Jyoti

Just wondering if anyone has encountered this and/or if anyone can opine on preferred electrolyte boosters. My neurologist suggested either Vitassium or Normalyte. He gave me some samples of Vitassium, which I used while waiting for the Normalyte to arrive. I got the impression he thought the Normalyte was superior so I thought I would give it a go. No problem with the SaltStick (Vitassium) and perhaps some improvement. So I was excited to get started on the Normalyte. Whoa..... I got so sick (dizzy, confused, shaky, super tense upper torso and neck) by the afternoon of the first day. I thought...well, it may just be a coincidence. The second day--same. Third day (today) I decide to cut back dramatically but I still had about half of one pack and sure enough, two hours later I felt awful. The weird thing is that I kind of suspected I got too much potassium on board. That is a tough one since hyper and hypo kalemia have pretty similar symptoms. I have had problems with hypokalemia in the past, but it did not make any sense to me that I would experience low potassium symptoms after having ingested a significant dose of it. Unless...the salt was unbalancing things. In the end, I did try some V-8 one night and dried apricots today and both times, adding a source of potassium seemed to ease things. I am going to steer clear of Normalyte for now, but am curious if anyone has experienced anything like this and/or if there is an obvious explanation I am missing. Thanks!

This was exactly the kind of reaction I had. At one point, my ox sat was around 88 and I wondered if I should do something. But it got better. I am hoping you will as well, @MTRJ75, soon!

This is fantastic to hear, P8d! It feels great, doesn't it, to be on the other side of #2. I am so grateful that I and many others have gotten here. You now too! This was so helpful for me to read. I also came upon some information from MEAction today that I thought I would add to the picture that is emerging. I know that many of us here do not have ME, but some do and I think there is enough overlap in our symptoms (thanks Peter Rowe!) to justify sharing here: Obviously, we all have to consider our own risk factors and discuss with healthcare providers and family what feels right for us, but unfortunately we are definitely in a position that is between a rock and a hard place with this one.

Just wanted to follow up with the occasional encouraging news: my second Pfizer was almost entirely without side effects. I am ten days out from it now and really just had a sore arm and slight extra tiredness the day after. Loads of water and salt. Beyond even the prodigious amounts we must usually take.

Oh, man....you are having a really rough time of it @Abe. All good wishes that this spate of terrible health resolves very soon!

@Abe--you are getting lots of advice and opinion, so I kind of hate to pile on, but I am trusting that you will pick and choose like someone at a banquet, taking what appeals and leaving the rest. I did want to say that I am glad to hear that you saw your chiro and got the X-rays, guidance. That is really good even though the information was --I am sure--not all that welcome. I wanted to mention one other thing that helps me sometimes and while it may be totally obvious, I often forget it. Ice. On my neck. I am pretty certain that whenever I get the tiniest bit of inflammation there, things all over go haywire, so icing it tends to calm things down a bit. Good luck.

@Abe--reaching out and sending good energies and best wishes. It is soooo hard to be stuck inside a body that is malfunctioning so actively, like yours is right now. It is almost certain that this will calm down and you will feel better, but in the meantime, I know exactly what you mean about turning to God. Sometimes, that is the only (and best) option. What did the hospital say when discharging you? Is there a follow up plan? How long till you see someone else? (I mean--a doctor--I know you are in quarantine! What kind of terrible joke is this?) So keep breathing, slowly and deeply if you can. Do you know the box breathing technique? Or other breathing patterns? There are a lot of them--some work better for me than others, but it is definitively a good way to quell some of the anxiety. Wishing you peace--in body and mind-- and soon.

I finally was able to see a sensible doctor with expertise in dysautonomia who diagnosed POTS (of an ordinary, non-hyper sort) and suggested that I start out with increased salt and water, along with the compression hose I already wear. He mentioned 3-4 litres of water a day as being a minimum and additionally told me that his wife, who has POTS, often drinks 6 litres a day. I am the sort to 'go for it', so I immediately began trying to manage 6 litres a day. Then I started wondering about electrolytes, and the danger of washing them all out of my system. The vast amount of water is DEFINITELY helping (hurray!) but I wanted to inquire here about how much others of you drink and/or consider healthy and therapeutic to drink. I am sure it varies, but I am curious about the range. If you could share how much you imbibe or what your daily goal is and how that works for you, I would be grateful.

@p8dThanks for sharing this really great info.

Let us know @CallieAndToby22 what your doctors recommend. This is such an challenge--trying to figure out what to do in relation covid-19 on top of everything else!!!

