad, and good days and not all the symptoms cleared but at least i start to work again, shopping, cooking and talking to people in better way.

      The best way i did it too is cupping in my head and back , which many family member advised me to do eventually I did it for last 6 months now and i could see a big improvement.

      You are the only one who can help yourself, even so you have a good family support which i did too but is only you who knows what is going on inside you.

      as people with PPPD like my self they look very good from outside but unfortunately we suffers inside a lot and people and doctors they will never believe you what is happening with you as all your MRI's and scanning come back normal until when you do a special test caloric stimulation or they called caloric reflex test too.

      I hope you get better soon and find a better way to help your self.

      Please let me know how you get on.

      All the best to all of us.

    • Posted

      Hi hun is this problem in the neck otherwise called straightening of the lordosis which is what I have thanks. I get all symptoms you mentioned ,I also have other issues with my cervical.

    • Posted

      I am experiencing the same symptoms with no one being able to figure out what is wrong. Where did you have this craniosacral therapy done at?

    • Edited

      Shannon, The onset you described is precisely what happened to me. It has now been over a year and I've had an array of specialist visits and tests, but no resolution. The onset episodes have stopped, but I now suffer constant tinnitus, astigmatism, spacey head, dizziness, and general fatigue. Were you able to get a diagnosis and treatment that worked? Any info would be appreciated... this is the best description I have ever read of what I experienced. Thanks.

    • Posted

      I've been going through a very similar struggle for a year now and think I've finally figured it out after a year of visits with specialists and $10k in tests led to no resolution.

      My symptoms started after physical exertion (I was in very good shape prior to this) where I felt overheated and had a fast heart-rate on a hilly hike. After turning back, I got light-headed/dizzy and just felt off. It never went away. Then came the brain fog, pressure/fullness in the ears, raging tinnitus, extreme (and I mean extreme) fatigue, blood pressure spikes (to 200/110+). The only test abnormalities were slightly hypothroid (with no hashimoto's antibodies) and a partially empty sella, which all the doctors said was an incidental finding of no import. I was prescribed a beta blocker, which made me faint, and anti-depressant, which I refused to take. I did start levothyroxine which made me feel normal for a few days, and then everything came back with a vengeance.

      Anyway, the only thing that helped slightly was vitamin B2 and magnesium at the suggestion of the ENT who thought I had some new onset form of migraine. After seeing a very slight improvment, I got to thinking about other vitamin deficiencies and read about thiamine/B1 and beriberi. With nothing to lose, I started supplementing with Allithiamine in high doses along with a B-complex and regular multi, and after a few days I felt normal again! Knock wood, but it's been a month now, and I still feel back to my old self with only minor 'dips'.

      Google Dr. Lonsdale and thiamine deficiency and read up as I'm convinced that's what happened to me, and I'd wager that a lot of folks with 'medically unexplainable syndromes' have their roots in nutrient deficiency, and particularly thiamine with our diets high in sugar, processed foods, and/or alcohol.

    • Posted

      So that dreamlike state feeling hasn't gone away since you originally posted? I am in desperate need for help as I've been dealing with the same exact thing. Ironically for me it all started after I got sick from food poisoning over six months ago. Now every single day it feels strange and like I'm dreaming. I have headaches and brain fog. Please let me know if you have found anything that has helped.

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