Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

[btdt]

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.

 

[heyitisjustin]

@Hip

For others who are following this thread, I've tried GABA supplements and they only made me feel worse. I felt all tingly for the first few hours and then worse. So, looks like GABA supplements are not of much use.

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.

 

[AliMac64]

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?

 

[Hip]

Hi @AliMac64
The trick is to find something that works for you. You could start by trying N-acetyl-glucosamine or N-acetyl-cysteine.

 

[Mary Poppins]

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

 

[perchance dreamer]

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.

 

[AliMac64]

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.

 

[bertiedog]

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

 

[Hip]

I hope these connections I am making are correct

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?

 

[hamsterman]

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.
Pam

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.

 

[Lucinda]

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.

 

[hamsterman]

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.

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.

 

[ArunP]

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.

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.

 

[Wayne]

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?

Hi @ArunP,

I took clonazepam for over ten years, and noticed that my feeling of waking up with a "hangover" became more pronounced over time. I've also read that studies show long-term use of benzodiazapines increases the risk of developing dementia and/or other brain disorders.

It was fairly difficult for me to wean myself off of it, but managed to do it over a one-year + time period. The hardest part was the very last tiny bit of it I was taking. A few months after quitting it completely, I discovered micro-current therapy, and was able to get past the on edge feeling I was still experiencing. I wish I had discovered it sooner, as I believe it would have helped me wean off of clonazepam, and quite possibly would have been effective enough to not have to get on it to begin with.

I've posted a fair amount on my experiences with this micro-current therapy. If you do a search for alpha-stim under my username, you'll get a listing of all the posts where I mentioned it. It will also take you to a number of other informative threads/posts on clonazepam. THIS PARTICULAR POST gives a pretty good description of some of my experiences.

Best, Wayne

 

[ArunP]

Hi @ArunP,

I took clonazepam for over ten years, and noticed that my feeling of waking up with a "hangover" became more pronounced over time. I've also read that studies show long-term use of benzodiazapines increases the risk of developing dementia and/or other brain disorders.

It was fairly difficult for me to wean myself off of it, but managed to do it over a one-year + time period. The hardest part was the very last tiny bit of it I was taking. A few months after quitting it completely, I discovered micro-current therapy, and was able to get past the on edge feeling I was still experiencing. I wish I had discovered it sooner, as I believe it would have helped me wean off of clonazepam, and quite possibly would have been effective enough to not have to get on it to begin with.

I've posted a fair amount on my experiences with this micro-current therapy. If you do a search for alpha-stim under my username, you'll get a listing of all the posts where I mentioned it. It will also take you to a number of other informative threads/posts on clonazepam. THIS PARTICULAR POST gives a pretty good description of some of my experiences.

Best, Wayne

Thanks for the information, Wayne.

I am very interested in the alpha-stim therapy but I dont know how I can get a device here in India. I will read more about it. I also read that you benefited from Earthing. I've tried earthing multiple times and its strange- the effects I get from it. The immediate effects are positive and I feel calm and relaxed and actually feel like it had helped with the Wired feeling. But it always ends up making feel worse after 2-3 hours. Then it turns out to be of more harm than good. I've had the same experience with the Probiotic tablet - Miyarisan. It works wonderfully well at first. For the first few hours then it ends up making me feel worse for the proceeding 2-3 days. I've found that nothing really helps except the Clonazepam for me. High quality transdermal Magnesium used to work well for me until 3 months back when it lost its efficacy.

The problem is I have so many layers to my disease, like most people here. In my opinion I have two major issues which are more less linked to my general well being - Dystonia and ME related symptoms. Dystonia includes my speaking, swallowing, breathing and blinking (blepharospasms) problems. ME is more of this thing that's always present but in a mild way made worse by any kind of exertion. Somehow there is some issue with the Vagus nerve too. I'm unable to do any work and rest all day. And only this seems to help. But in general, all my symptoms have one thing in common - they are made worse by any sort of exertion.

I do more reading on the Alpha-stim and see if I can try it. You can try the Miyarisan probiotics if you already haven't, maybe it will help you more than it did me.

About the Clonazepam, I am taking only what I need to to get by. And I dont really have a choice, after a treatment I tried completely went the opposite way ( http://forums.phoenixrising.me/index.php?threads/my-negative-experience-with-hbot.49082/ ). I am especially cautious since I have dystonia. I've read many accounts of people with different types of dystonia develop a quick tolerance to it and get incremental benefit only when the dose is increased making it a vicious cycle. That could end very very badly especially since the muscles start to depend on it. I am quite worried to be honest. I dont know how much time I am buying with the Clonazepam but I hope something comes by, by then.

Regards,
Arun.

 

[lizw118]

Hi everyone, I haven't posted on here for a while. I had a great response to NAG when I first took it, and miraculously it helped my sinus issues, particularly the swollen and tender eyebrow area, too. I wanted to post because the NAG lost a bit of effectiveness and I was concerned it would make my Lyme disease worse, so I put some in a neti pot and used it directly in my sinuses. That turned out to be a big mistake, in that it gave me a terrible recurring sinus infection which was accompanied by some very severe anxiety and depression. One of my sinus bones actually grew outward because of the swelling. Now anytime I try and take NAG I start getting those symptoms again. So I wanted to warn people not to take NAG straight into the sinuses. Also, has anyone else had this issue?

