My Brain Is In Trouble And I Need Help

Tidal

Member
Joined
Oct 9, 2020
Messages
115
Hi, this is going to be difficult to explain so bear with me. Don't even know if this is the right place but I need serious advice.

I'm 26 and i've had anhedonia for 7 years after taking SSRIs from 15-20. In 2015 I was put on 250mg amitriptyline and I've not been the same since .I have read the stuff about anticholinergics and dementia which is obviously very scary. A combination of amitriptyline and stress gave me huge depersonalization and cognitive impairment, but later substances worsened my cognition as well.

I was then put on nortriptyline after spending two years on ami (250 for 1year, 100 the next)which seems to have given me permanent dysautonomia. From the first day on that drug I stood up and literally could not move. Like every cell in my body was drained of energy. I soon came off but ever since I have been left with being able to quite literally feel my heart beating 24/7(see it in my abdomen), POTS and dysautonomia-with something mirroring chronic fatigue syndrome. I have low-key aching 24/7 and any minimal exertion of legs or arms makes them go dead. I also can not feel my stomach or feel nauseous. Surely something cholinergic has to be at play?

When I stopped amitriptyline I got the only brief period of remission in 7 years from anhedonia. It was gone in a couple days. Someone suggested it may be due to histamine sensitization. I've not been able to catch colds with PSSD apart from when I took cistanche tubulosa. But no remission then.

After being off psych drugs, I began experimenting with various supplements in 2018. My first crash came from biotin. I took it for 2 days at a dose of 10,000mcgs and I immediately noticed that it gave me neurogenic bladder. As in reducing feeling of full bladder and nerve impulse but not enough to cause real inconvenience apart from being unable to fully empty. It just feels unnatural. That hasn't changed in 2 years.

I then discovered I had a UTI which prompted me to take an antibiotic. I was aware of FQ's so opted for macrobid and this cleared up the infection immediately. After finishing the weeks course and believing the drug was out of my system, I wanted to take some d ribose as I heard it was good for chronic fatigue. So I did.

I waited 3 days before taking it and I wish I never had. One hour having taken ribose (1 gram), I was reading a book when I felt what I can only describe as a "power cut" in my brain. The words in my mind suddenly became warped mid-sentence and it felt like half my brain had switched off. It was a physical, electrical sort of sensation which I think happened on my left side-like a switch or power shortage.
It felt as though I had something jumping inside of my head when trying to think-blocking my internal monologue. I still struggle to read and think. Words don't form properly and as weird as it sound's, I think it's connected to my breathing and muscles somehow. Feels like an inner tightness or blockade of speech in my mind. It's like I actually have to slightly move my talking muscles to think. So hard to explain.

I have no clue what happened but know it was very bad and reading was all I had. Unfortunately it doesn't end there.

3 months later at the beginning of 2019-and desperate to repair my brain in any way possible, I took myo inositol based on someone's recommendations, at a dose of 12 grams a day. After 4 weeks I noticed that I was thinking of the wrong word all the time. As in my brain would retrieve a similar sounding or related word. It also made my ADHD 1000x worse, made me read words wrong ,gave me random words floating around in my head when waking and going to sleep, as well as crazy bad muscle spasms in my head, arms, legs. I think it made me slightly dyslexic too. Not nice on top of everything else and nothing has improved much. I still get spasms at times.

Next I tried galantamine which was recommended by someone else but I had to stop it after one day due to insane myoclonus. Even when talking, moving arms. Laying down. I seem more prone to it now and even got it again from uridine which I could take fine in the past. Something is definitely up with my cholinergic system.

I was terrified to take anything after this. Since inositol my face is tight and it feels like I get mini spasms when merely talking. As in its even a task to talk now really.I also have hypersalivation.

In Jan 2020 I took a single dose of bromantane and at this stage it really is like a bad joke. That night I had intense hypnogogic hallucinations, and, you guessed it, they are still with me. My brain is in trouble and it is terrifying. I also have Asperger's which makes this harder to cope with and no Dr believes me when I tell them meds damaged me or explain symptoms. I'm at a loss with what to do.

I ordered metergoline because I thought I may have too much serotonin and not enough dopamine, then took a single drop on Friday which burned my tongue and made me stop. Three days later I started getting spasms in my thumb quite bad. Took BCAA today and they happened again but worse.

