Jyoti

Good! Glad you got it and that it was paid for by your insurance in the end. I just refilled and it took almost a week for the pharmacy to get it. So this seems to back up that statement. Good to plan ahead!

Oh, that is a drag, @MikeO. Always something, no? Is there another manufacturer of pyridostigmine that your pharmacy may restock in future? I was going to mention that I ordered a refill myself and encountered no difficulties, so it definitely looks like it is still generally available--the issue is insurance. What about some of these independent drug discounters like Good RX or Mark Cuban's enterprise? Might those obtain you the pyridostigmine at a reasonable price?

Yikes. I am going to refill my prescription then. See what I learn. Thanks for the heads up. That would be sad!

Hahaha! I get it. Same here. It is really amazing what a difference it makes. Whatever the reasons! Maybe sometimes you just say 'thank you.' But it does make me curious about the various drugs and our various responses to them. Why beta blockers work for some, why vasodilators worth for others, etc. Maybe one day we (and the medical establishment) will know.

Lovely!

@MikeO--thanks for sharing the above. It is funny because I was looking up the mechanism of anticholinestertase drugs today. And while I appreciate that your doctor took the time to look into it I think he got only part of the story. Or maybe he was trying to simplify for you? Here is the definition, from Britannica: Also, from the British Journal of Anesthesia/Oxford: Or maybe no one knows? Another distinct possibility in our world! But it looks to me like Mestinon lowers heart rate and potentially BP by increasing parasympathetic activity. You have HPOTS? I don't. So it is curious that we both get benefit. But, look at this: https://www.healthrising.org/blog/2022/05/29/mestinion-chronic-fatigue-syndrome-exercise/ This makes sense in terms of the benefit I get. I can exercise with Mestinon. Without it, it is ALL will. I drag my limbs, step by torturous step. With Mestinon, on good days anyway, I can actually move. (I am less tachycardic as well, overall, but not dramatically so.) This study finds that it increases not only acetylcholine (or prevents its loss) but....norepinephrine! How about that for crazy stuff? And the theory outlined in the above blog post, if I got it right, is that because of SFN, the linings of our blood vessels (smooth muscles) are damaged and thus do not contract properly. The acetylcholine causes contraction of the smooth muscles of the blood vessels, aided by norepinephrine. This latter makes the most sense to my not-terribly scientifically oriented mind. What do you think?

People are still getting Covid AND people are still getting Long Covid AND people are still dying of it. The surge wasn't as bad as anticipated this winter, but it none-the-less ended a lot of lives. Personally, I am not keen on having LC on top of POTS and M/ECFS, so mostly, I mask when I am in public places. I have to admit to becoming a bit more lax than I was. Occasionally I eat in a restaurant (it's rare, but still...) but in grocery or other stores, I wear a mask. Most people are not, and I get the fatigue this whole thing has caused. But an old friend of mine had a post-coved stroke last week and is incapacitate. Another person I know died of a post-Covid stroke the week before that. It seems like a small thing--to me-- to wear a mask.

I have been curious about SGB for ME/CFS for about two years. It certainly sounds like an elegant solution, and it does apparently work wonders for PTSD as well as pain. But what I have noticed, watching as many have tried it, is that your experience is pretty common @erinlia. For people with autonomic dysfunction of short duration, i think there is a greater likelihood of noticeable results. I know a bunch of people who have had POTS and ME/CFS for decades who went through series of SGB only to give up, none the better for it. Like you infer--it is expensive if it has to be repeated many times, and without any concrete signs of improvement it may be prohibitive. I'm sorry it didn't work for you! 😪 I'd be curious to hear from anyone who has been ill for more than five years and has had real improvement from SGB.

Anything in particular going on today? It IS so hard some days..... I 've had quite a few of them lately and sometimes the most helpful thing is just having someone else KNOW that I am struggling. After all, there isn't much for anyone to do, but it is really difficult feeling as badly as we do and being all alone with it. Talk to us about what is going on for you?

