Amyschi

I actually do have a Kardia, thank you for suggesting that. You just download the app and put it on your phone, if anyone is interested, and just place your fingers on the device and it takes the EKG; pretty easy, although quite frequently I do have trouble getting the signal, Only drawback, but in case anyone is reading and has that problem, I finally figured out that if you hold the device right up to your phone's microphone, it is much better. There is a paid level, where they offer a better 6-lead device and it also is programmed to allow detection of more abnormalities, but the basic will detect normal sinus, tachycardia or bradycardia for free.

Thanks so much, Bumpkin. You understand it completely, and your description is right on. So right about not knowing when and if to seek out help. Wouldn't it be nice if someday they invent a machine you could just hook up to, like a BP monitor or EKG, to let you know whether something is going on that is serious and requires immediate help? You give some very good tips on what has helped you - thanks! Also interesting that VNS has helped. I have read a lot about the vagus nerve as it relates to neck issues, which is a definite issue in my case and I believe contributing. Good luck in your continued journey.

Thank you so much - I appreciate you responding! Interesting about your d-dimer results; shows something is happening I believe you are right about the cerebral hypoperfusion as a possible cause - maybe the body is sending out a "panic signal?." What is confusing to me is that I wake up with this feeling around the same time - makes me think it is an adrenaline release. Good luck to you.

Bumpkin, Could you explain further what your feeling of "dread and like you are dying" feels like?(although that is an excellent description). I have had dysautonomia for many yaars, but have just started getting this feeling regularly for the past few months It is the scariest thing I have ever experienced. It is difficult to describe. I started out waking up with this sensation along with internal shaking and sometimes tachycardia, but now I can feel it at any time of day - it come over me like a wave and definitely feels like something physcial that overtakes you. . Is this what you experience?. I have read too that you should not ignore this symptom and seek immediate help, as it can be the body's way of warning you that something major is happening. I'm sure you are younger than I, but at my age of 65 now, it is more concerning. But Thank you.the fact I have gotten it so often is a little reassuring. My norepinephrine levels have been high in the past, so assuming it is part of adrenaline surge, but just don't know.

Buddylove, so sorry you are feeling so alone. I am also an older folk, 65 almost. I was wondering if you would mind sharing what you experienced during the panic attack while asleep. I had an experience upon waking up this morning that was truly frightening, and just trying to find someone with a similar experience. I have been routinely awakening with feelings o internal trembling and feelings of anxiety every night like closework between 4 and 6 am, but this morning awoke to a severe case where I truly felt like I was going to die, tried to get up; but had extreme weakness, tachycardia. It is hard to discern what are usual dysautonomia symptoms and what is new- onset panic attack. To lschwartz, so sorry you are going through this. I have had dysautonomia symptoms for many years and can testify that any strange symptom can happen for sure, but this must be terrifying. I notice also lately that my breathing just feels off and harder - not shortness of breath per se, but just off. One thing I have noticed, and wondered if anyone else has, is that I can no longer drink, through a straw. After a few swallows, it feels like I can't breathe, have to stop and take deep breaths. This also is scary because it is a new finding and there is no explanation. In trying to find an answer, I did read that breathing patterns are altered with dysautonomia, so you are likely correct in questioning whether it is a dysautonomia thing. Wishing you answers. .

So sorry for what you are facing. Such good advice from everyone. Will be thinking of you, and follow up to let us know how you are doing

Thank you. Glad it helps you. Can I ask about side effects?

Well, its one of those days obviously... meant "normal SITTING", but I'm sure that was obvious!

Pistol, thanks for sharing your meds. I am so sorry those spells lead to such extreme symptoms, causing your disability - they are indeed unsettling, but it is of some relief to have a possible explanation. My GP is starting me on a low dose clonidine, as I don't tolerate meds at all, so we'll see (I need to find a new neurologst I know, and it would be better for them to prescribe, but we'll see). But will keep your combination of meds in mind for reference. Yes, your levels definitely indicate the hyperPOTS. Mine was normal standing, but 953 standing. Not over 1000, but I guess meets the criteria. I went many years without noticing this hyperstimulation, very odd, but it is a bear to deal with in additional to the regular orthostatic intolerance, GI symptoms, etc. Take care.

Thanks to all for these replies!

We do sound alike, Pistol. But you have so many GI issues, so sorry. Thanks so much for the good tips. Can you refresh me as to what meds you are on for the hyperPOTS? Also, going through a really hard period, and wonder if you get symptoms like this: waking up every early morning with internal shaking, tachycardia, and extreme anxiety? That then sets up the whole morning. It is like you can actually feel the norepinephrine flowing through? I also have chills and tingling/paresthesias all over, which I suspect is SFN, but have not had the biopsy for this (diagnosed with polyneuropathy). This symptom complex is so disturbing and strange, just wondered if you (or anyone else who might read!) has experienced.. Also wondering what your levels have been, and if you ever retest it? You are always so much help to all of us, and we appreciate.

You're right! Keep up the good fight!

Hello, Just wanted to post a question to those who may be on acid-blocker medications with stomach issues (either H2 blockers or PPI, or even others such as antacids or sulcrafate if you have experience with those) and any side effects and ability to tolerate. Looking for one that may be easier to take. Thank you for any input

Oh, thank you so much for taking the time to post this. It encourages me to try it. Along side the Hyperpots, I also have a longstanding chronic dizziness condition, and anything I have tried, even Pepcid, has effected me, but all one can do is try I guess. I have been trying to check patient review forums to see which one seems to be easiest to take (which is probably a mistake!), so this input is very helpful. Can I ask what your issues are like? My main issue is burning in the stomach, most pronounced after eating, but I have also been shown on EGD several years ago to have GERD and esophagitis (so how it relates to the POTS, I don't know, but do know that when the POTS is active, the stomach is much worse). Just wonder how it compares to your symptoms, Do you have gastroparesis? Hope not. (I think you might have said earlier, but sorry, I don't remember). Luckily, I don't seem to have that, just always upset. Think I may post a topic to see who is on stomach med and how it effects them! Thanks again.

Wow, extremely glad for you as far as not having the stomach upset, as it is miserable on top of other symptoms, and interesting that your case would suggest a neuro basis underlying it. I just posted in another response what I was reading about, that when the ANS is dysfunctional, it affects everything. Thank you for response.