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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Brain fatigue?

soxfan

Senior Member
Messages
995
Location
North Carolina
For me mental fatigue has been the worse for the past five or so years. In the early years of illness it was total physical exhaustion.

Lately this brain fatigue has been overwhelming. I am not talking about "fog" or being unable to think. I am talking about the feeling that my brain can't handle any stimulation at all which includes reading...tv...talking...sounds...just about everything. It causes my head to feel very heavy and then I feel tired but only in my brain/head. My body feels physically fine.

I also experience blurry vision and an off balance feeling and sometimes I just feel weird. I feel mental fatigue often but this starts within an hour or two of getting up in the morning when I really haven't been doing too much. Once it hits well I really can't function well. I usually have to spend most of the day sitting on the porch or laying in bed. Usually resting helps but not with this .

I am not sure if this is just something I am going through I hope and not a permanent thing. I had a rough year with moving twice and some really heavy emotional things happened. I just hope this will not last long as it is extremely uncomfortable and disabling...
 

Bansaw

Senior Member
Messages
521
Try cutting out negative news. I have a "news fast" every so often and I do a month where I don't listen to or watch news. Does me the world of good. I also pray during those times. That helps. For me, I am focused on repairing my HPA axis. I had some PSTD a few years ago and I think its burned our a fuse in my brain. When I rest mentally, the joy comes back and the energy starts to some back too.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I have struggled with this off and on for decades. In years past I simply withdrew as much as I could and waited for it to pass.
I haven't found anything supplement wise that mitigates this and at the moment could not afford it anyway but I do now use cold packs on my head. Not a brilliant solution but I feel a bit better. Also coffee helps in the short term too.

Really we need some hard core drug to beat this thing down. I hope someone does pipe in with something really useful or that the symptoms just improve with rest for you. I understand about the moving being hard--I've moved house three times in the past 6 years. I was experiencing stroke like episodes from the big move between cities in different provinces. But I did improve somewhat from rest alone with that.
 
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soxfan

Senior Member
Messages
995
Location
North Carolina
@Valentijn...I was taking an herbal A-Bart this week but stopped it two days ago when I started having bad fatigue...that I could handle but now this brain thing has been going on. I guess I could still have inflammation from it even though I stopped it on Tuesday...?

What would be an anti inflammatory?
 
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Billt

Senior Member
Messages
289
Location
New Orleans
My son battles this as one of his main symptoms. He gets exhausted from just trying to have a short conversation sometimes. Concentration just wipes him out, just can't do it
Nothing yet has helped..
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Thinktank....I take 1/4 milligram at night for sleep. I know it is a tiny bit but helps. Been on this for four years and never in that time experienced this ...

I am seriously beginning to think it is from the ABart...I am just hoping since I quit it a few days ago it will be out of my body soon . I also am experiencing my eye burning which my prednisone drops help so I am fairly certain it is brain inflammation.

It sucks and is very distressing...I feel tired...like I am in here but not...off balance ..blurriness...just awful.
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
@soxfan - You might consider researching the Longvida brand of curcumin. It is a very powerful anti-inflammatory herbal extract that crosses the blood brain barier and goes into the brain. For me it reduces inflammation significantly and makes me think clearer, feel better.

Start at 400mg or 500mg - some work up to 2000mg, only if needed.

I take it first thing in the morning, it can keep me awake if taken late in day.
 
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daisybell

Senior Member
Messages
1,613
Location
New Zealand
For me, this is a sign that I have been doing too much generally. I find any kind of spoken debate awful to listen to, and the faster people speak the worse it is... I can't process what is being said, but I also can't tune it out either so I have to remove myself from the situation. I also find that being driven in the car has the same effect if we're going faster than I can cope with. My visual system gets overwhelmed and I start to feel unwell and really on edge. It's like I can only cope with so much stimulation. Being in a group of people talking is bad too... Which doesn't help the social life (which is fairly much non-existent anyway!).
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I use to work in a pharmacy helping customers all day and never experienced what is going on now....this is something I am having a very hard time dealing with. There is no way I could even drive feeling like this....just a few days ago I was fine and now this awful feeling.