I had a pretty severe flare after dose #1. I was actually ok for a day, then a couple days of 'normal' side effects, and then POTS went to town. I couldn't get out of bed or even sit up in bed for about 8 days. It was absolutely awful. I just saw a cardiologist who is also a dysautonomia specialist who also happens to have a wife with POTS. Since my next shot is scheduled for tomorrow, I asked him if he thought the first round could have provoked such a big reaction and before I could get the words out of my mouth, he was nodding and saying, "Absolutely.' Now, I haven't seen much from anyone else who had such a huge flare after Pfizer, but I asked him if he had seen it and he responded in an emphatic affirmative and mentioned that his wife had actually had exactly the same reaction. He encouraged me to go ahead and get #2 (I was not sure how wise it would be) and just to load up on salt and hydration beforehand and be vigilant about water drinking afterwards.

@merkat30--this is familiar for me too. A couple of weeks ago, post Pfizer jab #1, I went into a terrible flare where my heart rate resting and in bed was in the upper 40s and when I got up to go to the bathroom or get some water, it rocketed up to 150 in half a minute or so. I am feeling much better now, and my heart rate fluctuations, while still pathological, are not insane. Yours are so dramatic. Were the fluctuations orhtostatically correlated? Or did your heart rate zoom up while you were sitting or lying down?

@Abe--also, because of the above--BE CAREFUL! I would --if I were you--ask my chiro to trial some gentle upward traction and see what it does for you before you do anything on your own. Necks can go pear shaped in many different directions!

More and more I am impressed by how much vital stuff is lodged in such a narrow channel and thus, how easy it is for something to go wrong.... Have you seen anything written by Jeff Woods on this subject? Might be of interest.

T @Abe-- I use comfort trak cervical traction device , it is a huge expense, though well worth it for me. I pump it up to about 20 lbs (no more!!) and sit for about 3-5 minutes, let it down and rest a couple of minutes, then back up for a few, down again and rest all for about 10-15 minutes. Sometimes twice a day. I got to try this out (there are a few brands but this is the cheapest, I think, of this particular mechanism) at my PT's. It worked well at the office so she lent it to me for a couple of weeks, which helped me decide to invest. I don't know if you could find a place to try it out, or order it from somewhere you could return it in a week or two if it doesn't help. Also useful to me in identifying my neck as a place of both suffering and relief was having someone do gentle traction while I was lying down--just very gently pulling my head away from my body. I immediately had good feelings from that movement which was part of what encouraged me to keep looking at what I could do with my cervical area and to take the leap into something more expensive than a caring friend to pull on my neck! Another thing I found of dramatic but fleeting help was a kind of chiropractic called Atlas Orthogonal. The adjustment is only to the uppermost vertebra, and done with sound waves. Again--$$$ to get started. But my first adjustment was a revelation. I felt like myself--totally--but better. Colors popped, sounds were sweet, my head felt weightless and I was gliding while I walked. Unfortunately the payoffs lessened with each adjustment, so I stopped. But still--information!

@Abe--yes, yes, yes. The weariness is sometimes the worst. Not just the fatigue, but the utter exhaustion with the whole situation, the unpredictability, the limitation and the relatively unrewarding exercises we go through to get help. I am so sorry that the last few months have been so bad. I get it, I know it. I know that blurry vision and muscle tension are just a segment of what you deal with, but I get a lot of relief for both using cervical traction. It is pretty amazing--I can go around all day not really aware of how blurry everything is--it just is the way it is--and then I traction my neck and things spring into focus. It is like the vaseline coating my corneas just disappears. And it helps with neck and head and upper back pain as well. I know that so often what works for one of us is not the answer for anyone else, but I share this as it has been a life-saver for me. Traction just tamps down the worst of the symptoms for a while and that enables me not to crash or flare further.

Let us know how it goes and what you learn. When did you get the jab? I got Pfizer on 3/19. It is scary to consider that this might have been a bad choice. But...was there a good one? Here are some initial results summarized from Health Rising: https://www.healthrising.org/blog/2021/03/17/coronavirus-vaccine-poll-chronic-fatigue-fibromyalgia-severely-ill/

I just got back from taking my 17 year old for her vaccine. She has really severe asthma, so we have all been worried about Covid in her case. She had to get her shot at a healthcare provider instead of a mass vaccination event because of her age. For the same reason I had to be there--to give consent. I was too sick to drive so we had to have someone else to drive us. If it had been anything else, I would have cancelled. The place was empty but the wait was endless. We sat/paced for an hour and eventually I just had to lie down. On the floor. My heart rate was through the roof. No other choice. It was sort of funny to see the nurse's aide come into the exam room to give my daughter a shot and find me lying on the floor. "No, no, I am fine....just a touch of orthostatic hypotension, sweetie...."

