Scout

@Pistol — Thank you so much for the kind words. Honestly, it really helps to know it gets better. It's so easy to feel like this is it... like it won't get better, but thank you for reminding me that there are still options, and that things will improve. It's just about finding the right balance and combination of meds. My autonomic specialist is away for July and August, so I am seeing her in September when she's back. I'm so hopeful for some progress. Also seeing my cardiologist in a month. @bombsh3ll Thanks so much also for your input and your kindness. I'm so sorry that we are all going through this. It makes total sense what you say about the low blood volume / low stroke volume, and how the sympathetic nervous system is therefore working on overdrive. Frustrating having bodies that do this, but hopefully we can adapt as well as possible. Thanks again. @Derek1987 My illness started around 10 years ago. I had a bad episode with my heart condition, and then, all of a sudden, was having POTS symptoms (I didn't know it was POTS back then). I think possibly my heart issues triggered my ANS to malfunction, or visa versa. My specialist said a lot of people — especially females — seem to have mitral valve prolapse (what I have), and dysautonomia. They think those things are likely linked. How about you? When did this all start happening?

A couple of parts to this post: First, I wondered how people went about setting up IV Saline weekly (or bi-weekly)? I'm not seeing my specialist until September sadly as she is away, but I want to discuss this with her then, and wondered how I should bring it up? Secondly: I noticed my BP always drops a lot when I lift my arms up above my head. Was doing some experiments earlier to see what positions (laying down, standing, elevating my legs etc) altered my BP, and arms above my head made my BP drop quite a bit, and made my heart rate stabilise. I'm thinking that confirms a lot of my issues are related to low blood volume. The blood in my arms would rush down to my heart when my arms are elevated, therefore meaning my heart and BP can relax. My BP seems to go up dramatically (often very high readings) whenever I do things that would send blood to my muscles, therefore diverting the blood away from my heart and potentially, that's what causes the BP spikes? (Sorry, I know that's a lot to follow, haha). Interested in what others think. I apologise for the convoluted post. It's just that a lot of folks on here have such good advice and feedback so I just wanted to hear opinions. Thanks so much!

Thanks so much @Derek1987. Indeed — at least we can all be here for each other through this! Your BP issues sound so similar to mine. It can be very episodic, but it's just... so odd. I hope that you're right and one day it gets better. We have to have hope, right?

I'm so sorry you're in the same boat @Derek1987 I'm 31 as well. We are far too young to be having this happen and it's just so unfair. It's not fair no matter the age, of course, but I think perhaps harder to deal with when we have people saying "shouldn't you be fit and healthy?" I wish I could figure out what the h*** my body is doing, but for now, I guess it is what it is. I thought for sure that laying down and not having the water hot in the shower would help, but it barely changed things. My BP is still shooting up — just not quite as high. I wonder if lifting my arms at all is causing it to go up. Anyway. I hope you have an OK day Derek. How high does your BP go?

I'm so confused and angry. I have been having lukewarm showers sitting down and my BP is still going up. I just don't get it. It comes down as soon as I lay down on my bed. It feels like no matter what I do, things just go wrong. Sorry — I'm feeling very frustrated today.

Thanks so much for the info. @Pistol Do you find sitting down in the shower helps with this? Any other tips which have helped? Really appreciate everyone's feedback.

I just had a shower and noticed my head pounding a lot more than usual. When I got out, I checked my BP and it was 127/115. It dropped dramatically as soon as I laid down on my bed. I've always had POTS episodes in the shower, heart racing, dizziness etc, but lately they are getting a lot worse. Yesterday my reading was 118/102 after a shower. I will try and have a luke warm bath tomorrow instead of a hot shower, and then take a BP reading to compare. Just wondered if many others have experienced such a severe spike in BP due to the hot water and steam? Does anyone understand the mechanism of this? Is it because the heat / steam dilates blood vessels? I'm seeing my specialist very soon and starting new medication so hoping that will also assist. Those spikes terrify me.

Thank you everyone for your feedback. It is really helpful. And you're right — I do need to be brave. I had a really, really horrible experience on beta blockers which made my hyper-POTS so much worse, so I'm sort of traumatised from that if I am honest. I got so much worse. But, as many of you have rightly said: calcium channel blockers are a different class of drug and it may just be exactly what I need. Thank you again for the support, and I'm very glad that CCB's seem to have really helped a lot of you.

I'm in hospital at the moment after a really bad POTS episode today. The cardiologist came and saw me and wants me to start calcium channel blockers. I said I'd think about it and discuss it with my regular cardiologist. The only reason I hesitate is because beta blockers actually made me far worse, so I'm really nervous about trying a new med. I realise they're a different class of drug though, so need to consider it. Wondering what people have experienced on calcium channel blockers, especially those with hyper-POTS. Thanks so much.

Hi there Sushi, I have MVP, but it is only mild at this stage, so no valve repair as of yet. I apologise that I don't have much to add to this discussion, but just wanted to wish you well! I'm sure the cath surgery will be the best way to go, especially if recommended by your specialist. If you don't mind me asking, how quickly did your MVP progress from mild to severe? Lots of well wishes your way.

I have this happen a lot, especially with big meals. Sometimes my heart rate feels like it sky rockets the second food hits my stomach. It's very odd, but I also suspect it is blood pooling to the stomach. Doctors have also said similar things. It does help to have smaller meals throughout the day, but I find that difficult sometimes. I'm the kind of person who likes a nice big plate of food!

My BP is now usually low, but can often be all over the place, and I often have spikes. At the autonomic clinic I went to at the start of the year, they said it was clear my autonomic nervous system was struggling to keep HR and BP stable, as the readings were very erratic. Today, for example, my most recent BP reading was 100/87, meaning a very narrow pulse pressure. From what I've read and been told, a pulse pressure under 30 is considered abnormal. (For anyone who isn't familiar with the term, "pulse pressure" just means the difference between systolic and diastolic. A BP of 120/80 = 40 pulse pressure.) I'm also feeling very dizzy. I'll definitely speak with my specialist again very soon, but I just wondered how common this was with fellow dysautonomia sufferers? Drinking lots of water as I know that usually helps me. