Jyoti

Maybe someone else here has a better idea than I do. In fact, I am almost positive that that is the case.... However, I found myself wondering about neurally mediated syncope (NMS) or orthostatic hypotension. I know that the latter is supposed to NOT be a part of POTS, but I also know it is for many people. Including me. The worst thing for me--and I also have NMS along with POTS--is the pre-syncope all day long. I am not suggesting that is what is happening for you, but make sure you rule it out if you haven't already. I see you are taking a decent dosage of corlanor. That made me hugely light-headed when I tried it. I had trouble sitting up in the afternoons after my second dose (I was taking less than half of what you are, by the way), much less walking around. It is not supposed to affect blood pressure, but it affected mine and although my cardio told me it was impossible I did find several papers that confirmed it is unusual but certainly happens. In any case, that light-headedness sounds like it could be linked to a drop in bp to me. But as I said--I am sure there are people here with a lot more insight than I have.

Thanks @MikeO for your update. I am trying not to be too hopeful--some of the reports I read here are so positive--but I have (of course) been down that road before! So far, no med has worked for me, but when I read of David Systrom's recent Mestinon/ME/CFS study (https://journal.chestnet.org/article/S0012-3692(22)00890-X/fulltext) I thought I HAD to give it a go. It sounds like you got some real benefit from Mestinon, and I hope that whatever combo of meds you have arrived at for the moment is working reasonably well. Such a crazy balancing act.

@MikeO Wondering what happened when you went off the Mestinon for two weeks? Did you end up dropping it or did you go back on it? I am getting ready to give it a go and am curious about others' experiences.

Hi @joe7065 I see Ramesh Khurana in Columbia MD. He is a drive for me (I am in Wilmington, so a bit south/further for you) but he may do telehealth after an initial visit. He is very thorough (1st appointment was about 2.5 hours) and he is meticulous, in my experience. He has a lab in his office to do all the autonomic testing including tilt table, Valsalva, TST. When I called a couple of years ago, his assistant told me--apologetically--that there was a wait. I was prepared for that, but not for how short it was--just four months. It was funny because she was expecting me to groan and instead I started laughing. (I had previously waited two years for someone not worth the wait!) Now...it could be longer at this point with the influx of LC POTS patients, but if you think you could manage occasional drives that far it might be worth a call. I have seen a couple of EP cardiologists in the general area who I would be happy to talk to you about, as well as some other POTS docs in PA I have read a lot about. Send me a message if you want more detail.

This is very interesting to me. I wonder what our POTS gurus will have to say about the big picture in terms of COVID vaccination when it includes this information. I am in the midst of a flare from a cold. Or...is it from my immune reaction to a rhinovirus? So.....correct, I am sure. On the other hand, I have now had flu vaccines two years running without any reaction. But COVID (Pfizer)---not good at all. I have written about it elsewhere and won't go into detail here, but it took me four months to get back to baseline after my booster #1. I have not had #2 for obvious reasons, though I am eligible. Still....I am now a long ways out from that initial booster, my immunity to COVID likely minimal again and heaven knows, I do not want to find out if getting COVID is better or worse than getting another vaccination. I still think that the aftermath of COVID for many people is going to be really unpleasant but it certainly is a case of being between Scylla and Charybdis.

Nice one! I often say rather casually: I faint if I am upright for too long, so .... (I'm going to lie on the floor now, I need to sit down, etc.) That usually works--no one wants to see me go down, and although I have never actually fainted, I come really close many times a day so I don't hesitate to conjure up that image.

LOL. You've got two legs and a belly above them (I'm assuming) just like women do, so I think Spanx'd work. And while it is possible that Kim Kardashian wears her own brand of shape wear out in public, no one else does so if you hide whatever it is under your clothes, you'll be right 'with the program!'

