On Protecting the Brain and Will I Get My Pre- CFS Brain Back ?!

Discussion in 'Fibromyalgia Main Forum' started by Plantscaper, Feb 5, 2003.

  1. Plantscaper

    Plantscaper New Member

    To Jelly, Mikie or anyone who feels they crossed the river of this disease and or almost on the other side.. Does your brain fatigue stop and you experience a clear thinking brain? What will help protect the brain that would be of less potential harm than Klonopin? and is it as effective? Is Dr. Cheney saying that every time you feel "wired" you are destroyng brain cells?! Cause I cannot afford to lose anymore brain cells since driving a car and grocery shopping have become challenging and fatiguing tasks. AMELIA
  2. Mikie

    Mikie Moderator

    I think what Cheney is saying is that allowing a brain to remain in a seizure state is harmful in the long run. The Guai helped my Fibro Fog to go away, but I still suffer from cognitive problems like short (and some long) memory loss, dyslexia, problems doing math in my head, problems understanding comples instructions, etc. Even though my FMS symptoms are about 3/4 reversed, I still suffer from fatigue, but it is getting better.

    One lady here who feels she has recovered from CFS said all her cognitive functions returned once she got to a certain point. I am hoping that as I continue to improve, mine will get better too.

    Klonopin does not make me groggy. In fact, I awaken feeling alert and refreshed. I put 1/4 of a tablet under my tongue as I need it for anxiety of sensory overload during the day. At that dose, it doesn't interfere with alertness.

    Love, Mikie

  3. Plantscaper

    Plantscaper New Member

    Thanks for the feedback.. What bothers me the most about my disease is the lack of brain power..it's what keeps you from being able to participate in life as far as I'm concerned..most jobs are mental, not physical.. if we just had the mental part we could do a lot more..it's so frustrating..I use to read all the time and I can't even do that for long..I haven't read an entire book since I've had this disease, just self-help passages out of books and reference books but can't maintain attention for fiction. Most people who are disabled have only a part of their body disabled, not everything like in our disease..well, I could go on and on... You said that Guai helped your "brain fog". That was prescribed for me for clogged sinuses, and because it did not drain them as expected, I stopped using it. I still have 600 mg tabs. What's your strength and how often do you use it? My physician will not prescribe Klonopin, as I asked after Cheney's article, but I do take magnesium(but not glycinate) and Doxepin..is that sufficient? and I used to really push myself and get totally too "wired" and then, really had insomnia..is your brain protected if you just surrender to the disease?!
  4. Plantscaper

    Plantscaper New Member

    You must have been busy today..I stayed at home due to continual snow..I definitely, agree, about the sleep issue, as I'm chairbound if I don't sleep at all..and I've had many of those days in the past, I hope..I just woke before the sunrise, not too bad..When I tried a treatment a good while back, I had a brief period in which my brain was clear and functioning at near normal levels, so I have a belief that it is still there and I think that oxygenation is the key, because this treatment was suppose to deliver that particular function.. however, it was not wise to keep using this, because it was determined to be harmful..and it seemed to stop working, too. That is what has always happened to me. Something might help for a short while, then stop.. go figure! I posted today on the Road Back Foundation..Do you have hypothyroidism and if so, do you use a natural form of thyroid? Well, thanks for all your help..this is hoping you will be totally well soon.. LOVE, AMELIA
  5. Mikie

    Mikie Moderator

    The Guai will not work for Fibro like it does for sinus problems unless you do the whole protocol and eliminate all sals from your regimen.

    For me, Fibro Fog was an entirely different thing from my cognitive problems. The fog was like being in a dream state and I was dizzy and lightheaded. The Guai almost immediately cleared that up for me.

    I have started to take extra time actually paying attention to things around me. A friend who is a psychologist and I discussed this. We think that as a person gets sicker and sicker, he or she has to focus more on just getting through the day and stops paying attention to the world at large. I believe in the "use it or lose it" adage. Those of us who have been very sick simply have not exercised our brains just like we have not exercised our bodies because we haven't had the energy. As we start to get well, we need to add both physical and mental exercises to get back.

    Love, Mikie
  6. Cactuslil

    Cactuslil New Member

    As a performer, I recently set up my "stuff" so my son could begin his guitar/violin study from my soon to be 80-year old father.

    I have been surprised at my forgetting, being "rusty" or whatever, but my stuff has been boxed now for perhaps 4-years. I am regaining most of what I lost by non-usage rather quickly. My humility is a positive for my son.

