Jyoti

Hi @AngieP.  It is a dilemma.....  I had pretty bad flares after my first Pfizer and my booster.  In fact, I am still dealing with the fallout of the booster, which I had on November 1.  It is not overwhelming anymore, but the impact is not over altogether.  Which is a huge thing to go out and actually ASK for---please put this stuff in my arm that well may make me really sick for quite a while.

The one thing that helped me decide to go ahead and do it (and to not regret having done it now) is the preponderance of advice from POTS and ME/CFS specialists (including my own neurologist) who all said---the vaccine may have side effects, but they will be dwarfed by what COVID will do to you.  Get vaccinated! 

I also looked at many posts in many places by people with dysautonomia nd ME who had either been vaccinated or had COVID and what I saw convinced me to go ahead with the booster.  If you do get it, consider looking at Nancy Klimas' advice for pre- and post-vaccination supplements.  My cardiologist also recommended that I try to drink significantly more water than I usually do, which is already a lot, on the day of.  I did all of that that for my second dose and did not have much of a reaction at all.

Check this out if you haven't already: https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html   Maybe it will help.  Whatever you decide, I wish you good luck!

15 hours ago, Outaker said:

Would this work for  hyperadrenergic pots ?

I don't know, but logic says to me that it could.  If the desired effect is to shut down the SNS for long enough for the ANS to reboot itself it would seem to me that hyper POTS could benefit a lot.  But of course there are a lot of questions (and likely experimentations) to be asked (and done) before we know anything. 

Somehow I am doubting now--after a fair amount of reading--that this is the thing, the silver bullet.  If it were, I suspect there would be more hubbub. But...the application to LC opens some doors.  Maybe it could be one of the things that inches some of us toward more functionality?

On 1/2/2022 at 9:13 PM, MTRJ75 said:

The doctor who did my exosome treatment is a pain doctor. Very progressive. I may call him after asking my neuro about this. 

Have you asked your neurologist yet @MTRJ75?  I am curious to know what they say!

I did meet with the pain doctor for the first time this week.  He felt that I was a good candidate and that one  or two unilateral injections would be sufficient to make a difference.  I asked him about laser or linear-polarized near infrared means of blocking the SG and he told me he felt that they were too diffuse and less accurate, more likely to risk damaging other nearby structures and tissues than an injection.  

I have been trying like mad to find others who have done this.  I have come across a couple people who found it helpful--though they are still reading Cort's blog or on one the ME/CFS sites so I am not sure they were miraculously healed.  I have also come across a few people who had it done and experienced absolutely no change.  And further, a couple who report very bad side effects months later.  I have not been able to communicate with the latter group personally so have nothing more than a post to go on.  The most frightening side effect--to me--was pronounced emotional blunting months later.  

For those of us who deal with syncope, this is a singular case, but interesting none-the-less: https://europepmc.org/article/pmc/pmc6784663 

My plan is to continue to try to find out all I can and then, like @MTRJ75, ask my neuro what he thinks.  In the meantime, I would be super grateful for any links, connections, stories etc. if anyone has anything to add.

14 hours ago, MTRJ75 said:

Has anyone ever heard of this? 

Thanks for posting the link!  It is weird because I have heard of it--at least eight times in the last six days, and only a couple of the references were to this paper and/or Cort's piece.  My osteopath mentioned it to me last week as he was referring me for nerve blocking for sciatica.  He said: this pain doctor I'm sending you to does some really interesting stuff including a stellate ganglion nerve block on another patient of mine who is dealing with trauma.  Apparently it dramatically lowers the threshold for sympathetic activation.  Very successfully.

I was suddenly excited to talk to the pain doctor.  Forget the sciatic pain!  I can live with that.  Let's talk SNS!

And when I read the original paper: https://www.sciencedirect.com/science/article/pii/S0165572821003118 I cried. Tears for: what if there actually is something that could help me feel better?   I think we all have inner knowing about what might help and what is less likely to make a difference to our individual circumstances; this one feels very promising to/for me.  

Fingers crossed for all of us.

@Shelby90--I am SO sorry to read of the problems you have as a result of the jab.  What a nightmare.  To be trapped in a body gone even more crazy than you have learned to live with.  I really hope the new neuro is responsive and caring.  You deserve that at very least! And an upright MRI in both flexion and extension as well.  

I had a similar--though much milder---reaction to the booster.   It was Pfizer.  My first was awful, second a non-event and third has been pretty hairy.  I am a month out and while my symptoms do not compare to yours, there are some similarities none-the-less.  Early the day after I got it, my neck, jaw, face, and upper back seized up as tight as I have ever experienced.  To the point that the entire area was numb.  I have been fielding problems relating to that ever since and because all the cranial nerves and the vagus go through the cervical spine, and the muscles around my cervical spine have virtually been in spasm the while, it has been kind of hellish.  I've had nausea,  blurred vision, tachycardia, etc.  One day I feel a tiny bit better and the next ever so much worse.  I wonder when this will improve.  

