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Persistant Brain Fog, Insomnia, Anhedonia and Headaches

Messages
97
Location
Glasgow, Scotland
Hi everyone! I'm a 24 year old guy with Asperger's. I've had terrible brain fog, anhedonia, insomnia and headaches constantly for just over 2 years which seem to be slowly getting worse. I have no idea what's causing these, I just know it was a sudden onset during a mild flu (lasting a week), before that I was completely healthy. And the only diagnosis I've been given so far by a doctor is ME/CFS which I'm not so convinced about based on my research on the illness.

It started off as brain fog and mild fatigue when I took a flu which gradully got worse over the time I've had it. Later on other symptoms started to creep up as the illness progressed. I was getting sudden heart palpitations and more recently, I now get PVCs and my heart goes into bigeminy during exercise. I now wake up with a headache every day which gets worse as the day progresses, making me reach for painkillers all the time. I also get a strange head pain when any pressure is put on any part of it, mainly when I'm lying down. This pain almost instantly disappears as soon as I lift my head up. I also get insomnia which comes and goes randomly and whenever I am able to fall asleep, I feel as though I'm waking up too early. Lack of sleep also makes my brain fog and headaches much worse to the point I can barely function. My field of vision also seems to be deteriorating along with my other symptoms and I now feel as if I'll looking through a letterbox everywhere I go.

I've been to see several doctors over the years and one diagnosed me with "post-viral syndrome" at the start as soon as I mentioned I had a flu with it and told me it's the same thing as ME/CFS. After this I got some blood tests which turned out fine. I then saw another doctor who referred me to get a urine sample and some other blood tests including my thyroid, cortisol levels and kidneys which came back clear. Since then, all I've had is doctors telling me I've just got anxiety or I'll get better if I exercise more.

I've tried changing my diet and taking loads of suppliments to try and help this illness, including B vitamins, magnesium, fish oil, Co-Enzyme Q10, Acetyl-L-Carnitine and so on but nothing I've tried so far has made any noticable difference to my health. I've now been looking into some nootropics and have decided to try Mind Lab Pro which so far has made some very slight improvements to my mood. But besides that, I'm still nowhere close to getting my old brain back.

I'm still trying to get to the bottom of this illness and I'm not convinced it is ME. I don't have any of the main symptoms like muscle/joint pains, swollen lymph nodes or post-exertional malaise like ME sufferers do, this is primarily affecting my brain. And I know ME generally relapses and remits, rather than steadily deteriorates like my illness. And despite my symptoms, I still feel as though I've got plenty of energy in my body. I happen to be a musician and still play in several bands, but struggle to enjoy performing at gigs nowadays, especially as this illness combined with Asperger's makes it almost impossible for me to socialise and enjoy music the way I used to. Now I just feel as if my brain is slowly shutting down and my existence is fading away into nothingness.

Has anyone else on here experienced symptoms like this, know what illness this could possibly be or have any idea if it's treatable? And has anyone tried any suppliments or medications that actually help relieve the symptoms? Thanks!
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
To be on the safe side, get your doctor to make you a referral to a neurologist. You will probably end up getting the all-clear from the neurologist too, but it is worth investigating.

I too don't get every classic ME symptom. Never had lymph node issues, sore throat, muscle pains or many other thing.

Mine started also from a flu-like "bug" in the Spring. It felt exactly like flu except for the absence of some flu symptoms (no upper respiratory things or fever)
For weeks turning into months I thought it had to be post-viral syndrome, especially as health checks were all fine.

With mine was a right-sided headache, anhedonia definitely, as the things I hold most dear I could not focus on or respond emotionally to, although I suddenly would want to burst into tears! That is not so bad now but when I flare up I feel it again. Yes, great fatigue, and heart symptoms too. Nausea particularly at first, and upset appetite (cravings for proteins and fats followed by loss of appetite in a rollercoaster pattern.) That's eased up now.
And a horrible sense of trembling inside the body, similar to weakness after pushing beyond one's physical limits.

Insomnia....no. I slept terrifically well and still do. Better than I used to sleep! That's another thing that doesn't figure. I think it is utter exhaustion in my case.

I wish I could tell you of some supplement or herb or medication that would help you. But I haven't yet found anything that makes a marked difference to me for more than a day or so. I keep an open mind

The only slightly negative thing is I don't do well on very high dose vitamin B complex. I have to take a much lower dose.

I have a neurologist appointment in 3 weeks to check out the head/eye pain thing which has been there for over 5 months -not every day but very frequently.
 
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Wishful

Senior Member
Messages
5,684
Location
Alberta
For what it's worth, my ME seems to be mainly affecting my brain. I did have (and still do on occasion) perceived muscle aches, but I think those are neurological rather than physical. No lymph node problems. I do have a problem with insomnia, but I don't know whether to blame that on ME or just getting older. No headaches or heart issues either. Everyone's version of ME seems to be different. The lack of PEM may make it CFS rather than ME. Maybe post-viral syndrome, something I haven't looked at.

