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"Brain Fog"

Discussion in 'Cognition' started by Binky123, Jun 10, 2010.

  1. Binky123

    Binky123

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    Anyone else feel as if their head is just not 'clear'. I mean that LITERALLY not figuratively. It's as if my head is full of dense cotton balls weighing it down all the time. No matter what i do, nothing has relieved the weight, even temporarily. It's almost like someone is pushing my brain down with their hand at all times.

    I consider this the DEFINING feature of my CFS.

    I just feel like a completely different person because of it. I wouldn't mind just being 'tired', but this is so much worse.

    I'm still fairly functional in spite of this - 23 year old male, working full time in a competitive field... I think people confuse what I have with cognitive dysfunction. It's not as if I am unable to process and manipulate information, it's just harder to do so due to the fatigue/heavy head.

    I just feel as if there is no one out there with symptoms like mine. Someone who understands the "cotton balls" or whatever you want to call it.

    Is this normal for CFS? Do any of you experience this?

    Thanks for letting me vent a little. :Retro smile:
     
  2. ixchelkali

    ixchelkali Senior Member

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    Yes, this is normal for ME/CFS (athough it's not exclusive to ME/CFS; it occurs in some other diseases, too). There was a SPECT scan study (and if I weren't brain fogged myself right now I could probably find it for you) that showed that many ME/CFS can process information, but that their brains have to work harder to do it. It actually took more neural activity to accomplish the thought processes. Before long your brain feels are though you'd been cramming for finals for a week. It just doesn't want to work anymore.

    For me, I think the brain fog may be the most limiting aspect of ME/CFS, or at least the most frustrating.

    Welcome to the Phoenix Rising forum, Binky. It's a good place to find people who know what it's like.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hell yeah, its normal mate and it sucks. Like a constant head cold. Im not sure how y can get rid of it though. When i first had cfs i read where they use antidepressants in low dose to help with energy etc not just depression. I took 1/4 of a tab of my wife's zoloft antidepressant and in about 3 hours the brain fog started to clear, it was amazing to go from fog to clear so quickly. I then told my doc of my experience and he gave me a script for it, this helped for awhile but not for ever. I think anything that can help speed up the mind can help switch on a few neurons and clear the fog. But be careful of stimulants as they can cause a crash as well if u over use them.

    cheers!!
     
  4. Wonko

    Wonko Senior Member

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    it's totaly normal for pwME - it does fluctuate quite a bit - whilst it never completely goes away (and sometimes can totally incapacitate me) - all things being equal (eg if not crashing, PEM'd or having to answer stupid DWP questions) it reduces for a few hours most nights allowing time to plan, make lists, or anyting you need to do that requires a partially functining brain

    not exactly a perfect system but when it's all I have....................
     
  5. ukxmrv

    ukxmrv Senior Member

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    Could what you are describing be actual pressure on the brain (like blood pressure or cranial pressure)? I've heard other PWCFS describe this and then try drugs to help relieve the sensation. My terrible memory says that the drug name ended in 'max?

    I was diagnosed with ME after an acute viral onset and the sensation I experience as brain fog, feels more like a blockage in my thought processes. My brain never feels heavy (for example). What it feels like is that I go to "think" (i.e. to add up two numbers or try and analyse a sentance of words) and the thought processes feel blocked as if there is a "fog" in there and the thoughts cannot move or get processed.

    For me it is an intermittant symptom but can be there for months at a time (then days, then hours, then weeks etc).

    Words really are inadequate to describe this but I perceive what we are describing as being different.

    Hope that makes sense and helps in some way.
     
  6. Binky123

    Binky123

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    thanks for all of your responses. A couple comments;

    - heaps, I can't describe what I feel as a 'constant head cold'. There's not really an adequate comparison to symptoms of illness that I experienced pre-CFS.
    - Wonko (or others) - what is pwCFS or pwME (as opposed to just CFS/ME)?
    - ukxmrv, Yes i would describe it as actual pressure. Based on your description, we have different symptoms. I do not feel 'blocked' in my thought process.

    In sum, it feels as if there is physically something inside my head, weighing it down. I had an acute viral onset to the disease as well. I was told this was mono, but it was never confirmed.
     
  7. ukxmrv

    ukxmrv Senior Member

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    Binky,

    Maybe looking for threads on Intracranial blood pressure and CFS would help? Over the years I have seen reference to this and people tried drugs (maybe Diamox?) , osteopathy, and things around blockages and blood flow to try and get some relief.

    There must be some ways of actually measuring this. Do you have a good doctor and access to tests?
     
