Horrible fuzzy feeling in head - Can't fall asleep

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I seem to be getting what I can only describe as a really unpleasant, fuzzy feeling in my head, almost like my brain is vibrating with static electricity. Along with this symptom, I also get this overwelming drowsy, lightheaded, spaced out feeling with brain fog (on top of my already worsening cognitive problems) which makes me feel horrible, irritated, hardly able to function and need to take painkillers. This feeling gradually worsens as the day progresses, becomes noticably bad around 2:00pm and makes falling asleep at night near impossible.

This set of symptoms comes and goes and generally lasts for about a week at a time. But this has been the worst episode of it so far. Has anyone else experienced symptoms like this and have any idea how to deal with it? thanks!
 

Wishful

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Maybe a cat sleeping on your head? :cat: :)

I don't know what it might be, but the gradual worsening over the day suggest either something (nutrient? chemical?) accumulating or something depleting. Week-length episodes supports that. If you keep a record of food/activity/symptoms, you might find a correlation. Maybe the episodes follow a meat-heavy meal, or a period where you avoided green veggies or something like that. I suggest keeping records and varying your diet specifically to test different things. Testing your response to pure nutrients would work too, but is more expensive, so I'd try foods first.

It could also be activities. Maybe the symptoms follow social events, physical activities or other such things. Records are your friends in this, because it's hard to remember such things correctly. Records let you see that prior to each episode, you went drinking with friends, or did your monthly finances or whatever. Of course, you have to actually record things you might think were inconsequential, such as petting the neighbour's cat, or breathing in someone's overpowering perfume.

A cat on the head would be much easier to solve. ;)
 

Crux

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I've been taking phosphatidylcholine or eating eggs which are high in it. It's been calming and helps sleep.

If choline is low, then fatty liver can develop. If the liver is injured, then everything can become deregulated.
Choline is needed for brain function,and is often found to be low in dementia patients.
 
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@Learner1 I haven't yet been checked for high ammonia levels, might be worth checking. And I'll check those out too, thanks!

@Wishful I have been keeping a food/activity/symptom diary however can't seem to find any correlation so far. My insomnia and that horrible feeling just continues to cycle on and off in week long episodes regardless of anything I've tried food or activity wise. I even tried a diet of complete junk food for a month, then went back to my usual diet full of fruits, vegetables, nuts etc but again, no difference in symptoms and it almost seems like a waste of time trying to be super healthy. I also don't experience any crashes or PEM and can spend hours getting some productive work done in the window of time I have before the next episode starts. Sometimes I could even be performing at a long, exhausting gig and be drinking all night with the band but be completely fine the next day, while another episode might suddenly hit me after sitting in my house doing almost nothing for weeks. I thing is, I was always a completely healthy person in the first place with no prior health conditions and I likely still am. But since had this "flu" a few years back, something (perhaps some sort of biotoxin or parasite my immune system can't get rid of?) seems to be in my brain wrecking havok and I really hope to find out one day what it is.

@Crux Thanks, my Choline levels might also be worth looking into. Although I did try taking Citicoline a while back which didn't seem to do anything either.
 
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Please check your vitamin B6 intake, adding up all supplements and fortified food, as sometimes I would get 'wired but tired' feeling from too much B6. Another more obvious one to check is caffeine, either from medicine, supplements, tea, coffee, 'energy drinks', alcohol intake, nicotine intake, etc.

And it might be worth checking your microbiome for any overgrowths of yeast and bacteria.
 

Wishful

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@SeanQHX1 it can be hard to spot a correlation, even if you've actually recorded the important information. The correlation between niacin and my suicidal moods didn't jump out of my journal. It was only when I took a niacin tablet after not taking one for a long time that I wondered if that was possibly the cause. Looking back in my journal verified previous niacin tablets followed by 'feeling suicidal' the next day. It's no guarantee of finding the correlation, but it's better than not trying at all.

As for the 'eating healthy should make me feel better' belief, it didn't work for me either. I did spend some periods (many months) with a very healthy diet: fruits, veggies, whole grain, etc. I didn't notice any improvement in how I felt. I also spent periods with a very unhealthy diet (just cornstarch for many months). No difference. I expect that an unhealthy diet will raise the probabilities@SeanQHX1 of health problems a bit, but in my experience it's only a minor effect. I might as well enjoy eating tasty food. I'll let the fanatics lead a slightly longer but miserable existence with eggplant and dandelion greens...assuming they don't get run down by an SUV on its way to McDonalds.