The reason I am writing is to share one thing --the only thing--that has helped me.  It may be small potatoes, up against the kind of devastation you are contending with, but even if it helps a little bit....might be worth it.  I find that ice calms everything down about 50%.  I use an ice head wrap which covers my neck and the sides of my head, forehead.  I figure if there is inflammation, especially inflammation affecting/crowding nerves, this may give them a fraction more space and me a good deal more functionality, a lot less trouble.  

There are a lot of good suggestions here--I hope one or more of them give you some relief!

Good luck and hang in there.  You are going to get to the other side of this.

@KiminOrlando

3 hours ago, KiminOrlando said:

Do I need to disclose to my other doctors? I'm more concerned about SS Disability and my corporate disability seeing it in my records. Is it a problem since it isn't legal federally? 

Those are all good questions and I wish I knew the answers.  I always disclose it and almost never get any kind of response from my doctors.  But I don't have SS or other disability to worry about. 

Your post made me think to share a couple of things that have helped me, because of course--most of us do need a benzo, at least from time to time and getting them can be difficult.  I was told by a functional doctor (and I have no certitude about this so someone who knows more can counter it) that Valium and Valerian are very closely related.  Probably one the inspiration for the other.  In any case, I have found Valerian to be somewhat helpful.  I also  take on most evenings something called 'Serious Relaxer" by Wishgarden Herbs.  Not sure if I am allowed to name brand here, so mods--if it needs to go, please accept my apologies--but this stuff really helps me with some of the things a valium might. 

So sorry to hear of your diagnosis, Elaine.  And welcome to the forum.  Hopefully someone with experiences aligning with yours will be able to offer you some specific advice, but all I can say is: YES!  FRUSTRATING!  I know I just 'pushed past' the symptoms for years and continued running and weight lifting.  It was ghastly honestly, but I had this habit of using my mind to corral a failing body.  With a diagnosis, I have had to cut back on much of what I was doing because I better understand what I was doing to myself, how I was exacerbating problems that were already there and asking WAY too much of my body.

 I have had ups and downs but lots of times where my capacity to exercise increases and I am stronger than I had thought.  Not as strong as I once was, but I think these issues require that we take the long view.  Or rather, it helps if we do that.  And speaking of long views, it is too bad that you have to wait six months to be seen by a specialist, but....six months is a pretty short wait time for someone good in this field.  Sadly.   I hope you get some clarity and guidance for how best to keep and enjoy the things in your life that give you the most vitality and happiness!

I just had a TST (thermoregulatory sweat test) that showed nearly global anhidrosis.  My face and neck sweat rather profusely and my hands enough to turn the powder purple.  The rest of me---not a thing after almost 40 minutes at 120 F.  I was pretty shocked by this, as was my doctor.  Just wondering if anyone else has had similarly dysfunctional results from this test and what they  led you (and your doctors) to conclude.  I will of course be consulting with mine to see what he thinks, but in the meantime, I am trying to understand the implications more clearly.

Further, and perhaps irrelevantly, I have had multiple neck issues and am wondering if the sweat patterns are related to ganglionic lesions somewhere in my neck....  Oh...and I have currently  been diagnosed with POTS and NMS.

Thanks to anyone who has anything to contribute to my understanding.

@MikeO--I have no idea what is going on in your body--obviously--but about mine, I know a bit and it might be relevant to yours...  I have pain in my glutes a lot of the time which I have traced to a pattern of unconscious countermeasures.  In order not to faint throughout the day, I squeeze those muscles excessively while standing and over time, it has resulted in pain.  I can potentially see the same kind of protective reaction happening in the calves.  I too have coat hanger pain but I believe that is a blood flow issue, whereas pain in my glutei seems in my case to more connected to relentless clenching.  It does recede when I am supine.

I think I am the one who wrote about the Apollo Neuro at the beginning of this year @JennKMac.  I still love it.  Just got a new band as the old one was getting kind of worn.  Like I said back in January, I had hoped it might be THE ANSWER, which (of course) it is not.  But I use it every night for sleep and it makes a big difference.  Once in a while I forget it and with the help of my bedside herbal apothecary manage to fall asleep.  Almost inevitably I will wake up at 2 and have no luck  getting back to sleep.  But then I remember---ahhh, my Apollo! and put it on and am back asleep in a few moments.  

In addition, I use it after I have overdone things and it helps bring my hyper-arousal down more quickly.  It supposedly does a bunch of other things for you, but those are the main ones that I have found helpful.  

