Constant and extreme 24/7 Brainfog returned!

Member Stories
#1

Symptom description: I am 27 years old.

I have Constant and extreme “Brainfog” (24 hours a day 7 days a week). It is a dull/sedated/drugged feeling, sort of like I am drunk all the time or on heavily sedating medication. I feel like I am not totally awake or just woke up, the whole day. It also feels like someone gave me a sedating injection in my forehead. Sometimes it gets even worse and I get a (flue like) groggy feeling in my head. I also feel Lighthaded like I get too little oxygen in my brain. I never feel normal and sharp, not even for a few minutes. It is not fluctuating like most people with brainfog symptoms (where they have good days/periods). It makes life a true hell, because I can’t enjoy anything anymore, and I can hardly do any meaningful work. It does not matter where I am or what I do, I always feel like this.
I feel really slow mentally. Reading and comprehending text is very slow. It takes longer and conscious effort for me to recognize the words on paper (slow word recognition). Trying to concentrate is very hard and I do most things automatic. I don’t have any forgetfulness or other memory problems.

I also feel sort of disconnected (out of sync) like walking through a dream or movie. It is the same surreal feeling you sometimes get when you have the flue, are drunk or when you have slept very little. It is not a psychological feeling like ”depersonalization” or “derealization”! My vision is good, but everything seems to have too much contrast?

Other very mild but strange symptoms: that started at the same time:

• 2004 Got worse vision in my right eye suddenly (I always had perfect vision).
• Only 2004 Frozen stiff feeling in my arms and wrist.
• Only 2004 one month and never before or after that:) Fast heartbeats and high bloodpressure.
• Wake up sweating (not extreme) (sometimes every night for a month only 2004 & 2008)!
• Sometimes burning sensation in my feet.
• Sometimes tinteling legs like an electrical current running through them.
• As of late I often wake up with tingling sleeping arms or legs (bad blood flow?).

What I do NOT feel:

  • I do NOT feel tired or sleepy physically or mentally. I do not sleep excessively, just 8 hours a day.
  • I do NOT feel anxious and I have never had panic attacks or anything like that.
  • I Have NO pain or any other problems.
  • I am physically in good shape and have always lived a healthy live (no drugs/alcohol or smoking), healthy food, good workout.

Story:
• Before I used Propecia in 2003 I was always very sharp mentally. I graduated with honors Bachelor degree ICT. I have never had any tranqulized/sedated feeling or any “Brainfog” like symptoms before 2003 when I first started using Propecia. I have never smoked, I have never used drugs, I have never drunk any alcohol in my life, I eat healthy & balanced, and I am in great shape physically.
• End of 2003: 1st time Propecia. After only a few weeks of using Propecia I got a terrible sedated feeling in my forehead. I became very slow mentally and almost could not think. This feeling was 24 hours each day 7 days a week. I stopped Propecia just in case, and the feeling completely resolved in a few weeks and I became normal and sharp again.
• Beginning of 2004 (second time started Propecia) Because I was not sure if Propecia was the cause of my symptoms, and at that time nothing was known about these sort of side effects. (I searched the internet but could not find anything). I started using Propecia in a very low dose 0.25mg. After a few month the mental side effects slowly returned (not bad) and I decided to stop Propecia forever. In the following month I decreased my dose from 0.2 to 0.1 to 0.05 to nothing. (I later learned that Propecia is almost as effective in a low dose of 0.2mg as it is in a 1mg dose.)
• 2004 7/8 month after I stopped Propecia. This time the side effects did not resolve after I quit Propecia but actually became far worse. I got an extreme sedated feeling in my forehead, and cognitive problems/“brainfog”. I felt like I was extremely sedated/drunk for 24/7. This feeling was very extreme and constant (it never went away). I felt somewhat disconnected like walking in a movie, out of sync. I also got some strange other symptoms I never had before: My vision in right eye suddenly became worse (I always had perfect vision). Extremely fast heartbeat at times and high blood pressure (for a few hours). My heart pounded against my chest for no reason. Stiff frozen feeling in my arms and wrist. At times a burning sensation in my feet. Tingling feeling in my legs (like a current running through them), Nightsweats, Dark circle under my left eye.
• In the years 2004/2005/2006 I felt better/good. It took a long time for the brainfog to become less and less. I never felt completely normal and sharp however (like before 2003).Sometimes I had brainfog in the afternoon. Sometimes I was completely sharp for a few days or weeks and then had brainfog “lightheadedness” for a few days. But all in all I could work with it. In that time I thought that maybe I did not breathe correctly (or helt my breath when I was concentrated) and thought that that was the cause of the frequent lightheadedness. I did however have strange periods of Depression out of nowhere and frequently felt extremely irritated for no reason. I also got quite nervous when positive things happned.
• Half 2007/2008 The brainfog and disconnected feeling became far worse (extreme). I do not know when the disconnected and brainfog feelings returned (started to become worse again). I think I very slowly felt worse but tried to work through it and did not really notice it. At first I mainly started to feel out of sync with everything. When I walked in nature, or in the city I kind of felt disconnected. Like my mind/eyes were to slow? The same disconnected feeling you get when when you are drunk, have not slept, or have the flue. The disconnected feeling was quite constant, the brainfog fluctuated however. Sometimes I could work with it quite well, sometimes it was quite bad. Then suddenly 4 month ago the brainfog became extremely bad again. So bad in fact that I can do almost nothing. It is an almost flue-like feeling in my forehead. It is almost impossible to do any work, or even watch a movie. I have constant and extreme brainfog and disconnected feeling 24/7 without even a minute.

