Sushi

Thanks for the reports, everyone. I plan on getting the Pfizer booster on Monday—it will be 9 months since my second shot so my immunity has probably waned. For the first 2, I followed Dr. Nancy Klimas’ recommendations ((she is an immunologist who specializes in ME/CFS/Dysautonomia) and I had very few side-effects, so I’ll do the same for the booster—not sure if I can give her recommendations here but they can be found on her website.

@sunbunIf you want to follow it yourself, the personal Kardia device gives an accurate ECG--it works with a smart phone or tablet. It also gives a computer interpretation (normal means NORMAL, but some of the other possible diagnoses need to be confirmed by a doctor). You can also send it to a cardiologist for a small fee or email it to your doctor. I always carry mine in my purse. They are on sale right now--at least in the States.

A pulse oximeter is not measuring electrical signals from your heart like an ECG is—rather, I believe, it is ‘looking at’ the flow of blood through your finger like a wrist HR monitor that doesn’t have a chest strap—not nearly as accurate as a 12 lead EGG or a Kardia. When in doubt I use a Kardia. As someone with a lot of experience with pauses, they are not regarded as worrisome unless they are over 3 seconds. Pulse ox error is common though. I also take an antiarrythmic because I have Afib without it—another pulse is that it has eliminated most of my ectopics. These are serious drugs though, and Electrophysiologists only prescribe them with a lot of discretion. And yes, the ER staff would detect any serious problem.

I had a full complement of autonomic testing except for sweating as they didn’t have that equipment. I don’t have POTS but rather neurally mediated hypotension. @Rexieposted the relevant information. I don’t have any symptoms of ADHD so it was prescribed off-label my my autonomic specialist. I took a low dose (took me about a month to titrate up to the lowest dose as it can give a lot of side-effects if you jump right in.) I had no problem with lying down as for me the half life was short and I took it twice a day. Half an hour after a dose I could be upright and walk normally but I doubt if it would work for the majority of POTS patients as it increases norepinephrine in the synapses.

I’ve had vasovagal syncope from blood draws and the experience was similar. I always lie down now. Most labs at least have a recliner. I also drink hot water right up to the draw and wear a down jacket which is uncomfortable but the combo plumps up my veins so less needle wiggling. Hope you are feeling better.

Yes, I have low BP but not extremely low—about 105-110 over 65.

That might be a brief arrhythmia—your P wave disappeared for a couple of beats. As I have Afib, I have scrutinized my own ECGs. Pauses of 3 seconds or less are usually not treated, but if they get longer that that, cardiologists take note. I had to have a pacemaker implanted. Hope they figure your data out.

Midodrine is a tricky drug and I'm not sure anyone fully understands it. My experience was similar to yours except that I was able to take a second dose (I took one in the morning and one about 2 pm) and it only prolonged the hypertension. I did well on it for only 2 weeks, then I took my morning dose, felt a bit weird (didn't realize it was hypertension) so I took the next dose and spent the next 4 hours or so with the phone in my hand debating as to whether to call 911. Of course, many do very well on it without these side-effects. My cardiologist tried me on it again about a year ago but there was no dose low enough not to give me hypertension. On the other hand, testing showed that I had an overly eager parasympathetic system (not the usual over active sympathetic system) and I benefitted enormously from Strattera which increased norepinephrine in the synapses.

I used to have this regularly. I was attending a dysautonomia support group led by specialists and they said that this happened to many and to just try to ignore it as my throat wasn't really closing up.

Congratulations! I went through cardiac rehab at a great facility. My electrophysiologist had told me to teach them how to handle a patient like me and they were really receptive and I never had any side-effects from the program. Good luck!

There are some recent studies about the association with vascular stiffness. It is late at night for me though and I don’t have time to look them up—I’ll try to remember tomorrow.

I also have hypermobile EDS but have not gone to any specialists (diagnosed by my Dysautonomia doctor), because I haven't heard that there are any effective treatments other than physical therapy and otherwise strengthening muscles. I have had prolotherapy on my knees but having it done on all my lax joints is impractical and it has to be repeated every so often. I am trying the Cusack protocol though it is too early to assess how effective it is. Good luck finding help.

I used to use one and yes it did help. Now I just use compression knee socks as the binder was a pain to wear even though it was somewhat helpful.

My pain comes from EDS. A good PT can get me out of it, but it doesn’t last. The PT’s home exercises to improve muscle tone (to make up for the stretchy ligaments) also helps a bit. I am looking into the Cusack protocol for EDS as many report that it helps them.

I believe that most who get these symptoms lower their dose and some lower the frequency.

Yes, calcium channelopathy is the one I know of, but I don’t know much.

My EP recommended it...along with an antiarrythmic drug--so, probably not a stand-alone treatment except for mild conditions. I do feel it helps though.

I use it to prevent arrhythmias. Here is a good article on it: Elimination of cardiac arrhythmias using oral taurine https://pubmed.ncbi.nlm.nih.gov/16797868/

I have found that I’ll get very quick relief from a tiny dose of Indica when I am sinking into one of those episodes of feeling that I might just die. Within 15 minutes to a half an hour all those awful symptoms are relieved. I have also used tiny doses for sleep but get sensitized to it very quickly so can only use it occasionally. I use state-regulated chocolate bars that make it easy to dose accurately.

About half of POTS patients seem to be responding to Mestinon and there is heart-related research to show why. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860548/ He is working on a larger study. The primary researcher is a pulmonary and critical care doctor at Brigham and women’s in Boston and teaches at Harvard.

Will you be near enough to go to the UAB specialist if you find his report to be comprehensive?

Maybe you could call the department at UAB and ask if they will be sending a report and interpretation of your test to your local neurologist? The interpretation and analysis is almost the most important part of the test in my experience.

When I asked about videos from UAB I hadn’t seen this thread. I poked around and see that UAB now has a clinician trained in autonomic dysfunction—yay! Sounds great. That is a wonderful addition to their clinical services. Keep us posted.

Do you have a link to this YouTube? What department at UAB is working with autonomic dysfunction? Last I heard, they didn’t have anyone after their principal clinician retired and died. I have had severe constipation since early childhood. Right now I need about 1200 mg of magnesium citrate to be regular.

It is much more than ATP, though it would affect one’s ability to produce ATP. The hypothesis of a metabolic trap has a genetic underpinning—damaging mutations that create a “trap” in our metabolic functioning. I don’t have the science background to explain but am just noting that this is a possibility that some researchers are working with.