  8. lululowry

    lululowry Senior Member

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    Binky,
    Thanks for bringing up the topic. Last night I proposed watching half a dozen movies to my 10 year old, and he pointed out that we have watched all of them in the last few weeks. If I really focus on each movie and take some time, I totally remember seeing them. But my work-a-day brain function has declined precipitously.

    I had terrible headaches and now take a low dose (100 mg) of Topiramate, common name Topomax. That has helped with the pain tremendously. I now have pain 2 or 3 days a month as opposed to every single day, wake up with it/go to sleep with it. However, it is nicknamed stup-omax because some people have cognitive trouble with it. I feel like I am in a catch 22. I wonder if it is exacerbating my brain fog but I really fear living in that kind of constant head pain again. No easy answer there. I can't tell if mine is worse than others or not. I am getting lost sometimes when I drive. I can read, and follow a train of thought if I focus. Otherwise my short term memory is shot.
     
  9. Wonko

    Wonko Senior Member

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    Binky123
    pw = people with

    I wouldnt describe my brain fog as pressure - resistance yes - not pressure - analogous to tryign to move through treacle (has anyone atually tried this lol) - if I try and push through it there is a huge increase in energy drain which I cant sustain for long before I am unable to even think surface thoughts - repeated frontal assault on fog doesnt work - coz it's erm...foggy - lots of negative re-enforcement has taught me to avoid head on confontation with any ME symptom - brain fog is no different - even if something is essential there is normally another way to handle it - it's rare that significant higher brain function is required for survival anyway - for luxuries (lol) like dealing with people, solving problems etc. yes - but for survival no

    headaches - completely different thing - but yes I do get some good ones - as in cant lie or even sit down for days - it's just about managable standing up with every drug I can access thrown at it - but do something stupid like try and sit down and all hell breaks loose - of course everything else flares up but it's a matter of priorities - severe pain trumps even a moderate crash every time (I havent had a severe crash in over a decade)
     
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Binky,

    I think 5-HTP would help with this. It boosts Serotonin which PWCFS have low levels of.

    I think I have the same sensation, it also goes down into my neck, my head feels heavy, I can still compute a lot also, although this varies with fatigue, I still work 30 hours a week, I use FMLA to get midweek day off. My CFS was brought on by Mono. How come you do not know?

    Check out the Co-cure site and hopefully you can find a good Dr!

    GG

    PS Welcome to the board, wish I had found this years ago, lots of knowledgable people on here with great insight, even with Brain Fog! Some of us who are not "severely" affected have adapted somewhat. I caught Mono in 2003.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i forgot to mention that neurontin and lyrica have helped also with brain fog. I think dr jay goldstein recommended them for a similar purpose. Its strange how they affect the nervous system in a way to quiet it down but for cfs it help help with energy by reducing brain fog but not at all stimulating. I think thats a similar theory that dr cheney prescribes very small doses of klonopin for
     
  12. ixchelkali

    ixchelkali Senior Member

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    pw = person with (or people with)
     
  13. tymewarp#9

    tymewarp#9

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    Absolutely- stuffed with cottonballs, a couple hundred pounds of them. Another 'sensation' which drives me nutso is so hard to describe: I've labeled it "veiled"; my vision is technically OK, and yet I have the sense of a semitranslucent veil being over my head and eyes. It's as if the neuro-signals from my eyes aren't quite making it to my brain intact, or are taking a very long route, or going way too slow.
    It has been many weeks (months?) now since I've had a day where thinking isn't like pulling teeth (I'm exhausted from it). What others have said above is the sad truth; there are variations of brainfog, but aside from being totally bedridden, IMO it is the most incapacitating symptom.

    I haven't yet searched the Forum for info on brain circulation, but wonder whether something involved is not only blood, but perhaps CSF (cerebral-spinal fluid) and/or lymph fluid?

    Here's to all of us finding answers & cures for this destruction of lives!
     
  14. Binky123

    Binky123

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    Thanks again for your responses.

    ukxmrv - Thanks for the suggestions about intercranial blood pressure. At the moment I am trying anti-viral supplements - so I don't want to mix anything. But I'll definitely keep this in mind. My aunt is an M.D. (internal medicine) and thought 'chronic sinusitis' could be a possible cause. I've never gone done the anti-biotic path, and my other doctors doubt this theory though.

    lululowry - I'm sorry to hear about your headaches and short-term memory problems. I suffer from some short term memory issues, but nothing comparable to yours.

    wonko - I can relate to the resistance... although I still feel my CFS is atypical (see long-winded description below)

    ggingues - Multiple doctors have recommended SSRI's to me (including my Aunt), but I have not taken them. I tried St. John's wort for about 9 days (Perika, 3x daily) but felt VERY weird and uncomfortable so I stopped it. The reason I don't know if it's mono is described below.

    heapsreal - thanks for the suggestions. I may indeed try out these drugs if I don't have success with the anti-viral treatment I am pursuing.

