I’ve dropped to severe please help

[xebex]

Last week I dropped to severe or maybe even very severe. I’ve not slept a wink for a week. Half my brain feels alert the other half sleepy. I’m In a hypnogogic state all night and my body shakes and writhes as if in pain but no pain. Muscle relaxers helps but I worried about the gaba glutamate thing. Magnesium glycinate calms it down but how Much can I safely take? I’m taking about 500mg spread out over the day but I need more or the shaking comes back. Please help!
Also is this normal for severe ME?

 

[BrightCandle]

I found severe ME very painful, I had a lot of restless legs/muscles and spasms. I also just had pain from my upper and lower back and leg muscles, a deep soreness of over use. The headaches is what really got me most in terms of pain they were 8-10/10 every day all day. I couldn't eat solid food so my partner blitzed it into a paste for me and I found I could only deal with FODMAP as low histamine and impact on the gut as possible and I still had gut bloating and pain. Its the worst thing to ever happen to me it was horrible and I am glad I am not there now.

I am so sorry this happened to you, I don't know how to help you, I never managed to help myself in any way it just went away. All I can suggest is embrace the boredom, stay as still and relaxed as you can and spend your day clearing your thoughts and hopefully in time it will pass and you'll slowly recover. I think the issue is so little can cause a crash when you have this little energy that its very easy to crash repeatedly but I don't really know how to end it since for me it just sort of started one day and 2 months later I was moderate.

I am sorry you are suffering this much its awful.

 

[Emmarose47]

Hi xebex
I hear you
Last winter I was in bad shape and couldnt sleep ....
I did a lot of pre bed things , hot magnesium bath ( epsom salts ) at least 3 big cups .. pop some essential oils into the salt and it will give a good bath ( instead of oil floating on top of water ... Mag salts will help pain too ... Amazon do large bags / tubs of it for not expensive .
Blue light blocking glasses for screen use I'm the evenings ...
Guided relaxations I find body scan and yoga nidra good .
My friend told me about Promethazine hydrochloride ( anti histamine ) was helping her sleep and 50mg of that did the job ! Also when I'm not on anti dep I don't sleep so well .
I'd say avoid benzos for sleep highly addictive .
Some people get good success with melatonin .
Put in search bar here about sleep lot of exp on it .

Re Mag Gly I take that I'll look at what I'm taking..
.again put in.lsearch bar see what comes up

And about all as hard as it is don't see this as permanent .... Your body needs time , lots of comfort and rest and as much non thinking as poss ....
Trust it will pass .

Everytime I flare I think this is it ....but it always passes even when takes wks

 

[Emmarose47]

With the salts get bath as hot as can .... Soak for AT LEAST 20 mins not using any soaps etc ....

 

[Emmarose47]

 

[vision blue]

When i got my attacks earlier this year, i would start shaking eapecially late at night and during the night. Still not sure what any of it was about but did find out high norepinephrine can cause a person to shake.
Hope some of those sleep aids people suggest above help- not every night to avoid addiction/dependency but at least once to break tge cycle of accumulated sleep debt.
Hope you improve very soon- keep us posted

 

[xebex]

@vision blue Thank you. I see, intersting that others have had the shakes it’s horrendous. Hours and hours of shaking. Doc has prescribed propranolol (for pots) but actually I think it’s helping with the shakes cos it reduces norepinephrine.

 

[xebex]

Hi xebex
I hear you
Last winter I was in bad shape and couldnt sleep ....
I did a lot of pre bed things , hot magnesium bath ( epsom salts ) at least 3 big cups .. pop some essential oils into the salt and it will give a good bath ( instead of oil floating on top of water ... Mag salts will help pain too ... Amazon do large bags / tubs of it for not expensive .
Blue light blocking glasses for screen use I'm the evenings ...
Guided relaxations I find body scan and yoga nidra good .
My friend told me about Promethazine hydrochloride ( anti histamine ) was helping her sleep and 50mg of that did the job ! Also when I'm not on anti dep I don't sleep so well .
I'd say avoid benzos for sleep highly addictive .
Some people get good success with melatonin .
Put in search bar here about sleep lot of exp on it .