Strange things:
• I have had some periods or days with depression. When I was depressed I felt a little bit better (less brainfog) in my head. And when I had extreme brainfog I was never depressed at all. Sort of like my body injected itself with a powerfull anesthetic.
• In 2006 I became ill for a few days (with heavy vomiting). I have had CVS (Cycling vomiting syndrome) my entire life. This is a migraine desease which occurs mainly in children but also in adults. Whenever I get a fever I always throw up heavily every 5 or 10 minutes 24/7 (true hell!). I then use Ranitidine and Primperan to lessen the symptoms. After this episode I felt incredible clear in my head, like before 2003! This lasted at least a few month (maybe longer).
• 5 month ago I used St Johns Worth (high but normal dose) for a few weeks. My brainfog symptoms got increadibly worse after that and I quit. Then my brainfog returned to the same level as before taking it. But a few month later the brainfog got really bad and stayed that way up until now, I never took St Johns worth again however.
• I was bitten by a few ticks in 2003 and had a negeative western blot with no specific bands, negative elisa, but positive PCR in 2008. This was tested in a Lyme specilized lab.

What I tried:
ALL THIS DID NOTHING AT ALL!:

  • Ritalin: (30mg a few times) Felt nothing at all.
  • Primperan: (20mg) Dopamine D2/Seratonin-3 antagonist for nausia: (Did nothing)
  • Piracetam: Only tried one pil… Made it slightly worse?
  • Natural (Omega3 & fish high dose & long) - Almost a year.
  • Natural: (L-Tyrosine/Tryptofaan) High dose – Did nothing!
  • Natural: (Vit C, B12, B6, Q10 high dose)
  • Natural: Creatine, Magnesium, Acentyl L-Carnitine, L-Glutamine, L-Agarine, Choline, Foliumzuur)

  1. How did you find this forum?
    Searched for brainfog found propecia.

  2. What is your current age, height, weight?
    27, 1.93m, 75kg.

  3. Do you excercise regularly? If so, what type of excercise?
    Daily gymnastics (legs, pushups,…), Walk 45 minutes every day.

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Fruit, vegetable, meat…always healthy food.

  5. Why did you take Finasteride (hair loss, BPH, other)?
    Male pattern baldness

  6. For how long did you take Finasteride (weeks/months/years)?
    Few weeks (0.5 mg) stopped, then a few month (0.25mg).

