Jyoti

LOL. If I go....I will be well prepared! As noted, a definite possibility. I also just stirred around the internet a bit and found that steroids --injected or ingested--can suppress the HPA axis, which in turn decreases epinephrine and norepinephrine release. I honestly felt less fatigued during those two weeks than I would usually, so I am not sure how to fit this puzzle together (me and everyone else)..... Still, if my normally high levels of both epinephrine and norepinephrine were reduced....might that have not have had a positive effect on high heart rate? Just musing and inviting any other thoughts, but without any expectations.....

LOL. Great plan. It is actually a very good thing, I think, to have some go-to that is either a temporary or emergency over-ride of symptoms. So you can get important stuff done that would otherwise be almost impossible.. This is fascinating. Great speculation! I immediately went hunting for articles on this and it surely makes me wonder. I guess the more speculation I can do (aided by you and others!) the more I can bring to whomever it is I see next. More good advice. Thanks! Thanks, Pistol, for sharing your experience. I recalled that you had been a patient of his, and one who had really positive things to say. Good to know.

I have always had unexplained tears or random crying when I am extremely fatigued. Sometimes, It is clearly that there is a task ahead of me that is way too much given my limitations. But other times, I am just....crying because life is overwhelming. So...there is usually some emotional component to it, though I would say that the emotional part is directly linked to the dysfunction in my body. I mentioned this to my neurologist and his eyes lit up. This was something of interest to him. In fact he wrote a paper on it: https://www.researchgate.net/publication/340029523_Involuntary_emotional_expression_disorder_in_postural_tachycardia_syndrome I am not 100% comfortable with his conclusions, but it is certainly an intriguing aspect of dysautonomia, likely demonstrating yet again how much we are of a piece--physical, mental, emotional, spiritual.

That is really interesting, Sarah. And it must have been a nice week in a way? I have wondered about steroids in general, but am further baffled by the delay in effect in my case. Why would steroid injected two weeks ago resolve ANS issues? It is a mystery (and we live in a world most mysterious!). So probably will never know. But I am curious. Could it have been that addressing inflammation in my lower back did something to my cervical spine (you'd think it would) where I have instability, and took pressure off ....vagus nerve? Some other brainstem structure? He sounds awful. I am glad you found someone he will treat well to be there with you and communicate with him. If ever there was a graduate course in learning to stay focused on outcomes, it is being ill with something like dysautonomia. We put up with so much in order to get what little we can. Sometimes it is easier, but it sounds like this guy is going to give you an AP lesson! Always good advice. Thanks, Mike!

If you have personal experience of Dr. Grubb I would be very interested in your advice. I put myself on his wait list a few years ago and ..... forgot about it. In the meantime, I found a neurologist who specializes in dysautonomia within a two hour drive. Earlier this week, I got a call from Dr. Grubb's office offering me an appointment in April. (Toledo is REAL travel for me. ) I am trying to decide if following through on the opportunity to meet with Dr. Grubb makes sense and is worth the effort of getting to him. I know he is widely loved and admired, but...... My neurologist has been thorough, spent lots of time with me, done and ordered a broad range of tests. He has trialed me on Midodrine, Propranolol, Ivabradine, all to either ill or no effect. I find that increased salt and fluids as well as compression garments change nothing in terms of my experience. Currently, I am on Mestinon at a very small dose and it is revelatory. I can exercise a bit with some enjoyment and my overall function has increased by at least 15%. Which, as we know, is significant! There are, however, some areas where I feel my neurologist has kind of 'lost interest' in me. I am not tragically young, I don't have LC, I am not severe (though my former life has been well and truly wrecked by POTS, hEDS and ME/CFS) and I don't pose any fascinating challenges for him. For instance--I have had some autoantibody tests that were clearly abnormal but he has brushed those off. Same with SS-A and SS-B, although I have the symptoms. I know that those blood tests are not particularly accurate and if there is a suspicion of Srogren's clinically it makes sense to do a biopsy. Mostly--it seems like there are no huge red flags, so I am now considered a routine POTS patient who gets routine check-ins and nothing more. My POTS has not changed at all, stand tests are no different to what they were when I first saw him, etc. In addition, last year I had a dexamethasone epidural for SI joint pain and while it took two weeks to kick in, the pain subsided at about day 14 and stayed away till day 26. Strangely, from days 14 to 26, I had complete remission of all POTS signs and symptoms. As the pain returned, so did the increase in heart rate, pre-syncope, etc. I saw him during this window and he dismissed any connection--no curiosity-- and suggested that, well, basically, I was pretty much cured and we could titrate off all meds and send me on my way if it held. I like this neurologist and am grateful for his attention and experience. He has taken me seriously, he has been willing to try most of the POTS-related meds and he is both knowledgable and kind. He does not recognize ME/CFS, though, and routinely tells me I need to walk more than 60 minutes every day and really 'huff and puff.' I just ignore what is contraindicated by my other conditions and take what I can from him. I feel like the returns are diminishing. So here is my question: what in your experience does Dr. Grubb offer that would be different? That might or might not make it worth my while to travel to Toledo? I know there is no magic bullet or we would all have better things to do than hang around DINET! But given what you know, do you think he would have any thoughts/approaches that might differ from my neurologist? If you also have ME/CFS, I would be interested in how you feel he holds that as a co-occuring diagnosis. Thanks for any input or ideas any of you can share!