Re Mag Gly I take that I'll look at what I'm taking..
.again put in.lsearch bar see what comes up

And about all as hard as it is don't see this as permanent .... Your body needs time , lots of comfort and rest and as much non thinking as poss ....
Trust it will pass .

Everytime I flare I think this is it ....but it always passes even when takes wks

Thank you - I’ve never flared this hard though have actually been quite stable at low moderate for years.

 

[xebex]

I found severe ME very painful, I had a lot of restless legs/muscles and spasms. I also just had pain from my upper and lower back and leg muscles, a deep soreness of over use. The headaches is what really got me most in terms of pain they were 8-10/10 every day all day. I couldn't eat solid food so my partner blitzed it into a paste for me and I found I could only deal with FODMAP as low histamine and impact on the gut as possible and I still had gut bloating and pain. Its the worst thing to ever happen to me it was horrible and I am glad I am not there now.

I am so sorry this happened to you, I don't know how to help you, I never managed to help myself in any way it just went away. All I can suggest is embrace the boredom, stay as still and relaxed as you can and spend your day clearing your thoughts and hopefully in time it will pass and you'll slowly recover. I think the issue is so little can cause a crash when you have this little energy that its very easy to crash repeatedly but I don't really know how to end it since for me it just sort of started one day and 2 months later I was moderate.

I am sorry you are suffering this much its awful.

Thank you it’s encouraging to know you came out of it. It’s utter hell. I have had to send my daughter to in-laws so she doesn’t see me or hear me cos it’s so scary.

 

[Judee]

I actually realized recently that magnesium causes me insomnia though I'm probably the odd one here. I believe I have ADHD paradoxically reactions. However, I thought I would mention it in case it would be contributing to your not being able to sleep.

Again, paradoxically, I did find calcium hydroxyapatite added to my tart cherry helps with sleep.

Also, I get these tremors too and found that small amounts of ginkgo help a lot. I've read that too much of it can cause tachycardia so only take small amounts but I'm so sensitive to things that it works.

Another thing that seems very calming to me is Cordyceps. They're supposed to help with brain inflammation according to this website: https://dailyhealthpost.com/cordyceps-mushroom-brain-booster/

"A 2014 study published in Evidence Based Complimentary and Alternative Medicine showed that Cordyceps supplementation reduced inflammatory markers in the hippocampus of the brain. It also raised up brain-derived neurotrophic growth factor and 5-HTP (precursor to serotonin and norepinephrine levels). These results demonstrated that Cordyceps has positive benefits on mood and memory levels."

 

[xebex]

I actually realized recently that magnesium causes me insomnia though I'm probably the odd one here. I believe I have ADHD paradoxically reactions). However, I thought I would mention it in case it would be contributing to your not being able to sleep.

Again, paradoxically, I did find calcium hydroxyapatite added to my tart cherry helps with sleep.

Also, I get these tremors too and found that small amounts of ginkgo help a lot. I've read that too much of it can cause tachycardia so only take small amounts but I'm so sensitive to things that it works.

Another thing that seems very calming to me is Cordyceps. They're supposed to help with brain inflammation according to this website: https://dailyhealthpost.com/cordyceps-mushroom-brain-booster/

"A 2014 study published in Evidence Based Complimentary and Alternative Medicine showed that Cordyceps supplementation reduced inflammatory markers in the hippocampus of the brain. It also raised up brain-derived neurotrophic growth factor and 5-HTP (precursor to serotonin and norepinephrine levels). These results demonstrated that Cordyceps has positive benefits on mood and memory levels."

Thanks for that, magnesium rarely helps me sleep though recently something has changed even before the crash where it works a bit better. But it does seem to be calming the shaking. Still can’t sleep. interesting about the calcium I’ll check that out.