Does anyone have any clue what could be wrong? Everything happened after taking something. Literally everything that has happened to me. It's gutting.

I should also mention I have found out I have low testosterone recently and my cortisol has a reverse pattern-as in low AM and high PM.

My brain is failing me and I really need to do something but I just don't know how to help myself anymore.

I also have 5a dhp but scared to take that and worried it could increase cortisol
 

lampofred

Member
Joined
Feb 13, 2016
Messages
3,244
Just some ideas, have you ever had any issues with vertigo or posture? Vestibular system, vision, sciatic nerve & spinal cord health, bone health, brain function seem to all be related. Do you think you might have parasites in your brain? How is your vitamin A and D intake, which should strengthen your immune system to eliminate organisms that shouldn't be in your system?

These are all just guesses, the real issue may likely be completely unrelated, such as some toxic chemical exposure.
 

Velve921

Member
Joined
Aug 7, 2014
Messages
1,317
Hey my friend,

For the sake of my post in supporting you, I believe there are other people on this forum that will give strong input from a scientific perspective.

But I will say this, in my experience of going through the healing process of myself over the last 7 years, I’ve become very keen and self aware of how I feel in small details. This is simply because I’ve had to seek answers that are necessary to fix my health.

With that said, I want to commend you for efforts in being willing to learn and seek answers for yourself. I know at times it can be uncomfortable. I’ve gone through uncomfortable times as well. In this next line, I want to give you some confidence that if you keep seeking answers and being transparent, answers and solutions may come about in ways that will give you some life changing ‘a ha’ moments.

As you continue seeking those moments, do your best to calm yourself through these challenges. You are being relentless. Very commendable and brave. Stay calm and relentless. Believe in yourself.

You’ve got this my friend.
 

Recoen

Member
Joined
Jun 8, 2020
Messages
609
It sounds like you’ve tried very large doses of supplements. Did you slowly increase them? The Bs need each other, minerals, etc so taking anything in isolation will uncover other deficiencies.
What does your diet look like?
How’s your thyroid? Temps and pulse?
 
OP
T

Tidal

Member
Joined
Oct 9, 2020
Messages
115
Just some ideas, have you ever had any issues with vertigo or posture? Vestibular system, vision, sciatic nerve & spinal cord health, bone health, brain function seem to all be related. Do you think you might have parasites in your brain? How is your vitamin A and D intake, which should strengthen your immune system to eliminate organisms that shouldn't be in your system?

These are all just guesses, the real issue may likely be completely unrelated, such as some toxic chemical exposure.

No, I've never had vertigo or any issues with vestibular system or anything else you mentioned really. My vision got worse on TCAs and I'm now close sighted. Have no idea about parasites. Regarding the d ribose crash after the antibiotic, my theory was that my system was stressed from dealing with macrobid and the ribose placed too much stress too soon on mitochondria. But then I've tried coq10 and some other supplements (which I did not crash on) since, like pterostilbene, resveratrol etc.

I take vitamin D fairly often as a precaution so can't be that.
Never took vitamin A supplements and they don't test it on the NHS. Is vitamin A safe to take? Isn't accutane a derivative of it? I'm just so cautious now..
 
OP
T

Tidal

Member
Joined
Oct 9, 2020
Messages
115
Hey my friend,

For the sake of my post in supporting you, I believe there are other people on this forum that will give strong input from a scientific perspective.

But I will say this, in my experience of going through the healing process of myself over the last 7 years, I’ve become very keen and self aware of how I feel in small details. This is simply because I’ve had to seek answers that are necessary to fix my health.

With that said, I want to commend you for efforts in being willing to learn and seek answers for yourself. I know at times it can be uncomfortable. I’ve gone through uncomfortable times as well. In this next line, I want to give you some confidence that if you keep seeking answers and being transparent, answers and solutions may come about in ways that will give you some life changing ‘a ha’ moments.

As you continue seeking those moments, do your best to calm yourself through these challenges. You are being relentless. Very commendable and brave. Stay calm and relentless. Believe in yourself.

You’ve got this my friend.

