Need help with severe cognitive issues and sensory overload

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Apologies in advance for a long post! I am seeking advice for my daughter who has had M.E. for the past seven years. The thing that she finds hardest to live with is the impact on her brain. Cognitive functioning has always been a particularly bad symptom and was one of the first to develop, before many of the physical effects.

Her most severe phase, where she was down to about 5-10% functioning, lasted a year. However, she has developed new cognitive symptoms since she came out of that. For example, feeling less conscious/aware. She says it's like blacking out, though she can see fine - as if she's just about to lose consciousness completely.

She finds it very hard to rest when she needs to, even when trying not to focus on anything or think, it feels like her brain is pushed past it's limit. She never feels her brain rests at all.

She's extremely sensitive to both light and sound. Since the ME began she's found it difficult to take in new information or remember things. At her worst, she often couldn't recognise people around her and follow the simplest conversation. Her recognition's improved but she still has great difficulty maintaining a conversation. If there are more than two people talking, it's impossible for her to follow. She used to listen to audio books quietly in the dark, but now feels like any stimuli is more than her brain can cope with.

There's a recurring pattern where when her other ME symptoms are better, most notably: having more physical energy; more light tolerance and being able to stand and walk further, she says her brain feels, "so stretched and unhealthy, like something's ripping apart in it or about to explode ." It feels like worse cognition could be a response to other symptoms. She feels that not enough oxygen/blood is reaching her brain, like it's in a constant seizure.

In conjunction with the consciousness/awareness problems, she's noticed an increase in compulsive behaviours (comfort eating etc.).

She had an MRI scan of the brain, which didn't indicate any swelling or damage. She had an assessment by a neurologist (who arranged the MRI) but their only advice was to try graded exercise. She's also seen a psychiatrist who was unable to suggest anything to help. We've tried a range of supplements such as ginseng and L-glutamine but haven't noticed any benefits. She also practised meditation for a long time but is no longer able to.

We are interested in any treatments or tests that other people have found useful for improving their cognitive function.
 
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She had an MRI scan of the brain, which didn't indicate any swelling or damage. She had an assessment by a neurologist (who arranged the MRI) but their only advice was to try graded exercise. She's also seen a psychiatrist who was unable to suggest anything to help. We've tried a range of supplements such as ginseng and L-glutamine but haven't noticed any benefits. She also practised meditation for a long time but is no longer able to.
An MRI scan wont tell you that much as they are not sensitive enough to pick everything up. Graded exercise would be a disaster at this stage in her illness. As you say she is sensitive to stimuli -light and sound- Ginseng, and any other stimulating supplement, is probably not a good idea. One thing that has helped some here is Branched Chain Amino Acids- BCAA-. Holland and Barrett sell them, cost about a tenner for a pack. Best not to take them later than late afternoon as they can cause insomnia. Take them an hour or so before a meal is best, although I should say opinions vary about that. @Mary and @ljimbo423 have found them useful. You around folks?
 

Mary

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One thing that has helped some here is Branched Chain Amino Acids- BCAA-. Holland and Barrett sell them, cost about a tenner for a pack. Best not to take them later than late afternoon as they can cause insomnia. Take them an hour or so before a meal is best, although I should say opinions vary about that. @Mary and @ljimbo423 have found them useful. You around folks?
BCAAs have primarily helped me recover from PEM (post-exertional malaise). They cut my recovery time by more than half so they have been (and continue to be) a big help to me. They've also increased my stamina a little. However, I don't think they've had much impact on my cognitive functioning though perhaps it's been subtle. But I haven't had the severe cognitive issues that @Eilidh 's daughter has.

@Eilidh - I think it would be good to change the title of your thread to reflect more accurately what it's about and you very well may get more helpful responses that way - e.g., "Need help with severe cognitive issues and sensory overload" or something similar. You can't change the title yourself because you're such a new member but I would be happy to do it for you - just post here if you'd like me to do this, and what title you would like.