Aha....Me too. Unlike so many of us, I tend to have my best hours early in the day and as it wears on, I wear out. No one has ever officially told me I have HPOTS, but I do have high levels of plasma epinephrine and norepinephrine, so maybe @Pistol's explanation applies to me too? It is curious, though, and makes me want to know: why does it work as it does for us? What is going on???/

Great to hear this @Sushi! I am really happy for you and imagine you must be enjoying the expanded freedom.

Yes! There is data to the contrary, but a lot of doctors are not very familiar with it. Hopefully before long....like MS and peptic ulcers, the mainstream allopathic narrative will shift from psychological to physiological.

Fundamentally, I believe we are one unit and it is mostly foolishness to try to compartmentalize our bits and pieces (body and brain, for instance) as if they could operate independently of one another. There are loops and loops that impact each other and I have seen this multiple times. Once, when I was very young--19 I think--I developed vertigo overnight and the doctor I saw heard me out and then asked about my love life and work life. I was insulted! They were both in the dumpster, but hey...this was a real physical thing that was happening to me! He wrote me a prescription for valium, which I promptly threw in the nearest bin in outrage. But I went home, broke up with the bf and quit my job and the next morning I could walk a straight line again. I wish it were that simple more of the time. I've been in a terrible flare for three weeks now. My heart rate AND my blood pressure have gone way high and all the tests done have revealed nothing. My neurologist prescribed Librium yesterday saying--you are in this flare, your body is flooded with catecholamines and there is not much we can do about that, (beta blockers have been dangerous for me) so this will help you ride it out without freaking out. I don't know if I will toss that Rx or not, but I could see---something has provoked my ANS. I have no idea what it is, but I am in a bad way physically. My mind did not--absolutely did not--create the flare. But I can see how it could make it worse. Being assured, for instance, that my EKG and blood work were fine allowed me to stop wondering if there was some other organic problem emerging, thus permitting me to be less anxious. But a high heart rate is alarming. It is meant to be in a healthy human --our heart rate SHOULD go up when there is danger, right? So we can likely--in my view--respond to the physical issues with anxiety or depression which worsens our EXPERIENCE of them, or we can stay a bit more detached from them, hopefully allowing them to run their course without further exacerbation. I'd also say that when I tried not long ago to use my mind on my POTS symptoms --it was an unmitigated disaster. More of an experiment in this realm than anything else, I think I had confirmation--if I had had any doubts!--that it is physiological in ORIGIN. It is also true that some people, especially younger ones, recover from dysautonomia without there being any clear reason why, so if you consult your body and find that you feel ok, go with it!

So sorry you have to contend with it, on top of everything else.

Yes. There are other provocations that occur, but that is the seasonal one for me. Mid-January through March seem to be my toughest times of the year and each year, I think--I'm going to escape it this time--and each year---I don't. Sorry you are suffering, @Machair Hope it passes quickly and you can get back to baseline or ....better yet...summer baseline! I have a good friend who absolutely dreads the spring and summer because she feels so much worse, so I guess we all have our environmental vulnerabilities.

I agree. Nice to see such dramatic results!

I don't know if this could be of any use, @MikeO, and I am also quite sure you have explored it, but it occurs to me that maybe you would do better with telehealth at a distance with someone who knows what they are doing. Easier said than done, that But it seems like since the pandemic there are a lot more physicians who are practicing online, which increases the pool of people you might be able to access..... Just a thought...

It is so frustrating, isn't it? The state of medicine is not equal in most cases to the challenges we face.