    Diesel - I couldn't agree more. My relationships with my friends and family has suffered. None of them can understand what we go through - nothing they've experienced can compare.

    Tymewarp#9 - I actually know EXACTLY what you are referring to by the veil, and I experience something very similar. I am so 'out of it' all the time, that I'm not connected with the world as I should be.



    I still think something about my CFS is atypical. For one, fatigue is not always a problem for me. I'm able to exercise, even intensely. However, if I overdo it, the I feel worse the next few days. It's not as if I have the energy of a normal person (e.g. I always need 8+ hours of sleep, or I will feel awful), but this is not my worst symptom. I feel that I would be close to remission if my head was clear. But the fatigue and brain fog are related.

    My symptoms started in May of 2006. I began to feel 'out of it', getting progressively worse each day. The fatigue was also overwhelming. There was a point where I was barely able to talk because I was so fatigued. I went to the E.R., and was diagnosed with mono.

    My case of mono was not typical. I did not have a sore throat, swollen nymph glands, anything. The only symptoms were overwhelming fatigue and feeling disconnected from reality. The test used was an 'iGG antibody' test, which only proves that I had mono at one point in the past. I had another flu like illness (with the typical sore throat, etc.) that I got over in 2 weeks that past Christmas, which could have been mono. This is why I am unsure if mono precipitated my illness.

    So, I was told that I had mono and would recover in about 2 months. The summer past, needless to say I was still sick (although improved). I went back to the University in the fall, only to become much much worse over the semester. Unrefreshing sleep, fatigue, post-external malaise, and "brain fog" were (are) my only symptoms. I'm not even sure this fits the CDC criteria.

    After getting much worse, I took the next semester off of school. The fatigue was extremely bad during this time - I was bedridden most days. I could not walk 10 minutes without falling down. After making a lot of progress, I crashed and was bedridden again.

    One year after the illness began (May 2007), I began low dose prednisone (5-10mg). This gave me my life back. The fatigue was much better, and although nothing was cured, I had a floor under me.

    I took prednisone for the next year, and during this time my symptoms stayed the same. I feel that from this point forward, fatigue was not the main problem anymore. The "Brainfog" was not dented. I can have mental energy, but my head NEVER feels clear. Always full of the cotton balls.

    I was able to get off the prednisone, and while my symptoms did get worse as I tapered off, I felt more or less the same after getting off completely. Little, if anything has changed since then.

    Fastforward to the present....

    Not much has changed in the last 3 years symptom wise. Exercise actually makes me feel better, although if I overdo it I have mini "crashes" that last 3 days after the workout. I'm able to exercise fairly intensely but it's very easy to overdo. My fatigue gets worse if I stop exercising, and it gets worse very quickly.

    Nothing has ever put a dent in the brain fog. I have experimented with MANY different supplements, almost all non-pharmaceutical. I've given iHerb a lot of money. Here's what I'm taking now:

    - Ashwagandha - immune modulator (T2 -> T1), adrenal support, anti-anxiety.
    - Green Tea Extract - various benefits, but i may take this out at some point
    - Reishi Mushroom - Anti-viral, increases interferon production, immune modulation
    - Ginger, as needed for upset stomach
    - Astraglus - immune stimulant, increases interferon production, adrenal support
    - Curcumin (LEF Brand) - Nf-Kappa B inhibitor (indirectly anti-viral), anti-inflammatory.
    - Olive Leaf Extract - Anti-viral (started today, no herxing so far)
    - Oxymatrine - ordered, haven't started yet


    I've only been on the astragalus/reishi for a short period of time, around two weeks. So far, I have felt worse on the antiviral supplements. I will be sure to update my progress, especially on Oxymatrine since Dr. Chia uses that. Unfortunately I have not had extensive CFS specific testing done lately (e.g. Viral antibodies, etc.), but I saw many many doctors before giving up on them.


    I won't blame you if you didn't read all that, but if you did I appreciate it very much. I feel that there are not many similar situations out there (young male, brain fog as primary symptom, less fatigue problems, don't always have post-external malaise). Maybe I'm wrong?
     
  15. Hope123

    Hope123 Senior Member

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    I wouldn't say your symptoms are "atypical" nor, unfortunately, your situation (young male, etc....as you list above).