There are so many posts and threads, members can't read them all so it's important to have a title which describes as clearly as possible the issues in the thread.

Also, have you looked into B12? I know it's helped some people with things like brain fog.
 
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Might want to have vit D level checked. My wifes was very low, which caused lack of memory retention, and gluten issues. She doesnt have ME, but was told they are starting to check for low levels in patients these days
 

Hip

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We are interested in any treatments or tests that other people have found useful for improving their cognitive function.
Vitamin B12 methylcobalamin injections can be helpful for improving brain fog in ME/CFS. There are also B12 transdermal oils which are just as effective as injections, but more convenient to administer (just rub the oil on the skin).

Piracetam is another useful supplement which can improve brain fog.
 

Judee

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@Mary, you were talking here https://forums.phoenixrising.me/threads/not-absorbing-vitamins-any-ideas.77967/#post-2235121 about taking glutamine and getting insomnia. I wonder, @Eilidh, if the glutamine is converting to glutamate in your daughter's body and causing excitotoxicity in her brain.

@YippeeKi YOW !! talks about it in this thread: https://forums.phoenixrising.me/thr...horous-might-be-key.78729/page-3#post-2261692 starting in thread #60 (look for the numbers at the bottom of each post on the right side).
 

percyval577

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@Eilidh , I can say that I have a pretty nice success, but sadly also a pretty slow success. At least its a constant one, and it´s going on since 2015. I get this from low manganese intake, and it turns still out that I am sensitive to manganese. In the hindsight I could notice this even in the past, since I was four.

When I began I had for three months almost a completely healthy feeling, especially apart from this: When I made some mistakes, I got very terrible effects, mostly lasting for 26h, and popping up only 22h after I had made them. After three months I relapsed and only a very slow progress took place. For some time I did a very low manganese diet, but I think it is better not to overdo it.


After a year I started to search for additional influences. I finally found some, but how important it is is difficult to tell. It´s mostly to take certain metals and vitamins in small dose and not together, instead one after another and in tendency with iteration, with some convenient sequence. Some stuff I took/take in normal dose. To name two renown ones: B12 I take in small dose and only seldom, and some members report bad effects from it at least after a while or at least in very high dose. Selenium I took/take in normal dose, and my impression is that selenium is most helpful here on the website. Magnesium might be a consideration.


I am now working on a second avoidance, and it seems that avoidances are the thing in my case. But this one is hard to do. I reduce sugar and even starch. I havn´t figured out yet how to do it. Fermented product seems to help. So I drink kefir, eat yogurt (these ones contain some sugar) and cheese, plant oils maybe, vegetables but no fruits, protein snacks without much sugar, and sometimes (maybe every third day) chocolate with all its metals might be possible. I think this avoidance is in respect to other effects much more doubtful than a low manganese diet.

For the manganese thing you might check my threads on it, most of them just provide literature. The interpretation is open enough. I preferred a pure neurological one, with possible downstream effects. Now I am considering in some sense an underlying cause of it (so rather not some predisposition and a trigger), it might be yeast overgrowth. But I feel inclined to think that it´s rather a complex thing (otherwise it would be known, probably): kind of symbiosis <-> immune function <-> nerve function.
 
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BCAAs have primarily helped me recover from PEM (post-exertional malaise). They cut my recovery time by more than half so they have been (and continue to be) a big help to me. They've also increased my stamina a little. However, I don't think they've had much impact on my cognitive functioning though perhaps it's been subtle. But I haven't had the severe cognitive issues that @Eilidh 's daughter has.

@Eilidh - I think it would be good to change the title of your thread to reflect more accurately what it's about and you very well may get more helpful responses that way - e.g., "Need help with severe cognitive issues and sensory overload" or something similar. You can't change the title yourself because you're such a new member but I would be happy to do it for you - just post here if you'd like me to do this, and what title you would like.

There are so many posts and threads, members can't read them all so it's important to have a title which describes as clearly as possible the issues in the thread.

