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

[ArunP]

@Hip Thanks for the detailed reply.

Turmeric is a mainstay in Indian cuisine, on top of that I'm taking a teaspoon of it everyday with my rasam (Indian lentil soup). I'll be adding flaxseed oil to my routine soon.

I've experimented with nmda receptor antagonist. An American doctor had earlier suggested dextromethorphan 3*30 mg a day. I tried it some weeks back. And also a single large dose at 150mg. But I didn't like the immediate stimulative effects it produces. Is there something that works purely as an nmda antagonist like how the clonazepam is a pure Gaba medicine without any other actions. Memantine too didn't feel too good, although I took it at a very small dose (1-2mg). From what I read dextromethorphan, memantine and Ketamine all have other effects, like on dopamine, serotonin, etc. How does riluzole work? Will it help. Medicines are very cheap here in India. Like 1/10-1/5 of the price in the USA. So cost shouldn't be an issue.

I was quite ok until six months or so back when I tried Hyperbaric oxygen therapy (http://forums.phoenixrising.me/index.php?threads/my-negative-experience-with-hbot.49082/). I had three sessions and it acted like a stimulant and completely threw my brain off. I've read Dr. Cheney's interview about clonazepam and I can fully relate. I feel like I'm somewhere between normal and seizures during the day.. Moving towards the seizure side of things as the day passes and normal during sleep.

Clonazepam works great but I'm building tolerance fast and I have some physical symptoms too that I don't want to put through withdrawal. I've reduced my dosage a bit but can't get off it even though I've been on it only 3-4 months at 1.5 mg.. Now I'm taking 1.5 mg every other day.

Any ways I have ordered the Kava Kava powder from the USA. Hopefully it should help.

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.

Regards,
Arun.

 

[Jenny TipsforME]

I think kava root (Piper methysticum) may be one of the best ways of boosting the GABA system

Do you get muscle weakness with kava kava? It's mentioned here https://www.drugs.com/npp/kava.html
I wouldn't want to take for this reason.

 

[Hip]

Do you get muscle weakness with kava kava?

I have not noticed any such thing at the doses of kava kava root I am taking (300 mg usually, sometimes up to 500 mg).

Kava is a very interesting herb in that it relaxes the nervous activity in the spinal cord as well as the brain, and for this reason is also used for pain relief, presumably because it helps calm the pain signals traveling through the spinal cord.

This is also I believe the reason why when you take kava kava, you are relaxed but remain mentally sharp: because a lot of kava's relaxing effects are mediated via its action on the spinal cord, leaving the brain still quite focused.

 

[btdt]

@Hip I am liking the sounds of the kava kava I am taking or have taken many of the things suggested on this page some are new to me. I would like to know what kava kava your taking? I feel my spine is involved in my experience as I often feel the jerking in my spine it can be spine head or limb. Head would really be neck I guess which is spine... I hate brain fog or anything that affects my thinking it is bad enough I can't risk it.
I might risk kava kava.
If you don't want to put the brain you use on the board please pm me. I don't want to waste my money on one that is useless. There are so many links on this page to read it may be some time before I get thru it all but the kava kava sounds like a good bet.
Thank you for all your hard work and for posting the link to this page.

 

[Oci]

@Hip I am liking the sounds of the kava kava I am taking or have taken many of the things suggested on this page some are new to me. I would like to know what kava kava your taking? I feel my spine is involved in my experience as I often feel the jerking in my spine it can be spine head or limb. Head would really be neck I guess which is spine... I hate brain fog or anything that affects my thinking it is bad enough I can't risk it.
I might risk kava kava.
If you don't want to put the brain you use on the board please pm me. I don't want to waste my money on one that is useless. There are so many links on this page to read it may be some time before I get thru it all but the kava kava sounds like a good bet.
Thank you for all your hard work and for posting the link to this page.

@Hip I am liking the sounds of the kava kava I am taking or have taken many of the things suggested on this page some are new to me. I would like to know what kava kava your taking? I feel my spine is involved in my experience as I often feel the jerking in my spine it can be spine head or limb. Head would really be neck I guess which is spine... I hate brain fog or anything that affects my thinking it is bad enough I can't risk it.
I might risk kava kava.
If you don't want to put the brain you use on the board please pm me. I don't want to waste my money on one that is useless. There are so many links on this page to read it may be some time before I get thru it all but the kava kava sounds like a good bet.
Thank you for all your hard work and for posting the link to this page.

Be very very careful with Kava Kava. It is very addictive and very hard to get off of. Much like a benzo.

 

[btdt]

Ok thanks Oci too good to be true like most things... it is scrapped... I could be addicted to much better things should I choose to be an addict.

 

[Hip]

@btdt I bought some kava kava root powder on the UK eBay, and there was no particular brand name, as it was from a small supplier. I take around 300 mg to 500 mg of this powder as my dose. Kava is known to primarily relax the spine, and this I believe is why it has calming, anti-anxiety effects, yet does not make you feel drowsy or sedated like benzodiazepines can.

Be very very careful with Kava Kava. It is very addictive and very hard to get off of. Much like a benzo.