    Post-exertional malaise can be quite unpredictable.......it can come on hours or days or even weeks after exertion. Each person and even different times will be different.
    Another consideration is "brain fog" worsening is also form of post-exertional malaise. PEM is not only fatigue; it can include a host of things. For example, my PEM can also include sore throat. It might be that your PEM comes in the form of brain fog rather than physical fatigue. Try cutting back on your physical activity and see if that helps with the fog.
     
  16. glenp

    glenp "and this too shall pass"

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    Maxalt has been a miracle for me and recently started taking it more often and feeling better. The new pharmassist warned me about it that i may get rebound headaches taking more then 10 a month so I have AGAIN cut back geez. The cfs doc also warned me and offered noritriptiline instead ------terrible it made me depressed. I am afraid of these drugs. i trust my gp more then anyone and he says maxalt is safe so i dont know

    I dont think I have had topomax?? Is that the one that affects only the head pain??

    My brain symptoms, cognition is getting worse. When I was tested years ago they said slow cognitive functioning

    Its nice to see you here Binkly, you will find lots of help

    glen
     
  17. pamb

    pamb Senior Member

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    Hi Binky,

    Your story sounds a lot like my husbands - except for a couple generations of age difference! He was a VERY active 63 yr old, a competitive cyclist and xc skier at the national/international level for old guys. His started with a nasty virus that just never seemed to go away. I got the same virus, same time. It was a lulu, one of those ones where you are ok in the morning and 6 hours later so sick you can't get out of bed. But I got over it in a few days.

    The first year all his Docs thought it was sinus infection as he just had head pressure - felt like pressure from the inside, pushing out, 'ill feeling' intermittently, especially after bending over to clean his bike or looking up to clean windows. And his performance was off, but he was at such a high level before he got sick the Docs just more or less laughed at that bit.

    He was not too ill for the first year, although not right and the head pressure, pushing out (maybe like full of cotton balls, but pretty darned heavy, forceful cotton) and he had sinus surgery. Then he got really sick. At that point the doc's spent 2 years trying to find a spinal fluid leak because the whole thing was so much head pressure and postural related. It's been 10 years now and sad to say, he just kept getting sicker with some pretty wild vertigo happening at one point. And with no diagnosis, he kept pushing himself physically, figuring he was dying of something and wanting to at least do what he could to the end.

    Finally, 2 years ago he was diagnosed with CFS Canadian Consensus Criteria with all the boxes ticked. We are very grateful the head pressure thing just went away a couple years ago - about the time he kept pushing so hard - but brain fog and inability to take in information or process with any speed still exists.

    For him, all the antidepressants, and neurontin just seemed to make things worse. Long story but he ended up on narcotic painkillers and remains on Subatex, something they give addicts to get them off narcotics. you are supposed to taper off it, but he does not have the ability to add 'withdrawal' to the list of things he's coping with and has remained pretty stable on Subatex. For him it really seems to help overall, but I could not say if that is CFS related or simply addiction related.

    As the French say Binky, Bonne chance et bon courage. And welcome to the forums. You'll learn more about CFS here than anywhere else in the world. I hope some of the things suggested work for you.

    Pam ~ speaking for John
     
  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Thankfully, my fog is 99% gone. My supplements have taken care of that. Find a good doctor that knows about supplements.
     
  19. taniaaust1

    taniaaust1 Senior Member

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    I think your CFS is interesting.. yeah atypical as i dont think it would even meet any of the definations of it. What i do believe thou is seeing those definations are just man made things as no one really knows.. so they just picked some things they thought would define.... it is very possible that some may have a mild form of CFS but not meet them.

    When you say you only sometimes get post malaise.. it made me think about many years ago now. when i was going into remission. (maybe you just never "fully" came down with CFS and was lucky). I was able to do a 100km marathon when i was in remission!

    i used to get that cotton wool feel in my head.. its more so a very annoying symptom.

    I agree it sounds like you didnt have mono... active EBV at the time they said. Nearly EVERYONE gets EBV but most dont even show signs of it when they do.. so nearly everyone will test positive on that test.

    If in fact you havent got CFS and it is something else.. I'd try to research similar conditions in which that med you took helps. Im not familiar of that helping in CFS.
     
  20. Dainty

    Dainty Senior Member

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    Haven't read this whole thread yet but I wanted to comment before I lost the thought...

    The brain fog we experience reminds me of something said about coma patients: "Thinking is like trying to swim though a tub of patroleum jelly."

    I would definitely say it's one of my most incapacitating symptoms. You can still lead a dynamic, interactive life without physical function, but when it takes so much effort just to make a little headway through the peafog that is your brain then that really makes your world tiny.
     

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