    My voice has been the most shocking. I could still sing a scale or two et al. but the practice in spacing was atrotious! I could still sight read unless the scale was peculiar as in the oriental; much different from occidenal scales. Anyway all is not lost. Even with my salivary glands a goner, sips of water save the day. I can teach voice to my son even though I have lost over half of my former range.

    As for words, no loss. Pronounciation is difficult at times but with work I can spit it out! Even withouh a tooth in my head I can still smile! That is a victory. Love Cactus.
  7. Plantscaper

    Plantscaper New Member

    OH, I believe in absorbing the world around me, especially the plants...when I started getting in tune with the growth cycles, the natural ebb and flow of different living things, it caused me to get in tune with myself, stay a lot more grounded, not expect anything from but experience other people here and now...however, I still get impatient with, it seems, at a snail's pace, the lack of real answers for these DD.. My mother's diseases have also, shocked me into the reality of limited time and she was my "island in a stormy sea"..Many of my other relatives cannot connect with this disease and their lack of understanding/support is just a burden.. By the way, Jelly, I'm getting a lot of e-mails from the RBF..Thank you..we may find good news yet... AMELIA
  8. AnnetteP

    AnnetteP New Member

    actually amazes me! I didn't think it was possible to regain what was lost, and I wasn't trying to do so. It just came as a by-product of eating well and taking lots of supplements.

    Years ago, when I was going through my divorce, we had to take various tests, including IQ tests. I did relatively well (okay I did a hell of a lot better than my ex! lol), but over the years I thought if I had to take it again, I wouldn't do nearly as well, even given the same questions.

    Now, I have such a desire to read...one that I NEVER had before. I always had trouble concentrating (the slightest noise would make me lose my place), and I had to read, and re-read several times, with the hope that something would "stick." Now, I feel like I did in my 20s (brain-wise, that is), except better: better in that I can usually read something once and GET IT.

    So yes, there IS hope; there is ALWAYS hope.

    I wish I had a formula to give you for what works, but I can't put my finger on the one thing that did it. It could just be a combination of all the things I take. I know diet plays a key part in brain fog. The more junk you eat, the less fuel your brain can receive.

    Good luck,
  9. pearls

    pearls New Member

    First: to those who have used them in this thread, shortened words and acroynms - especially acroynms - drive me crazy! But then, they always have. Please define for me the following:

    1)What is/are SALS?

    2) What is ABX??

    3) And what is oxygenation - and how do you do it???

    Second: Fibrofog is very troublesome to me, too, because I love "The Life of the Mind." I loved being sharp. I loved being able to concentrate. I loved being able to get to the point of any matter being discussed by all the teachers in the school, and being able to articulate it clearly. I defined myself that way. Shoot! I was the one who usually wrote the grants because of what I've just mentioned, as well as my former ability to edit my words so everything would be described and our ideas sold within the given number of pages.

    One thing that has helped me is to try what Madwolf was talking about - what did he call it? "Giving in to the illness?" "Accept the Illness?" If you haven't read that thread, he didn't mean giving up! It was difficult to explain and difficult to understand, but as I do understand it, I think it has been helpful. If you'd like to see what Madwolf had to say about it, put his name into the "search messages" box. He wrote the first piece in that particular set of messages, so it will be in there.

    It helps to be able to laugh at one's funny mistakes. There is a thread about humor on this board lately that has had a lot of posts. While we can't laugh it all away, it does help to smooth out some of the "rough spots." Norman Cousins wrote about laughter being the best medicine - though I believe he got the phrase from someone else. He was right.

    It used to drive me crazy to forget what I'm talking about in the middle of a sentence. While I still don't like it, for sure, I've learned to simply LET IT GO. Let it go. Go on to something else.

    In our faculty meetings at the school where I work - the ones in which I used to shine, I've learned not to say much. When I have to admit I don't know what someone means or I don't have a copy of the paper they passed out last year (and are disgusted that disorganized people like myself have lost it), I've gotten to the place where I don't worry much anymore about other people's perceptions of me. (Of course, it helps that I've Been There and Done That. I don't need those good perceptions as much as I used to, though it would be nice to look smart from time to time. It also helps that I may retire this year.)

    But, golly, Plantscaper. You've brought up a question I considered. Is it possible we could be getting permanently damaged mentally? While I've had similar thought about our physical condition, it didn't occur to me to wonder about the congnitive aspects. (Fibrofog, I guess.)