Thanks for the kind words
 
OP
T

Tidal

Member
Joined
Oct 9, 2020
Messages
115
It sounds like you’ve tried very large doses of supplements. Did you slowly increase them? The Bs need each other, minerals, etc so taking anything in isolation will uncover other deficiencies.
What does your diet look like?
How’s your thyroid? Temps and pulse?

The biotin came in that dose per pill. As for the inositol, I did dive in rather foolishly, have to admit. But it comes from desperation and others took that much without issue. I took it in pill form.

I take b12 and folic acid due to being deficient in the past. Should mention I am hesitant to take methyl donors due to so many with PSSD crashing on them. Though I have taken them in the past which didn't seem to cause issue.

Have tried thiamine, riboflavin and nicotinic acid recently for about a month each with no effect.

I've done a hair mineral test before which showed low bioavailable copper and high calcium-though not at calcium shell levels oddly.

I struggle with diet due to ASD and I have ridiculously strong senses which makes it difficult for me to eat a variety of food. So I try, though not ideal, to get some of my vitamins and things from supplements.

My TSH ranges from 2-4 which isn't ideal. T4 is near top of range, T3 could maybe be a bit better. But these are virtually the same labs I had a decade ago when I had no problems. Therefore I don't think my thyroid is contributing to the problem all that much right now, but could be wrong. I take levothyroxine 75mcg. Temperature fine, pulse fine aside from POTS and feeling heart beating literally all the time at varying strengths. Sometimes it even pulsates in the spongy thumb tissue on my left hand quite viciously. This first started occuring after I took ginger for a week. All ECG's til now have been fine.

With supplements now, I've learnt my lesson and start things slowly on a lower dose
 

Recoen

Member
Joined
Jun 8, 2020
Messages
609
The biotin came in that dose per pill. As for the inositol, I did dive in rather foolishly, have to admit. But it comes from desperation and others took that much without issue. I took it in pill form.

I take b12 and folic acid due to being deficient in the past. Should mention I am hesitant to take methyl donors due to so many with PSSD crashing on them. Though I have taken them in the past which didn't seem to cause issue.

Have tried thiamine, riboflavin and nicotinic acid recently for about a month each with no effect.

I've done a hair mineral test before which showed low bioavailable copper and high calcium-though not at calcium shell levels oddly.

I struggle with diet due to ASD and I have ridiculously strong senses which makes it difficult for me to eat a variety of food. So I try, though not ideal, to get some of my vitamins and things from supplements.

My TSH ranges from 2-4 which isn't ideal. T4 is near top of range, T3 could maybe be a bit better. But these are virtually the same labs I had a decade ago when I had no problems. Therefore I don't think my thyroid is contributing to the problem all that much right now, but could be wrong. I take levothyroxine 75mcg. Temperature fine, pulse fine aside from POTS and feeling heart beating literally all the time at varying strengths. Sometimes it even pulsates in the spongy thumb tissue on my left hand quite viciously. This first started occuring after I took ginger for a week. All ECG's til now have been fine.

With supplements now, I've learnt my lesson and start things slowly on a lower dose
I think most supplements are way over dosed. I would consider a different absorption like topical and start low and build slow. I like energin but you can make your own with bulk powders. Also, many seem to need long term B supplementation. Many think because they’re water soluble and not stored in high amounts a month of replacement supplementation should be enough. This doesn’t seem to be the case- refeeding syndrome for example.
Your hypothyroid was probably being propped up by your adrenals then. Have you had cortisol, dhea, etc measured now?
what are your waking and after breakfast (with sufficiency carbs) temp and pulse?
I would try to hit the basics like: at least 100g protein, 1:2+ gP:gC, eating frequently enough to keep the catabolic hormones low, and Ca>P, for a solid 3months.
 
Last edited:
Joined
Dec 18, 2018
Messages
2,206
Hi, this is going to be difficult to explain so bear with me. Don't even know if this is the right place but I need serious advice.

I'm 26 and i've had anhedonia for 7 years after taking SSRIs from 15-20. In 2015 I was put on 250mg amitriptyline and I've not been the same since .I have read the stuff about anticholinergics and dementia which is obviously very scary. A combination of amitriptyline and stress gave me huge depersonalization and cognitive impairment, but later substances worsened my cognition as well.