I have never heard of addiction or tolerance problems with kava. Where did you read that kava is addictive? Maybe you were thinking of the supplement phenibut, which is known to be as addictive as benzodiazepines.

Kava may actually have a beneficial reverse tolerance profile, as kava may increase GABA receptor numbers (ref: 1). That would mean that over time, the number of GABA receptors will build up the longer you use kava, thereby providing a calming, relaxing effect that will maintain itself for some time even when you stop taking kava. That's the very opposite of a tolerance build up and addiction.

By contrast, benzodiazepines decrease GABA receptor numbers and decrease GABA sensitivity over time, thus leading to the well-known benzodiazepine problems of tolerance, addiction and withdrawal (ref: 1).

 

[btdt]

I took another look at Kava the lure of spine easing I will admit is hard to resist... but I have a liver problem already there is some uncertainty about liver safety.
I also found this
The kavalactones are primarily metabolized by the cytochrome P450 isozyme 2D6. Other drugs that are metabolized by the CYP 2D6 isozyme may interfere with the metabolism of kava-kava leading to possibly detrimental effects. ..................

I am not positive but I think that is one of the issues I have with drug metabolism on my genetic testing...
best I leave it alone till I at least understand my own genes.. at least that.
Thanks for the information

not a science link but a site I trust info can be found here
http://survivingantidepressants.org/index.php?/topic/653-kava-kava-piper-methysticum/?hl=kava

 

[Mary]

@ArunP, @Hip - I've been dealing with severe insomnia related to lorazepam withdrawal for several months. I was trying to increase GABA but things that had helped me in the past like l-theanine were no longer working. Glycine, another calming neurotransmitter, was no longer effective either. Then I read that glycine and l-theanine could both be converted to glutamate. And niacin which had helped me at one time suddenly didn't seem to do much.

Anyways, I was getting at my wits' end. I'd tried trazodone and baclofen (not together) and hated them both, they left me drugged and tired and didn't do much for sleep.

And then I came across this thread: http://forums.phoenixrising.me/inde...amate-from-brain-with-got-oxaloacetate.32655/ and also another article, which I can't find right now, but anyways decided to change my focus from increasing GABA to blocking or reducing glutamate, thanks to Hip and a few other people. I also for the first time came across the concept that calcium could be making things worse (!)

The thread I linked above talks about calcium pyruvate being a blood glutamate scavenger. So I got some calcium pyruvate and have had 5 good nights sleep now .... sleeping even better than I was while taking Lorazepam. I was taking 1 mg. of lorazepan middle of the night for sleep, a relatively low dose but had been taking it for 10 years. I've been off the lorazepam for about 2 months now, after a very slow taper.

It feels too good to be true, to finally be sleeping, but so far so good! The other night I had a protein bar for dinner (which I don't usually do) and ended up being awake for 5 or 6 hours middle of the night (most of the night). Turns out it had "natural flavors" (MSG), the last thing I expected in a protein bar. Anyways, I will now look at everything I eat at night very carefully.

This is the calcium pyruvate I've been taking: https://www.iherb.com/pr/Now-Foods-Pyruvate-1200-mg-100-Capsules/67385 - it's actually on sale right now so a good time to try it. about 11 years ago calcium pyruvate gave me a noticeable increase in energy for 3 or 4 days, but then stopped, hopefully it will keep helping with sleep --

I'm also taking Relora, inositol, 5-htp and extra magnesium, ornithine, and niacin (the niacin seems to be effective again) and I have cut out (temporarily) my calcium supplement - will see if I start craving milk! I did try Kava Kava several times, to no avail

@Hip - I'm stopping my calcium supplement because I read that it can increase glutamate in the brain - but I'm wondering why calcium pyruvate does not do the same thing, as it has calcium too - do you know why? Also, do you know if calcium pyruvate could help compensate for the calcium I'm not taking?

 

[Hip]

@Mary
The calcium pyruvate molecule is mostly pyruvate by weight: 1000 mg of calcium pyruvate would contain 840 mg pyruvate, and 160 mg calcium. So you will not be getting that much calcium from it.

 

[perchance dreamer]

I'm finding that CBD oil extract in the evening relaxes me and helps me sleep. It's also gotten rid of my remaining IBS. Here's the brand I use, on the recommendation of my doctor. I use the 10 MG (green label) dosage. It also comes in 15 MG.

https://pluscbdoil.com/cbd-products/cbd-oil-capsules/pluscbd-oil-capsules/

 

[Prefect]

I'm finding that CBD oil extract in the evening relaxes me and helps me sleep. It's also gotten rid of my remaining IBS. Here's the brand I use, on the recommendation of my doctor. I use the 10 MG (green label) dosage. It also comes in 15 MG.

I've been very curious about CBD oil because of stuff I've ready about the involvement of the endocannabinoid system in many "functional" disorders. But I've been too scared to try it because in my youth (when I wasn't sick) the 4 times I tried cannabis it turned me into a basket case and made me severely anxious and agitated. THC does not mix well with me. Does CBD oild have any THC?

