I’ve dropped to severe please help

[YippeeKi YOW !!]

@Emmarose47

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

I agree. It's hard to overdose on magnesium in any form except for citrate and oxide, which will cause intense diarrhea long before you take too much.

Magnesium is essential to so many enzyme conversions and other functions in your body that it's more likely that you could potentially be deficient in it, particularly if you take Vit D, which relies on large amounts of magnesium for it's absorption and utilization, and sucks it out of anyplace it can get it including your bones and teeth if there isn't a decent supply to hand.

So supplementing with magnesium in whatever form seems to work best for you (for me, it's been mag glycinate for the last 3-4 years) is a good idea under any circumstances.

A decent estimate of the potential elemental mag in 100 mg of mag-gly is about 14 mgs, and magnesium glycinate is one of the most easily absorbed forms with the lowest potential for either stomach or colon distress, if any. As @Mary noted, I've taken large amounts of it with no ill effects. It was a real life-saver for me ....

Keep in mind tht magnesium and calcium compete for absorption, along with zinc and copper, and they should be separated in terms of time. Things do get complicated, but I keep it as simple as I can by taking mag-gly in smallish doses throughout the day, stopping about an hour before a meal, after which I take my multi and either copper or zinc.

Damn. Now I'm confused ....

A poster whose name I cant remember (forgive me .... just know that I took your advice to heart and am grateful to you for it) said that copper could sometimes interfere with sleep, esp in large amounts, so I take copper with my earlier meal and zinc with the later one. Sleep is sacred !!!! Anything that interferes with it must be dealt with severely.

I recently went through a very bad patch where I had 4 nights of almost no sleep, 1 - 2 hours max,

Absolutely HELLISH ..... In fact, there should be a large banner draped over nights like that, that says 'WELCOME TO HELL, MWAAAAAAA HAHAHAHAHAHA (insert creepy laugh here)

 

[Mary]

Sleep is sacred !!!! Anything that interferes with it must be dealt with severely.

Yes!!!

Absolutely HELLISH ..... In fact, there should be a large banner draped over nights like that, that says 'WELCOME TO HELL, MWAAAAAAA HAHAHAHAHAHA (insert creepy laugh here)

I kept thinking of how sleep deprivation has been used as a torture . . . it's diabolical!

 

[xebex]

Thanks everyone the mag seems to be helping more and more too which is weird, I really notice it’s affects now is that Cos I have more mag In My system? Am a little worried I’m getting over sensitive to it the sensation is almost like I’m stoned. @YippeeKi YOW !! Thoughts?

also if propanalol works on T cells would that be good for ME?

I’m super scared that this is a permanent drop in function my 8yr old daughter is having to live with inlaws

 

[YippeeKi YOW !!]

Am a little worried I’m getting over sensitive to it the sensation is almost like I’m stoned. @YippeeKi YOW !! Thoughts?

Its hard for me to guess at this, all I can do is tell you that I dont recall ever having that sensation, altho the release from the constant, grinding panic attacks, once it started, left me almost giddy with relief.

But I cant say that I felt stoned ... magnesium does act on your neuro-transmitters in several roundabout ways, blocking the NMDA receptor, which also blocks glutamate, which is potentially damaging in excess, or uncontrolled by GABA and can be responsible for severe anxiety, muscle issues, and dis-ease among other things ....

Magnesium also stimulates GABA receptors in the brain, which is more or less (probably less, this is a real oversimplification and the best I'm capable of right now) how benzos work, altho in a somewhat different way. Magnesium is one of the great relaxers, putting the brakes on the excessive brain activity often caused by excess glutamate, and in a system that's been under attack, it's possible that that relaxing sensation could be mistaken for a sort of pleasant buzz.

Magnesium should not be harmful to your system generally, tho not being a medical professional or knowing much about you it's hard to say. In my experience, both personally and thru the journey of others, that hasn't been the case.

also if propanalol works on T cells would that be good for ME?

