I had a brain scan - qEEG - MY BRAIN IS DYSFUNCTIONAL from CFS/FM

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Mar 27, 2004.

  1. Wolverine

    Wolverine Member

    Hi all. Im not sure how common this would be for alot of us, but i think it might be. Before getting sick, i was very clear and sharp in the brain. Now obviously, as so many of u know, days are spent in a hazy fog not knowing what im doing or supposed to be doing.

    I had a test about 5 weeks ago or so, called a qEEG. You may know that an EEG is a standard test to look at the brainwaves and see how they are functioning. Well, a qEEG is a Quantitative EEG and it is approximately 100 times more sensitive than a normal eeg to look at the bands of the brainwaves.

    The test went for 3 hours, and had a tight cap on my head with wires comin out of it to measure the waves on the computer. I had to do many excercises on a screen, look at things, listen to things, try to remember lists, etc. I got the results back to the Dr i was seeing, and out of 81 brain functions they tested, 2 of mine were abnormal. Those were 'Memory' and 'Processing' which pretty much sums up brain fog.

    I always walk around the house not knowing what to do, just staring blankly and unable to start doing things. I think of something, walk to the next room and forget straight away. This is all the time. Also, the processing part, thats like making decisions, thinking of things u have to do in certain order efficiently etc. I can never do that. I can barely make decisions most of the time, and everythings a mess cause i dont know what to do with it. I was NEVER like this pre-CFS/FM, i was sharp and clear and knew what i was doing, got straight A's / distinction in my computer & networking diploma. The dr said i could try ADD medications to speed up the brain but u can get addicted to them fast, like ur brain needs them. Otherwise, hes trying me on some other things but it will probably be slow going because i have to detox the liver first using NAC (N-Acetyl-Cysteine) and Glutathione, because my glutathionation is less than 10% functional! this proves and explains the severe chemical and drug sensitivity i have, as the glutathionation pathway is the major detoxifier of chemicals and drugs. I had the functional liver detoxification profile test from ARL - Analytical Referance Labs (This is the Australian branch of Great Smokies). I think the test is most worth having!

  2. alonebutnotlonely

    alonebutnotlonely New Member


    I would dearly love to have one of these done because my IQ has dropped 20 points since I was 30 (I'm 51 now). Fortunately or unfortunately (as far as Social Security is concerned) it is still fairly high. But I still find myself rambling back and forth trying to remember what I was there for. I can't read anymore.

    I used to read 2 or 3 books a week while I was working. Now I've been trying to read one book since the 1st of the year. God knows how long it would take if it was something technical and I worked for 32 years as an electronics technician. Yeah right I can still do my job.

    Well thats about it for my pity party.

    Oh, I read your profile and you sure are a "cute little thing". Look to be a bit of a bad boy. Yeah?

    Thanks for the info,

  3. Hippo

    Hippo New Member

    Loved your picture, you look more like a rock star than a CFS patient. I hate to see such a cute young man with so many health problems. Blessings to you.

  4. sydneysider

    sydneysider Member

    This is very interesting. I also suffer from the memmory problems etc. as you describe.
    I would be interested in any more info that you have of tests that you have had done, and where you are getting them done.
    I suffer from FM and am finding it very hard to get the docs to take my health problems seriously. I could go on, but we all know the story.
    Anyway, as I also live in Sydney, I would be very greatful for any info, on any help that is available here.
    I believe it is quite OK to post the names of doctors, and places to get tests done
    All the best.
  5. joanpdx

    joanpdx New Member

    I have the same brain fog with CFS. But the weird thing is that it is not always the same. Some days are much worse than others. It feels like if your brain were a computer, it just crashed.

    In general, it feels like weekends are worse. I wonder if that is because when I go to work I get into a certain frame of mind, or maybe more beta waves are produced by the brain.

    For awhile it seemed like Tyrosene helped. Now I'm not sure. Then I added Lecithin and Rhodiola Rosea, and either one of them or the combination helped.

    I read somewhere that it could be a problem to take an amino acid for a long time because it can unbalance your system. Does anyone know where to get your aminos tested?

    Also, what is a good brand of a combination amino acid supplement that gives you all of them? Has anyone found it is helpful to also take that, to keep your aminos more balanced? Or is it ok to just take protein powder?
  6. jasontz

    jasontz New Member

    I also had an abnormal QEEG test. Dr. Myra Preston use to work down the hall from Dr. Cheney and she did a study and found roughly around 90% or so of CFIDS patients had the identical abnormal QEEG. She submitted it to the New England Journal of Medicine years ago and they replied back to make the study article a little shorter. So she did. Then all the sudden they changed their mind and didn't want to publish her study. The Harvard Medical School also replicated the same findings that her study did. So yes to answer your question the vast majority of us have this abnormality with Qeeg testing.
  7. neen85

    neen85 New Member

    Thanks for posting! I am taking the glutathione for "repair",but wasn't aware that it detoxifies! Mine was really low like yours when I was tested. I agree with the others,you look like a rock star,or a model. Daneen
  8. LBV

    LBV New Member

    You know they want PROOF you cannot work. I think this test would show alot of what we cannot prove. Wow, you are so knowledable for being so young! (Yes, I had to look at your pic after someone mentioned it. Is it against board rules to flirt? just kidding, I'm too old and married to do that.)


  9. Mikie

    Mikie Moderator

    This may be a temporary condition. I've been able to reach near remission through my treatments several times, and when I did, my cognitive functions returned.

    We once had a woman here who recovered from CFIDS and she said everything returned, even memories which she had thought were gone forever.

    In the meantime, one can read material which challenges the brain and do word puzzles. Doing them with the non-dominant hand helps new neural connections in the brain.

    Dr. Cheney suggests Klonopin to protect the neurons from early death due to the overfiring/misfiring of the neurons in our brains. Seems we are in a chronic slight state of seizure.

    I think it is really important to treat our illnesses and not assume that we cannot do anything about them. There are a lot of treatments and through trial and error, we can find the ones which help us heal.

    I don't think our plight is hopeless and I do not believe our cognitive problems are permanent as long as we take steps to preserve our functions and protect our brains.

    Love, Mikie
  10. tansy

    tansy New Member

    your mental functions will improve as you do. Many experts have observed that an improvement in cognittive functioning is an indicator of improvement, the more physical improvements following on close behind. So once that begins you will know you are on your way.

    I used to play guitar, harmonica, percussion, and sing. Cannot play guitar anymore, may hands just wont play ball; with my brain as it is I would never be able to remember anything so would have to have the music in front of me. I used to sing with a good pitch and could harmonise as well, since ME my addled my brian I cannot pitch at all, I know I'm out but can't get it right. The harmonica and percusiion are still no goers right now but that's down the nerves and muscles not my cognition.

    I still love my music. I learnt photography post ME and after a series of unplanned events ended up taking photos of musicians, so I got to combine two of my passions. For a few years a lot of this work was published.

    I have thousands of films of young unsigned musicians as well as more well known and established ones.

    Due to recent improvements I managed some more live gig photos recently. A young metal band were over the moon, they said I made them look like real rock stars at a stadium (hmmmm) and I found my reaction times had improved again, 2/3 of the way back to where they were 6 years ago. So I'm pretty chuffed too.

    Sorting out my gut, anti oxidants that cross the blood brain barrier, addressing ISAC + + + all helped. You are young enough to get back to being well again, this happened years ago when less was known about treatments, now your odds are even greater.


    <br>[<i>This Message was Edited on 03/28/2004</i>]
  11. Wolverine

    Wolverine Member

    Thanks everyone for the replys and nice comments :p
    About the rockstar comment? Not quite but hopefully one day ;D (I was in a band b4 cfs)

    Anyone in Australia who would like the test done, its in central Sydney and is called the Brain Resource Centre. Havent got the number on me as im away from home, but you can get the number from directory assistance. I'll post the no. when i get home.

    Jason: Yeah i had a feeling most of us were in the same boat brainwise. It seems most of us, though to varying degrees, have the same sort of cognitive dysfunction / impairment.

    I do believe what Mikie said aswell though that it can all be completely reveresed, as i too, if something i am doing is making me stronger and i physically improve for a while, my brain starts working much better aswell. Thanks Mikie.

    Daneen: yes the glutathione detoxifies aswell - it is our bodies major detoxifier of drugs, chemicals, etc. :)

    Skeesix: Cool that ur a musician. I know what you mean about not being able to think of songs aswell as before! Thats up and down for me too depending on how 'thick the fog is' and generally feeling well or not :p Ive also had some trouble with lyrics too. I would try an SSRI for brain function when the time comes - i do actually get anxiety and depression aswell with this condition, and ive also heard that SSRI's etc can help with blood pressure & therefore faintess? Dr Teitelbaum mentions this.

    Thats cool tansy - the music scene is just great hey :) The most interesting people ive met are usually somehow involved with music! I also think that we have to address all of our separate issues - the ones that effect us most first, (such as gut and sleep for me) and we will see improvements in everything else too.

    Thanks all, hope ur well.

    <br>[<i>This Message was Edited on 04/02/2004</i>]
  12. Wolverine

    Wolverine Member

  13. buddylou

    buddylou New Member

    I definitely have 'brain fog' and am taking Klonopin. Originally for sleep but upped the dose for brain fog. I also do crossword puzzled to keep my brain "in shape" but it can also be very frustrating when I can't think of a word or keep mis-reading the clue or mis-spell the answer and then nothing fits. Ah such is the life of the CFS patient.
    I've been going to a specialist in NJ but our new "improved" medical coverage does not cover him. Fortunately, my father-in-lae is on the staff at Harvard Medical School and has found a specialist there. He is not taking new patients but after reviewing my history will consider taking me on.
    I am going through the disability process, am in the appeal phase, and this qEEG would be great ammo.Thanks for the info.
  14. tansy

    tansy New Member

    and I'm very pleased to be able to tell you it was a good decision for me.