As an alternative to what @Pistol and @MikeO have done and found helpful (they are great sources, but in case their suggestions do not work for you @Pattie)--Satish Raj--a Canadian doctor/POTS specialist/researcher has looked into the niceties of compression garments and found that the knee socks are not very helpful, thigh highs are better, waist highs better still. This has all been studied and goes along with your doctor's advice. https://www.jacc.org/doi/abs/10.1016/j.jacc.2020.11.040 He also said that sometimes the medical grade compression garments are so hard to get on and off that people stop using them. He suggests that if this is the case, some compression is better than none and he has a lot of patients who use SPANX shape wear, which I believe can be purchased in a large range of sizes. I found that my medical grade compression garments were so torturous to put on and take off that I did in fact fail to use them daily. I DO use SPANX all the time and find them helpful.

@JennKay--I too am struggling with ectopics over the last three weeks AND just got the Corlanor I ordered from Canada about the time they started. My cardiologist recommended it before the ectopics became a big problem for me, so when I saw your post I thought I would just stand in solidarity. Sadly I have no experience to share, but I hope we can post and keep each other (and everyone else) in the loop as we see how it works. I am not going to be able to start till next Thursday, but I will definitely update as I know anything, and I hope you will as well. More to the point, I hope it helps! A lot!

Obviously, there are a load of different things that could be responsible for the horrible symptoms--I am so sorry-- you are having, and it is also quite possible, I'd guess, that there is more than one thing going on. Reading your list, though, something sparked in my brain and I thought I would mention it, since it seems like your doctors--to date--have not been all that widely informed and therefore, not likely to figure this out on their own. Tethered cord syndrome is rare in adults, but here is a bit about some of the symptoms: "In adults, symptoms of tethered cord often develop slowly, but they can become quite severe. Symptoms may include back pain that radiates to the legs, hips, and the genital or rectal areas. The legs may feel numb or weak, and may lose muscle. Bladder and bowel control may be difficult. Back pain from tethered cord is often aggravated by bending slightly forward, by sitting upright with crossed legs, or by holding a moderate weight (such as a baby or a stack of books) at waist level. This pattern of pain is sometimes called the “3-B sign” for bending, Buddha-sitting, and baby-holding." I guess you could figure out the 3-B sign pretty easily, eliminate this from the list of possible causes and move on. Or...if you are positive for any of those signs, you could read more about it.

@Bergbrow--doesn't that just suck? Something that helps, but then ... the side effects! And the itching sounds hellish, to be honest. I guess this is part of the story for many of us: finding something that helps with one symptom and does not create a host of new ones. I am really sorry that Ivabradine didn't work in the big picture for you, but I appreciate your letting me know your experience with it.

Dr. Satish Raj often suggests salt over salt tablets and advises putting however many grams you are going to take a day into a baggie at the beginning of the day, using it on your food as you go. He also mentioned in one talk that I heard that his younger patients like to make and take 'salt shots' which would be exactly what you are asking about. I personally found them a bit nauseating but tolerable. I think we all have trial various ways of getting the salt down and come up with what works best for us. I can't imagine that your plan wouldn't be worth trying.

Here is a link to a very thorough article about what substances/foods/drugs might impact catecholamine levels: https://www.uclahealth.org/endocrine-center/urine-catecholamine-test It won't make a difference to Mike at this point, but it might be useful to someone else. I was told to avoid NSAIDS for two weeks, which are not listed in this piece. The lab did not properly refrigerate my specimen and after almost three weeks I got the result: not enough urine to perform test. HAHAHAHA! As if.... So I can only assume they did not handle it correctly and could not accurately test. Good luck @MikeO

That is great, @MikeO. I agree--there is no silver bullet for any of us, and we are obliged to experiment and find the best combination of interventions for us personally. Still..one does one's best to avoid the experiments likely to result in a worsening of daily life! So your experience benefits me and I am grateful for that.