 

[tabbyj29_11]

So basically things like addressing digestive issues-improving that with things like pre/pro biotics, more of an anti inflammatory diet, lavender oil use to relax(via smell or on the skin I guess), magnesium but not too much supps orally-try to also have some externally aswell are all things to help with reducing sensory overloads as much. And it looks like omega 3 aswell. I am still learning about more technical health talk, but I can understand that much and it looks like alot of helpful advice.

 

[Lucinda]

I'm on day 2 of trying NAG. I plan to then bring in turmeric and then flaxseed oil. I'll try and remember to feed back as to whether I find these helpful! x

 

[Lucinda]

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.

Thanks for the heads up about Hyperbaric Oxygen Therapy. I've long known that anything stimulating makes me so much worse, so it is good to know that that is a stimulating therapy. I feel like my nervous system is always overstimulated. I actually have constantly blown pupils which shows how out of whack things are.

It is hard for me to comment on long term side effects of clonazepam as when I have looked up long term side effects they are largely the same as ME symptoms! So to be honest, I really do not know which side effects I get. The only thing I noticed after being on clonazepam for a while which I had not noticed before being on clonazepam was that my libido lowered and lowered. Oh, and I can't really tolerate alcohol on clonazepam but you're not supposed to have clonazepam and alcohol anyhow!

As for efficacy - Clonazepam was at its most powerful when I first took it (first few weeks), then started to become less powerful but it still did/does the main job.

So, I'll try and summarise my experience:

First few weeks of taking clonazepam - Agitation/wiredness gone. Utterly calm. No stress or anxiety. Basically slept and rested all the time. Stimulus sensitivities, esp noise, improved hugely. Was able to bring my sleeping pattern forward and slept A LOT.

This was awesome and such a relief after years of insomnia caused by the wired state.

Then clonazepam gradually eased into its second stage, and it still works this way - Agitation/wiredness massively reduced from before taking the drug. No longer utterly calm or devoid of stress or anxiety, but that is fine as without the extreme wiredness I can manage this myself. No longer sleep and rested all the time, but able to sleep on average 9 hours without fail every day and able to rest when needed. Stimulus sensitivities still reduced. Have not gone 24 hours without sleep in 8 years. No longer able to use the drug to bring my sleeping pattern forward.

So I am still happy with the effects. I would say if anyone is thinking it will help with stress and anxiety in the long term - it won't. If anyone thinks it will bring your sleeping pattern forward in the long term - it probably won't. But if you are taking it for this wired state which is causing insomnia and other problems, well in my experience it works long term for that. But hey, everyone is different.

As for what else has helped me? Dr Myhill's protocol. To be specific her guidance on pacing, supplements, Stone Age Diet (though I have become less strict with that) and general advice from her.

Also avoiding anything that is stimulating - caffeine, music, busy places, anything exciting or stressful, managing my emotions (becoming upset, angry, etc sets me back) all helps. I initially had to be very very strict. I basically stayed in a dark silent room and my only hobby was bird watching in the garden so long as nobody was making noise outside. But over time I have been able to increase my tolerance. Now I can have 1 - 2 caffeinated green teas a day. I can sometimes listen to music. I sometimes go to busy places (I often have to use a wheelchair though as I am a moderate to severe sufferer). But I have to listen to my body and step back and stop if I get over stimulated again.

Hope this helps.

I also think it is helpful to find stuff in life you enjoy! Excitement is a danger zone, so it is best to find things that are enjoyable without the flavour of excitement. I have got into Buddhism and that brings meaning to my life (not saying other people should adopt a religion; just giving an example), I love bird watching, I love solitary retreats, I love photography, I love listening to audio books and reading poetry. It is important with this illness to do whatever you can to make life enjoyable. At least to some degree. This was very hard before I was on clonazepam, but I do find enjoyment in my life now.

 

[pattismith]

Idebenone inhibition of glutamate release from rat cerebral cortex nerve endings by suppression of voltage-dependent calcium influx and protein kinase A.
2011

Abstract
The present study was aimed at investigating the effect and the possible mechanism of idebenone on endogenous glutamate release in nerve terminals of rat cerebral cortex (synaptosomes).

Idebenone inhibited the release of glutamate that was evoked by exposing synaptosomes to the K(+) channel blocker 4-aminopyridine (4-AP), and this phenomenon was concentration dependent. Inhibition of glutamate release by idebenone was prevented by chelating extracellular Ca(2+), or by the vesicular transporter inhibitor bafilomycin A1, but was insensitive to DL-threo-beta-benzyl-oxyaspartate, a glutamate transporter inhibitor. Idebenone decreased the depolarization-induced increase in the cytosolic free Ca(2+) concentration ([Ca(2+)](C)),whereas it did not alter the resting synaptosomal membrane potential or 4-AP-mediated depolarization.

The inhibitory effect of idebenone on evoked glutamate release was prevented by blocking the Ca(v)2.2 (N-type) and Ca(v)2.1 (P/Q-type) channels, but not by blocking intracellular Ca(2+) release or Na(+)/Ca(2+) exchange.

Furthermore, the idebenone effect on 4-AP-evoked Ca(2+) influx and glutamate release was completely abolished by the protein kinase A (PKA) inhibitors, H89 and KT5720.

On the basis of these results, it was concluded that idebenone inhibits glutamate release from rat cortical synaptosomes and this effect is linked to a decrease in [Ca(2+)](C) contributed by Ca(2+) entry through presynaptic voltage-dependent Ca(2+) channels and to the suppression of PKA signaling cascade.