  7. How old were you when you started Finasteride?

  1. How old were you when you quit?
    same age.

  2. How did you quit (cold turkey or taper off)?
    Tapered off really slow in a few month 0.2mg, 0.1mg, 0.05mg, 0.01mg.

  3. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Propecia.

  4. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    See above.

  5. How long into your use of Finasteride did you notice the onset of side effects?
    First time directly brainfog/sedated, second time slowly in the course of months…

  6. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    Only extreme Brain fog/disconnected feeling.

Put an X beside all that apply:

Mental
[x] Brainfog!!! (**added, why not on this list?)
[x] Difficulty Focusing / Concentrating
[x] Emotional Blunting / Emotionally Flat (only with extreme brainfog)
[x] Confusion
[x] Stumbling over Words / Losing Train of Thought
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Depression / Melancholy (**never when brainfog is really bad!)
[ ] Extreme Anxiety / Panic Attacks
[ ] Memory Loss / Forgetfullness
[ ] Slurring of Speech

Sexual
[ ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[x] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[x ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

#2

i don’t know how to help u,i would ask to a neuro doc.

#3

Get bloodwork per list in FAQ at top of site. Check for Lyme disease since you mention you were bit by ticks, if your PCR turned positive what did the doctor tell you?

#4

DNA PCR tests for Lyme are not accurate. They can give both false negative and false positive results due to contamination. In fact, there are no tests that can conclusively tell if you have active Lyme & co-infections or not. I have never had a Lyme E.M. rash, nor any of the classic symptoms of Lyme. I do not have pain, joint pain, weakness or any other symptoms, only extreme brainfog and cognitive dysfunction. I really only want to talk about Propecia here to stay on subject. I should not have added that information in my post.

I have already tried to convince my GP to do the hormonal tests but she refused and only did the standard general blood tests. I have however already asked an other doctor to perform hormonal tests and I hope to get the results of these tests today. I have read most of the blood tests results here and I can not say that I spot a pattern or obvious changes with most people who have brainfog symptoms. Are there any tests for neurotransmitters/neurosteriods levels?

#5

You should try :
-phospholipid
-acupunctur
-yoga
-meditation

#6

some of my other symptoms have been improving but like you i suffer brainfog all the time

are your eyes bloodshot or off white or are they normal also?

#7

I have been to a neurologist and had a MRI and an EEG but they were completely normal. He did not want to do any more tests, like hormonal tests. Of cause MRI’s only show structural information and not functional bloodflow like SPECT or PET. All the docters I talked to find it strange that my “brainfog” symptoms returned after a long period of 3 years. They do no think that Propecia could be the cause. Of cause I was never completely symptom free, my symptom fluctuated during the day and week. But these symptoms were only light and manageble (sometimes lighthead like I got to little oxygen in my brain). None of the Docters wanted to do hormonal tests.

I did have low morning Cortisol (0.27uml) and normal DHEA, B12, Thyrod.

#8

so they think low cortisol could be your problem? some kind of adrenal issue?
it might be interesting to take cortisol and see if your brainfog clears as if it is related to low cortisol it would clear almost instantly one would think.

#9

I don’t understand that my problems returned in this extreme form. I think I should get a good Cortisol test (12 Hours Silava or Urine).

#10

You have Low T and Low Cortisol i would bet on that.

Same boat here.

#11

Mr. No, it sounds like you and I have A LOT in common! Pretty much everything you said happened to you, happened to me and is still happening to me! It’s been over a year since I last took a pill and I still have lots of brainfog and really messed up lightheadedness and depersonalization. About 3 weeks ago it was like I was on some kind of drug like acid. I wasn’t hallucinating but everything seemed too bright and I couldn’t focus on things. It was basically like I was walking around using instinct, very scary.

