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.

Thanks for clarifying, and continued good luck with it!

Wow, I'm sorry, I know that's a long journey too. Not good that you developed the TN, so painful, but kind of a good benefit with the weight gain! Hope that at least is under control. Thank you.

Interesting, thanks, and you are right, I believe it is definitely connected. I was reading something that said if you have dysautonomia and vagus nerve dysfunction, it effects every system - the digestive system just doesn't receive the proper nerve impulses to digest food correctly. This was an article relating cervical instability (which I have) with vagopathy, but I'm sure it is true whether there is a structural cause or other cause of your dysautonomia. So many people experience even gastroparesis, unfortunately. Wishing you good luck with the med.

So glad you are tolerating it so far. Can I ask what side effects, as I am super-sensitive too. Also, your dosage and how long it was prescribed for? Thanks so much for response.

Thanks much - reassuring to know at least someone has noticed this, and you're right, could have to do with the vagus nerve and/or close proximity of the heart to the esophagus (with the dysautonomia, it seems it doesn't take much to set things of;f; as you were saying, even the slightest movement - I notice that too). May I ask what acid blocker you are on? Does it bother you? I am super med-sensitive and everything makes me dizzy and increases the tachycardia. Desparately need something besides antacids, but don't want to add more side effects problems.

So sorry that you have to fight that weight worry too. I feel sorry for those who need to lose, of course, but I think it is even more worrisome not to have the weight you need, as there is no cushion. Interesting on the heartburn - is that when you lose your appetite, or can it happen with flares only?? You have given me hope, though - thank you.

So glad you can get them at home. True, even if my HR isn't super bad, could still use it. I can relate to being in that state at times, mostly bedbound with weakness. It is so scary now, as I am 64. May I ask your age? If not, its OK! I am hoping to start a thread on dysautonomia in older age. I'm imaging there are not too many of us, but I am curious. At my age, you start getting more into the population that has PAF or MSA, sadly, I would imagine. I developed my dysautonomia problems in my mid-40s and really noticed it in early 50s at the time of menopause. I imagine most of you started much younger, unfortunately.

Oh my, this is me exactly. I am so sorry you have gone through it too, but makes me feel a little better that I am not alone, and that you have improved. Unfortunately I have no margin to lose. Trying to get Boost and smoothies down. Curious as to whether you are suffering from stomach upset at the time? Or whether it is strictly neuro? Thank you.

Yes, definitely the energy is a challenge too because of all the symptoms. I don't know how you did it with a little one, or all of you here that do. I admire that.

Wow, that's hard Mike. I can relate. It is a lack of appetite along with the "aversion." It's kind of a scary symptom; thus my reaching out to the group. I believe it is the "discord".