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Neurological symptoms, anxiety and CFS/ME

Discussion in 'Cognition' started by xchocoholic, May 30, 2010.

  1. xchocoholic

    xchocoholic Senior Member

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    I've found several things that have helped me with brain fog and other nuerological symptoms of my CFS/ME.

    Eliminating foods that I was intolerant of was the most important change I made. And then keeping my chronic hypoglycemia under control via the Paleo / low carb diet, treating for candida, getting EFAs via fish oil and other healthy fats, taking 2 Solgar essential aminos 3 times a day and Theanine and 5HTP for sleep. I take other supplements like EmergenC, B12 or use a cast iron pan as needed too but can't really tie those to my neuro problems.

    Gluten, and maybe other toxins, were causing me to have problems walking / ataxia. My legs would get heavy after only a few yards, then my right foot would start to drop. Then my vision would get out of focus and objects would dance when I tried to focus on them.

    And I would fall onto anyone or anything near me without realizing I was falling from time to time. This was why I had to use a motorized cart most of the time when I was running errands. And if I wasn't using one, it was because they were out of them at the time.

    Like a dummy, I thought this was all just CFS/ME. And would explain all of this as muscle fatigue ...

    All of these symptoms were gone after ONE year on the GFCFSFEFCF + chemical free diet. From the research I've seen this would be probably have been diagnosed as gluten ataxia. I failed the Rhomberg so ataxia was a given.

    According to Dr. Hadjivassilou, occular ataxia and heavy feelings in the arms is common with gluten ataxia. My arms stopped feeling too heavy to wash my hair about 2 weeks after my ataxia was gone. My visual problems when walking lessened but are still a problem if I don't have my hypoglycemia under control. I usually eat something with some sort of sugar prior to activity to help with this.

    I've met some who have been diagnosed with gluten ataxia, via the gluten antibody test, who didn't recover despite being gluten free, so I wonder about the other toxins I removed. FWIW. I have one friend who's casein antibodies are just as high as her gluten. And now she's looking at how low some of her nutrient levels are ... Ultimately, I expect her to be diagnosed with leaky gut syndrome.

    Myoclonus is another nuero problem that I've been working on. I personally can link my action myoclonus to anxiety because of the frustration I feel when my hands won't co-operate.

    Here's an article that describes myoclonus.

    http://neurology.health-cares.net/myoclonus-types.php

    I have nocturnal myoclonus and action myoclonus. Nocturnal myoclonus leads to jerking when falling into REM sleep. Some sleep disorder doctors say this is "normal" but I have to question this. Mine was so bad that I would never enter REM without using the medication (Klonopin) or the supplement (Theanine) to calm these nuerotransmitters. I think I have a thread on Klonopin, Theanine and nuerotransmitters on this board.


    So far I know that gluten will cause my nocturnal myoclonus and insomnia. And taking Theanine and 5HTP will resolve this. Klonopin works too but at this point, I'd prefer not to take medications.

    My hands still shake when I try to do my nails, eyebrows or write for any length of time. I've never tried taking Theanine during the day though to see if it would help ... Theanine is a natural treatment for seizures and it's been working for my NM for a year now.

    BTW. I've had a variety of seizure problems at least since I was a toddler so this may never clear up for me.

    HTH ... X

    Ps. I'm not sure if I'm done here or not but I need to get busy ... :hug:
  2. Misfit Toy

    Misfit Toy Senior Member

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    I wish I could take theanine. It gives me horrid nightmares and so does 5HTP. Vivid killing sprees. It's awful. I don't feel like I sleep on them. Thank you for posting this. Brain fog is one of the most disturbing symptoms. I eat a gluten free diet but have such a hard time cutting out dairy and all of my other allergies. Soy. It's not easy finding foods that don't include soy or dairy or even wheat. I buy bread made of millet and flax but many breads are made with soy flower or rice flower and I am allergic to rice too. It's ridiculous. Tyrosine has helped my brain fog. I take Emergen C too and do well with liquid minerals over capsules.
  3. xchocoholic

    xchocoholic Senior Member

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    Hi Spitfire,

    I was wondering why you were trying to take Theanine. I take it because of the research I did on theanine and Klonopin working on the same nuerotransmitters. I already knew that Klonopin worked for this so taking a natural alternative to Klonopin was easy to figure out ...

