How to cope with disabling brain symptoms?

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I clearly remember thinking that if this "feeling" or whatever it is will last more than few weeks, I would have to kill myself. This was in the first week of last June and it haven't subside a bit since then. I really don't know how to cope with this anymore and I feel I'm losing it.

I don't think I have classic CSF/ME as my body functions ok most of the time. I'm weaker and my muscles shake as soon as I try to do some anaerobic stuff, but I can walk several kilometers and don't get PEM.

But my brain is really fucked. In span of three days I went from having successful carrer as a software developer to not really being able to use a computer, think straight, read non trivial text with any real comprehension, focus on one thing at a time, etc. I'm light sensitive, dizzy and confused all the time, my perception of time is different, my epizodic memory is really bad, I feel this horrible sensation like my brain is beeing attacked/is on fire and I'm having problems process my field of vision whenever I try to think a bit.

Before this, computer and reading took most of my time. I was programming at work, then some more at home, playing games and reading all kinds of literature (from technical to history). I'm a nerd in nature I guess. I was also playing soccer regulary and riding my motorcycle on the weekends.

I can't really do any of this anymore. Technicaly I can do all of it, but I feel like dying doing it. My brain keeps shutting down, my vision is fucked (I can't even describe this part), I'm confused, lightheaded, disoriented and I just wanna lie down and rest.

I try to meditate and my mind is constantly going, sometimes it seems I have multiple tought processes at one time with a stuck song under all of that. Seems like I "think" all the time but can't really think/concentrate on anything. I hate it.

I try to lie down and rest and my head feels like it's shaking, I'll get to this state between sleep and wakefulness with dreams that feels like halucinations. It's scary.

I can't handle it. I have borderline personality disorded, which I was always able to manage without much hussle, but now with this shit going on I'm going crazy. I can't have a normal conversation with anybody because of my symptoms and because I keep thinking how healthy they are and I just envy them when they're talking about work and normal stuff while I'm in hell. I keep thinkg in extreme, in lines "I will never get better". I pitty myself and keep thinking and ruminating about the past how everything was so easy and nice. I'm bitter and sad, I cry everyday.. I'm alienating my girlfriend because of this, I sense she had enough and I can't blame her. I'm lost cause, shell of a person, not really the same person she fell in love with.

This is 24/7 and it's not responding to any medications (mostly psychiatric, because it's depression according to health care here) or supplements. I'm tired of researching new supplements, everyhing I try just doesn't do anything. Doctors keep looking at me like I'm hypochondriac and dismiss everything I suggest.

I can't work, can't do anything really, despite being "physicaly healthy". I can't have peace for 5 minutes. I don't know how to cope with this. I really don't see the point in living when my brain is not working and I feel disoriented/confused/scared and as my brain is under attack all the time.

I really want to live, but don't want to exist like this at the same time. I'm suicidal. I guess I don't really expect any help, because nothing can help this, but I needed to vent.
Thank you for reading.
 

ScottTriGuy

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Thanks for sharing. I wish I had answers to your problems.

You've probably already researched / experimented with this path, but working on the assumption (and some data) that our brains are inflamed, you may experience some relief / improvement trying to decrease brain inflammation (diet, supplements, CBD, etc).

I know LDN has helped me and quite a few others (iirc, it 'calms' microglia).

Also, what sort of emotional support do you have (counsellor, friend, etc)?
 

percyval577

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I'm a nerd in nature I guess.
...
This is 24/7 and it's not responding to any medications (mostly psychiatric, because it's depression according to health care here) or supplements. I'm tired of researching new supplements, everyhing I try just doesn't do anything. Doctors keep looking at me like I'm hypochondriac and dismiss everything I suggest.
As the doctors obviously don´t kow what they do (when prescribing), I would carefully question the medicals. Doctors seem to know a lot and to understand few, if you ask me (it´s my own sad experience, not without being harmed).

If you are a nerd you may have easier the chance to figure something out. Even if it is difficult to think, you might get something out of it.

