Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

Discussion in 'Neurological/Neuro-sensory' started by Hip, Apr 27, 2016.

  1. btdt

    btdt Senior Member

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    I am in recovery from more tooth problems I will take a look another time I came here today looking for something and forget what it was.
    I have been offered the CBD oil too chicken so far and I would have to travel to get it and I am surely not up to the trip ... have not been for months. I am hoping it is infections keeping me down and this is the last of them but can't be sure.
    Why do you think the CBD oil started to help you.. did you change something else first that allowed it to work?

    I have talke to the person next door already it may be he has slowed down some of his smoking so far this year... I need to move anyway just can't find a place I can afford... lots to do that is for sure.
     
  2. heyitisjustin

    heyitisjustin Senior Member

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    I too have rebound issues with GABA supplements. I sleep better initially but after a few days my sleep degrades. Most GABA supplements increase dopamine (to varying degrees). Dopamine decreases ACh (acetylcholine) from what I recall and I think I had an ACh problem. You might want to try bumping ACh with Acetly L Carnitine and a choline source and see if that helps.
     
  3. AliMac64

    AliMac64

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    Hello everyone
    I have read through this and first I am very impressed by all of your knowledge about these different things and to be honest I found all the different details and doses a little overwhelming. I wanted to ask a question of those of you with all this experience, as someone new to trying to manage my symptoms I would really like to know what you would recommend to start with, which one thing would be your priority to take for this ‘wired’ symptom we have and when would be best to take it?
     
  4. Hip

    Hip Senior Member

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    Hi @AliMac64
    The trick is to find something that works for you. You could start by trying N-acetyl-glucosamine or N-acetyl-cysteine.
     
    Abrin and AliMac64 like this.
  5. Mary Poppins

    Mary Poppins 75% Smurf

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    This is such a great thread, thank you so much for writing down the info @Hip and other contributors.
     
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  6. perchance dreamer

    perchance dreamer Senior Member

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    I take Sinatrol every morning, which has 300 MG of NAC (N-acetyl-cysteine) in combination with other ingredients such as turmeric and thyme. I'm fine with that amount of NAC.

    However, my ENT asked me to try adding additional NAC for its mucous-thinning qualities, and I've realized that additional NAC gives me terrible insomnia. This occurs even when I take 500 MG first thing in the morning.

    This reaction must be so rare, though. NAC helps some people sleep, and I've seen it in relaxation supplements to be taken at night.
     
  7. AliMac64

    AliMac64

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    Thank you @Hip I will start there. This is a great thread and I am very pleased to get such a wealth of lived experience here.
     
    Wally likes this.
  8. bertiedog

    bertiedog Senior Member

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    Haven't read the whole thread yet but found @Hip's first post very interesting and I think it might explain why I have been experiencing this wired but tired state the past month. I used to have it right at the beginning of my illness but it went away with treatment of my adrenals and thyroid which was around 2003.

    However from time to time this wired state appears apparently out of nowhere and it ruins my sleep which had been very good for the past 15 years. I am sure it happened when I was trying various supplements/herbs.

    Since early September I have been taking quite a high dose of hydrolysed collagen protein because I have issues with low collagen (very wrinkly plus a lot of issues with pain in my hip plus shoulders and neck). It is highly absorbable, I believe 90% was mentioned in one article I read. My blood protein level has been below the bottom of the range in my NHS tests for many years btw but it was never mentioned by my GP as an issue.

    However, we all know that its from protein our body repairs plus loads of other stuff I don't remember at the moment due to some brain fog. I know that amino acids are broken down into protein so you will end up getting lots more aminos from the collagen protein powder.

    Having looked up what this powder contains, from Wiki it states -

    Proline 20%
    Glycine 20%
    Glutamic Acid 11%
    Arginine 8%
    Alanine 8%
    The rest is a mixture of some other amigos including Lysine.

    When I weighed the total amount I was taking daily it was around 15g.

    This surely explains my wired symptoms, I would be getting a lot more glutamate which is a probable further problem in my case because I have various SNPs in the GAD enzyme which converts glutamate to GABA.

    It would also explain why recently almost daily migraines have returned . I had succeeded in getting them under control with a protocol to kill off my pathogenic gut bacteria (show up in a recent American Gut Stool Test) and I have also been working on raising my extremely low beneficial bacteria. This protocol had started to work but it looks like I have messed this up a bit because of collagen thing.