OK, here's just about everything I can dredge up right now about T-cells. They form the center around which your acquired immune system revolves, like planets around the sun, and our adaptive immune system provides highly specific and enduring protection against any bacteria, virus, or other microbes with which we come in contact, an which we've experienced before (hence "adaptive").

They coordinate and marshal the immune system's response to invading pathogens, round 'em up, and boot 'em out ....

So generally, I think it certainly wouldn't be a bad thing, but I don't know that it would deeply affect your ME one way or the other. It'll just keep you from falling prey to whatever's floating thru at the time...

I hope this helps .... I know there's more, but this is the best I can do right now. Really dragged out ....

 

[YippeeKi YOW !!]

I kept thinking of how sleep deprivation has been used as a torture . . . it's diabolical!

It may not be the worst thing that ME can serve up, but it's right up there in the top 5. You're right .... it's diabolical and debilitatig and it sucks any hope for joy right out thru the soles of your feet ....

I’m super scared that this is a permanent drop in function my 8yr old daughter is having to live with inlaws

I've had several downward spikes, where I absolutely know that any improvements I've made, any changes Ive effected in the way ME eats into me and what's left of my life, all of that is gone, gone, gone for.... like..... EVER.

And then, little by little, things change and shift again, and I gradually return to my base.

And I know I'm not alone in this, I've read of others in these threads going thru the same thing.

So dont despair. Keep plodding around for information, read the threads, ask questions, know that this is just a little hitch in your git-along, and with any luck you'll find your way back to where you were when this sudden down draft hit you. It's one of the hardest lessons to remember when the stuff hits the thing, and I forget, and every time that it happens it's like OMIGOD OMIGOD OMIGOD .....

There's help in these threads, and you'll find it ..... Don't give up, dont give out, DONT GIVE IN !!!!!!

 

[xebex]

It may not be the worst thing that ME can serve up, but it's right up there in the top 5. You're right .... it's diabolical and debilitatig and it sucks any hope for joy right out thru the soles of your feet ....

I've had several downward spikes, where I absolutely know that any improvements I've made, any changes Ive effected in the way ME eats into me and what's left of my life, all of that is gone, gone, gone for.... like..... EVER.

And then, little by little, things change and shift again, and I gradually return to my base.

And I know I'm not alone in this, I've read of others in these threads going thru the same thing.

So dont despair. Keep plodding around for information, read the threads, ask questions, know that this is just a little hitch in your git-along, and with any luck you'll find your way back to where you were when this sudden down draft hit you. It's one of the hardest lessons to remember when the stuff hits the thing, and I forget, and every time that it happens it's like OMIGOD OMIGOD OMIGOD .....

There's help in these threads, and you'll find it ..... Don't give up, dont give out, DONT GIVE IN !!!!!!

Thank you. Yes this thread is atleast giving me some hope!

i was hoping the propranolol would be helpful because my standing HR is crazy high and is not being helped by conservative pots treatments. I tried it and it helps with the shakes and HR but after the third pill it gave me a tremor which thankfully has gone now but not I’m not inclined to continue now. Or atleast just take it as needed!

 

[Emmarose47]

@YippeeKi YOW !! Thanks ! U v knowledgeable
To let @xebex know a serving of the brand I take is 4x tabs = 240mg ...

 

[Emmarose47]

EVERY time I downward I think ' this is it forever .... And thank u God I come back to back line ... Although not after end of last summer when I went swimming and dancing imagine ! That was after my ' it's all in the mind experiment ... Umm yes we can see how that went ! Hosuebound ....
Still there is always hope.

I also have amnesia when it comes to actually being symptomatic when it's not full full on like bedbound . I live in this weird quandary of doubting it's the m.e / CFS symptoms and I'm ' just normal fatigued . Until I'm not then I realise it was the syndrome .