In my opinion it´s a breakdown of these geometrical inner brain structures. There are metals (mostly ultra trace metals, therefore not well recognized so far), and there are aminoacids (I guess including lycine), which are typically neurotransmitters. Eg: Chocolate contains "these" metals, so too much chocolate might be dangerous, but say 9g I experience good effects with! I love the combo gaba/taurine.

Though I guess the first influence on the disease might be to reverse the impact, and if the impact has been there, well. But mostly the impact might have taken place on the immunesystem. What might the triggers have done? (that the synapse structures in the "inner" brain might have broken down)?
I don´t know anything about borderline, also have rn forgotten the most I have watched about other diseases (watched all the Ben Garside videos on this, letting them run, watching them a second time etc.). There might be something, who knows?

I am slowly recovering, and will be able to work soon enough, but it´s not that the improvements have been/are easy. [Usually] normal ppl are not able to imagine what might happen in the complex (human) brain.
 
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PatJ

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because nothing can help this
Please don't assume nothing can help your current condition. As the quote says "I haven't come this far to only come this far." You've made it through many days of feeling like hell, and you can make it through more while looking for a solution.

Please note that none of this information is medical advice. I'm listing it here to give you more to look into.

I've felt some of the symptoms you describe. Things that have helped include LDN, getting better sleep (Relax-eze has been a great help lately), digestive enzymes to help digest food better since I have poor pancreas function and don't absorb nutrients properly otherwise, whey protein and methylB12 helps to stabilize my mood (I think because whey protein contains a lot of amino acids). You may also want to consider trying a free-form amino acid complex in case you're low in a particular amino acid.

Here's a bunch of things for you to consider (I've included some that are related to depression just in case the info may help):
Books: "The book "The Mood Cure" by Julia Ross, and the book "The Ultra-mind Solution" by Mark Hyman both have quizzes in them that give an indication of whether the various neurotransmitters and hormones are low, and which amino acids and other supplements will help in each situation." (comment from richvank on PR)


Another note about "The Mood Cure" from a comment on ask.metafilter:
"Before you start taking anything, pick up a copy of The Mood Cure. It's an amazing resource for figuring out which amino acid and/or supplements would be right for your particular brand of depression/anxiety, and gives you optimal doses and what time of day to take things (which can be super important). It's not woo at all, easy to read."


Low or high vitamin D, potassium, or salt can cause some of the symptoms you describe. Some people rely on lithium orotate as a mood stabilizer.


Sodium/potassium and effect on mood, from lineup on CureZone:
Sodium/potassium balance is controlled by adrenal functions, during my nutritional studies there was something called sodium/potassium inversion in which sodium becomes lower than potassium (in relational value or ratio). Reports would show that this inversion can cause phobias, depression and the like.


Zinc for depression, from AquariusGirl on PR:
"Also zinc was a huge breakthrough for me & I read where some psychiatrists are giving zinc to folks who are not responding to regular drug treatment for depression."


From TheChosenOne on PR:
Low dopamine/serotonin can cause depression and pain. What really helps for me is lithium and tyrosine.


Suicidal thinking and low serotonin, from: http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_Recognizing_Clues.htm
Tryptophan is an essential amino acid, that we can't manufacture ourselves. The brain uses it to produce the neurotransmitter serotonin, which maintains emotional calm, regulates sleep, and prevents depression. Suicidal patients show significant decreases in serotonin levels. Autopsies have shown that a very low brain level of serotonin is one biological marker to suicide. People who are depressed or agitated can often use tryptophan as effectively as antidepressants.


High glutamate, from adreno on PR:
"Depersonalization is likely tied to glutamate hyperactivity, which can be caused by inflammation. High glutamate is very damaging to the brain. Glutamate hyperactivity will also tend to decrease dopamine transmission. I would look into NMDA antagonists/modulators, perhaps memantine, NAC, lithium or magnesium threonate. Anything that reduces inflammation in the brain is also likely to help."


High glutamate?:
Symptoms of high glutamate (summarized here, expanded in article with refs):
https://area1255.blogspot.com/2016/04/symptoms-of-high-glutamate-levels-in.html

Insomnia, Social Anxiety, Emotional Lability (being over-emotional, crying at movies, music, smells etc), Agitation, racing thoughts, hedonic attachment (clinging to whatever leads to good feelings), stress (overthinking, lasting anger or sadness), attraction to novelty, shopping sprees (feeding desire, not need), addictions, manic behavior.