I was then put on nortriptyline after spending two years on ami (250 for 1year, 100 the next)which seems to have given me permanent dysautonomia. From the first day on that drug I stood up and literally could not move. Like every cell in my body was drained of energy. I soon came off but ever since I have been left with being able to quite literally feel my heart beating 24/7(see it in my abdomen), POTS and dysautonomia-with something mirroring chronic fatigue syndrome. I have low-key aching 24/7 and any minimal exertion of legs or arms makes them go dead. I also can not feel my stomach or feel nauseous. Surely something cholinergic has to be at play?

When I stopped amitriptyline I got the only brief period of remission in 7 years from anhedonia. It was gone in a couple days. Someone suggested it may be due to histamine sensitization. I've not been able to catch colds with PSSD apart from when I took cistanche tubulosa. But no remission then.

After being off psych drugs, I began experimenting with various supplements in 2018. My first crash came from biotin. I took it for 2 days at a dose of 10,000mcgs and I immediately noticed that it gave me neurogenic bladder. As in reducing feeling of full bladder and nerve impulse but not enough to cause real inconvenience apart from being unable to fully empty. It just feels unnatural. That hasn't changed in 2 years.

I then discovered I had a UTI which prompted me to take an antibiotic. I was aware of FQ's so opted for macrobid and this cleared up the infection immediately. After finishing the weeks course and believing the drug was out of my system, I wanted to take some d ribose as I heard it was good for chronic fatigue. So I did.

I waited 3 days before taking it and I wish I never had. One hour having taken ribose (1 gram), I was reading a book when I felt what I can only describe as a "power cut" in my brain. The words in my mind suddenly became warped mid-sentence and it felt like half my brain had switched off. It was a physical, electrical sort of sensation which I think happened on my left side-like a switch or power shortage.
It felt as though I had something jumping inside of my head when trying to think-blocking my internal monologue. I still struggle to read and think. Words don't form properly and as weird as it sound's, I think it's connected to my breathing and muscles somehow. Feels like an inner tightness or blockade of speech in my mind. It's like I actually have to slightly move my talking muscles to think. So hard to explain.

I have no clue what happened but know it was very bad and reading was all I had. Unfortunately it doesn't end there.

3 months later at the beginning of 2019-and desperate to repair my brain in any way possible, I took myo inositol based on someone's recommendations, at a dose of 12 grams a day. After 4 weeks I noticed that I was thinking of the wrong word all the time. As in my brain would retrieve a similar sounding or related word. It also made my ADHD 1000x worse, made me read words wrong ,gave me random words floating around in my head when waking and going to sleep, as well as crazy bad muscle spasms in my head, arms, legs. I think it made me slightly dyslexic too. Not nice on top of everything else and nothing has improved much. I still get spasms at times.

Next I tried galantamine which was recommended by someone else but I had to stop it after one day due to insane myoclonus. Even when talking, moving arms. Laying down. I seem more prone to it now and even got it again from uridine which I could take fine in the past. Something is definitely up with my cholinergic system.

I was terrified to take anything after this. Since inositol my face is tight and it feels like I get mini spasms when merely talking. As in its even a task to talk now really.I also have hypersalivation.

In Jan 2020 I took a single dose of bromantane and at this stage it really is like a bad joke. That night I had intense hypnogogic hallucinations, and, you guessed it, they are still with me. My brain is in trouble and it is terrifying. I also have Asperger's which makes this harder to cope with and no Dr believes me when I tell them meds damaged me or explain symptoms. I'm at a loss with what to do.

I ordered metergoline because I thought I may have too much serotonin and not enough dopamine, then took a single drop on Friday which burned my tongue and made me stop. Three days later I started getting spasms in my thumb quite bad. Took BCAA today and they happened again but worse.

Does anyone have any clue what could be wrong? Everything happened after taking something. Literally everything that has happened to me. It's gutting.

I should also mention I have found out I have low testosterone recently and my cortisol has a reverse pattern-as in low AM and high PM.

My brain is failing me and I really need to do something but I just don't know how to help myself anymore.