 

[wabi-sabi]

I get shakes when I am low on fluid and salt. Don't know if that is that case for you, but fairly easy to try. I chug down the normalyte and stay on the heating pad until it passes.

https://normalyte.com/collections/normalyte-pure-collection

 

[Emmarose47]

I have hand tremors in the mornings ...

 

[Emmarose47]

Shaking is what we do when in shock right the nervous system .
So I figure shaking with m.e CFS is the nervous system over reacting ...

 

[woozy]

I actually realized recently that magnesium causes me insomnia though I'm probably the odd one here. I believe I have ADHD paradoxically reactions). However, I thought I would mention it in case it would be contributing to your not being able to sleep.

Again, paradoxically, I did find calcium hydroxyapatite added to my tart cherry helps with sleep.

Also, I get these tremors too and found that small amounts of ginkgo help a lot. I've read that too much of it can cause tachycardia so only take small amounts but I'm so sensitive to things that it works.

Another thing that seems very calming to me is Cordyceps. They're supposed to help with brain inflammation according to this website: https://dailyhealthpost.com/cordyceps-mushroom-brain-booster/

"A 2014 study published in Evidence Based Complimentary and Alternative Medicine showed that Cordyceps supplementation reduced inflammatory markers in the hippocampus of the brain. It also raised up brain-derived neurotrophic growth factor and 5-HTP (precursor to serotonin and norepinephrine levels). These results demonstrated that Cordyceps has positive benefits on mood and memory levels."

I had tremors in June and found out it was low B12. My B12 was 275 so I took 1000mcg B12 each day for a month and the tremors went away.

 

[YippeeKi YOW !!]

Magnesium glycinate calms it down but how Much can I safely take? I’m taking about 500mg spread out over the day but I need more or the shaking comes back. Please help!

I used it for similar issues including excruciating and endless panic attacsk, and I was taking a real boatload of it daily, as much as 2400 mgs (that's based on the cotents of tablet and not elemental mag). I had no adverse effects, no diarrhea (which is why I chose mag gly), none of the less-desirable reactions to magnesium that are frequently mentioned.

The mag in mag-gly is, as the title suggests, bound to glycine, an amino acid, which is a large molecule, meaning that it's digested in the stomach instead of shooting thru your system like greased lightening and stimulating your colon, where it can cause all kinds of distress and unpleasantness.

I'd recommend this ahead of the following recommendations, listed below, due to its lack of extensive damaging side effects, particularly on the brain and neuro-transmitters.

Promethazine hydrochloride

Promethazine is a sedative-hypnotic due to its ability to block dopamine receptors. It also acts on the effects of the hormone serotonin at the 5-HT3 -receptor sites (located in the vagal nerve terminals), which is how it reduces/controls nausea.

Promethazine is a strong tranquilizer that can help reduce nervous tension, but has definite side effects and should probably not be used casually. It's frequently used as a tranquilizer prior to surgery, and extended use can produce paradoxical effects, increasing anxiety, HR, etc/

propranolol

Propranolol is a beta blocker, generally used to treat high blood pressure, irregular heartbeats, shaking (tremors), and other conditions. But it can also cause those, as can most beta-blockers.

Among a host of other side effects (do a quick Google), propranolol can cause mood changes and depression as well as memory problems because of its effects on norepinephrine and epinephrine, which are tied to memory function. It also works on the immune system, increasing the number of T cells in the body.

You shouldn’t take propranolol if you have any of the following conditions, or should only do so under the close observation and care of a physician ....