As for wondering if the 'flu' left something behind, that's not how ME is believed to work. One popular hypothesis seems to be that our immune system triggers on something, probably in a normal way, but for some reason our immune systems lock into an abnormal activated state and doesn't respond to the 'return to normal' signal. We need to find out how to break that feedback loop.

I too was healthy before my ME, and my GP's see me as still healthy, since they can't measure the ME symptoms.
 
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@BeADocToGoTo1 I agree, pehaps I should watch my B6 intake as I have been taking high dose B vitamins along with foods which are likely high in them also. Although I avoid caffeine long before bedtime, I have experimented by taking zero coffee all day and drinking it before bedtime and it hasn't made any noticable difference to my sleep which is strange.

@Wishful I do agree about testing pure nutrients to see how my body reacts like you mentioned before, I might well be able to find a correletion there. That said though, that nasty feeling would still hit me at it's usual time even if I ate or drank nothing and starved myself for hours after waking up. The only thing I've found so far to have any effect on every one of my symptoms is time. Some symptoms quickly come and go at random (the headaches and heart rhythm issues), others cycle on and off in week long episodes and the rest (mainly the cognitive decline and anhedonia) steadily worsen as the months and years go on.

The reason I speak of a "flu" that could have left something behind is because I'm not entirely convinced it's ME that I have. The GP who diagnosed me, Post-Viral Syndrome originally before quickly changing it to ME, couldn't even tell when my gran was having a stroke. And other doctors I've seen since since then haven't been able to give me another diagnosis of any kind and are still re-investigating my condition. Besides that, my illness is very unlike the common ME symptoms other than it started with a viral onset. However there is no PEM or crashes, I don't have any muscle/joint issues, don't seem to have any intollerences or sensitivities of any kind and my main symptoms seem to just steadily get worse rather than fluctuate. I can't relate to brain fog so much either as in my case, it seems more like my actual baseline cognitive functions and emotional responses are slowing down and deteriorating, while I can sometimes get additional brain fog on top of that. Going by this, I still reckon that biotoxins may well be playing a part with this illness, rather than just a faulty immune system as these can cause progressive symptoms like I've been getting.
 
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Wishful

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PEM is supposed to be the definitive symptom for ME, so maybe you're lucky and have something that can be diagnosed and treated. :thumbsup:

You should probably focus on testing for other possibilities. Asking for symptoms and possible treatments here may lead you in the wrong direction, or at least waste time and other resources that could be spent better elsewhere. Maybe there are forums for post-viral syndrome or other such diseases? If your doctor diagnosed it as ME despite the lack of PEM and other ME-specific symptoms, I think you need a better doctor.
 

Learner1

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No matter what it is, doing thorough doagnosric testing is important. Whether it's ME/CFS or not, abmormalitoes found in testing can generally be treared. Time is not a treatment - there's biochemistry abd physics happening over time.
 

Rufous McKinney

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a really unpleasant, fuzzy feeling in my head, almost like my brain is vibrating with static electricity
Well, recently I experienced profound worsening of symptoms associated with major exterior stress events (California wildfires), total life disruption 100%, and continued worsening of the ME; and also much more severe IBS-D and bouts of severe gastroenteritus hello emergency room (not fun there).

At these moments, symptoms included: my brain is cellophane. It feels like it contains literally wrinkled up masses of cellophane (an older product, like you wrapped your easter baskets, handmade, in cellaphane)..now it would be plastic with MORE chemicals. And my ear drums just hurt.

So sounds got REALLY problemmatic. So maybe I can listen to a song but I cannot listen to my husband slamming the cupboard, or throwing away the tortilla chip bag: because it generates the cellophane Brain Meld. Tintinius, also.

Months later this has finally improved some. So I see these acute symptoms that come and go, and our more chronic symptoms, day in and out. Sigh.
 

Rufous McKinney

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I think I don't know what type of doctor that is
Researched that. Functional Medicine....The kind of doctors that: one's health insurance, which I am grateful very grateful to have, does not pay for any of that. I probably need chelation but yet cannot imagine getting to the other side of such an undertaking, and the amount of more SICK it would generate.