    I hope these connections I am making are correct and I will radically cut back on the collagen powder but don't want to stop it altogether because it has given me very good improvements in my hip, shoulders and also skin.

    Pam
     
  9. Hip

    Hip Senior Member

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    It's possible. There are people who claim glutamate / glutamic acid sensitivity, who avoid MSG, as well as the glutamate found in Parmesan cheese and soya sauce, because of a migraine link. In theory the blood-brain barrier should protect the brain from dietary glutamate, but maybe some people have a leaky BBB?
     
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  10. hamsterman

    hamsterman Senior Member

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    I think adrenal and thyroid issues are a huge contribution to the 'wired', and 'hyperaroused' issues. Thyroid issues are more well-known... but adrenal issues can be just as bad. I think most people with ME have some sort of adrenal issues... I think its worth the time for people here to get that checked.
     
    bertiedog likes this.
  11. Lucinda

    Lucinda Senior Member

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    Gosh I used to think it was just me that experienced this. I used to have this to an extreme. It felt like torture.

    Anyhow after years of trying everything I could think of, I was put on clonazepam and it helped me so much. I then put into place other lifestyle changes (Dr Myhill's protocol) and over the years I have experienced this state less and less. Now it is 97% resolved.

    I still take clonazepam. I have taken it for probably about 7 years. I take 3mg a night. I have to say personally I have never grown 'tolerant' of it. It didn't rid me of this problem all by itself, I had to do other things to help my health, but I have never gone back to being the wired/tired way I was.

    I do worry about the fact I have been on the drug for so long though, and what will happen if I try to come off. But I just don't plan on trying to come off until I am a lot healthier than I am now!

    I'd barely heard of all this stuff on this thread otherwise I'd have tried it before trying clonazepam. All of this is still very unfamiliar to me. I know this thing you are talking of is what I had *very* severely, but I never understood why.
     
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  12. hamsterman

    hamsterman Senior Member

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    I would say that it might be a good idea to try the alternatives, but then tapering off that dose of clonezepan would be miserably bad. I wonder if it is possible to taper down to a slightly lower dose... maybe over the course of a few months... and then try to introduce some of the alternative methods.
     
  13. ArunP

    ArunP

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    Hey Lucinda,

    I have tried most of the suggested treatments in this thread. What worked best was transdermal Magnesium, but its actions help only short term and have stopped working as well for me now than when I first started it. So, basically the only that is helping me is Clonazepam. I am on 2mg once in two days (so it translates to 1mg/day). Taking it once in two days has worked best for me but don't know if it is OK to take Clonazepam this way. I'd love to hear someone else's view on this. Taking it at 1mg or 2mg everyday in my case actually had a negative affect on my quality of sleep. So this regimen helps best.

    I have been on Clonazepam for a year now. I did try a higher dose of 2mg/day for about 50 day early this year. It actually made me feel much much better. But I was quite worried about the long term dependence and tolerance issues that I reduced my dose over a month. Right now, I am just taking whatever is necessary to keep me on my feet. So I am not aiming for quality of living. Somehow I think this would give me leverage with the doses when if I do need to increase. I really don't know about this approach, but that is what I am doing right now.

    I went over your posts from 2012 and I am happy to know you've been doing well on the Clonazepam. My personal opinion would be to not stop Clonazepam but if you wish to try some of the treatment options suggested here, try it on top of the Clonazepam. See if you have some incremental benefit. If you do you can then think about tapering down the Clonazepam. But even then I think it should be planned in a way that you go about it over atleast a span of a year.

    I also want to let you know that my issues became very severe after I took 4 sessions of Hyperbaric Oxygen Therapy that had in some studies completely treated CFS in some patients. In my understanding CFS/ME is a very diverse disease. For some stimulation might help but for some like us it can actually be the worst possible thing we can do. Similar to how some doctors recommend exercises, when the case is that is possibly the worst thing that we can do for our healths. I think Myalgic encephalomyelitis more apt name for these host of symptoms we experience- that are so different person to person but share the same triggers and many times symptoms.

    It would also help me to know your experiences using Clonazepam for a prolonged period. Did you have any side effects or did it lose lose efficacy at any point and then get back? Is there any specific regimen that helped you or anything else in general?

    Regards,
    Arun, India.
     
    Last edited: Dec 12, 2017 at 11:12 PM
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