    Also, I've discovered that the brands I used for these makes a HUGE difference. I've always taken Enzymatic Suntheanine and it's always worked even if I have to vary the dosage from time to time. The first time I took Theanine, I took 100 mg and it calmed me right down. I'd been exposed to quite a of gluten and so I was shakey. I had to take it every 4 hours for a couple of days because that shakey sensation kept coming back but then I was able to start taking it at night only.

    As for the 5HTP, I suspected that I had a problem with tryptophan because chicken or turkey would put me to sleep every time I ate too much of either. I only figured this out after eating a few meals of turkey back to back though. Otherwise, the sleepy feelings I get from a small amount of chicken or turkey are too vague to distinguish between normal feelings of fatigue. The only brand of 5HTP that works for me is Natural Factors enteric coated tablets. Jarrow and Source Naturals didn't work but it may be because they are capsules.

    Melatonin left me feeling too hung over during the day and 5HTP worked ... A word of caution on 5HTP though. The first time I took it I took 50 - 100 mg. I can't remember ... BUT it felt as if my brain had locked up on me and scared the crap out of me. I swore I'd never touch it again but after researching it a little more saw that some people needed to start this one really reallly really slow ... so I took 25mg the next time and was fine. Since then I've played with the dosage and am currently at 200 mg. I feel fine the next day and am sleeping through the night so this is a good dosage for me right now ... (I'm using more than I would normally because my hormones are playing tricks on me. I'm post menopausal and I'm ovulating and even spotting today ... )

    I've tried Tyrosine but didn't notice anything. I'll try it again though as long as I have the bottle here ... I think the essential aminos I take have enough DLPA (which converts to Tyrosine) in it for me.

    I take Taurine from time to time too. I usually have plenty of energy and brain power in the morning but if I'm headed out in the afternoon and I''m feeling a little tired, I'll take one. If I take this when I'm not feeling tired, it makes me feel WIRED ...

    I can't say enough about eliminating those foods you know that you're sensitive too. I know how hard it is and how bad is sucks to have to watch what we eat ... I still whine ... lol ... I have some recipes here that may help you though. Or just google recipe and whatever ingredients you can eat and you'll find something. I just love the internet, don't you ? There will be a report coming on soon on how badly those breads you're eating are cross contaminated with gluten. I have a link to this in the gut section ... I'm a big supporter of the Paleo / low carb diet myself.

    Take care ... X
  4. xchocoholic

    xchocoholic Senior Member

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    I'm back but just for a second. I really need to get busy here today ...

    I just wanted to make sure that you all understood that gluten or other food intolerances aren't the only culprits here. We've all read about how our cytokine levels are high and these are what our bodies produce anytime it handles a toxin whether it's foods, mold, candida, etc ... My thoughts when I started all of this was too control what toxins I could and hopefully it would give my body enough of a break so that it could handle the toxins I can't avoid. I'm good with the detergent aisles in most stores now so this is apparently working.

    By reducing our cytokine loads our immune systems are better equiped to handle whatever esle comes our way ... Here's an article that says this better than I can ... It kills me how they put diet at the bottom of the page ... DUH !!! Is there any bigger source of toxins that what we put down our digestive tracts ?!

    http://www.prohealth.com/library/showarticle.cfm?id=3748&t=CFIDS_FM


    Now I'm really going to go do some housework ... oh and maybe lay out in the sun ... lol ... tc ... X
  5. girlinthesnow

    girlinthesnow Senior Member

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    I take a really low dose of 5HTP for sleep, 5 mg, but stop it every once in a while and take a herbal Nytol for a week or so.
  6. xchocoholic

    xchocoholic Senior Member

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    Wow .. that's a really low dose. I have horrible insomnia and that much wouldn't touch it ... I'll have to look for Nytol. Thanks ... X

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