Discussion in 'Fibromyalgia Main Forum' started by HagerTX, Jan 27, 2006.

  1. HagerTX

    HagerTX New Member

    I was wondering about the term brainfog and how the definition may vary from person to person.

    I've had a form of CFS for 7 years now. It started suddenly on June 21st 1998 when I woke up with what I can best describe as the symptoms of a generalized stroke. (I was 26 then). I woke up that day feeling like I had 6-8 drinks of alcohol, mixed with benadryl and low blood sugar. All my skin had lost a fair amount of sensation,was seeing stars and with coordination problems (most of the problems anyone would have if drunk).

    Over a period of 6-12 months I saw about 50% improvement and it just stayed at that level. I still can't feel sunburn and scratching does not produce a normal sensation. I see stars almost 24/7 (not floaters, as if I've stood up too quickly). The drunken type feeling is still there but it's more like 3-4 drinks now. Feel very detached. These symptom never fluctuates for me.

    So for those out there with symptoms that have been referred to what I'm describing similar to what you have? or is it different in characteristic?

  2. Trevor1

    Trevor1 New Member

    Mine is a serious detatched feeling. And it creeps me out daily, ive been sick now for around 8 months and the detatched feeling hasn't let up one bit.

    It is the hardest feeling to describe to doctors, I just don't feel "all there" and by all there I mean what I see through my eyes kind of feels like a dream. Very strange...I don't know if this is what everyone elses is like. But if your detatched feels like this its probably real similar to mine.

    My short term memory is shot, get strange headaches. Eyes get blurry from time to time. And concentrating is very hard.

    My CFS specialist says, "my brain is just tired from fightning off viruses, the EBV especially." But this bothers me because, if my brain was just "tired" wouldn't I have some "good" days? Like maybe one day where I actually felt here. Sooo I don't know, but to answer your question.

    Yes mine is a very detached, out of it feeling. Its by far my worst symtpom and drives me crazzzy. I take Fish oil, which is suppose to help, but haven't noticed any changes.

    Take care,
    [This Message was Edited on 01/27/2006]
  3. rockgor

    rockgor Well-Known Member

    of brain fog recently recently. Maybe it was on this board. Anyway it said confusion, forgetfullness, hard to concentrate. That's what I have.

    I often type the wrong word when posting. I can't find anything. I forget stuff as soon as I hear it. I put the milk in the cupboard. I couldn't find the bank. I put stuff by the door so I'll remember to take it, but leave it behind anyway.

    The best example (ok, the funniest) was posted here recently. Lady kept pointing her cell phone at the TV and punching buttons. Darn channel just wouldn't change.
  4. HagerTX

    HagerTX New Member

    I can understand the frustration of even trying to accurately describe it. In the early years I told them of my 'brain fog', but I wish I'd gotten more specific. Some doctors hadn't heard the term. Those who had heard the term usually thought it to be more of a malaise, off in your own world type of thing. Mine's very much like an alcohol buzz, not exactly but substantially.

    Have you been to a neurologist? if so have they done an MRI and/or and MRA of the brain? I'm getting an MRI on Monday. A radiologist my parents know said the field is pretty dynamic and the images and technology are able to show things more clearly even compared to two years ago. My 2004 MRI and MRA show some slight abnormalities but I'm getting a repeat to see if anything else is seen more clearly OR if there is a change seen.

    A doctor I ran across in Atlanta, associated with Emory University, sees lots of cases similar to mine. He believes I have widespread inflammation causing the chronic stomach condition and is also causing inflammation in the blood vessels in the brain. He has a colleague with it. I don't know if he's 100% right but I feel as though he's in the ballpark. His theory accounts for just about all my symptoms.

    I'm fairly new to the board but I've been scanning posts for several days now. Do you think your CFS doctor is pretty good? In 1999-2000 I saw a self proclaimed CFIDS doctor but I wasn't impressed. This doctor didn't even run basic CBC and Comp Metabolic Panels--ordered some unique panel that's usually run for cancer or HIV patients. Whatever that test was, my results were normal but she still said I needed Glutathione injections--which didn't affect me one way or the other. I later took B-12 injections once a week--it may have helped a small bit but nothing major.

    Your doctor said your brain is tired from fighting off EBV. Have they narrowed it down clinically by EBV panels and such? Reason I'm asking is that my first 2-3 doctors felt things were 'viral' but after a year or so they dismissed it.


  5. nanna4550

    nanna4550 New Member

    Yes, like a having a stroke then mixing benadryl and alcohol describes it well.You funny girl-good discription.
    Low blood sugar makes me faint and nauseaus, so it's not that for me. Difficulty concentrating, difficulty focusing on what I'm doing, trouble finding words in my little brain, a drugged feeling, The trouble is that when it is severe and I'm at work it causes severe withdrawal
    (just trying to disappear into myself), and is accompanied with high anxiety, heart palpitations & flushing.
    I just wish I could do something about it.
  6. HagerTX

    HagerTX New Member

    My doctor is pretty sure I had a stroke of some sort. My symptoms aren't typical CFIDS and I don't have any FM but I do have chronic fatigue as a symptom. (Mainly the drunken type feeling, numbness and Crohn's disease type symptoms).

    His practice (in Atlanta) draws from several states so I think he's able to see more of the odd cases like mine. He went on to say that there is inflammation in the blood vessels in the brain and over time, plaque will build up. IN the same fashion a blood clot will break loose and cause a stroke in someone, the plaque can break loose and cause a similar ordeal. Other doctors can't verify this but think it's plausible. I'm on Plaquenil to see if that can help matters..hoping to see some improvement over time.