Which is totally exciting!

@Sushi--this is really hopeful news! I am very happy for you and hope that the improvements hold. Wouldn't that be cool?

I had the same experience. It is frustrating and sometimes worse. Do you have ME/CFS as well as dysautonomia @MikeO? I think Mestinon is doing something for my ME--and I am taking exactly the same dose you are--but not sure about the POTS/NMS. I don't understand why since I have no antibodies related to acetylcholine that I know of..... But, it works (or I should say--it is working for now) so I am going to keep taking it, like you.

It's much easier to get a scrip for a supine MRI and a LOT easier to find a facility that does them. Like all of them. Whereas the upright is really if you suspect Chiari or CCI I think. And it is pretty hard to find facilities that have the right machines to do uprights. Probably best to ask your ortho what he thinks might be the most useful? Where do you hear the grinding and clicking? What joints? Or is it all of them? Me too. If it is, if hyper mobility of some sort is involved, then you might indeed want to look at an upright. Obviously when you are lying flat, your bones just stay where they are, but if the ligaments are loose, then they don't hold the vertebrae properly when you move, and that is what an upright can spot. You know what else-a CT with rotation might also catch that.

I had an upright MRI in neutral, flexion and extension in order to look at cranio-cervical (CCI) and atlanto-axial instability (AAI). Most of the neurosurgeons who address these conditions (which seem to be causative of a sub-set of ME/CFS) do prefer the upright MRI --I think because it is possible to see the spinal structures in the circumstance where there is most pressure put upon them--and thus see brainstem compression. With flexion and extension, they can measure relationships between structures and again look at what might be compressing critical neurological activity. While this is not directly related to POTS, there are sometimes very important connections between POTS symptoms and cervical anatomy. It also would serve to rule out that kind of mechanical basis if the MRI did not find any anomalies. My POTS started with whiplash and a concussion, so I had strong reason to suspect that something in my neck was responsible for--at least--the initiation of dysautonomia. And I have had occasion to have an Atlas Orthogonal adjustment that made me 100% well. For about four hours. So...while I haven't found the solution (I wish!) I do know that my atlas is unstable and putting it back in place relieves my POTS in toto. Can't figure out how to keep it there, but it is worth knowing and the upright MRI might give you some useful info as well. If you haven't, check out Jeff Wood's story here: https://www.mechanicalbasis.org/mystory He had POTS prior to cervical fusion and is an advocate of upright MRIs!

So sorry. It does seem that way, doesn't it? We get a foot up and then whatever it is we thought we were standing on dissolves under us. I take hope from people like Pistol who seems to have found some stability through long trial and error. I hope that for you too! May your cold pass soon.

Here's what I have had tested, for what it's worth: ANA (Anti-nuclear Antibodies IFA) Sjogren's Ab, Anti-SS-A/SS-B Acetylcholine Receptor AB, All Paraneoplastic Autoantibody Eval. As well, I have been tested for Rheumatoid Factor and C-Reactive protein. I don't know if this even approaches being a comprehensive list of tests for autoantibodies, but it might be a good start? At least something to look into....

I'd be curious to hear what you learn @MikeO. I have had basic antibody testing done--ANA positive, speckled pattern. The others, including all acetylcholine receptor antibodies negative. So...go figure? What about you?

@MikeO--that is a very impressive list of improvements! It sounds like you found something that works for you--as long as you can figure out the worrisome side effect. Really exciting! I am pretty sure this is the one for me as well. I have tried most of the options without any luck, but at 45mg a day, this is helping me. I have more energy. Pre-mestinon, I diligently did my walking, but I always felt like I was swinging concrete legs, yanking them up from the ground against gravity. Hard work on a flat surface. Now, often I feel as if it is fun to move. The energy is there, in my musculature and I don't have to will myself every step. I am crashing less. I get up early and by 2pm --on a great day--I stop being able to think or coordinate my body. With Mestinon, I am often able to function into the early evening without paying the PEM price the next day. This is cool. My orthostatic symptoms are much reduced. I actually rarely feel as if I have POTS. My heart rate still goes into POTS territory when upright, but it goes up 30-35 bpm vs 45 or 50. That makes a huge difference to my experience. I was having 10-12 pre-syncope episodes each day and now I have one. if any. This is an interesting one for me. I do think I have the same, but also, I have noticed moments where I felt this extraordinary sense of well-being. In my body. Just a: 'everything is alright and life is good' kind of feeling. Now....that is something I vaguely recollect from a long time ago but have not felt at all since I became ill about ten years ago. I am fine without it, but ....it is sweet and if Mestinon is helping me have those moments, I'll take them.