It falls in the middle of the three devices you mentioned, I think.  It was a lot to fork over, but for me --well, well worth it.

Nothing quite like it, in my experience.  Take your pain seriously, give yourself all the time you need and can to grieve your beloved Callie and be gentle with yourself.  I am so so sorry.

5 hours ago, SMT883 said:

I wanted to know how people were doing now?

I am totally fine (in terms of the jab and its side effects) and have been for a couple of months now.  Really glad I had it/them,  and also glad the post-vax misery is over too.  

On 3/28/2021 at 4:52 PM, Nin said:

I suppose we were dammed if we don't and dammed if we do to get the vaccine

Yup.  Agreed.  It is a tricky path to tread.  How are you doing @Nin?

@Heartbroken--glad you wrote that letter.  It is a very responsible stance.  It is so easy, especially when we feel overwhelmed with symptoms and exhaustion to just trust someone in authority.  But you are taking care of yourself by asking the obvious questions and not acting until you feel like the recommendation is right for you and your body.

7 hours ago, KiminOrlando said:

If you aren't comfortable taking this med, don't take it yet.

I think this is excellent advice.  Our 'cases' are often incredibly complex and while we pay enough and have reason to hope (even expect) that our doctors will have a handle on the details, my experience is that much more often than not, they fail to comprehend all the bits and pieces.  Which it sounds most definitely like has happened in your case, @Heartbroken.  In general, unless something makes sense to me in light of the specifics of my body, I am not going to take it.  I ask for explanation--in your situation, how is a drug that raises BP and norepinephrine not dangerous to someone for whom both are high?--and unless I really understand why it isn't risky or why it should produce a desired result I decline.  

1 hour ago, CallieAndToby22 said:

She couldn't understand constant adrenaline and kept calling it anxiety and I kept correcting her and telling her it was adrenaline.

Oh my....how incredibly upsetting and frustrating.  If you have to explain dysautonomic dysfunction, you are already in dangerous territory.  This one sounds like worse than a bust.  Walk, no run (you have loads of adrenaline, right) as fast as you can in the other direction!

You have probably considered this (follows in a bit), but I happened on this thread because I am trying to make sense of a lot of adrenaline in my life.  My illness started with exhaustion followed by an absolute inability to sleep.  Or stay asleep. I'd be awakened at all hours if I was lucky enough to fall asleep by what felt distinctly like a surge  of adrenaline.  

Over the years, some kinder doctors thought it was cortisol, and maybe sometime it was.  Much was done to modulate the cortisol,  but I have felt extremely wired but tired for years now.  It never ends.  I too take tons of stuff just to get the minimal amount of sleep I can.  

Recently I have seen a dysautonomia specialist who thinks I have  both  POTS and NMS, but most of my symptoms come from the latter.  This has been surprising to me since I have never  fainted.  But I guess I come really close about  12-15 times a day. Yesterday I got results of a catecholamine test (what a trip with the tech, like everyone else who has done this!) and  finally put together that I am on a grand see-saw multiple times each day:  blood pressure dropping precipitously, coming really close to fainting (and of course I have developed a long list of countermeasures, mostly unconsciously) and then my body releases masses of adrenaline in a last ditch attempt to keep me from keeling over.  My epinephrine is high supine (and I do have pre-syncope while lying down) and super high upright.  

So...I offer this as yet one more thread to consider if you have not already.  Which is the greater likelihood. 

Glad no PCOS for you @CallieAndToby22.  One small mercy.

I got Pfizer and as far as I know do not have hyper-POTS (expecting confirmation of that today or tomorrow).  The first jab left me bed bound for eight days. Really not good.  But I consulted with three different doctors, including two dysautonomia specialists, who all urged me to get the second.  I had very few side effects from the second---less, in fact, than I was led to believe the average person might have.  

I have used THC medically--for sleep--for about five years.  I use edibles, in conjunction with melatonin, because their effects come on more slowly and last longer than any other form of ingestion (ie, smoking) and because I can be fairly precise about the dosage.  I started off with tinctures, but found over time that edibles work better for me--again, I think they take longer to kick in and stick around a little longer. 

The one challenge (other than procuring them now that I no longer live in Marijuana Mecca --CA) is a very occasional accidental overdose.  When I make that mistake, I get high, which I abhor.  And have to suffer through a couple of hours of lying awake being stoned.  But most nights it ratchets me down and then the melatonin puts me out and I stay out.  Which is a big deal for me.  

I haven't used it for anything else, and would be wary about it, since I hate being high so much.

Did it come down, @E pots?    It is just so frustrating and scary to have the regulating mechanism for something so critical as the heart completely out of whack.  Mine has been coming down fairly quickly of late, but I am feeling pretty good (relative to how I feel at other times, not relative to other people!).  But when I am having a flare, it takes a while.  