 

[perchance dreamer]

@Prefect, CBD oil has only a trace amount of THC, so it does not get you high. I had thought it was legal in every state, but now I'm not sure.

It must legal in Texas, where I live, because it's sold in several integrative pharmacies in town. My doctor recommended it to me, and he'd get in trouble if it were illegal here.

Oh, never mind. I see you live in Canada (lucky dog!). I seem to remember that pot has just become legal there, so I'm sure CBD oil would be.

I've read that CBD oil in small doses can be activating, but in larger doses, such as the 10 MG I take, it's relaxing for most people.

 

[eljefe19]

@Hip I'm trying Riluzole soon. I just realized though that the 50mg tablets I bought (which were not cheap) are three times less than the dose used in the studies. What do you think I should do?

 

[Hip]

@Hip I'm trying Riluzole soon. I just realized though that the 50mg tablets I bought (which were not cheap) are three times less than the dose used in the studies. What do you think I should do?

Not sure, but you might find the follow comment of interest, which I copied from the Internet a few years ago: it explains that riluzole (Rilutek) takes many weeks to kick in:

Rilutek success

Posted by mogger on August 10, 2009, at 21:00:15

Just wanted to share a very positive experience I have had with 100 mg Rilutek for ocd/gad/depression. I have noticed a massive decrease in anxiety and thus my mood has been uplifted significantly. I have a problem getting anxious traveling and it is helping so much. My mind has calmed down considerably without brain fog or confusion. I have only had minor sedation to complain of which is getting better. I should note though that it took a while to kick in, about five and half weeks to be exact.

I noticed in article that they predicted Rilutek would not be a blockbuster success due to it's lengthy onset of action. They proposed using ketamine until rilutek kicked in. I am glad that I have stuck with it as after a couple of weeks of not feeling anything I almost threw in the towel. Here is an interesting article on ketamine that mentions rilutek.

 

[eljefe19]

@Hip Any idea if that's the length of time it took for it's effect on GLT-1? Also any idea if 50mg has an effect on GLT-1?

 

[eljefe19]

@Hip Also what's up with 2000mg dose of Citicoline?? The highest I found on amazon was 500mg.

 

[Hip]

@Hip Any idea if that's the length of time it took for it's effect on GLT-1? Also any idea if 50mg has an effect on GLT-1?

I don't know. Riluzole has multiple mechanisms of action anyway.

@Hip Also what's up with 2000mg dose of Citicoline?? The highest I found on amazon was 500mg.

Do you mean the 2000 mg dose I stated in this other thread? That looks like a mistake (it's actually meant to be 2000 mg per kg for rats), but I have corrected it now. The equivalent oral human dose is works out to around 26 grams, far too high to make citicoline viable as a GLT-1 booster.

 

[btdt]

@Prefect, CBD oil has only a trace amount of THC, so it does not get you high. I had thought it was legal in every state, but now I'm not sure.

It must legal in Texas, where I live, because it's sold in several integrative pharmacies in town. My doctor recommended it to me, and he'd get in trouble if it were illegal here.

Oh, never mind. I see you live in Canada (lucky dog!). I seem to remember that pot has just become legal there, so I'm sure CBD oil would be.

I've read that CBD oil in small doses can be activating, but in larger doses, such as the 10 MG I take, it's relaxing for most people.

I live in Canada too.. the guy next door has medical pot and smokes it constantly... I have multiple chemical sensitivity and I can no longer have my window open in the summer (unless I want to sleep wearing a gas mask) or be outside most of the time. He has plenty of friends who come and partake in the pot. So living in Canada is not such a good thing for all of us.
Pot makes me sick I can't stand the smell of it and can't walk if I can't escape it quickly there will be no escape unless somebody wants to carry me.

I know one in a million people will react badly to pot.. well I happen to be the one and am not happy that soon many more places will have pot smoking... for me it just means more places I cannot go... ok don't my rant.
and I am so bugged I made a disparaging remark about Canada....I could feel my ww2 father turning over in his grave and had to erase it...
I am really a patriot.. usually.

now I am done.

 

[perchance dreamer]

@btdt, that's terrible you have to be around all that pot smoke when it makes you sick. These days I'm surprised anyone who partakes regularly these days would smoke it and risk lung damage when they could use another delivery system such as vaping or edibles.

Have you tried talking to your neighbor about it? I can imagine it might be hard to do, but a lot of people don't really understand MCS until you explain.

Pot smoke doesn't bother me, but fragrances just slay me. I often have to explain that it doesn't matter if a fragrance is all natural, organic, or even blessed by the Buddha. It will still trigger me.

What I meant about Canada is that in many ways its values align more with mine than those of the U.S., especially at the moment.

I do envy that pot will be legal nationwide in Canada. The U.S. is making progress, but I live in a state where pot is illegal under all circumstances. When I was in Seattle, I found a low-dose THC mint that helped me immensely for pain.

You might be interested in this thread, which discusses pot and the various delivery systems. I mention CBD oil. At the time, it did not help me, but it does help me now.

http://forums.phoenixrising.me/inde...al-benefits-and-buying-from-dispensary.45502/