  7. Dee50

    Dee50 New Member

    I think the extreme brain fog is maybe caused by lyme not EBV. I think there is tons of brainfog with EBV and its co-infections, but the extreme brainfog I believe is due to the lyme and the co-infections that go with it.
  8. Trevor1

    Trevor1 New Member

    Hey Hager thanks for the response,

    I have been to a neurologist, that was the 3rd doctor I went to see, my regular doctor thought I should go see one. Because he couldn't really understand the "fog" feeling. Well the neurologist couldn't really either.

    I had Two MRI's, one without contrast and one later with contrast. Both came back normal, which I suppose is great news, almost wanted to see something wrong just to know my brain really was not normal heh. Anyway after the MRI's coming back normal he didn't do anything for me.

    So far I like my CFS specialist, I believe he knows what he is talking about. And don't know of many others in my area. Basically he is the first doctor to actually DO something, so im going to give him some time and let him try his methods. Since no other doctor has even tried. Ive only been seeing him for a little over a month, so I can't expect to much right away.

    Regarding the EBV, I have had two EBV panels done. One by my regular doctor which came back with a present infection and he didn't even mention it. And then a second ordered by my CFS specialist. He put me on the supplements, since the EBV is viral the only way to fight it is to build the immune system up. So hes on the right track with that.

    There was one good sign, my EBV titers had gone down a bit on my second test. So a slight sign its slowly getting weaker. But obviously I still haven't gotten rid of it.

    Take care,
  9. jaltair

    jaltair New Member

    - a feeling of walking in clouds (similar to having one drink over, the tipsy but not miserable feeling – sometimes it feels good if I don’t have to go anywhere or do anything, LOL!)
    - Detachment – I like being by myself / also, decreased tactile stimulation
    - Forgetfulness - this is the most irritating, especially at work
    - Blurry vision at times – even my glasses won’t work well
    - Dizziness at times – I’ve fallen when I lean over
    - Not able to think or be rational at times – not making sense

    Yesterday, I looked at a tab that I had been given when my husband and I had lunch. Usually I double the amount of tax for the tip. This time I don’t know what I did, but I ended up putting a tip of about $11 down! Geesh! This is typical when I have the fog.
  10. sues1

    sues1 New Member

    Sometimes the head feels as if the insides are swirling....and I have pressure.....eyes hurt, any print on a black background makes my stomach upset and eyes hurt. Can not read it. ETC.

    Do you have any sore throats, swollen glands, toothaches,stiff neck, or IBS? To go along with what you have told us?How about feeling flu like, painful everywhere, tingling (like little shocks) on your face, lips or elsewhere?

    Wishing you good results from your new Dr.
    [This Message was Edited on 01/27/2006]
  11. sydneysider

    sydneysider Member

    Reading your post makes me wander why you think you have CFS.

    The way that your problems started, loss of skin sensation, seeing stars, and fog that doesn't fluctuate, do not seem typical of CFS to me. Sounds more neurological.

    I have FM, not CFS, but I find that the fog that most people describe has typical characteristics. I have seen some very good posts describing these, but unfortunately have not kept info on how to find them again.

    Some typical symptoms are...forgeting things very easily....puting things in wrong place...saying wrong word...leaving end off brackets...getting confused easily...loss of spelling ability...inability to concentrate on more than one thing at a time.

    Many of the symptoms that I believed were FM, turned out for me to be cervical problems, so these days I'm sceptical about writing off so many symptoms as FM or CFS symptoms. My best suggestion is to see good specialists, and ask lots of questions.

    I'm wondering if you've thought of taking vitamins or nutrients that might help repair nerves eg.vitamin B.

  12. acuario

    acuario New Member

    I feel so lightheaded, (this is my worst symptom too). a feeling that am not totally awake, like a little unconsious, like if your body is there but not your soul. a buzzing in my ears and bad short term memory. I feel my head lighter and pression in my forehead.

    Some people say brainfog is caused by FMS or CFS and I think that could be true if I was getting this symptom slowly as I was getting FMS. But it was so sudden when I gat all these symtoms, in a week or less I was so lightheaded/brainfog and with really bad memory, bad coordination and it was after I gat a flu/viral infection.

    this have stopped me from going to college.
    I just hope that one day I will find out why all these lost years I have been feeling like a zombie.
    and find the cure.
  13. HagerTX

    HagerTX New Member

    Technically I have 'chronic fatigue' as one of many symptoms. And although it's significant it's not nearly the worst symptom I have. About 18 months into the ordeal I ran across a websitesite on CFIDS and I seem to fit the category. At least back then, the category seemed extremely broad and included differing ordeals with the common thread of long term fatigue. I went to a CFS doctor from 1999-2000 and she thought I fit the category but wasn't the typical type patient.

    You're right, my symptoms are mainly neurological. Some speculate that it's Lupus or Vasculitis of the CNS among other things, perhaps Crohn's Disease. Multiple workups by neurologists haven't revealed much of anything. I'm having a repeat MRI of the brain later today which hopefully will reveal something.

    Lots of things have been tried from supplements, vitamins,(including weekly B-12 shots for months on end),but nothing seems to be getting at the core of the problem. Since November I've taken CoQ10 (~300mg a day) and 1200iu Vitamin E. Oddly enough when I've taken more than 2-3 supplements per day my fatigue is noticeably worse.