    Which brings me to my final - and totally unrelated question: Plantscaper. Good name. I presume you are a gardener or in some way your passion is involved with plants in some way. Me too! I love to garden. I love plants. Hey! Maybe this IS related. When I garden I get exercise, fresh air, and relaxation. I'm keeping a "Gratitude Journal" as an exercise in learning a better attitude towards my fate, by the way. Aspects of gardening are mentioned in that journal on a regular basis.

    Soft hugs and great gardening,

  10. Mikie

    Mikie Moderator

    Dear Pearl,

    Sals are salicylates which are present in botanicals and aspirin (salicylic acid). Guai treatment users must avoid them like the plague.

    ABX stands for antibiotics.

    Oxidation is treatment to get more oxygen into the system, including using oxygen with a rebreathing bag, hyperbaric chamber, breathing exercises, etc.

    RBF is the Road Back Foundation and you can go to their website. They advocate treating some illnesses with antibiotics.

    Hope this helps :)

    Love, Mikie
  11. Plantscaper

    Plantscaper New Member

    Dear Fellow Sufferers, Well, I have a lot to digest and will probably have to start a new journal to keep track of all the good suggestions..I have been on a low-carb diet, however, due to Hyperinsulinism, and I wholeheartedly agree that high glycemic foods will have ill effects on one's body and mind!! However, beyond that, my brain just "peters out" when I just try to listen to casual conversation..example: when I spent a few hours with my newphew who talks constantly, I had to recover from that the next day..my brain just "peters out". And when I am in a big room of people, I experience a lot of "sensory overload" and I have the desire to escape the situation. Also, I use to love to drive a car, and now, it wears my brain out with how much I have to focus my brain to be aware of the traffic..and I have had, when really exhausted, had to rethink what certain traffic signals mean. Beyond that, let's just not tread into extremely heavy traffic times..sometimes I just want to pull over and catch the bus.. but we don't have public transportation in this remote mountainous area, so I just stay at home unless I'm in my best shape.
    Jelly- I did read about the Maca root, and have added to my possible treatment list, but I am going to wait until I can see my doc to discuss all the Hep/AX therapy and I have received a lot of help on the RBF and some have sent me to another website, too. I wish they are more descriptive of their own problems, but some have gone into detail..and I an e-mailing a few, too. Thanks again...I'm snowbound in Colorado Pearls- I think the lack of good mental functioning has been the worst effect of this disease for me, because I am a highly curious person and wanted to keep learning things the rest of my life..but I talked to my disease last night and it said that I need let go of the cognitive skills and absorb the non-mental functioning aspects of life, as I have had the problem of "overanalyzing" in the past. Which brings me to horticulture-my passion-during this disease I have educated myself on about every existing indoor plant(we can't grow a lot outside,here, except in summer), which brings me peace and joy.. During the summer, I have sold a lot of plants that I have propagated(which is what I really get into because I like to take a plant from the beginning to maturity. I'm going to focus on seeds this year, but my space is running out for too much more propagation..I have been involved, very limited due to disease, with the Master Gardener program and would like to be one eventually and if I ever get over this disease I want to go back to college in Horticulture.. Annette- I have appreciated your responses on my other posts-I am going to focus more on the wholistic area, now, too. What you stated about how your concentration use to be is where I am now..it is so hard to maintain attention.. although, I think that I also have an Attention Deficit Disorder that went undiagnosed, until I figured it out a few years ago with a doc's help and was placed on Cylert, which helped for a good while, but not enough, I think, because of the similar cognitive problems with CFS..I think that there is a connection between ADD and CFS..some others have both, and my brain reacts to medications as an ADD person's, which is unlike the normal person. AMELIA[This Message was Edited on 02/06/2003]
  12. Plantscaper

    Plantscaper New Member

    Dear Nia, Pretty name..Would like to explore exactly what kind of neurotherapy who would be referring to and which search engine... sounds interesting..AMELIA
  13. pearls

    pearls New Member

    Thank you, Mikie. I often simply spell out words and phrases like "fibromyalgia" and "chronic fatigue syndrome" because I know there are others even on this list who might like to know what everyone talking about. I'm a teacher who sits in meetings where other teachers are constantly using the latest (they change often - usually to be politically correct - ugh!) acronyms for learning handicaps, tests, and the like: ADD, ADHD, RSP, SAT9, CLAD, SDAIE, BCLAD, ELD, LMNOP, QRSTUV (yup, the last two are bogus - sorry, I couldn't resist!). <G>