#12

I still feel extremely mentally sedated (2 years non-stop). I can’t do anything usefull, although I try very hard. I really don’t know what to do at this moment anymore. I have searched for the last year on the internet on worlds like brainfog, disconnected feeling… I read articles about all the neurotransmitters and hormones… (Although reading is very slow due to slow word recognition. )

It’s like I walk around in a “Half Coma” all day or like I swallowed half a bottle of sedating drugs. This is not a subtle symptom, it’s extreme! I think that someone that has a chronic life threatening disease does not feel this bad cognitive/mentally. It is as bad as having heavy flue for about two years non stop (without the flue symptoms). It doesn’t matter if I work or do nothing either. I speak at a normal speed (although I have more difficulty finding the right words) and I look normal healthy too (only the dark circles since Propecia). I don’t think that Doctors can imagine how bad it actually is.

I have no anxiety or depression or anything physically with my body and I sleep totally normally. I don’t feel tired or sleepy during the day either. Not like Chronic Fatigue where you feel physically and/or mentally exhausted. It’s not a psychological defense mechanism or depersonalization or derealisation or anything like that. I read through all those articles and I don’t feel like that! I feel physically sedated in my head, like I am not awake.

I have been to 3 doctors and a neurologist, had mri and blood tests (although not all the hormones). But I don’t see the point of asking even more doctors if they just don’t know what you are talking about and don’t want to do more blood tests (neurotransmitters, adrenal functioning). Even older doctors have never heard of this particular symptom on itself.

It seems to me that it is actually quite a rare condition in this form. Lots of people get some sort of brainfog because of: panic attacks, depression, lyme, thyroid disease, Addison’s, medicine use, autoimmune… But all those brainfog symptoms fluctuate, and seem a lot milder. I only occasionally found people who described the brainfog as constant, non stop and extreme. Like being drunk/sedated all the time, or not being awake.

What blood tests should I get for brainfog alone? And do blood tests even say anything useful about neurotransmitter/hormone levels in your brain itself? I feel physically fine, so the test results could be normal while my brain levels are not? And what sort of treatment should I try to get that at least seems logical to the doctors? I would like to try out anything that could work, but they surely don’t.

And Is there anyone here that feels or has felt this extreme? Extreme enough to make it almost imposiible to do any work?

• Adrenal Fatigue…?
• Cortisol /ACTH (Probably too low)
• Histamine (Maybe too low ) (Histmaine = Wakefullness promoting)
• GABA (Maybe too high, sedating effect)
• Pregnenolone (lowers GABA…) But where can I get it…
• Allopregnenolone (???)
• Seratonin (Maybe too high, sedating effect)
• Dopamine (Probably normal, 30 mg Ritalin did nothing for the brainfog)
• Ephedrine (Probably normal, 30 mg Ritalin did nothing for the brainfog)
• I don’t think I have a problem with testosterone/DHT or other Male Hormones because there is nothing wrong physically. (DHEA was normal also).
• At the end of 2007 I was somewhat depressed and used Sint John worth. Since then the brainfog got even worse than before and didn’t get better. (I have not once been depressed this last year).

1 Like
#13

Try Omega 3 fish oils and cardiovascular excercise 3x a week, 30 mins minimum.

#14

i had 3 years brain fog…it diminuisced with time ,but i’m really doing well with it after an homeopatic doc prepared some hebs fo me…she visited me and prepared them just for me…try something like that.

#15

Hey NO…

Whats your TSH Level?

#16

Hey No I had this today.

Have you got any test results?

Thanks

#17

I have constant brainfog as well. After quitting the drug, my brain fog initially went away, but then came back and it’s been about 6 or 7 months of constant fog with no days of relief. It is noticeably worse after ejaculation – especially when I force masturbation without being horny.

No, if you still read this forum, I would be very interested to know your progress since your last post! Please give us an update!

#18

A few years ago I posted my story. (I took Propecia almost 8 years ago, and only for about four months). I suffer from severe brain symptoms ever since, that have become extremely disabling the last few years. After about a year after quitting I initially got a lot better, but never 100%. However the last 4.5 years I have severely deteriorated. I think I am probably the worst case here. I know this because I have been through so many periods where the symptoms have worsened from bad to almost unbearable. I also read a lot of stories on the forum form people who suffer from brain symptoms, but most of the time they seem a lot milder than mine. (I think somewhat comparable to the severity of my symptoms 4 years ago.)