Cold water therapy (encourages a parasympathetic/calming response) - try holding hands in cold water, placing your face in cold water, or a cold shower.


Niacin (not niacinamide/non-flushing) - some people are overmethylated. Niacin can help to slow down methylation and may relieve depression in some people within an hour. Dr. Lynch recommends 50mg every few hours until symptoms subside. This isn't a good idea if you have low blood pressure because niacin is a vasodilator.


Iodine, from an interview with Lynne Farrow (author of The Iodine Crisis):
We have a mystery novelist on our group and she was incredibly depressed. She was having trouble writing and she cried every day. And then she started taking iodine and she hasn't cried since except at her father's funeral.


Mindtrac, from: https://drchristophersherbshop.blogspot.com/2011/03/natural-protocols-for-depression.html
Mindtrac- Dr. Christopher formulated this for people who wanted a natural alternative to antidepressants and anxiety medications. It contains Valerian root, scullcap, ginkgo, oregon grape, st. John's wort, mullein, gotu kola, sarsaparilla, dandelion, lobelia, rosemary & jurassic greens. It is lightly cleansing and more nourishing than isolated herbs, while providing the calming effect of the common nervine herbs.
 

Hip

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. In span of three days I went from having successful carrer as a software developer to not really being able to use a computer, think straight, read non trivial text with any real comprehension, focus on one thing at a time, etc.
The impact of ME/CFS can be much harder when you have the rapid onset type like you did (rapid onset is when the full symptoms appear in days).

In gradual onset cases, it gives you more time to get used to the disease. The gradual onset occurs over several months, typically after being hit with a viral infection. Then disease may progress further over then next few years.

So in these cases, you slowly descend into ME/CFS; whereas with sudden onset, the shock of one minute being perfectly well and the next minute being completely ill I imagine is very hard to cope with. In my case I hd gradual onset.
 

Wishful

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I don't fit into the category of 'classic ME' either. I don't have muscle problems, though I do get PEM from muscle-damaging physical activities (though I found an effective blocker for that too). My worst ME symptom is the hampered brain function. It's not as severe as your's sounds, but I've also had a long time to get used to it.

I also suffered from strong suicidal moods in the first few years. I eventually discovered that the severity of those moods were linked to tryptophan intake and niacin. One niacin tablet, and I would be thinking of how to kill myself. Avoiding niacin-rich (and minimizing TRP too) foods stopped that. My hypothesis is that my microglial cells are overproducing quinolinic acid, known to be a cause of suicidal moods. In the absence of dietary niacin, my cells would produce more enzymes that convert more of that excess QUIN into niacin. Just knowing that my suicidal moods were chemically-induced helped me deal with them.

The lack of progress in finding the cause of my symptoms was a strain for me too. I didn't know I had ME until year 15 or so, because I didn't fit the American criteria for it. I trusted the medical system to be there to help me, but all I got was 'Sorry, can't be bothered to help you.' Very disheartening. Even the people and services that are supposed to provide help for people with suicidal moods said 'Sorry, can't help you.' It seems that those services are only for common, easily treated causes of suicidal moods.

I did manage to avoid suicide, and managed to keep looking for answers. In the 17 years of my ME, I've discovered many things (foods and activities) that I need to avoid to minimize my symptoms. I've discovered a few things that helped, but most of those only helped for a short period, then stopped working. I've found two treatments that continue to work reliably for me, and greatly improve my quality of life, but they don't seem to work for anyone else. So, it is possible to improve your quality of life with ME, but it does take time, and experimentation (and keeping good records, since our memories are inadequate for remembering such details).

If you're experiencing double-vision, that's a known symptoms of ME. I developed in in the last year. My vision has always been lousy, but this is the only symptoms I can reasonably attribute to ME.

If you really don't have PEM, whether physically or cerebrally induced, then you may not have ME, and should get more testing done for other possible causes. However, ME is complex enough that it's probably possible to have it--or a very similar disorder--without having noticeable PEM.