I hope you are better this morning.

I tried an Aspen too, @RecipeForDisasterand with similar results.  It really seemed like a great idea since we were all pretty sure that at least some of my worst symptoms were a result of CCI.  Turns out --upon more investigation--that I actually have rotational AAI and not CCI--so the collar makes even more sense because it prevents inadvertently rotating too far.  Can't rotate much at all, can you, in a hard collar?

But while it gave me a sense of security when I first put it on, after a while--maybe a half hour--I would always start to feel worse in a systemic way.  My vision got blurry, more dizziness, etc.   Someone --I think a chiropractor--suggested that it WAS the chin piece--that it forces more extension than my cervical situation could handle.  Since then I have learned that I have a fair amount of stenosis, so I wonder if the angle the collar imposed created pressure on cervical nerves.  

It sure sounds like something that could be happening for you.  Or similar.  I just stopped using mine.  I mean---what can we do but go with what works and discard that which does not?  Your neurologist may know a lot but can't crack this mystery (or isn't sufficiently interested) and frankly, this is a familiar response to something a doctor cannot unpick: go away, you are imagining things, don't waste my time.  It is unsettling to encounter, but we all know that there are vast realms that medicine does not yet understand and we have to honor what is clear evidence in our own bodies. 

1 hour ago, Pistol said:

@JyotiTo give you those parameters is like telling a chicken to only poop in the litterbox!!!!

Exactly!  Like everyone else here, my heart rate goes over 95 when I sit up sometimes.  Taking a shower or washing dishes can get me into the aerobic zone!   But then if I try to get it higher, as the neurologist suggested, I end up coming very close to passing out.  And if I do manage it for a few moments, it does, as you note, come with serious consequences.  

Just a little baffling...   Thanks for your response!

I wonder if anyone has encountered anything that might shed light on a current dilemma for me.  I saw a cardiologist who sees a lot of dysautonomia patients and he told me (POTS and NMS) to do salt, water, compression garments and keep my heart rate under about 95 (I am 64 and the max should be around 155). I then saw a neurologist who specializes in dysautonomia --my original appointment but I wanted to be sure I did not have any organic cardiac problems--and he tole me to do salt, water, compression garments and to get my heart rate up to 155-160.  

This is not plaguing me: I can only do what I can do.  But I was just curious if anyone had any thoughts or insight on this potentially rather wide variance in advice.

Thanks

I have used, with some success, something called "Cortisol Manager' -- a supplement by Integrative Therapeutics.  I have the same experience and this has helped calm it down some.  Not a panacea, but a tool.  It is awful, and I so sorry that you are dealing with this, as well as any other symptoms since you had Covid, @Churt

@RecipeForDisaster--how is the collar going today?  (They ARE uncomfortable, to be sure!)  Do you have any diagnosis of pathology in your cervical spine? Have you had imaging done? I am guessing not since you said the doctor is 'just throwing stuff out there.'  I have tried a range of collars (in fact, I have this amusing notion that I should mount my collar collection on the wall like some avant art piece) and none of them have really done much for me. 

I have used the Aspen when in really dire shape and it does help a little--I think the stabilization is of some value.  I also get better with traction (comfort trac or PT) and I thought a collar would be super helpful.  In my case, I finally  got the imaging that showed I do not have cranio-cervical instability (though I am near to that range) but I do have some atlanto-axial instability which is horizontal.  I still haven't figured it all out, but it feels to me as if the collar holds my neck in a way that is NOT good for my particular instability.  

I know a lot of people get benefit out of wearing a collar during car rides, when the vibration and the bumps can exacerbate things.  And I imagine you have also gotten the advice not to wear a collar for more than four hours a day?  I think that is standard--doing so ultimately weakens the neck muscles which will make things worse in time.  

I guess that in addition to the immediate feeling of wearing the collar I would look carefully at overall symptoms and see if you have any improvement at all.  I did have some, especially in a bad flare, and that was important diagnostic info--demonstrated that some of what I was dealing with originated in my neck.  If you have not had it done already, that would seem to be a good next step if you can swing it--see if you can get some MRIs, particularly in flexion and extension.

23 minutes ago, MTRJ75 said:

Yes, but only if the Maiden was on fire too. 

I think they sometimes did that. Devilishly clever.

Sounds like something I call 'The Iron Maiden" @MTRJ75 ! It is always worst around the head neck and upper torso, but mine spreads too until I feel like I am literally inside a torture chamber.

Thanks, @Pistol.  I have read a fair amount about the potassium/sodium relationship; for some reason mine never follows the rules.  I guess that is part and parcel of having dysautonomia--we tend to be extra-ordinary!