HopeSprings

How is she doing? I'm concerned because this seems like a really rapid taper off the drug. What was it 2-3 days? Some Doctors don't warn patients that these medications must be tapered off of very slowly and if not can cause serious problems. While a drug may technically be out of your system in a few days, if you've been on it a while and have developed a tolerance (dependence, whatever word you want), a nasty withdrawal (or worse) can ensue. Keep a close eye on her. Once she is safely off, I would get still get some distance (weeks?) from the medication before deciding it wasn't contributing to the low BP, especially since it's a known side effect. The drug may have nothing do with it, but I just wanted to mention these possibilities because I've been through it and feel like I need to warn others - just in case.

This was so great and I love the idea of her charity!

I guess the problem resolved itseld because I came on and the image is there.

I've been trying to add a photo (an image) to my profile and it doesn't work. The size is okay I think. It seems to upload but then doesn't display the image. How do I fix this?

That's how I read it Katybug.

Ha Andy, beat you by 17 minutes, LOL. What are your theories???

Just passing it along. http://www.semarthritisrheumatism.com/article/S0049-0172(13)00292-8/abstract

I've been thinking along these lines too Spinny C.

I'm not so sure it comes on suddenly. Many posts I've read on this topic have people tracing problems back to childhood.

I don't understand why they haven't looked more closely at this either, considering how commonly EDS and dysautonomia go together. Andy, can I ask which Doctor is doing this research and what his thoughts are on the whole issue?

I have SFN, POTS and possible EDS. I had read that SCN9A mutation may be an important cause of idiopathic small fiber neuropathy. My Doctor agreed. Unfortunately (or fortunately depending on how you look at it) I had the testing done and was found to be negative. I think there is a lot more work to be done in this area though and they're definitely onto something. You could always have the testing which is currently available done.

It looks great guys! Congrats on a job well done!

I have both as well. Yup, warm socks to avoid the chillblains.

Oh yes, me too - my POTS definitely gets worse when I have an infection.

I went through pregnancy with POTS (probably two, but was not diagnosed with POTS yet when pregnant with my first child). I found it very difficult because it did worsen my symptoms, the dizziness and tachycardia especially. I wasn't on meds before getting pregnant because I hadn't found any that helped or that I could tolerate, so wasn't on any during pregnancy. I consulted with a high risk OBGYN and for the life of me can't remember how this was helpful. I had an anesthesiology consult while pregnant so they would be aware of the dysautonomia when I went into the hospital. In the end everything was fine with the epidural, labor and delivery. And those symptoms that were so much worse went right back to normal (my normal which is no fun, but better than pregnancy) after having the baby. I've heard like you that many people do feel better during pregnancy. I don't think there is really any way to predict how you will react. I guess you just need to be prepared for either scenario, a good support system is most important.

Oh and Chaos, now that they have repeatedly established that we are no crazier than regular people, I hope all resources will be spent trying to find biological reasons for our poor health.

Yup, Chaos I liked that too because it shows the reality of the situation. Past reports made it sound like most people get so much better which left me and others feeling like, what about me, am I just one of those rare cases, why am I not getting better? I think hormones must play a role too in female vs. male.

Yes, definitely if you're talking about POTS. It happens to me too. If you google POTS and menstruation or menstrual cycle, you'll even find blog and journal articles about this. Not sure about other forms of dysautonomia.

That was one of my favorites too, HHolmes.

I don't think this has been posted yet? This is a really good summary by Dysautonomia International of research highlights from the symposium. I like it because they made everything very easy to understand. http://www.dysautonomiainternational.org/pdf/2013ResearchSummary.pdf

Don't worry about the long post. Sometimes we need to get it out and share it with the only people who will truly understand. These are just thoughts based on what you said... the tech's husband shouldn't have been talking to you while tilted. During my last tilt I was instructed not to talk, I assume because it can affect results. Also, I don't understand how they failed to capture your heart rate - did something come loose when you were jerking around? Assuming you didn't have tachycardia before initiating medication and only developed it after stopping the beta blocker I'm wondering if there can be some rebound tachycardia- sort of a withdrawal symptom, until your body gets used to being without the beta blocker? Again, just thoughts, I'm no Doctor. You could bring up POTS with your neuro and see what he thinks. Are you comfortable with this Doctor and his plan to wait and see how this progresses? If not and you are able, you could consider seeing an autonomic specialist. I was curious so looked it up.... here's a conversation between patient and Doctor about after effects of stopping beta blocker (but of course ask your own Doctor). http://www.cardiachealth.org/ca-blog/fast-heart-rate-after-my-beta-blocker-was-stopped

My neurologist doesn't think my swallowing problem is related to the POTS or the neuropathy, but I'm thinking isn't this an ANS function? I'm sorry you're having such a hard time Suds. How were you diagnosed? I'm not sure what it means if your heart shoots up and then settles down pretty quickly, plus you have orthostatic hypotension. My understanding of POTS is that the tachycardia needs to be sustained and happens in the absence of orthostatic hypotension, but then I know people have been diagnosed with POTS who also have OH. I still don't get this. Did they do a tilt test?

I've been struggling with dysphasia on and off for the past year. It comes for a while, leaves, comes back etc. I have occasional small tremors that also come and go.

Oh this is interesting! Thanks for sharing.

Interesting Alex. I would think it's possible that since you don't have the typical AAG symptoms and there is some research that some POTS patients show low levels of this auto-antibody, then maybe you fall in that camp. I guess time will tell with the IVIG - if you respond, then I would think the AAG is significant. Sorry to intrude on your thread Spinner.