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
jacobgraves TaylorMason
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jacobgraves TaylorMason
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miao1994 TaylorMason
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brian21114 TaylorMason
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Hello everyone! It's been a while since I last replied to what is now known as the "Taylor Mason thread". How is Taylor doing, by the way? Does anyone know? I hadn't seen a reply from him in a long while.
Anyway, I'm coming up to the 1 year mark -- when the "brain fog" symptoms began. I can actually remember the date (May 14th). It's been one hell of a rollercoaster ride since then; I wish I could say I have more insight than questions, however in having more chunks of "good days" lately, perhaps there's something there I can glean from.
The last time I experienced "debilitating" brain fog, with the anxiety and occasional panic (and insomnia) to go along with it, was in late October. Since then, I have had more good days than bad, however up through early March, I developed an equally crippling OCD that led me to spend hours every day looking up words (some with many definitions), write them down, and store for safekeeping as I continued to have this fear of losing memory and communication skills. It got better for about 3-4 weeks later in March and early April, then regressed again, only to get better (again) last week. Outside of "thinking about it", I have no idea what spurs this on. All I know is that the brain simply cannot handle the overload I was putting it through. I took generic anafranil for about 10 days in early March and late April -- couldn't handle the side effects, so I got off of it. Both times it was around 10 days; in neither case did I reach theraputic dose.
I am having an appointment with a new Endo in early June. I still suspect there's some hormonal aspect to this for me (male, 46); my blood panel didn't show signs of hypothyroidism last time, though it wasn't as thorough as it needs to be. Otherwise, I'm just trying to eat right, suppliment with vitamins and Omega 3 fish oil, and try to maintain a solid 7+ hours of sleep a night. Working rotating shifts makes that difficult for me (especially midnight and early AM shifts).
renee37065 TaylorMason
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rebekah2222 TaylorMason
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Does anyone deep down just want to try and let this feeling go away naturally? I only have the dream world feeling 24/7, get dizzy often, pressure in head, sensitivity to light, and because of that get anxiety from it because I know something is not right and wonder when it will ever go away. Other than the feelings above I feel completely normal. And it's been getting worse because I think about it more and more wondering why. I know they say not to think about it but it's easier said than done. You're living in it. My fear is taking more medications making it worse, like the few I've taken. (Almost died off one because I had some sort of reaction to it) I'm a single mom, and have responsibilities every day that I can't just shove to the side Bc of this. So taking meds not only makes it worse but I also have to work having all the side effects which is impossible. No one really had an input on what I said awhile back about TMS treatments, it's as natural as you'll get if you want to actually do something about it. But they don't know LONG term side effects because it's so new. So I'm just stuck. I worry if doing stuff to my brain, no matter if it's meds or TMS treatments, will make it worse and I know I can't handle it any worse than it is now. But then again I worry I'll spend the rest of my life like this if I don't take a chance. But both worries weigh equally. I just wish it would lift without actually hindering my brain. You only have one in your lifetime.
33cody rebekah2222
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Literally every symptom you have listed is identical with I'm dealing with for almost a full year now, my family dr shoved me off put me citalopram which was a nightmare I was on it about 5 months I'd say until I could no longer stand it anymore. I went to a neurologist and had an MRI done which was normal then he said nothing more he could do so I saw a physiologist and she gave like 100 blood tests a Lymes test a test and two other tests to see if I was dealing with an adult version of pandas and no put on hydroxyzine which literally does nothing for me and propanol which I have also seen little benefit from, I have 3 kids a wife a full time job and the only answer I get is it's anxiety, I've been an athlete for all my life and feel like I know
My body well enough to know that's not the case sure I have anxiety but I feel like I got it due to the symptoms instead of it causeing the symptoms, I have no suicide feelings or anything like that but with that being said I also feel like this is no way to live my life, I'm sorta of miserable everyday all day because of this and it's put a giant gap between my and family which I know have had enough of seeing me like this I have no idea what it is and really hope it goes away, side not is when I was an antibiotic for a blood infection which the blood test indicated I had but then the b sample ruled out I was fine. Doxycycline was the antibiotic felt great for three weeks then it all came rushing back which is about when the antibiotic would have cleared my system, very weird. I really hope you find an answer, hopefully we all do thanks for listening to the long rant lol just nice to know I'm not alone with those symptoms
33cody
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Also I've put on 15 lbs so far just because I thought if I could put on weight then it wasn't cancer which may or may not be true, just my mind telling if I could do that it rules out cancer. Weird I know but true, symptoms for me are dreamy world type feeling, some sort of pressure feel dizzy but can still walk straight do regular tasks and yes anxiety feelings like nervousness and scared constant thoughts, sort of feel like i drank a few beers, not drunk not sober type feeling
michael30415 rebekah2222
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Have you tried the fisher Wallace device? It's suppose to be like tmz but much cheaper and safer. You have to keep occupied at all times in ordered to not think about it. I also believe it can go away naturally. God created the body so complex and I believe it has the ability to heal itself.
lindathepinda rebekah2222
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Hi rebekah, TMS is not that new, there has been done research for about 20 years and up to now no permanent side effects have been observed. It's mainly used for persistent major clinical depression, and I doubt we with our complaints could benefit from it. I think the source of our complaints is physiological, some kind of infection like in my case Lyme disease, and/or the effect of something environmental, like Wifi, cell towers, pollution or whatever.
michael30415 33cody
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I feel ya, it's no fun. Just try and keep your mind occupied and press on.