Maybe this should go in its own thread, but I am dealing with both hypo- and hyper-tension all of sudden. For what it's worth, I think we get a lot of really useful info from our own 'home testing' @Horizons1. I got my diagnosis--or rather, I got the tests I needed to get a diagnosis by doing a series of stand tests and sharing the results with a reluctant doctor. For years, I have been pretty stable--my BP is low normal (unless I am upright too long and then it does drop) and there are ranges of heart rates I am familiar with. They rise and fall a bit, depending on stressors, but they are fairly reliable. A week ago, my blood pressure tanked for two days. I am usually 110/70 and suddenly it was 90/60. I felt weak and pretty awful. In a day or two it had risen to 158/105 and has stayed high--though not usually THAT high--over the course of several days. My heart rate increased by about 85-90 bpm from resting upon standing. I know some people deal with this every day, but for me 60 bpm increase upon standing is more the norm. I have been to the ER and EKG and blood work all ok. Malingerer-me! But here is what I am watching: potassium. Has anyone else had hypokalemia? I drift toward it often enough and have had it pretty severely in the past. Thinking about it, I realized that I had the classic symptoms for over a month. And lo and behold, drinking a glass of low sodium V-8, which has loads of K+, brings my blood pressure down to a reasonable level. I did a few experiments and then went to my PCP to get some potassium of a certain sort. I was offered an Rx for Lexipro. THAT put my BP up, I will tell you. I'm going to see my cardiologist who is fairly POTS-knowledgeable in two days. I am going to ask about these, @Pistol. Do you understand why there would be such lability? You might be best off at a long covid clinic @Horizons1. Of course I don't know who you will encounter, but it seems to me that people who are choosing to treat LC are quite dysautonomia-knowledgeable.

Your experience notwithstanding--who needs that?--- @Sarah Tee, but something is in the air. Grumpiness abounds this week, at least wherever I look, including right at home. The good thing about that is that it will almost certainly pass. Or perhaps already has? And you will figure out what to do about this dentist, one way or another. Some day, I suspect, the dentist herself or someone she loves will become 'unreliable,' as sadly we are, and maybe she will understand things in a deeper fashion.

This is so confusing, isn't it? I think a lot of us experience swings in our capacities and at least in my case, they are often unpredictable, which throws me. It also throws the people around me, who I know are thinking: but you went out for a 3 mile walk yesterday, came home, cooked dinner for a friend and sat at the table chatting all evening. How is it that today you can't even sit up? Well, I know for me, some of the answer lies in just how much I did the day before! If I am imprudent--and who doesn't want to be, to join in life and live it as fully as we can when that door is open?--I pay a price. But even so.....there are times when I just don't know why, or there are things that I HAVE to that leave me flared. I have kids and they are totally baffled. They want me to be reliable and the sad fact is that being unreliable is part of this illness. At least I think most of us would say that. I guess over time I have learned to try to be unapologetic--this is just what I deal with. I never know if I am going to be up or down, and all I can do is to make the most of the ups and minimize the downs. I think that over time, people who are close begin to understand how this works. And the rest of 'em--well.....I'm not going to worry too much. It is good you can run a mile in 10 minutes some days. I bet that is really helpful to your overall situation. But as you are seeing, you may need a handicap plate and other accommodations, even if you don't use them all the time. Just 'cause you have the right to park in a handicap spot doesn't mean that you need to. Use it when it matters. Set yourself up as best you can for the bad days and then live as big as you can on the days when your body allows. It sucks and I am sorry you have to deal with this, but I am glad that you have good times as well as bad. Just my thoughts.....

If I get a good explanation, you will be the first to know!

I just read a bunch of his papers and watched a few talks and....I get it. I am going! Thanks all, for your contributions to my decision.

👏👏 That'd be so cool, wouldn't it? Excellent idea. And you know, pretty much the only way I have gotten anywhere with most of my doctors is to lay out facts in an organized way that leads them to the unavoidable conclusion I have already reached. Of course I let them think they got there first, but it would be so nice to have someone to just sit down with and look at the big puzzle, pick up a piece and together try to find out where it belongs.

That sucks! I mean...I hope the prednisone makes a difference and the meningitis is very quick to exit. My goodness---take good care. I was thinking about both the anti-inflammatory and vascular-tightening effects of steroids and thought I'd see if there was anything out there without the same side effects that might accomplish something similar. I found this --think I will do some more exploring. It is just too impossible to consider that there is something that improves things dramatically and yet can't be taken advantage of. I will post if I decide to try this combo. Looks like the CE (one component of the above described cocktail) is amazing. It seems to do everything; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3116297/ But guess what? It could build up toxicity if taken for more than six weeks straight. So.... same kind of problem. I'm not defeated, though. There's got to be something!