Also, have you looked into B12? I know it's helped some people with things like brain fog.
Hi Mary, thank you so much! I see what you mean about the title, and would be very grateful if you were able to change it to the one you suggested.

We will definitely look into the branched chain amino acids.

We have tried B12, but only in tablet form and people here have suggested other methods, so that's another possibility.

Thank you!
 
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@Eilidh , I can say that I have a pretty nice success, but sadly also a pretty slow success. At least its a constant one, and it´s going on since 2015. I get this from low manganese intake, and it turns still out that I am sensitive to manganese. In the hindsight I could notice this even in the past, since I was four.
Thank you Percyval! I'm glad to hear that you are making progress, even if it is slower than you would wish. I don't think I've heard of sensitivity to manganese before, so will definitely look into that.

We have tried selenium and magnesium, but haven't noticed any particular effects, good or bad. Though sometimes it's very hard to know what has triggered a worsening in your condition.

Thank you for such a detailed response, I'm making lots of notes on everything, and am sure I'll be returning to your message again.

Wishing you all success, Eilidh:)
 
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Mary

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We have tried B12, but only in tablet form and people here have suggested other methods, so that's another possibility.
I did B12 injections for a couple of years and they didn't help much - in retrospect I think I needed a higher dose. I've had the best results with liquid methylcobalamin - taking it sublingually, two 5000 mcg. doses a day. That's a high dose but that's what I need to get results, and, as always, we're all different. I've had good results with these products:
https://www.iherb.com/pr/KAL-B-12-M...IcQ0qhozyfSWeb2sV4IaAkB2EALw_wcB&gclsrc=aw.ds

https://smile.amazon.com/Organic-Vi...liquid+methylcobalamin&qid=1588000288&sr=8-5l

https://smile.amazon.com/Bluebonnet...thylcobalamin+5000+mcg&qid=1588000331&sr=8-10

And I like the KAL brand product the best. It's a spray, so less messy to use. Also, maybe I'm wasting less with the spray, but I take 2 sprays in the a.m. and 2 in the p.m., and it lasts me a month though it should only last 2 weeks at that rate . . . so maybe the sprays aren't the full dose, maybe it's more effective than other products I've used, I don't know, but all I know is that it's working for me at about 1/2 the cost of the other products.
 

PatJ

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For example, feeling less conscious/aware
I've had this feeling for most of the time I've had ME/CFS, close to two decades.

She finds it very hard to rest when she needs to, even when trying not to focus on anything or think, it feels like her brain is pushed past it's limit. She never feels her brain rests at all.
That sounds a little like a 'wired but tired' feeling, or overexcited neurons. Forum member Hip has a useful post about supplements that he has found useful in reducing that feeling.

She's extremely sensitive to both light and sound.
I've found taurine to be useful for my sound sensitivity. I take 0.5 grams, 3 times per day. I can now hear lawn mowers, fans, my fridge, and other rapid repeating sounds without feeling like my brain is inflating and about to pop. High dose vitamin C has been useful as well. I currently take roughly 6 grams per day of the sodium ascorbate form of vitamin C.

Since the ME began she's found it difficult to take in new information or remember things.
That's unfortunately very common for someone with ME/CFS.

If there are more than two people talking, it's impossible for her to follow.
That's also common. When our brains feel like they're overwhelmed to start with, then adding the cognitive demand of keeping track of multiple conversations and filtering out the sounds etc. leads to a feeling of mental overload.

She used to listen to audio books quietly in the dark, but now feels like any stimuli is more than her brain can cope with.
Supplements that reduce glutamate might be helpful. See Hip's post above. Taurine and vitamin C are known to reduce glutamate.