star3717 33cody
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Hi ...my son was recently diagnosed with PANS and has been on two antibiotics since the end of April with 99% reduction of symptoms (anxiety, separation anxiety, brain fog, derealizations, extreme fatigue, insomnia, not eating, obsessive thoughts about time and things being real, to the point where he was terrified to do anything and would just sleep, extreme sensitivity to light... he still has some anxiety when it's time to fall asleep, but a huge improvement from when he was at his worst) ... when you say that your symptoms went away when you were on antibiotics, that's crucial... certain infections cause mental symptoms and go away when the infection is treated with antibiotics... anxiety and these other symptoms that you describe do not go away with antibiotics unless they are caused by an infection... you need to find a dr that looks further into this and is willing to start you on antibiotics again to see if you get the same result ... do you remember when this started? Can you think back to any illnesses prior (within a few weeks or months before symptoms started)... just because one doctor says you do not have adult PANDAS doesn't mean they are correct... one thing I have learned is that doctors don't know everything and we have to be our own (and our childrens) advocates ... My son saw many doctors and was in and out of the hospital ... they all wanted to write him off as crazy ... and by day 5 on his antibiotics he wasn't crazy anymore ... But antibiotics don't cure crazy, they cure infections.
rebekah2222 33cody
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You're not alone. Thanks for the reply, it's good to hear from you! & I understand exactly what you're saying. I've been to an neurologist too and he said my brain was normal and that was it! I have another appt with him tomorrow and Ima see if he has anything else to say lol. And I've done multiple blood tests and everything is fine so far, idk what else to test for! And you get tired of getting stuck with the needle everywhere and not finding out anything. And I understand you when you say you get anxiety from the symptoms. I live in this dream world 24/7, already knowing something isn't right, then when other stuff happens that's when I start to panic and it just makes it all worse. I understand about the family situation too, it affects everything and I hate it. I feel like I'm watching my child grow up in this dream world and I just want to see her feeling normal! It sucks. I'm 21 and I've dealt with this for 7 years now and it's gotten worse because I'm so tired of it. But I can't even explain how it feels to talk to someone that REALLY understands Yano?
rebekah2222 lindathepinda
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Thanks for your reply! I didn't know how new it was but I was just worried like up in the years, when we get older if the waves from the TMS treatments would effect our brain negatively. Because we already have a big chance of getting Alzheimer's and other things similar because it's so common I've seen, and I don't want to add to the chances, if that makes sense. & I agree with you, that's why I'm so hesitant in doing stuff like that including meds when the doc just guesses by your symptoms. I don't want anything I don't NEED. Especially if it's not natural.
33cody rebekah2222
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I def feel the same way with medication, however I'm so over this whole thing that I'm literally ready to try anything that may help lol it's rough not sure if my iron was tested as the previous poster had said about I'm gonna go through my records and see tho that's another thing I started doing, I get a copy of every test done because I'm going to go as many drs as it takes lol
33cody star3717
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I got bite by a tic a few weeks before this all started, and it's been a downward spiral ever since , suprisingly my physcologoist is the only dr that has actually tried to find the reason behind this. And yes conviently the antibiotic I was on when I got better was the same antibiotic used to treat infections from things like lymes and such so i have been trying to continue down that path hit drs are very hard to deal with especially when they already have their mind made up about what's wrong even if their answer is nothing lol
rebekah2222 33cody
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Yeah I know the feeling wanting to do whatever it takes to just make it go away. My iron is good so far, I'm low on some vitamins but I'm off and on medications recently so I haven't been able to take them. I haven't found a doc that has actually cared about helping me, they just try to shove pills down my throat and send me off. And one tested me for cocaine on the low. I'm like really? But one doc has suggested TMS treatments, idk if you've ever heard of that but I've just been hesitant on doing that. Plus some say it makes it worse, or doesn't work, and it's expensive at that. like I said their just guessing on what you need. And I can't get a second opinion down here because there's only one doc that does it anywhere around here.
rebekah2222 33cody
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Yeah I know the feeling wanting to do whatever it takes to just make it go away. My iron is good so far, I'm low on some vitamins but I'm off and on medications recently so I haven't been able to take them. I haven't found a doc that has actually cared about helping me, they just try to shove pills down my throat and send me off. And one tested me for cocaine on the low. I'm like really? But one doc has suggested TMS treatments, idk if you've ever heard of that but I've just been hesitant on doing that. Plus some say it makes it worse, or doesn't work, and it's expensive at that. like I said their just guessing on what you need. And I can't get a second opinion down here because there's only one doc that does it anywhere around here.
star3717 33cody
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I would try to find an autoimmune doctor or an integrative medicine doctor they are not always covered by insurance, but they know much more about this type of stuff like Lyme disease and PANDAS/PANS then most Western medicine doctors do ...the fact that you were bit by a tic and you responded to antibiotics is huge... that means you have an infection causing your symptoms ...look up the article
Ticked Off: 10 years living with Lyme disease
on Today...you definitely need a stronger antibiotic and for a much longer period of time
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lindathepinda 33cody
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You best get checked for Lyme's then, though you may be infected and still get a negative outcome since the tests used by GP's are rubbish.
If you're planning to keep using antibiotics don't just use doxycycline, but combine it with metronidazole or even better: tinidazole.
Doxycycline on its own just kills the active form of Borrelia, it doesn't eradicate the hidden form.
33cody star3717
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Thank you for the article and to the moderators for allowing me to still see the title even tho the link was removed, that would explain a lot of my symptoms of being tired all the time, joint pain however that part isn't to sever right now, I do get it on my lower back and elbows and knees and the spacey headed feeling that only goes away in spurts, problem is I've seen three or four drs who all ordered the same lymes test that comes back negative and no one goes any further and I honestly can't afford out of pocket expense anymore(most of my tests haven't been covered cause the drs all say they aren't needed) including the very expensive MRI, I'm going to a new dr soon who is very open minded and honestly just wants to help so hopefully that works out
ana85762 33cody
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