It does seem a little scary with RHR and BP as low as yours. I recently read an abstract of a study that found almost no bradycardia in Ivabradine users with low RHR but the study participants were not people with POTS or dysautonomia; rather those for whom the medication was originally intended--people with heart failure and stable angina. Basically--Ivabradine reduces heart rate a good deal in those with high RHR and very little in those with low RHR. I am still not clear at all on whether, then, it would lower STANDING heart rate for someone like you or me. I am sure there is a way to logically understand this, but I have not yet wrapped my head around it. From the abstract: "Thus, the magnitude of the HR-lowering effect of ivabradine was the highest in patients with sinus tachycardia at baseline and the least in those with the lowest baseline HR" and ... "The incidence of bradycardia ,40 bpm was 0% and 0.5% in patients receiving two recommended treatment doses of 5 and 7.5 mg bd, respectively. Conclusion: The HR-lowering effect of ivabradine is determined by HR at baseline. This property accounts for a low incidence of severe bradycardia during therapy with ivabradine." Unfortunately, I cannot copy the link to that abstract, but here is another bit by the same author: https://link.springer.com/article/10.2165/00002018-200831020-00001 I am almost inclined to give it a go at this point, but have not quite made up my mind. Good luck to you as well!

That is good news, @MTRJ75. It sucks that we are in the land of "I'll take any small improvement with gratitude" but...that is where we are. And with a few small improvements, life gets more livable. I may indeed give it a go at 2.5 mg. Nope. Nothing like that at all. My suspicion is that the doctor just didn't look carefully enough at my situation, including RHR. I think I will ask him what his thinking was and make sure that I am on board with it. The other thing is that I have found a number of studies examining the efficacy of ivabradine in POTS. Mostly it seems helpful in hyperadrenergic POTS, which I may or may not have (I think I meet the criterion of standing NE over 600, but have never been officially diagnoses as such) and in many cases, very helpful. In adults (in these studies), no adverse effect of bradycardia was noted, BUT all studies were limited to patients with resting heart rates over 60 or 70 bpm. Which, if I understand correctly, was a cut-off that came from initial trials of Ivabradine in people with heart failure where they found that the positive effects were most prominent in people with RHR over 70. Since the trials were being done to demonstrate that Ivabradine should get FDA approval, they stuck to a demographic where this was clearest. Thanks to both of you for sharing your experiences/thoughts!

I just met with a new EP cardiologist who people say is a dysautonomia specialist. He had my thick pile of records on hand, asked me a few questions, checked my pulse sitting and standing (for less than 3 minutes). He listened to my heart and lungs. That was the extent of any physical exam. He was compassionate, never questioned my experience or my symptoms and seemed kind and generally knowledgable. He asked me to try Corlanor (Ivabradine) starting at 5mg 2X a day. When I looked into this, I discovered that it is contraindicated for people with RHR below 70 or possibly 60, depending on where you look. The risk for serious bradycardia is significant. My RHR tends to be under 55 and dips into the mid-40s when I am sleeping. (My mom was not infrequently hospitalized with bradycardia, which adds to my inclination to be cautious.) I am going to try to query him about this, but my guess is that he missed this detail in the epic story of my dysautonomic travels. Does anyone here have any experience with Ivabradine? Did it work for you, and if so, how? Did it not work or have bad side effects? I am obviously especially interested in anyone who has tried it and has a RHR that is under 60. Thanks in advance for sharing anything you can.

I saw Kamal Chemali several times over the past year make presentations on SFN. He is Lauren Styles neurologist, I believe, and well-regarded by most. I don't know if you have seen him speak, @CallieAndToby, but if not, it might be worth your time. I am not sure this will speak to your experience directly, but there may be a point or two you can glean. https://vimeo.com/479508085

I take Vitassium (though there are plenty of other good options that feature the same combo) because it pairs sodium and potassium. I feel better and safer because I am getting a small bump on the potassium in conjunction with all the sodium I am taking in. Also--it is possible to have a potassium level within laboratory-defined range but to still have low intracellular potassium levels. Most doctors don't seem eager to measure this (Potassium blood test, RBC), but it is something to keep in mind if you have any hypokalemic symptoms and come up normal on the blood test. The standard blood test measures potassium circulating in the blood. About 5%--as I recall--of total body potassium is in the blood, while the remainder is in the cells as noted in the article @MikeO linked above. While measuring the amount of potassium in the blood is a good way to estimate how much is in the cells (based on the assumption that percentage-wise they are in balance) it is not always the case. One final thought--I have found over time that I get symptoms of hypokalemia at the lower end of the reference range. In other words, my test comes back normal, but I am definitely experiencing symptoms of low potassium. It is good to keep in mind that reference ranges in general refer to an average of what a healthy person will show, but are not foolproof in terms of defining one's own personal requirements and deficits.