She feels that not enough oxygen/blood is reaching her brain, like it's in a constant seizure.
Here is a link to Dr. Cheney's information about excitatory neurotoxicity (when the seizure threshold in the brain is lowered and excess sensory input can cause neuron death): https://www.prohealth.com/library/dr-paul-cheney-discusses-the-benefits-of-klonopin-19834

BTW Dr. Cheney is in favor of using the drug klonopin but many people strongly advise against it since it's a benzo drug and can often cause more harm (far more harm) than good, especially when trying to stop taking it.

And here is a post on Health Rising about glutamate and neuroinflammation: https://www.healthrising.org/blog/2...fs-puzzle-the-neuroinflammatory-series-pt-ii/

she's noticed an increase in compulsive behaviours
Some people with ME/CFS seem to develop OCD, ADHD, or sometimes flip back and forth with normal periods between.

One thing that has helped some here is Branched Chain Amino Acids- BCAA
I tried BCAA and my cognitive problems got worse. But then I tried whey protein powder (Natural Factors Whey Factors) which contains a lot of aminos, including BCAA, and noticed some benefits without the cognitive side effects. Whey protein contains a wide mix of aminos (including BCAA) but BCAA alone are a limited mix which causes problems for some people.

This site explains some reasons to consider avoiding BCAA and stick with a wide range of aminos. Some of the reasons explained in the article include:
* High doses of BCAA can deplete B vitamins
* BCAA can deleteriously affect serotonin levels
* BCAA may cause insulin resistance and dysregulate blood glucose metabolism

But, obviously some people do just fine with BCAA so it's one of those try-and-see supplements.
 

Jessie 107

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@Elididh
Things that have helped me,
Nimodipine increase's blood flow to the brain,
Hemp oil, B12 injections once a week, a good diet low in carbs no sugar. Good fats.
I was also finding it hard to rest, then I had my Cortisol levels checked, it turns it was way too high I was running on Adrenaline.

I am now taking taking Adrenal support Glandular and already I feel the difference, I feel calmer and I can rest easily.
Hope you find something that helps your daughter
 
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I did B12 injections for a couple of years and they didn't help much - in retrospect I think I needed a higher dose. I've had the best results with liquid methylcobalamin - taking it sublingually, two 5000 mcg. doses a day. That's a high dose but that's what I need to get results, and, as always, we're all different. I've had good results with these products:
https://www.iherb.com/pr/KAL-B-12-M...IcQ0qhozyfSWeb2sV4IaAkB2EALw_wcB&gclsrc=aw.ds

https://smile.amazon.com/Organic-Vi...liquid+methylcobalamin&qid=1588000288&sr=8-5l

https://smile.amazon.com/Bluebonnet...thylcobalamin+5000+mcg&qid=1588000331&sr=8-10

And I like the KAL brand product the best. It's a spray, so less messy to use. Also, maybe I'm wasting less with the spray, but I take 2 sprays in the a.m. and 2 in the p.m., and it lasts me a month though it should only last 2 weeks at that rate . . . so maybe the sprays aren't the full dose, maybe it's more effective than other products I've used, I don't know, but all I know is that it's working for me at about 1/2 the cost of the other products.
Thank you for changing the name of my thread and all the useful information. Everyone's been so helpful! I appreciate it so much and am quite humbled that you find the time to help others when living with ME yourselves, warmest regards, Eilidh
 
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@Eilidh Not sure if your daughter is too sensitive to supplements to experiment but perhaps a very good quality pure fish oil might be worth a try.
Thank you Seadragon! We've always been quite strict vegetarians but she has tried Omega 3,6 and 9 in pill form. Though for a while now I've just been adding milled flaxseed to food. I'll discuss it with her :)
 
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Might want to have vit D level checked. My wifes was very low, which caused lack of memory retention, and gluten issues. She doesnt have ME, but was told they are starting to check for low levels in patients these days
Thank you! I'd completely forgotten about vitamin D if I'm honest, she's not the only who suffers from memory issues :/. She was told her levels were low and used to take it regularly, somehow we've completely let that slide. As she's hardly ever out in the sun, I'm sure it would be good. Thank you, who knows when I'd have remembered it!
 