My recommendation is to keep a food/activity/symptoms journal. I've found mine very useful in figuring out what causes worse symptoms, or the rare occasion when I find something that actually reduces symptoms. Also, experiment with changes in diet, sleep patterns, environment, etc. Maybe you'll find a correlation between your symptoms and some factor.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@SeanQHX1 - I'm going to tag member @Hip here He has dealt with anhedonia and other neurological issues and may be able to help. FYI, if you put the "@" sign in front of a user's name, they will get an alert that you are tagging them or have responded to a post, etc.
 

helios

Senior Member
Messages
136
Location
Brisbane
Poor sleep definitely exacerbates my brain fog. I would recommend you experiment with Melatonin or Glycine or Magnesium or hops or trytophan or an anti histamine like Diphenhydramine hydrochloride. High dose fish oil never made any difference to me and same with a few nootrotropics I tried. Brain fog has been the worst symptom for me as it impacts my ability to work and my motivation. Unlike many others on here I could go to the gym, but at the end of the day I would fall asleep on the couch. When I got the brain fog, apathy my anxiety faded so its definitely not a case of anxiety for me. As someone else suggested keep a food journal as for me food definitely makes the brain fog worse for me. I had a few fecal tests and they showed high levels of bad bacteria + parasites which I have had a hard time reversing. Coagulated bile helps but probiotics I dont notice much difference even with the very expensive ones. When I fast my brain fog is much improved. I eat a paleo type diet now.

I believe I am low in dopamine and unfortunately it is really hard to get doctors to provide scripts to boost that. I would love to try some of the meds that are available in the US. I tried a few ADs that were supposed to boost dopamine somewhat but was not impressed with the results. The herb mucuna puriens (with good l-dopa%) with match green tea helps but it cant be taken every day as it loses its effectiveness. Niacin (the flush version) I recommend you give it a try as its cheap and that helped my brain whereas regular high strength multi Bs never impressed me. When I got sick (from tetracycline ABx) I became very sensitive to a lot things, weather & pollution being two, and I notice a definite improvement in my brain fog when its stormy or windy& rainy.

I had a spect brain scan that definitely showed poor brain blood flow but I was not given a diagnosis of an "official" brain disorder so could not qualify for the types of meds that are given to say dementia patients. Ginseng & licorice helps as did some of the banned pre-work out supplements. The herb Ginko I thought helped when I first took it but doesnt do much for me now. Good Luck. Having bad brain fog or cognitive decline is a terrible aspect of CFS/ME as it does not come with a physical manifestation that doctors or friends/family can see and give credence to your plight. If you were a bright/academic person before getting sick its very depressing (which doesn't help) and of course people latch on to the later aspect as being the root cause of your health problems...though I do think boosting neurotransmitters (espec dopamine & acetyl-chloline) will help.
 
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Wolfcub

Senior Member
Messages
7,089
Location
SW UK
@helios...I wonder about dopamine levels myself. It's the "reward" chemical isn't it?
There are a few foods that contain tyrosine and can help as they are dopamine precursors:
almonds, avocados, bananas, dairy products, lima beans, pumpkin seeds, and sesame seeds. There will be others.

I got definite brain fog tonight even though I eat all those foods and have done for ages. It was a little bit scary. I suddenly couldn't remember some things. Simple things! I decided it wasn't any big deal and just took nice breaths. Some of the things came back to me later and some are lost forever! haha
But that is scary.

Tomorrow is always another day. Maybe like you, I need a jolly good thunderstorm!
 

Hip

Senior Member
Messages
17,824
I've had terrible brain fog, anhedonia, insomnia and headaches constantly for just over 2 years which seem to be slowly getting worse.

Have you explored any supplements that reduce brain inflammation? Low-grade neuroinflammation has been linked to mental symptoms such as depression. I found N-acetyl-glucosamine, which is an anti-inflammatory, effective for treating my often severe generalized anxiety disorder, and it may have helped with my anhedonia too.
 
Messages
97
Location
Glasgow, Scotland
@Wolfcub Yeah, I'll get my doctor to refer me to a neurologist. I want to make sure as there are many other health issues than can cause these symptoms. The fact that it is steadily becoming worse with no flare-ups or remissions is worrying. My headache is basically all over my entire head region and I often get eye pain along with it, although the pain is often slightly worse on my left side. It almost feels as if my brain is swelling up and pushing against my skull. I hope the neurologist you see will be able to find something and be able to offer you some help too, best of luck.

@Wishful Keeping a food/activity/symptoms journal sounds like a good idea. Although my symptoms are much the same every day, except slightly worse as it progresses, so I can't really tell if anything is helping. The only thing that makes any noticable difference is the amount of sleep I get. When I get very little sleep, the headaches and brain fog become much worse. And when I get a proper sleep, my symptoms go back to the current stage they have progressed to. I've tried experimenting with sleep habbits too, and despite what is commonly said, looking at computer/phone screens and drinking caffene before bed doesn't affect my ability to fall asleep as I get the same results without doing these things before bed. Stress levels don't seem to affect it either. The insomnia just seems to be a random thing that comes and goes every so often. But I'll try keeping a journal and see if anything in my enviroment is affecting my condition.