Hi @JennKay--So sorry to hear about Covid! That is so unlucky. And such a drag. I did have a similar experience a number of years ago. Before I had gotten any kind of diagnosis (was still in the 'why don't you try meditation' from the medical profession phase). I had had a bad month, really. New GI symptoms and I was struggling to eat well, but not starving or anything. Then one night (it just happened to be Christmas night) my heart rate went nuts, my blood pressure went up to 180 over something (can't recall now) and I highed myself to the ER. There, it was learnt that my QT interval was off and my potassium very low. I felt a lot better after saline and IV potassium (2 bags as well) but the cause of the tank was never identified. I find that my electrolytes go out of whack from time to time and now that I recognize the symptoms, I can respond. At first, I was in the ER every week for a while, but ultimately saw that all they would do was give me IV potassium and saline--which was nice but certainly not worth the horror of having to hang out in an ER all day or night. I did get my doctor to write a standing order for electrolyte assays each week so I could monitor what was happening. As you know I am sure, too much is as dangerous as too little in this arena; I did not want to over-supplement. In recent weeks I have been struggling with electrolyte imbalances again and have begun to look at MCAS as a potential key to this pattern in my body. I have not gotten to a place of clarity yet, but having been well-tested (in both senses) since that initial incident without anything definitive emerging as a cause, I mostly keep an eye open for explanation and try to stay on top of symptoms when they arise. I imagine you will be home with your kids soon, which will be much better than being in the hospital. I hope you recover from whatever is going on soon!

Oh...SO sorry. It is incredibly hard when you get that tiny taste of freedom from this crap, when you feel like your (former) self, and then the rug gets yanked and there you are...back in the thick of the symptoms again. I am afraid I don't have much beyond deep empathy to offer here. And encouragement. We can't give up, and all your efforts--well we can't know what they are leading to. Maybe one good day a month? A week, in time? Or perhaps they lead to the next intervention, which could make a huge difference. Not trying to be Pollyanna-ish, because we know there is no real understanding of what is happening in our bodies and thus, little on offer in terms of dramatic and permanent improvements , but....some of us do get better and there has to be a reason why. So hang in there and don't despair too much if you can avoid it. Maybe: go find a bit of nature to soak up, and remember that this too shall pass?

I am not sure if this is what you are experiencing, but the sensation of a 'bobble head' is common with craniocervical instability (CCI). https://en.wikipedia.org/wiki/Craniocervical_instability CCI in turn, is sometimes a result of EDS and is also common in ME/CFS. Part of the cluster that many of us live with. I had cervical traction from a PT that was ....glorious is the only way to describe it. The release of that tension was blissful. Because my cervical spine and the ligaments that hold it together were not doing their job properly, my muscles stepped in. To a job far beyond their native capacity. Which has created a lot of pain and tension. Has limited my range of motion too. I now use cervical traction at home and it does relieve the worst of it. I can always tell when I have given my vertebrae enough space because my vision, which gets blurry, snaps into focus. So wild the ways our different parts are connected, work together and then....don't. It sounds like it might be well worth it for you to see a PT, but I would suggest, based on my experience, that if you can do that, you look for someone with expertise in the cervical spine. You don't want well-meaning damage done on top of what already exists.

Yes, @peachychou123--thinking of you and wishing you big improvements with all due speed. Hang in there -- and know that you took good care of yourself in the face of the too-usual dismissals. That is something to be proud of.

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!

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? 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.