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I've had this feeling for most of the time I've had ME/CFS, close to two decades.



That sounds a little like a 'wired but tired' feeling, or overexcited neurons. Forum member Hip has a useful post about supplements that he has found useful in reducing that feeling.



I've found taurine to be useful for my sound sensitivity. I take 0.5 grams, 3 times per day. I can now hear lawn mowers, fans, my fridge, and other rapid repeating sounds without feeling like my brain is inflating and about to pop. High dose vitamin C has been useful as well. I currently take roughly 6 grams per day of the sodium ascorbate form of vitamin C.



That's unfortunately very common for someone with ME/CFS.



That's also common. When our brains feel like they're overwhelmed to start with, then adding the cognitive demand of keeping track of multiple conversations and filtering out the sounds etc. leads to a feeling of mental overload.



Supplements that reduce glutamate might be helpful. See Hip's post above. Taurine and vitamin C are known to reduce glutamate.



Here is a link to Dr. Cheney's information about excitatory neurotoxicity (when the seizure threshold in the brain is lowered and excess sensory input can cause neuron death): https://www.prohealth.com/library/dr-paul-cheney-discusses-the-benefits-of-klonopin-19834

BTW Dr. Cheney is in favor of using the drug klonopin but many people strongly advise against it since it's a benzo drug and can often cause more harm (far more harm) than good, especially when trying to stop taking it.

And here is a post on Health Rising about glutamate and neuroinflammation: https://www.healthrising.org/blog/2...fs-puzzle-the-neuroinflammatory-series-pt-ii/



Some people with ME/CFS seem to develop OCD, ADHD, or sometimes flip back and forth with normal periods between.



I tried BCAA and my cognitive problems got worse. But then I tried whey protein powder (Natural Factors Whey Factors) which contains a lot of aminos, including BCAA, and noticed some benefits without the cognitive side effects. Whey protein contains a wide mix of aminos (including BCAA) but BCAA alone are a limited mix which causes problems for some people.

This site explains some reasons to consider avoiding BCAA and stick with a wide range of aminos. Some of the reasons explained in the article include:
* High doses of BCAA can deplete B vitamins
* BCAA can deleteriously affect serotonin levels
* BCAA may cause insulin resistance and dysregulate blood glucose metabolism

But, obviously some people do just fine with BCAA so it's one of those try-and-see supplements.
Hi Pat, thank you so much for all of that! It will take me a long time to take everything in properly but I'll just keep coming back until I do! I'm really glad that you've found things to ease some of your symptoms, warmest wishes, Eilidh
 
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An MRI scan wont tell you that much as they are not sensitive enough to pick everything up. Graded exercise would be a disaster at this stage in her illness. As you say she is sensitive to stimuli -light and sound- Ginseng, and any other stimulating supplement, is probably not a good idea. One thing that has helped some here is Branched Chain Amino Acids- BCAA-. Holland and Barrett sell them, cost about a tenner for a pack. Best not to take them later than late afternoon as they can cause insomnia. Take them an hour or so before a meal is best, although I should say opinions vary about that. @Mary and @ljimbo423 have found them useful. You around folks?
Hi Andy, thank you for being so welcoming to the site :). Luckily, the one thing we had picked up was that graded exercise was not helpful and based on extremely bad research. The neurologist we saw was quite open about not knowing anything about ME and so was quoting from the NICE guidelines. Regards, Eilidh
 

Mary

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Thank you Seadragon! We've always been quite strict vegetarians but she has tried Omega 3,6 and 9 in pill form. Though for a while now I've just been adding milled flaxseed to food. I'll discuss it with her :)
@Eilidh - I'm sure you know that vegetarians in general tend to be at high risk for B12 deficiency. One of my sisters was a vegetarian for many years and complained to me about weird nerve problems - she would get numb patches on her body or tingling, it moved around. She had crap insurance, couldn't afford testing, so I told her to try B12 (she used this product) and within a week she was better.