I find taking cool/cold showers has grown on me. Of course the initial couple of minutes are....breathtaking! But it gets easier. And I definitely feel better when I am not inducing tachycardia with the hot water. I'd also add @Nin that I had the covid vaccine a week ago as well and have been MUCH worse. Even after the 'immune-activation' symptoms (sore throat, spikey pains in lungs and head, heavy achey exhaustion) have lifted, I am finding that the POTS symptoms are MUCH worse still. I am normally pretty functional in terms of activities of daily living if I am careful. These last few days I wonder: did I make a huge mistake? Is this vaccine going to leave me bed-bound? Let's keep sharing on this one..... I know that some people are taking up to a month to clear the impacts of the vaccine, so maybe that will be the case for you and me too?

I agree! It is such a slog to find someone good and then if you do, you have to pray that you keep them. I moved across the country recently and have had to start from scratch too. The first doctor I met with --highly recommended to me--was so visibly annoyed with me and all my problems by the end of the initial meeting that I just moved on. It was clear that I was too complicated for her, and feeling unequal to it, she took it out on me. Not a good start. I don't know what your situation is @Sarah Teein terms of options/insurance, etc, but I usually (and I did not do this with the aforementioned disaster) just ask and tell--I have a complex situation and history, I don't expect you to know everything, but I am looking for someone who will work with me to try out various possibilities and who is comfortable making referrals to specialists when indicated--how do you feel about that? I can usually tell--there is either a bit of reluctance which means when the rubber hits the road I am going to find myself alone, or there is a pretty clear willingness to 'work with me.' In other words, a mini-interview. Pass/fail! With the admin staff adverse, I would think seriously about @Pistol's advice to just find another practice if that is possible. We are not easy patients to have, but we can be delightful, interesting and a pleasure to know. If they aren't seeing that, then you are probably just too much in their eyes. No reason to stay for that.

@Pistol--I appreciate the perspective of your experience, though the reality is not a particularly welcome one!

Just reading all these posts and weeping. I am having a terrible day and enjoying (ha!) just about every one of the symptoms the rest of you have mentioned. It is so exhausting, so lonely inside a body that is being run amok, and I am really grateful to be able to know that I am not alone in this. So thank you all for sharing your miseries, your fears, your small successes and your experience. Some of these symptoms are indeed strange enough to make me think I must be making them up until I come across a thread like this where I learn that many others have had the same ones. It is nice to have a place to come where I don't have to be brave or show fortitude when all I really want to do is curl up and cry. I feel like I can do that in your virtual company. Thanks!

Thanks all for sharing your observations on this subject. It was affirming in that weird way we all recognize to know that something seen as universally good can be otherwise in our experience. Arm movements, arms over the head--yes @Pistol, @Sushi--these are definitely not good for me. And you are right @RichGotsPots, it can be done lying down. I think it can even be done mentally alone. If one wishes to. I think I was just feeling crazy--why would three days of 20 minute gentle and loving movement cause me to be considering the ER? So...thank you!

I can't imagine anything more beneficent than qigong--it is gentle, moderate in pace, flowing, energy-moving. I love the idea of it--it just feels healing. But recently I have begun to suspect it is actually exacerbating my dysautonomia. There is, of course, the standing in one place that isn't good at all. But I have had a massive crash--bad enough to nearly send me to the ER--just a few days after re-starting a qigong practice. Seems kind of crazy, but as I am sure you all understand--when things go bad we have to comb through everything we have done, not done, eaten, drunk, thought.... When I google all I find are celebrations of how good it is for people in our situation. I was wondering if anyone here has any experiences with it--good, bad, indifferent--that they would care to share? Thanks!

I have had the same experience Clair. I am not terrifically deconditioned. I can walk and ride a stationary bike and do some Pilates. I thought, and my doctor thought, the pool would be good for me and that sounded reasonable. I would get out after a short swim about as dizzy as I get, nearly pass out in the shower and be unsafe driving home. I had to admit, after a while, that delightful though it felt in the water, swimming was not something I could do safely to increase my strength or cardio wellness. The pool I swam in was relatively warm, but outside. I wonder how it might work, swimming somewhere cold, like a mountain lake or the sea?