@helios Hopefully I can get a doctor to refer me for a SPECT scan as I'm sure something is bound to show up on it. Regarding my anhedonia, is feels almost as if my brain is being increasingly sucked dry of neurotransmitters. I'm tempted to try a fairly new nootropic called NSI-189 which apparently helps anhedonia by promoting neurogenesis in the hippocampus. Many have said that it's the best nootropic they have taken and it has few side effects, but I'd better do some more research first. I'd also be interested to know if anyone with ME/CFS had tried this nootropic.

@Hip The Mind Lap Pro suppiment I've been taking apparently reduces brain inflamation, promotes neurogenesis and balances neurotransmitters. It's pretty damn expensive though and I'm only trying it because nothing so far has made any difference to my symptoms. I've never heard of any ME/CFS patients taking it but I do know it seems to be helping a lot of people with cognitive impairments. If it does what it claims to, it might not work for me though. There could very well be a conflict between the drug trying to repair my brain and my brain continuing to destroy itself. Regarding anxiety, this has never been one of my problems with this illness. But I am glad to hear that you've finally found something that had helped.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
One thing about keeping a journal is being aware of all the possible factors. Don't leave things out because 'you've always eaten/done/used that'. For example, I did try sleeping in a different room, on a different mattress, with different bedding+pillow, just to make sure that I wasn't reacting to something in my usual sleeping arrangements.

With the pain from head pressure, have you tried to map it out, such as by applying pressure with a finger on different points, and with your head in different positions? The more detailed the information you can provide to an expert, the better. Things like 'the left side is more sensitive than the right', or 'the sensitivity depends on neck angle'. It's hard--and very time consuming--for a doctor to discover that sort of information.
 

alkt

Senior Member
Messages
339
Location
uk
is your room house well ventilated . just a thought but carbon monoxide poisoning can cause many of your symptoms .
 
Messages
97
Location
Glasgow, Scotland
@Wishful Will definitely make a start on a journal. I agree, I should try changing some more things I've always done to see if they make a difference to my symptoms. Regarding my head pains, I've tried applying pressure on different points and have noticed that it is most painful at the corners of my forehead. My temples are also particularly sore and pressure on them causes pain on the opposite side of my head. The pain is mostly around the skull rather than the brain area.

@alkt Interestingly, my symptoms seem to be very much like mild carbon monoxide poisoning and I admit my house could do with being more ventilated, especially since I hardly go outside as much as I used to. Might be worth checking to see if that's a factor, although I'm not convinced carbon monoxide is causing these symptoms.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
A quick check seem to indicate that CO poisoning symptoms fade relatively quickly, so if you get fresh air for a few hours and notice no reduction is severity, it's probably not that.

I have no idea what the differences in pressure points might mean. However, by describing it that well, maybe someone here will recognize it. Otherwise, time for an expert...
 
Messages
97
Location
Glasgow, Scotland
I've actually went camping several times during the time I've had this illness so I'm sure carbon monoxide isn't contributing to any of my symptoms. Not to mention I have a carbon monoxide detector in my home.

I haven't got a clue about these pressure points/headache areas myself but I'll mention all this when I go to see a neurologist. I'll definitelly try my best to get a SPECT scan too. With all these head pains and brain symptoms, I would be very surprised if nothing showed up on one!
 
Messages
13
I've actually went camping several times during the time I've had this illness so I'm sure carbon monoxide isn't contributing to any of my symptoms. Not to mention I have a carbon monoxide detector in my home.
Warning for Americans who have a home CO alarm:

CO alarms with UL 2034 listing are prohibited from displaying anything but 0 when CO is under 30ppm and from alarming until is continuously over 70ppm for 1 to 4 hours at the low end, or 4 to 15 minutes at the high end. By the time they give alarm, anyone in the area has already been poisoned!

In comparison, the US EPA CO limit is 9 ppm average and the WHO air quality guideline adopted in 2021 is just 3.5 ppm. average.

Although UL2034 home CO alarms are now required by building and/or fire codes in most US states, they are worthless to prevent poisoning that occurs at lower levels and give people a false sense of security.

For those who can afford a few $$$, I recommend getting a portable professional CO detector that displays accurately from 1ppm and alarms instantly above whatever limit the user wants to set.

They also can be used to measure exhaled CO, which is more accurate than blood tests to see if someone has exogenous or endogenous CO poisoning. While brief CO exposures only briefly raise exhaled CO, people who survive CO poisoning end up with a CO hangover that may last months to years. This is because CO that accumulates in tissues and organs, whether inhaled from exogenous sources or produced internally from endogenous sources, takes much longer than the CO in blood to come out.