Hi @Ranga. Good questions. I wish I knew all the answers! But I would say that I have most--not all--of the symptoms you describe, have been diagnosed with Atlanto-axial instability, not with CCI (though I get substantial relief of symptoms like blurred vision, brain fog, pain, from cervical traction, so who knows?) and with a long term low back/leg issue that has recently been identified as stemming from the SI joint. I believe that the cervical issues I have, along with the pelvic floor problems, are very much connected to the SI issue. I had a steroid injection two weeks ago in the SI joint. Pain is down quite a lot, AND my energy is increased by about 35%-45%. Brain fog has mostly gone. POTS symptoms are not bothering me much at all. Normally I will have up to 12 pre-syncope episodes in a day. Now... I sometimes have one, sometimes none. I am wondering how long this is going to last, and enjoying it while it does. But I do have a sense that all of these are very much connected--one to another and also to the larger symptom picture I have. In addition, I have looked a lot at SGB. Heard from a lot of people who have been experimenting with it. My own conclusion--and obviously no one knows what is going to work for someone else--is that it is not worth it for me. People with long-term ME/CFS do not seem to be getting much benefit from it. Some Long Covid folks are seeing results, which is great, but I have a decade of dysfunction and am not all that optimistic for myself. There is a Facebook group on SGB for ME/CFS where a lot of people who have been experimenting have posted their experiences. You might want to check it out if you haven't already to flesh out what we are learning about it.

@MikeO--not that I noticed. It did tank my heart rate into bradycardia territory when I went up to 60 mg/day, which is territory I hover near all the time. I am ok with 50 bpm, but 45 or under makes me feel like crap and doesn't seem advisable. On 45 mg, I seem able to maintain 50 bpm or thereabouts. Has it affected your bp?

That is good news @MikeO. Yes, you are right--it has a short half life, which is the good news. And the bad. But I personally feel a lot better when messing with my biochemistry to do it in short increments. I really think it might have bumped me up 15% in terms of function and maybe even more when I think about the difference between accomplishing something using vast amounts of willpower and simply having the ability to do it. So much easier. Not a cure by any stretch, but I think I am finding a few more moments where I feel some enjoyment of life. I really hope you can figure it out so that you can stay on it. And @Sarah Tee--sorry about the infusion. So disappointing when we look forward to an intervention that is going to help and it does little, nothing or makes things worse. I am glad I returned to Mestinon and I am just going to ignore any suggestion that I increase my dose. I am long way from the so-called therapeutic dosage, but I am at my own upper limit and it is good to know that. Good luck if you give it another go. Let us know...

I'm impressed that you are still fiddling with this, @MikeO. I hope you can find the dose that gives you that lift without the side effects. I have been playing with it myself and have gotten more benefit from Pyridostigmine than any of the many other drugs I have tried for POTS. But I have found that anything over 45 mg per day gives me air hunger and muscle twitching that are too unpleasant to maintain. I've been up and down and off and on, but think I have settled on 30 mg in the a.m. and 15 at noon. Of course the positive effects wear off by mid afternoon, but at that point, I am satisfied if I have managed a halfway decent morning. It is quite a juggling act, though, isn't it? Good luck!

Best wishes with this, @Sushi I hope it makes a big difference in your life and we will all be curious to know how it goes.

Incredible photos, @Sophia3! I am both impressed and grateful.

@akj--repeating what @DysautonmiaMattexpressed. I am glad it was just very low electrolytes, but that is scary! We just do not know how our bodies are going to react..... I had the bivalent booster--Pfizer--three weeks ago and ....absolutely nothing but a sore arm. It was my fourth and the other three had varying levels of impact, but none was easy or without setbacks. This one was. So...just wishing the same to anyone and everyone else who goes for it.

Coincidentally, I had some minor dental work done yesterday and I only though to ask the dentist about the anesthesia after it was injected. Epinephrine? No wonder I feel like I do! I had no idea previously that they did that, but was reeling from it all day. And then happened on this thread. I am grateful for the advice and thoughts and will take them all into consideration when next I sit in that chair.

That is really interesting @Sushi

Another vegetarian, and I love to eat a big salad or pile of veggies for dinner. But I have found that I do so much better if I don't eat big meals, and if my last real meal is about 2:30 or 3:00pm. I first dialed dinner back to 5pm, then 4 and now even earlier. I tend to go to bed at 7:30 and sleep at 9;30 or so, for context. Oftentimes I will have something substantive at 3pm and then a tiny snack--a piece of fruit or a couple of crackers with cheese at 5 or 5:30 if I am hungry then. Like you, @Machair, I can't sleep if I eat later and I also find that my digestion in general is worse if my body is trying to do it while I sleep.

Good luck today @Bailee Let us know what you learn!