I also have 5a dhp but scared to take that and worried it could increase cortisol

What is your diet like? How was the diet of your parents, possible siblings and yours? What do you eat in a day?
 

lampofred

Member
Joined
Feb 13, 2016
Messages
3,244
No, I've never had vertigo or any issues with vestibular system or anything else you mentioned really. My vision got worse on TCAs and I'm now close sighted. Have no idea about parasites. Regarding the d ribose crash after the antibiotic, my theory was that my system was stressed from dealing with macrobid and the ribose placed too much stress too soon on mitochondria. But then I've tried coq10 and some other supplements (which I did not crash on) since, like pterostilbene, resveratrol etc.

I take vitamin D fairly often as a precaution so can't be that.
Never took vitamin A supplements and they don't test it on the NHS. Is vitamin A safe to take? Isn't accutane a derivative of it? I'm just so cautious now..

I read your comment about low bioavailable copper and high calcium. My guess was that some parasite or infection was causing calcium dysregulation (or maybe just the meds you took induced hypermethylation and turned off the calcium-regulating genes). Calcium dysregulation would lead to cortisol dysregulation, causing low bioavailable copper, and excess calcium in soft-tisue and insufficient calcium where it is actually needed, such as in bones and brain, leading to chronic fatigue, cognitive issues, low testosterone, etc.

Vitamin A (especially from liver) would help to eliminate any infection if an infection is the cause, if hypermethylation is the cause then avoiding methionine in the diet (especially eating gelatin, which is deficient in both methionine and tryptophan) would help to reactive the genes necessary for retaining calcium.

I don't think restoring calcium regulation is as simple as taking vit D.

I don't mean to sound negative, but if that is indeed the issue then this is extremely complicated, but the one thing that definitely will help is complete EFA deficiency and keeping FFA/prostaglandins as low as possible.

On a less dramatic note it also could be as simple as too much endotoxin. In that case a daily raw carrot/cooked mushrooms/bamboo shoots or antibiotics could quickly clear it up.
 

Peater

Member
Joined
Mar 26, 2014
Messages
2,638
Location
Here
I would get hold of some calve's liver as it tastes mild, and is full of B vits and copper. Or maybe some decent pate if you can find one not full of fillers etc.

I think that and some brewer's yeast will cover your B vits in a natural way, with no excessive amounts of any one vitamin.

Eat plenty of protein and fruit.

Maybe supplement calcium and magnesium although you might need to play with this as while magnesium is the 'go to', I've found calcium just as helpful personally.
 

Hugh Johnson

Member
Joined
Mar 14, 2014
Messages
2,648
Location
The Sultanate of Portugal
Progesterone cures everything. I would also try methylene blue. I would also advice against large doses of most things. 1-10 mg of methylene blue is reasonable, progesterone you can take huge amounts though it will get you high. Just make sure you get bioidentical progesterone (Progest-E or similar).

In any case, I'm sorry this happened to you. What they did to you was awful and no one should go through this. I admire you and your dedication to healing yourself.
 
OP
T

Tidal

Member
Joined
Oct 9, 2020
Messages
115
I think most supplements are way over dosed. I would consider a different absorption like topical and start low and build slow. I like energin but you can make your own with bulk powders. Also, many seem to need long term B supplementation. Many think because they’re water soluble and not stored in high amounts a month of replacement supplementation should be enough. This doesn’t seem to be the case- refeeding syndrome for example.
Your hypothyroid was probably being propped up by your adrenals then. Have you had cortisol, dhea, etc measured now?
what are your waking and after breakfast (with sufficiency carbs) temp and pulse?
I would try to hit the basics like: at least 100g protein, 1:2+ gP:gC, eating frequently enough to keep the catabolic hormones low, and Ca>P, for a solid 3months.

I've only tested DHEA once before and I don't have the results now,but I believe it was on the low end. I actually have a DHEA supplement in the post and planned to start really low, as I worry about Cortisol being increased.

Which speaking of, my cortisol (saliva 4 step 24 hour) showed that it went from below the range in the morning to over the range a bit in PM. One comment from the Dr said he advised repeat testing to rule out Cushing's as it was marginally in that range. I read about Cushing's years ago and feared I had it. But why does my cortisol go from near Addison's levels in AM to higher in the PM?

At 21(whilst on amitriptyline) I got horrible, deep striae around my abdomen area. I put a lot of weight on due to the drug but it always concerned me that this was not right. My Dr of course ruled it out with a single blood test and that was that. I've had to pay for my own tests as they won't do anything on the NHS. I think, because I was under immense stress back then(and still am), I just have a really messed up stress response and low- high cortisol. Amitriptyline also messed up my circadian rhythm though. I find it hard to get it back for longer than 3 weeks now.