If you're thinking of following treatment suggestions, keep in mind that what works well for one person may have an opposite effect on someone else. Some people here benefit from niacin, while it makes my symptoms worse and causes those suicidal moods. Iodine works for me, but only when it's one dose every 21 days; continual supplementation doesn't work for me. Suggestions here are things that have potential to have an effect on your symptoms. You'll have to experiment on yourself to see if they have any effect on you, and whether it's positive or negative for you, and what sort of dosage to follow.

I gave up on expecting doctors to help me. They can't do that until the researchers figure out the cause, or maybe stumble on an effective treatment they don't understand. I'd avoid psychiatric drugs: even the professionals don't know what the effects are for PWME. Really, I don't see psychiatrists being any more likely to help than a voodoo practitioner shaking a dead chicken over your head.

Yes, the first year is probably the worst part of ME, at least as far as realizing that it's not just going to go away any time soon. It's kind of a betrayal of trust: you treated your body relatively well, with decent diet and exercise, and it's let you down. On top of that, the medical system, that you probably believe was there for just this sort of problem, also betrayed your trust. Those betrayals hurt. However, it's just part of life. It's not much different from other life-altering events or diseases that don't have an easy solution. Maybe it would help to think of worse events, such as being hit by a drunk driver and being a quadriplegic with brain damage.

I am optimistic about the research into ME. They've discovered some aspects of ME, and the tools are improving rapidly. I think there's a reasonable chance of treatment in the next few years. If you're in your first year of this, that may seem like an impossibly long time to hang on, but some PWME have been suffering worse for decades. I'm not exactly enjoying life, but I'm not giving up on the possibility of enjoying life again. If you give up on life now, you won't have the opportunity to change your mind later.

As someone who eventually did manage to find treatments (and avoidances) that improved my quality of life: keep trying. :hug:
 

Wishful

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One more positive thought to keep in mind: ME does seem to be quickly reversible, rather than permanent damage. It's possible to go from horrible symptoms to full remission over the space of minutes. We just don't yet know how to trigger that switch reliably and how to keep it in that healthy state. Researchers are working on that part...
 

Mary

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@talkinghead - in @PatJ's excellent post, he talks about high glutamate possibly being a factor in your symptoms. I don't have the cognitive issues you do; however, I have had problems with excess glutamate, particularly acute when withdrawing from lorazepam. I discovered that high dose vitamin C can be very helpful with excess glutamate: https://www.ncbi.nlm.nih.gov/pubmed/25701025 I ended up taking a couple thousand milligrams every couple of hours and when I would wake up at night too, and it helped calm me down. Relora also helped a little. You might want to experiment with this, though as with everything, I suggest starting low and going slow until you know how you react.
 
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Thank you all for your words.

I know LDN has helped me and quite a few others (iirc, it 'calms' microglia).
This one I haven't tried yet, my psych told me the prescribe it only to alcoholics. I might have to get it online it seems.

Also, what sort of emotional support do you have (counsellor, friend, etc)?
I have really wonderful and understanding girlfriend. Also my family is mostly supportive. But I don't know how long it gonna last and thinking about loosing this support (especially my girlfriend) makes me pretty depressed.

As the doctors obviously don´t kow what they do (when prescribing), I would carefully question the medicals. Doctors seem to know a lot and to understand few, if you ask me (it´s my own sad experience, not without being harmed).
Yeah they seem pretty useless. Only one doctor was able to admit that maybe there is something wrong with me, but she (and "modern medicine" as she also added) doesn't know what. Others are adamant it must all be just anxiety if their test don't really show anything. (They may be right, but I can't really tell if I could made this all up)

I've felt some of the symptoms you describe. Things that have helped include LDN, getting better sleep (Relax-eze has been a great help lately), digestive enzymes to help digest food better since I have poor pancreas function and don't absorb nutrients properly otherwise, whey protein and methylB12 helps to stabilize my mood (I think because whey protein contains a lot of amino acids). You may also want to consider trying a free-form amino acid complex in case you're low in a particular amino acid.
I tried methyl B12 and whey, haven't notice any difference. My digestion is weird since all this started, I'm experimenting with what I eat, but maybe I should look into some digestive aids. My sleep was very bad at the beginning but it got a bit better with trazadone and time. I still wake up few times a night, but that's much better than before. Definitely should try LDN.