In 12 years I have never felt like this...I am just praying it won't last too long.

I have no trouble thinking ...talking...concentrating. It's just a very odd fatigue..spacey...off balance feeling with blurry vision.

I have a hard time riding in the car too for long trips...socializing...which I have really no social life either. I am okay with one or two people at most.

I am not sure why I don't feel this awful when I first get up. It takes about two hours before the feeling starts and doesn't go away even with rest. I am truly a mess right now.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
@soxfan, it might be caused by interval withdrawal. After 4 years your receptors have become desensitized to the benzodiazepine, that might explain the overstimulation and other side effects. I see it over and over and over again with people who have used a benzodiazepine longterm.
I'm suffering from benzo withdrawal syndrome and have exactly the same symptoms when it comes to overstimulation.
 
Messages
9
I have 3 in the family who have me and all of us have Irlen syndrome. A recent paper published by the university of Leicester shows a rate of 75% of me/cfs folk with Irlen.makes sense as both irlen and me/cfs are more likely to crop up in family's with autism (co-occurant). I suggest you check out the on line self test. Be warned however that irlen was originally linked to educational under achievement. This is not the case now. Dye to the family,s desperate need for Irlen knowledge I have worked my way up to being a professional in this area. I personally think the Leicester study has made serious errors and the rate should be much higher. Symptoms- head aches, migraines,brain fog,depression,anxiety,adhd, butter or disorted images on the page,depth perception issues. Etc.etc.
 

Silence

Senior Member
Messages
102
Location
Northern CA
I usually get that spacey feeling when i know my gut is fermenting stuff. It feels like Im drunk. And sometimes feels better after having a bm. How is your gut symptoms? Or it could be your inner ear and inflammation- do you have tinnitus?
 

Hip

Senior Member
Messages
17,824
I am talking about the feeling that my brain can't handle any stimulation at all which includes reading...tv...talking...sounds...just about everything.

Are you not perhaps in part referring to the ME/CFS sound sensitivity (hyperacusis), rather than mental fatigue? I find this sound sensitivity is not much linked to fatigue; I find it can appear equally when you are feeling tired, or when you are more energetic.


Or is it more the information content that you find is too overwhelming to process?
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Hip..it is more that any talking...reading...etc..is too much for my brain to handle. It is almost more of a weird head feeling...like I am not here. I usually only need total quiet when I have overdone and overstimulated. This brain fatigue happens to me a few hours after getting up...but I am always alone in a quiet house so I am not sure what triggers it suddenly.

@Silence...my gut is fine. I take a prescription probiotic and have no problems at all in that area.

@Thinktank...I have been on Klonopin for sleep a while but only 1/4 of a milligram nightly. I am just not sure that is a high enough dose to cause problems. Although I have decided to quit it and take some herbal stuff that I have.
 

Seven7

Seven
Messages
3,444
Location
USA
Mine was due to OI and hh6v. Could not even read or watch tv without PEM. I lowered the titters of hh6v and the vassocontriction (midodrine) took care of the rest.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
@soxfan, clonazepam is a powerful benzodiazepine. "just" 0.25 equals 5mg diazepam...
Any dose can cause problems after a while, mainly tolerance and that may result in overstimulation and other nasty symptoms.
It's a smart move to to quit the benzo, but make sure you do it at your own pace, it's not a drug that can easily be kicked.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Thinktank...I didn't take any Klonopin last night and slept okay. I will say that it helps greatly when I become overly stimulated and need to calm my body down so I will only use in those situations or else I will lay there in torture. I am going to take Kavinace instead which I know has its own issues but I need something right now.

@Inester..I had the tilt test years ago but do feel I have OI due to me taking my BP sitting and standing and there is a huge difference. I know need to get the doctor to believe me. I am new to this area so have to start over with doctors. I had high HHV6 Titers but was told that it was an inactive infection by(Dr. Komaroff in Boston)
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Withdrawal can take a while to set in because of the drug's long half-life. Don't use it for a week and then talk to me again. :)
You can't stop a benzo abruptly, you will induce a benzodiazepine withdrawal syndrome that way.