I am still literally in fight or flight all the time; I perceive everything as a threat and think there is danger around every turn. Even stupid things. I was never like this before at all.

I'll have to test waking and my after breakfast pulse. Don't have a thermometer. Will also try to increase protein. Thanks
 
OP
T

Tidal

Member
Joined
Oct 9, 2020
Messages
115
What is your diet like? How was the diet of your parents, possible siblings and yours? What do you eat in a day?

My diet isn't great, can't lie. Some people live to eat but I eat to live. I have huge issues with mixing foods and taste, smell and texture. It all stems from my ASD and stronger senses.

I eat lots of meat or try to. Only fruit I really eat are bananas and vegetables I find really difficult. So my diet is very bland and I admit to eating too much processed food. Trying to cut back on sugar and eat things like nuts

Everyone around me eats fine
 

Peater

Member
Joined
Mar 26, 2014
Messages
2,638
Location
Here
Nuts aren't great. Not sure about bananas. Are you also eating plenty of salt?
 
OP
T

Tidal

Member
Joined
Oct 9, 2020
Messages
115
I read your comment about low bioavailable copper and high calcium. My guess was that some parasite or infection was causing calcium dysregulation (or maybe just the meds you took induced hypermethylation and turned off the calcium-regulating genes). Calcium dysregulation would lead to cortisol dysregulation, causing low bioavailable copper, and excess calcium in soft-tisue and insufficient calcium where it is actually needed, such as in bones and brain, leading to chronic fatigue, cognitive issues, low testosterone, etc.

Vitamin A (especially from liver) would help to eliminate any infection if an infection is the cause, if hypermethylation is the cause then avoiding methionine in the diet (especially eating gelatin, which is deficient in both methionine and tryptophan) would help to reactive the genes necessary for retaining calcium.

I don't think restoring calcium regulation is as simple as taking vit D.

I don't mean to sound negative, but if that is indeed the issue then this is extremely complicated, but the one thing that definitely will help is complete EFA deficiency and keeping FFA/prostaglandins as low as possible.

On a less dramatic note it also could be as simple as too much endotoxin. In that case a daily raw carrot/cooked mushrooms/bamboo shoots or antibiotics could quickly clear it up.

I do think it's likelier to be the meds causing calcium dysregulation, if honest. Thank you for the information. I can try some vitamin A next maybe and look into gelatin. Admittedly I don't know much about methionine.

It's ok, I knew this was something extraordinarily complex when it all happened. It really does suck though.

What do you mean by complete EFA deficiency? And I should keep FFA's low? It could be endotoxins. Could be anything really. My issue is that I just have so much going on.

Actually I don't know if this will give a clue or not, but I have rather low platelets now following the TCAs
 
OP
T

Tidal

Member
Joined
Oct 9, 2020
Messages
115
Nuts aren't great. Not sure about bananas. Are you also eating plenty of salt?

Yes I'd say so.

In response to your other post though, I've tried magnesium quite a bit but never seems to do anything. When it comes to calcium, I really don't know if it's good or bad anymore. Thanks
 
OP
T

Tidal

Member
Joined
Oct 9, 2020
Messages
115
Progesterone cures everything. I would also try methylene blue. I would also advice against large doses of most things. 1-10 mg of methylene blue is reasonable, progesterone you can take huge amounts though it will get you high. Just make sure you get bioidentical progesterone (Progest-E or similar).

In any case, I'm sorry this happened to you. What they did to you was awful and no one should go through this. I admire you and your dedication to healing yourself.

Thanks. I've been very hesitant to play with hormones after everything that has happened. Don't know much about methylene blue but will look into it.
 

Hugh Johnson

Member
Joined
Mar 14, 2014
Messages
2,648
Location
The Sultanate of Portugal
Thanks. I've been very hesitant to play with hormones after everything that has happened. Don't know much about methylene blue but will look into it.
You are right to be hesitant. And progesterone is so safe that the only real problem it can cause is messing up the monthly cycle. But that doesn't seem relevant to you. You can safely the hundreds of milligrammes a day.
 

Similar threads

Back
Top Bottom