Low or high vitamin D, potassium, or salt can cause some of the symptoms you describe. Some people rely on lithium orotate as a mood stabilizer.
My vitamin D test showed I'm just under the range, so I'm supplementing it, but without success. Electrolytes were fine according to blood test, but I'm trying to supplement different ratios of potassium, sodium and magnesium, also no change.

I would look into NMDA antagonists/modulators, perhaps memantine, NAC, lithium or magnesium threonate.
I'm on NAC, lithium and some other form of magnesium, don't know which really. I don't feel any difference on them. Do you think is it worthy to try threonate specifically? I've read about memantine, but don't remember much, I'll look it up again and maybe give it a go.

Cold water therapy (encourages a parasympathetic/calming response) - try holding hands in cold water, placing your face in cold water, or a cold shower.
I was doing cold showers way before this. Now it makes me feel worse for some time, so I'm avoiding it, but maybe it would be beneficial in the long term.

Niacin (not niacinamide/non-flushing) - some people are overmethylated. Niacin can help to slow down methylation and may relieve depression in some people within an hour. Dr. Lynch recommends 50mg every few hours until symptoms subside. This isn't a good idea if you have low blood pressure because niacin is a vasodilator.
I don't know my methylation status, but from what I've read, I'm most likely undermethylator. I tried some form of methylation protocol without any change in symptoms.

The impact of ME/CFS can be much harder when you have the rapid onset type like you did (rapid onset is when the full symptoms appear in days).
I guess I felt some tiredness (and generally I didn't feel quite "right") in the weeks right after my (presumably) EBV infection, but only after I got hep vaccine and herpes outbreak around my eye, I got all this neuropsych symptoms in span of three days.

One more positive thought to keep in mind: ME does seem to be quickly reversible, rather than permanent damage. It's possible to go from horrible symptoms to full remission over the space of minutes.
Well I hope this also applies to my case, since I don't seem to have classic ME. There are definitely moments when I feel better for a brief period. I can't really connect it to anything (aside from avoiding lights), but I hope it means this can be fixed/reversed somehow.

I discovered that high dose vitamin C can be very helpful with excess glutamate
I actually read your post mentioning this some time ago, and since then I'm on few grams thru the day, but I don't feel any different sadly.
 

Hip

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I guess I felt some tiredness (and generally I didn't feel quite "right") in the weeks right after my (presumably) EBV infection, but only after I got hep vaccine and herpes outbreak around my eye, I got all this neuropsych symptoms in span of three days.
You probably know that hepatitis B vaccination is the one most strongly linked to triggering ME/CFS. I wonder if your ME/CFS was triggered because you already had a recent viral infection, which you think was probably EBV, and then you had the vaccine on top of that?

Perhaps that dual-factor scenario might explain many cases of vaccine-triggered ME/CFS?

Perhaps knowingly or unknowingly, people may have caught an ME/CFS-associated virus like enterovirus or herpesvirus a few weeks before a vaccination (sometimes viruses are caught asymptomatically, so you would not always know that you have caught a virus), and the virus on its own was not an issue, but once the vaccination was given, the combination of virus and vaccine triggered the ME/CFS.

Dr Chia found a similar dual-factor trigger for ME/CFS: he found that a combination of a recent viral infection plus corticosteroids drugs often leads to the triggering of ME/CFS.
 
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starlily88

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But my brain is really fucked. In span of three days I went from having successful carrer as a software developer to not really being able to use a computer, think straight, read non trivial text with any real comprehension, focus on one thing at a time, etc. I'm light sensitive, dizzy and confused all the time, my perception of time is different, my epizodic memory is really bad, I feel this horrible sensation like my brain is beeing attacked/is on fire and I'm having problems process my field of vision whenever I try to think a bit.
I feel so badly for you - I felt like exactly what you are saying last March 2018 for next 13 months - from this very rare thyroid disease that hits 1 out of 300,000 people in the world.
The brain sensations were the same - so I did blood tests of course, but included my Sedimentation Rate.
It was so very high greater than 130 - which is quite high - my brain was so inflammed I literally thought I was truly dying. I was put on short term of prednisone to get swelling down (very short term, I think 12 days of steroids).
It was amazing because I did not feel like I was dying anymore after 5th day, and I did not feel sad anymore, and felt even, and my concentration was back.