 

[YippeeKi YOW !!]

i was hoping the propranolol would be helpful because my standing HR is crazy high and is not being helped by conservative pots treatments. I tried it and it helps with the shakes and HR but after the third pill it gave me a tremor which thankfully has gone now but not I’m not inclined to continue now. Or atleast just take it as needed!

Some of your symptoms, several in fact, sound a lot like hypoglycemia, or low blood sugar, which I've had attacks of off an on for several years. Not diabetic, not overweight, just slip into hypoglycemia if I'm not alert to the first signs .... do a quic Google and see what you think ....

 

[xebex]

@YippeeKi YOW !! yea I do get the shakes with hypoglycaemia but these shakes were Intense like what you’d see from someone with shell shock and I was writhing around in my bed couldn’t stop moving.

 

[hapl808]

@YippeeKi YOW !! yea I do get the shakes with hypoglycaemia but these shakes were Intense like what you’d see from someone with shell shock and I was writhing around in my bed couldn’t stop moving.

I get this very occasionally (like maybe once every year or two these days). I believe it's called a dystonic reaction. Usually it happens in response to medication, but I get it when I'm not taking any RX medication. Not sure the cause, but it certainly seems more likely to occur when I'm in a bit of a crash. Something like benadryl can help calm the reaction, so possibly there's an allergic component.

There are also things like serotonin syndrome that can cause similar looking reactions, but I think it's unlikely to experience that unless you are taking various substances that might raise your serotonin levels.

 

[xebex]

Yes possible dystonia but also adrenal. I’m very very stressed at the moment and I think my body just can’t control its adrenaline response. The beta blocker helped but side effects are concerning.

 

[Atlas]

I get the shaking with a feeling like I'm pumped on adrenaline when I overexert. It got particularly bad and more frequent at my lowest point, less than 2 minutes of relaxed talking would trigger it for hours.


The only thing that calmed it down was long periods of "aggressive" rest.

And particularly long periods of cognitive rest in complete silence.

Let your brain wander if it wants to but in my experience if you want to get out of that hole you need to embrace complete boredom of not doing any mental activity. For me I child locked my phone and just stared out the window and prayed and stared at the sky and clouds for like 6 weeks and let my mind go. After about 10 days the "tired but wired" feeling completely disappeared and it became easier after that to not do any mental activity.

After months of that I got close to my previous baseline. (Which is still severe but no longer high on adrenaline with frequent chest pain and sound sensitivity headaches, plus my sleep has become most nights free of restlessness)


Supplements did nothing as far as I could tell, but perhaps electrolytes helped some and one thing that did help me to relax initially when incredibly bored was a small amount of L-theanine. But when I stopped looking for a miracle supplement and just gave in to rest, that helped even more.

 

[xebex]

@Atlas - thank you - yes aggressive rest is certainly helping. am feeling a bit better now but am still unable to by upright for more than a minute. i think this has all been a massive hyperadrenergic pots flare up - i just thought i had pots didn't realise it was the hyperadrenergic type as my blood pressure doesn't go up - but my pots has never properly ticked any specific box.

 

[Atlas]

True... I wonder if pots is our common cause of this shakiness..I also have POTS, I think it might be both hyperadrenergic and hypovolemic... Because starting fludrocortisone lowered my standing HR by about 35bpm (but still increases from 60 to 100ish depending how pemmed I am). pots would also probably be affected by the blood vessel issues that can appear in ME.

Good to hear you're already feeling a bit better. Stay strong.

 

[xebex]

@atkas interesting yes I think I have two types of POTs neuropathic and hyperadrenergic. I’ve found salt loading really doesn’t do much.

 

[wabi-sabi]

I wonder if pots is our common cause of this shakiness..

That is certainly my guess- or more specifically, it's the adrenaline rush that goes with the POTS.

 

[Emmarose47]

I get the shaking with a feeling like I'm pumped on adrenaline when I overexert. It got particularly bad and more frequent at my lowest point, less than 2 minutes of relaxed talking would trigger it for hours.


The only thing that calmed it down was long periods of "aggressive" rest.