At first I believed It couldn’t possible get any worse (I had roughly the same symptoms as I have now but much milder). Still I thought they were very bad, because I compared them to my previous milder symptoms. If I could go back to feeling like that I would never look back, because I feel absolutely horrible now. I would do anything to even feel 10 or 20 percent better. At this moment I feel 85% to 95% percent sedated where 100% would be a complete comatose state. Or to put it differently on a scale of 1 to 100 where 100 is normal I feel about 20%. I know this sound execrated or dramatic, but I actually feel that Ill. I am not alive; I can’t enjoy anything feeling this ill (reading, watching movies or going somewhere is like doing something with a 42 degree Celsius fever, drugged and drunk). I also want to say that I am not depressed, not even remotely, though I probably should be.

There are no words I can use to describe what I feel and how absolutely horrific it is to someone who has never experienced this. Before I got these symptoms I have personally never felt anything similar or something that would truly illustrate my symptoms. I can only use vague analogies to diffuse brain symptoms like fever or being drugged or drunk. I constantly (24 hours 7 days a week) feel like I am severely drugged, heavily sedated, not awake. There is hardly any fluctuation in the severity of the symptoms, they vary somewhat from horrible to unbearable, but that’s it. It feels like I am walking around with a brain that has a very high fever (but without feeling feverish) just the totally ill, zoned out, groggy and drugged feeling, like I haven’t slept for days but far worse.

I also have extremely darkened/dimmed vision which has become much worse over the last few years. It is very hard to describe how I see everything. My vision is not blurry, I can also still see all the colors but when I look around everything looks very dark, yellowish and has strange dark contrast, it’s surrealistically bad. It’s also somewhat comparable to walking from the bright sunlight outside into a dark room, or when you have just looked into a bright light and your eyes still have to adjust, but different and much worse. My vision is also slowed down like my brain can’t interpret the images fast enough, like everything is lagging a few frames behind. It is a horrible sensation coupled with my other brain symptoms. Especially at night I see everything very dark, sickly, and with a yellowish cast as if it is lit by candlelight or a single fluorescent bulb that still needs to warm up.

Even I myself can’t believe how totally ill I perceive everything. It’s like having a very high fever, being drunk, and having not slept for days all at the same time. Especially the last 4 years have been a living nightmare (literally). I also haven’t been able to drive a car in 4 years, it would be extremely dangerous (Not that I care, I feel far too ill for that). The absurdity is that even though I feel horribly ill all the time, on the outside there seems to be nothing wrong. Every day I am totally amazed at the fact that I feel this Ill and that I can still talk, write and think somewhat normally (although I have bad cognitive problems and every mental task is very hard, like working through a high fever). Since I don’t have any obvious visible physical complaints, and I can still talk normally, on the outside there seems nothing wrong. It’s this stark contrast which makes it almost hopeless to try and explain the symptoms to a doctor or anyone else. I would probably never have understood it myself if I hadn’t gone through it. If only the symptoms would be a little bit milder (maybe 10 to 15 percent) Then I could do some work again. Now I frequently have weeks or month where I can’t do anything productive even though I try very hard for hours and hours every day.

I wonder all the time how I can still speak, walk around, and do other things while feeling this bad. On the outside you can hardly see how Ill I feel (I have some light dark circles under my eyes which have become worse in the last years). I guess you could also still do everything when you would always have a 42 degree fever, only you would feel horrible doing it. Whatever I write, I can’t truly accurately describe my symptoms, especially how bad they are, since most people have nothing to compare them to. I would trade these symptoms for a disease like AIDS, amputated legs or almost anything, if only my brain could feel somewhat better again. I used to have days where I felt mildly better, but now I constantly feel terrible. The quality of life is extremely low. I also can’t go anywhere without feeling extremely ill.

