Help with new issue. Vibration leads to other issues

[bensmith]

I cant relax. When i do my internal vibrations go crazy. I cant sleep now. Its weird when i stimulate they seem to calm. But they are getting worse. I dont know what to do or how to stop them. I cant rest. I took famadatine, it calmed for some time but not long ir enough. Is this mcas? Why worse when i relax? Any other ideas? I can’t meditate that makes it worse.

Maybe i shoikd fast?

They wind up and eventually i get nauses and heart bad feeling and also like visions. Feels like i might have a heart attack. Also air hunger.

This is some kind of feedback loop but i dont understand it. Trying not to freak but i cant control and its not good. I feel fine mentally, which most of pem was before now. But have this other thing i dunno. Might be going off the rails here, i cant seem to effect the varauble and it keeps ramping up. I guess ill try and fast. Have a couple peptides too i will try. Besides this i dunno.

Oh and if i am fired and having sleeping spells, it ssems to go away i think. ? Used to, now when i fall asleep it just ramps up looks like.

 

[bensmith]

Feeling very scared. In and out of delerium/somilance and constant cns vibrations(i guess.). Can have issues breathing and heart feels like attack maybe. I dont want to get emotional but im worried this is it right now. I cant seem to effect the situation at all. Ive tried everything. If you have any ideas im all ears. I am in contact with dr levine, she says more testing and maybe its nuerologicocal.

I have had all these issues before but more minor i guess. Its like a storm i cant calm. More severe.

Like i am aure if i could turn itnoff and rest id be fine, but its getting worse and worse.

Ive tried neck collar, fomatidine, zertec, bpc-157, ivermectin, normal meds i take(famvir, metroplol, lithium) supplements. I dont even inow what is happening.

Its like any time i fall into auto pilot/eyes closed and resting my body just goes berserk.

Really worried i have entered a fast defenerative state or
Something.

 

[Judee]

Ive tried neck collar, fomatidine, zertec, bpc-157, ivermectin, normal meds i take(famvir, metroplol, lithium) supplements. I dont even inow what is happening.

I don't think you're going to know what is causing this unless you rotate off of things here and there to test them--like stopping each one for two days at a time.

Because this new stage could be the disease or it could be something in that mix or an interaction of things in that mix. I would work with your doctor on this though.

 

[Wishful]

It's easy to blame everything on our ME, but it is possible to develop unrelated medical problems. Maybe this is some unrelated problem that a doctor can actually diagnose and treat.

The way ME forces us to change our diets, activity patterns and sleep patterns probably makes it more likely than usual to develop other diseases.

 

[bensmith]

I think i have it somewhat under control now, just threw every med i had at it. i see it as an illumination of my covid/cfs experience. It is all so tightly woven. Sadly lol.

I can see further back now, its almost like my me started the second i got covid. I wonder what that means id anything.

Anyway, i think when i crash i have this explosion of mcas/hurts neck etc, spiral etc. i hope i can pull up a bit. I still haven’t been able to get any good days without messing up. Hope i can.

Some part of me thinks I’ll be ok and another swears I’m dead man walking. Retched disease.

Oh and i am in contact with one doctor, hopefully more in the weeks to come. Pcp next week but they aren’t god. Hopefully functional soon. Hard working with them from bed though. Need fluid transport.

 

[Pyrrhus]

I have heard of Long Covid patients, and I think a few ME patients, report "inner vibrations".

I haven't experienced this myself, but it sounds quite disturbing, especially if it's anything like the "room spinning" sensation of vertigo!

 

[Sophiedw]

I get these @Ben... they’re the ones that were calmed down with a mixture of Bcaas / boron.... these chill out the vibrations and then bcaas seem to oppose glutamine so it kind of does the opposite thing. Makes the spirals worse but the bcaas depleted me of glutamine so then I was blacking out from lack of that. Sorry this isn’t very coherent I haven’t slept in 2 nights now really 🥳. Basically the boron and bcaas made the spirally fits much better but then the bcaas and glutamine deplete one another so then I was blacking out from glutamine deficiency.

There now seems to be at least 1 more thing that I need that I’m currently in the process of trying to find out about.

good luck.

oh yeh and on the heart I also get that and it’s horrible, with me it’s folate deficency . Folate makes it go away... I had been getting it quite a lot but not for ages until last night. Feels like my heart may just stop.

Try the bcaas and boron. Up until last night it’d been pretty much ok (spiral seizure and heart wise) for quite a long time so hopefully it will pass for you as well. I’ll let you know if I find this next thing that’s currently making them happen.

 

[Sophiedw]

But then of course you have to be careful with the folate that it doesn’t potentiate the seizures. That’s what I’ve been up for the last 2 days anyway.

 

[Sophiedw]

In answer to why you can’t relax, I think it’s because the problem or defect is part of the mechanisms that changes the frequency of your brain wave. You go into alpha when you relax and then progress through various bands when you sleep and it’s these transitions that aren’t working instead it’s just a glitch and it feels like I’ve died and shocks me out of sleep. It’s somewhere in the slow waves so when I’m awake I feel ok if a little hectic.

Anyway know how it feels man so sorry to hear you’re having some similar experiences.

 

[bensmith]

Ty soph, i cant take bcaas, or folate. Ill try boron. I dont think i am going ti make it anymore. Sorry itnisnhappening to you too. I’ma bit better in the morning when waking to, weird. Do you feel itnin tour chest/cns maybe? You thinj mcas involved?

im thinking of hail marry surgery neck like jen but i dont think itll work honestly, esp if i have this new thing like we say. It does seem like a brain wave issue. it seems to get worse in certain laying position, so maybe my brain stek is involved, yiu too? Have you thought about surgery like jen got?

Im not strong like whitney or some of yall, i cant just lay in bed tossingnajd turning fir the rest of my life. I wonder with this new issue if i could even have surgery or recover. Since i cant rest for shit now.

think its pretty close to the end of the road for me. All because i wanted to improve a honby i was doing because i fot better ejough to live : /

 

[Sophiedw]

Ffs sorry I’ve been ‘lucky’ in a way being able to tolerate all sort of tablets. Someone needs to work out what the difference between me and someone who can’t take the healing tablets is. I think therein probably lies a lot of answers into what a cure could be coz it seems like the same problems, like I can relate to heavily to this symptom but someone like freddd or I can take stuff like supplements and never react very badly. I assume something to do with the immune system?

hang on mate, there’s a lot of hope about possibly ways forward at the moment. Could you try a tiny tiny spec of those tablets like a toothpick with a small bit on the end? That’s how Fred’s started with many of his nutritional things? And then did two specs the next day or whatever.

Do you know brought on the vibrations/spirals atm? Or was it just another random thing out of no where? I’m also getting the borderline psychosis / visions as you say but they’re really shocking and stop me being able to rest or sleep. Can somewhat relate. Another thing is stuff does just pass with this weird condition, and probably turns into something else.

I also have open focus attentional training and edmr in my repertoire of stuff that’s made me much better but some people say emdr crashes them so I wouldn’t want to suggest it until you were feeling more rested. Which will happen.

 

[bensmith]

Sophie,

no i cant i have hppd, a comorbid. Any amount is triggering.

it was triggered by a mega crash. I was trying to fix computer pushed way too far.

i hear you, but it doesnr feel very real to me. I just dont feel very hopeful with advancements. Sorry i know you are bring helpful its just how i feel.

like maybe in 10 years or sobering but not in the next few years. I’m just so locked up and Broken. I cant live like this. But thanks for support again. My family foesnt have rook for a disavled son either. Or brotherZ

i dont know what that is but im nearly certain itnwould crash me.

 

[Strawberry]

@bensmith I get the internal vibrations and heart palpitations also. For me, it usually means I’ve been too active. I also was able to drastically reduce the heart palpitations by eliminating food coloring, but I know you are on the pea diet.

I keep holding my breath for you that you will get the covid shot and get some relief.

I hope you can relax and get some relief, at least to some extent!

 

[bensmith]

Thanks berry,

do you have cci or neck issues?

yes it is an overactive for me too. But im so far gone right now i cant even lay in one position. I have to move every 10 mins or i start shaking form pushing. If that makes sense. I dont virw this as a recipe for suxxess or possible esxapezz. Seems like a downward spiral startingz

also my family still isnt supportive enough. I cant believe them.

thanks maybe i will take it. I am afeaid to gamble but maybe uts time to try. Just seems like many of my friends had a haed time and got worse. If ik like them im done hinestluzx

i dont want to tell this to nyself so ill tell yall. I am sooooo deeply ashamed for what i did. Risked my entire life to improve a hobby. I could be fine for uears like iwas. So deeply ashemd.

i wish i could just meditate, i know that would be enough. But that just crashes me. : /

 

[Strawberry]

I do have AAI, lordosis (aka military neck) and damage to C2 and C3. Diagnosed about 15 years ago. I haven’t had the modern MRI for any of the new diagnosis stuff, but I wouldn’t be surprised I have another acronym I could add to the mix.

You haven’t been sick long, you have a FAR higher chance than me of improving or fully recovering. It’s just that acceptance is nearly impossible. And because we can’t accept that we must rest, we make ourselves worse.

Edit to add lordosis above

 

[bensmith]

@Strawberry i think i am resting, what do you mean? I lay in bed all day and do nothing but rest.

i do agree acpt is nearly impossible.

 

[Strawberry]

If you have to turn over every 10 minutes, that in itself is too much exercise at times.

 

[bensmith]

@Strawberry i cant find a spot for more than 15 mins without something bad happening. My neck got worse this crash, plus i hurt it in a collar yesterday. I wold be still.

i also cant get space to recover right now. My family is pushing me every day. I wonder if they are bad people now.

 

[Strawberry]

Your family aren’t bad people (I don’t think at least), but they definitely aren’t helping because they don’t understand.

Maybe you could ask the very severe that have had or are scheduled to have surgery how they deal with pain. Constantly having to change positions is too much activity, but I don’t know what to say.

Also, I edited my post above to add that I was also diagnosed with lordosis.

 

[bensmith]

I do not want to be dramaric but i am afraid my faimly is truing to ignore my needs and kill me for the good of thr group.