    Chris, I studied clinical nutrition years back, and of course have I've had to do some really serious catching up in recent years. Many alternative practiioners will tell you how important it is the get the GI tract and digestive system working properly.

    I finally got to have 5 hours good sleep 60% of the time, I doze for about 3 hours after that before rising. That's really helped too.

    Yes I agree. Musicians are so much more honest, sharing, and accepting than any other group of creative/artistic people I've known. They have helped me to keep my sanity and I'm assured reguarly by them of how much they value me, it's a mutually beneficial relationship for all concerned. When we have an illness like ME all this is so important, much more effective than the psychiatry based programmes being pushed in the UK now.

    Can't stand the precious artists among them though but they are thankfully few and far between.

  15. kirschbaum26

    kirschbaum26 New Member

    Dear Chris:

    Thanks so much for sharing your information. I would be interested in finding out if this type of test is available in the US. I also wonder if you have to have severe fibro fog for it to be of any use in diagnosing FMS/CFIDS? I am fortunate in that I have periods of lessened pain and less "fog"...which I could figure out how/why and then change my life so that I am better, but I can never seem to figure it out.

    Good luck and hope that you are able to use the info in your treatment.

  16. Patti2

    Patti2 New Member

    I hear what you are saying. befor they sent me to the shrink they did a cat scan, eeg and anything else to deal with the fog and headaches. They said my brain thinks to far in advance and I think about what is going to happen than what is happening. So somewhere I am thinking of what where and when is the problem. I live in outside of cleveland and we have this very tall bridge, the weather has been so crazy tht you could not see the car in front of you and that is how I feel almost all the time. The dr did say he saw some moths flying around in there. I asked why they couldn't be butterflys, He said they will turn to butterflys when the fog goes away. Fibro fog yeah!! take care we are here.
  17. puggles

    puggles New Member

    I too had the extensive Qeeg test and the LENS (The Low Energy Neurofeedback System) test as well. My Qeeg/LENS tests came back with a very large black area that they believed is/was a viral signature. IF the low energy therapy clears or shrinks the black area up, then the virus is not active. IF the black area does not clear up, then that part of my midline brain (where they see the viral signatures) is still active. I also had results showing that my brain NEVER EVER rests. There are no normal rest gaps that all people have. I have NO gaps, brain just keeps going and going. My processing speed was 8-9mgz. Given my previous IQ and level of advanced educations (2 grad degrees plus about to start doctorate), my processing speed should have been between 10 and 11. There were a large area of messed up brain waves throughout the left side and a small area of normal area of brain waves. &lt;BR&gt;
    The doctor who did the testing is working with Dr. Cheney in this area. More info than that I was not told about. My husband also got sick five years ago and his brain showed very different damage from mine. He too got a virus five years ago and has no energy and the process that should have gone on in the back of the brain is being done in the middle of the brain. I got CFIDS/FM 15 years ago so my brain is very badly messed up, needless to say.&lt;BR&gt;
    So, is the damage in our brains? Yes, it appears so. Our brain waves are badly messed up. I am sure there is other damage to our brains but I have not had the other testing. This type of testing (Qeeg and LENS) showed more than enough of damage to account for my loss of short/med/long-term memory and processing speed. &lt;BR&gt;
    Both my husband and I will be going through the LENS therapy for the next possible 8 to 12 months and will be tested throughout to see if the therapy is working. Will update as we go along.&lt;BR&gt;
  18. acer2000

    acer2000 New Member

    I don't want to be alarmist, but don't make the assumption that just because your brain symptoms show up on a scan or QEEG that this means any sort of therapy that is designed to &quot;train&quot; your brain waves can fix this problem. If its truly virally induced, any sort of neurofeedback is unlikely to really &quot;fix&quot; anything. And it most likely will make any therapy that attempts to modify your brainwaves more risky due to the underlying instability caused by an organic problem. There is very little research on neurofeedback for people with CFS. Almost all of the research is on certain subtypes of ADD/ADHD and some kinds of seizures. The safety and efficacy of that treatment doesn't necessarily translate some something like CFS. And since it attempts to modify permanently how your brain works, you might be in a bad situation if the treatment causes a problem. There isn't much consensus on how to do neurofeedback in the first place, and even less on what to do if it causes a problem.

    LENS is somewhat different than normal neurofeedback - I'd be curious to know what they told you about what its supposed to accomplish and the risk involved. Specifically for someone who has CFS or organic illness as opposed to ADD/depression/anxiety/etc...<br><br>[<i>This Message was Edited on 04/11/2010</i>]
  19. victoria

    victoria New Member

    Here's something to consider:&lt;BR&gt;
    if there's an ongoing infection of any kind, likely any kind of brain retraining will not hold unless you plan on doing it forever. Makes sense if you think about it.... Can't remember now who it was, but one person found benefits from neurofeedback tho it wasn't permanent. She later found out she has Chronic Lyme, which explained why she couldn't get permanent results unlike those with ADD and such.&lt;BR&gt;
    all the best&lt;BR&gt;