I haven’t let myself slip into apathy though. Almost every day I try to work as hard as I can for up to 9 or even 10 hours (Which results effectively in about 20-30% of my normal working capacity). It’s like trying to read, learn work totally drugged, groggy and feeling ill, It feels horrible. My work and passion is 3D artwork, drawing and graphic design, and I would do anything for it. I truly believe that if I hadn’t gotten ill I could have reached the very top, even now I am at a good level, but I haven’t been able to do much professional work due to this illness. My original education was a degree in IT which I passed with honors. I Think I was and still am quite intelligent. I have always been a very hard working person with a high degree of personal discipline.

I also do cardio and other exercises for one and a half hour each day. I have a tall lean and muscular body and no physical complaints (Except for a second degree hart block, low blood values, low hormones etc.). I have always eaten healthy and varied, never smoked and never drank alcohol my entire life. Since the last year I have even tried a calorie restricted Vegan died, to see if this could help mental clarity. I thought that maybe my body would go into a sort of survival mode, and for example dopamine receptors would increase. Weather it helped I still don’t know, maybe it did help somewhat, but then suddenly I got worse again when (see my explanation later on). I exercise more than an hour a day even though I feel very bad doing it.
I don’t know for sure that Propecia is the cause, even though it all started in the period I took the drug. I think Finasterine use has been the starting point for a cascade of cumulative damage to my brain. One of the problems is that my symptoms are so unique (no doctor has recognized them or even came across these symptoms in other patients.) And I talked to neurologists, internists, endocrinologist and al lot of general practitioners. Also I haven’t found anyone with the same symptoms and severity of them online. There are some who describe something similar, but their symptoms seem much milder. There is some overlap with stories of people with Post Concussion symptoms. Some people on this forum have somewhat similar problems (but most of them I don’t think as bad as me).

I still don’t know for sure why I have had periods of months of sudden worsening. I believe that because I could have an altered hormonal state (maybe lowered Pregnenolone/Allopregnenolone) and other hormones. That my brain had less neuroprotective and neurogenerative neurosteroids and therefore was more venerable to physical and psychological stress. For example I used to do very hard punching exercises in the air, this would give a jolt to my neck and head. Normally this probably would not have been a problem, but I have found out about 3 years ago that my symptoms actually worsened after it. Only the worsening occurred days to weeks after, and I would not associate it with it. I later read that brain damage occurs later through a process of inflammation that can take days to weeks. I would get a physically “sedated feeling” in my forehead (like a dental anesthetic). Then during the month after that, this would gradually disappear again but then my underlying brain symptoms would be worse and stay that way. Coincidence or not, I don’t know for sure. (Now 3 years later I have, until recently, not had a severe period of worsening, nor that sedated feeling in my forehead just gradual decline I think. It is hard to be precise).

Another strange thing that I noticed (Although I am not 100% sure about it either) is that I seem to feel even worse when the skin on my forehead, temples and nose bridge is very dry. When it is a little bit oily I tend to feel a tiny bit (maybe 5 percent) better. I have always had very dry skin (and only developed extremely oily skin on my forehead, temples and nose bridges after the last time I used Pregnenolone). Even after stopping Pregnenolone completely (more than a year ago) my skin remained very oily for about 5 to 7 months, and then it gradually disappeared. In fact it was so oily that It seemed I had rubbed it with olive oil. After washing my forehead, the very oily skin would return after about two hours. In that same period I had very bad hair loss too, and would pull out whole hands of hair, even though I didn’t take Pregnenolone anymore. This also stopped at about the same time the oily skin stopped, but then I began feeling even worse again. Somehow I had a little bit improvement in the period I also had the oily facial skin.