• Bradycardia (abnormally slow heart rate)
• Asthma (difficulty breathing from constricted airways)
• Uncontrolled heart failure (heart not pumping well)
• Peripheral vascular disease (blocked or spasming blood vessels)
• Diabetes (disease of high blood sugar levels)
• Pheochromocytoma (tumor of adrenal gland tissue)
• Myasthenia gravis (weakened muscles disease)
• Hypotension (low blood pressure)
• POTs, Orthostatic hypotension (low blood pressure that happens when standing from sitting or lying down)

Stopping it suddenly is not advised, it needs to be tapered, since sudden cessation can cause heart attacks and/or severe chest pain.

 

[Emmarose47]

Hi yep I'm taking 2,400mg mag gly
@YippeeKi YOW !! Do u know the diff between elemental mag ? And what in the rest of the contents ?

 

[YippeeKi YOW !!]

Do u know the diff between elemental mag ? And what in the rest of the contents ?

The mag-gly container you posted (which looks like a great choice, by the way) states 240 mg elemental mag, but not the number of caps or tablets that amount's based on. It also states that there are no other ingredients, so I assume the ingredient list should consist of magnesium bound to glycine, plus whatever the capsules are made of, probably gelatin, unless they clearly state vegetarian capsules, usually made of vegetable cellulose or microcrystalline cellulose.

I'm not sure if you're asking about you mag gly or mine. Mine is in pressed tablet form (not th best choice, but what worked for me at that time), 100 mg (that's full weight, not elemental mag), has a small amount of mag oxide, and the usual constituents of a pressed tablet, which will vary from manufacturer to manufacturer. I'm not sure what those are in my tablet and the bottle is downstairs, too tired to drag back down there, then up here to post, then back down again (or I'll be looking for my bottle of mag gly for literally days before I remember where I last saw/had/held it ) .....

Again, not sure what you mean by " .... the diff between elemental mag....". I'm going to assume (which means I'm probably wrong ) you mean between the stated amount and the elemental magnesium amount. Elemental magnesium refers to the actual magnesium contained in a product which, including all the other constituents may be listed as 350 mg but actually only contain anywhere from 15 to 35 mgs of elemental (actual) magnesium. I made those figures up, so don't use them as anything but a useless piece of information, yes?

If there's anything else I can confuse you about, dont hesitate to post back !!!!

 

[hapl808]

I could be wrong here, but this is my understanding.

The 100mg pills are likely much heavier than 100mg if you weigh them. If you have a gram scale, put ten of them on it and you'll see it weighs a lot more than one gram. Likely the individual weight of a tablet is closer to 1g, so you're getting 100mg of elemental magnesium from a 1g tablet.

Since different manufacturers label things differently, it can get quite confusing. If it just says magnesium, then that should usually be the amount of elemental magnesium. If it says magnesium glycinate, then you may be looking at the overall weight. But often it says magnesium from magnesium xxx and that can be hard to decipher.

Usually the amount of actual magnesium is listed somewhere. How what it's bound to affects absorption is another issue I think.

 

[Mary]

Magnesium glycinate calms it down but how Much can I safely take? I’m taking about 500mg spread out over the day but I need more or the shaking comes back.

I take 800 mg mag glycinate with no problem - 100 mg with breakfast and lunch, 200 mg with dinner, 200 mg before bed and 200 mg middle of the night. And as you can see above, at one time @YippeeKi YOW !! took a lot more than this. Magnesium is extremely important for sleep so perhaps increasing your magnesium might help you sleep as well as stop the shaking.

I feel for you! I recently went through a very bad patch where I had 4 nights of almost no sleep, 1 - 2 hours max, and I finally figured out that it seemed to be related to my thyroid. Generally I'm hypothyroid and have been on desiccated thyroid for over 20 years, but my body temp had gone up, hair falling out (!), lost a few pounds without any effort and of course almost no sleep. I stopped my NP thyroid, and started taking Herb Pharm Thyroid Calming and Bugleweed and after a few days started sleeping again - whew! I'm getting my thyroid tested this week, but I had to do something quickly and so glad I did.

So if magnesium helps you, I'd increase the dose a bit and see what happens. I hope you get some relief soon!