You really have to realize that you are dealing with "Physical/Physiological" changes in your brain, your autonomic nervous system. Anti depressants did not help me - but addressing the huge inflammation did.

When someone is functioning at a high level like you were, and then, bam it is gone, I pretty much can say it is physical - also you might need serotonin, not a dr, so don't know beans about these.

Don't give up now - find an Endocrinologist right away - have everything tested - like your cortisol levels, your adrenal glands, especially your thyroid - which can wreck your breathing, thinking, metabolism, cognition, etc
Starlily
 

crypt0cu1t

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I clearly remember thinking that if this "feeling" or whatever it is will last more than few weeks, I would have to kill myself. This was in the first week of last June and it haven't subside a bit since then. I really don't know how to cope with this anymore and I feel I'm losing it.

I don't think I have classic CSF/ME as my body functions ok most of the time. I'm weaker and my muscles shake as soon as I try to do some anaerobic stuff, but I can walk several kilometers and don't get PEM.

But my brain is really fucked. In span of three days I went from having successful carrer as a software developer to not really being able to use a computer, think straight, read non trivial text with any real comprehension, focus on one thing at a time, etc. I'm light sensitive, dizzy and confused all the time, my perception of time is different, my epizodic memory is really bad, I feel this horrible sensation like my brain is beeing attacked/is on fire and I'm having problems process my field of vision whenever I try to think a bit.

Before this, computer and reading took most of my time. I was programming at work, then some more at home, playing games and reading all kinds of literature (from technical to history). I'm a nerd in nature I guess. I was also playing soccer regulary and riding my motorcycle on the weekends.

I can't really do any of this anymore. Technicaly I can do all of it, but I feel like dying doing it. My brain keeps shutting down, my vision is fucked (I can't even describe this part), I'm confused, lightheaded, disoriented and I just wanna lie down and rest.

I try to meditate and my mind is constantly going, sometimes it seems I have multiple tought processes at one time with a stuck song under all of that. Seems like I "think" all the time but can't really think/concentrate on anything. I hate it.

I try to lie down and rest and my head feels like it's shaking, I'll get to this state between sleep and wakefulness with dreams that feels like halucinations. It's scary.

I can't handle it. I have borderline personality disorded, which I was always able to manage without much hussle, but now with this shit going on I'm going crazy. I can't have a normal conversation with anybody because of my symptoms and because I keep thinking how healthy they are and I just envy them when they're talking about work and normal stuff while I'm in hell. I keep thinkg in extreme, in lines "I will never get better". I pitty myself and keep thinking and ruminating about the past how everything was so easy and nice. I'm bitter and sad, I cry everyday.. I'm alienating my girlfriend because of this, I sense she had enough and I can't blame her. I'm lost cause, shell of a person, not really the same person she fell in love with.

This is 24/7 and it's not responding to any medications (mostly psychiatric, because it's depression according to health care here) or supplements. I'm tired of researching new supplements, everyhing I try just doesn't do anything. Doctors keep looking at me like I'm hypochondriac and dismiss everything I suggest.

I can't work, can't do anything really, despite being "physicaly healthy". I can't have peace for 5 minutes. I don't know how to cope with this. I really don't see the point in living when my brain is not working and I feel disoriented/confused/scared and as my brain is under attack all the time.

I really want to live, but don't want to exist like this at the same time. I'm suicidal. I guess I don't really expect any help, because nothing can help this, but I needed to vent.
Thank you for reading.
Find a doctor to check for Autoimmune Encephalitis by screening for anti neuronal antibodies. I have the same symptoms as you and was diagnosed with seronegative autoimmune encephalitis and AAG along with likely sjogrens and LEMS or MG

Run the quest autoimmune neurology panel, check your ESR/CRP along with the Cunningham panel & celltrend to rule out autoimmune causes.
 
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