In the previous year however I also had two periods where my symptoms suddenly got worse. In my father’s side of the family (including my father), some have a deviated septum problem. This means that suddenly your nose gets stuffed (especially at night). I have never snored, and as far as I can tell I do not suffer from sleep apnea. Whenever my nose gets stuffed I usually began to breathe through my mouth automatically, or I would wake up .But about 7 month ago I dreamed that I was suffocating and I didn’t wake up, This happened a few times that night. The following days I had a headache which lasted a few days (which I never have), and I got the same sedated feeling in my forehead (like a dental anesthetic). Then during the weeks after that I felt worse and worse. Sometime later the same happened again, with the same cascade of symptoms. Since then I have always used nasal drops (which you are not supposed to use for long periods). Only a few months back, I thought I would try without the nasal drops again, and after a few weeks the same happened again (The same decline). This is very strange, Maybe my diseased, damaged brain is very susceptible for oxygen shortage especially with my low heart rate and low red blood count.

I have taken every imaginable brain related supplement. I tried long term antibiotics because I thought it could be Lyme (I had some positive bands on some tests and none on others). There is only one thing that has done anything to mildly improve my brain symptoms: Pregenolone. Unfortunately I can’t take it (even at very low dosages of 1MG a week) without getting small pimples on my forehead, a burning scalp and extreme hairloss, and sometimes a headache. During a year I have used Pregnenolone a few weeks, then had to quit due to these side-effects. Then after a few months started again because I felt absolutely horrible. Each time I reacted stronger (at lower doses). At first I could take 100-200mg a day later I couldn’t even take 1MG a week.
Now my physical situation has also deteriorated. I have an AV-Heart block type 2 (During the day my heartbeat is about 30-40 beats a minute) At night it drops to 24 or even lower sometimes.) This is extremely rare for someone of just 32 years old in good physical condition. I also developed aplastic anemia: low count of (red, white , blood cells and platelets). My hormone levels are extremely low (Testosterone of 4 where the range was 8 and higher). All my other hormones have also dropped (Growth hormone, Thyroid hormone, etc). The low hormone levels could have been caused by the Pregnenolone use, because Pregnenolone makes the Pituitary gland secrete less hormones on the long term. I don’t know what to do anymore. I should really get a functional brainscan like a f-mri or PET scan. But even then, there are no medicines for brain damage, and I feel so ill, that it is hard to have to fight the doctors to get one (Not to mention that they are almost never used to show brain damage where I live, only other illnesses).

Hormones: Since using Pregnenolone my Testosterone has gone far below the range. It has been 3 or 4 in a range of 8-20). The strange thing is that when it was as low as 3 or 4 I actually felt somewhat better (5-10% better) then when it was back to 8 (in that period I felt even worse). Testosterone levels do not seem to have any influence on how ill I feel. When Using Pregnenolone, I had increased hair grow on my arms and legs (I have always had very little body hairs). After quitting Pregnenolone the hairs fell out and I had even less body hair then I had before using Pregnenolone.

Cortisol, Thyroid Hormone, TSH, LH: Were all very low after using Pregnenolone. I did not have a baseline for most hormones (pre-Pregnenolone). Only Thyroid T4 got measured a few years before and was still normal then. Blood Values: Red blood cell count, White blood cell count and palettes were all very low (below the range). I was tested for all sorts of blood related diseases, even a bone marrow puncture. At least it wasn,t bone marrow related. Second Degree Hartblock: This means that my heartbeat is very irregular. Every 1 or 2 beats it skips a beat. This results in a low heart rate of about 35 during the day and 25 at night (I was admitted to hospital so they could measure it for 24 hours).

At this moment I take the following supplements that seem to help very little if at all:
Phosphatidylserine (300mg), CDP-Choline (240mg), Choline, Phosphatidylcholine, Acetyl-L-Carnitine, L-Phenylalanine, Inositol, DMAE, Ginkgo Biola, Omega 3 1400MG.

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#19

You have done really well at describing the condition. It has to be brain damage.
I like your “it feels like doing things with a 42deg temp, drunk and drugged” description.

If i took that many supplements i would become severely unco-ordinated.

Im sorry to say that i have not been able to find any answers on this forum as to how to treat this kind of brainfog.

#20

I can understand and relate to what you say.
Unfortunately there is no cure so far.