And particularly long periods of cognitive rest in complete silence.

Let your brain wander if it wants to but in my experience if you want to get out of that hole you need to embrace complete boredom of not doing any mental activity. For me I child locked my phone and just stared out the window and prayed and stared at the sky and clouds for like 6 weeks and let my mind go. After about 10 days the "tired but wired" feeling completely disappeared and it became easier after that to not do any mental activity.

After months of that I got close to my previous baseline. (Which is still severe but no longer high on adrenaline with frequent chest pain and sound sensitivity headaches, plus my sleep has become most nights free of restlessness)


Supplements did nothing as far as I could tell, but perhaps electrolytes helped some and one thing that did help me to relax initially when incredibly bored was a small amount of L-theanine. But when I stopped looking for a miracle supplement and just gave in to rest, that helped even more.

@Atlas your experience is so valuable ...
Thank u
Its not an easy road to ' just be ' esp when we are housebound / bedbound .... But when people such as yourself demonstrate not only how to do it but also do it and see results it's such a triumph .
Admirable .. gives me a nudge to do some more of that ...
Thank u 😊
Ps cloud gazing is so lovely

 

[Emmarose47]

I need to remember I can turn the phone off ! What a novel idea ! The world doesn't collapse when I do ....in fact the world is waiting to show me how present it actually is

 

[t27r]

I haven’t experienced shakes; and haven’t experienced insomnia that bad, but it does remind me of some of what I’ve gone through: half tired, half awake and brain won’t shut down.

You mentioned adrenals. You might be sitting on a jackpot. Low cortisol not only keeps me from falling asleep (wired tired with body tension), but also wakes me up at 3am

I have on the whole prevented this (or gotten back to sleep at least) with adrenal cortex which I first discovered (50mg capsules but only taking as much as I need for the moment under the tongue to prevent excess cortisol), and now pregnenolone 50mg, spread throughout the day in 10mg doses.

Furthermore, low cortisol = hypoglycemia! I sensed the reason my body would jolt me awake is because it was hungry for sugar. I used to get odd intestine-level hunger pangs too, but it wasn’t as if my stomach was empty/hungry (in fact low cortisol sabotages my appetite).

My symptoms of low cortisol besides insomnia: high resting heart rate, tension in lower abdomen, sometimes tingling in eyes and tongue (a super pronounced symptom when I mistakenly took holy basil and it wiped out my cortisol; reminded me of diabetic tingling but only in eyes and tongue, and mind feeling not good at all).

I’ve pieced together that copper is likely required for conversion from progesterone to cortisol, and manganese likely required for conversion from cholesterol to pregnenolone. I’m deficient/imbalanced in both which might explain things.

Next up after cortisol support, I require a good deal of MTHF (not folic acid) due to MTHFR/MTHFD1 issues. 2-7mg depending on how active I’ve been during the day. Folate contributed to melatonin if I remember right. When my folate is low, I also wake up after 5-6hours (unlike the 4 hour chunk unique to low cortisol).

Next, dopamine. I don’t think it’s well known how pivotal dopamine is to sleep? I have MAO mutations so my body likes to waste it. If I’m low in dopamine, I can be tired/sleepy and begin to dip into sleep … but then get “popped back out.” My consciousness just won’t submerge into sleep in spite of dipping its toes in.

Dopamine support in order from safest to most potent: phenylaline (DLPA), tyrosine, mucuna (DOPA). That addresses the complete dopamine pathway before it becomes dopamine. To work on my MAO-B and prevent wastage, I take olive leaf and plan to experiment with oat straw.

Parkinson’s is a dopamine issue. Any correlation?

I’ve taken GABA support before (valerian, lemon balm, chamomile, GABA capsule, GABA sublingual) but it doesn’t work without the above factors in place, and interestingly has not been ‘foundational’ for my sleep. It only seems to make my muscles and mind relax better. But I can sleep okay-ish when it’s out of whack.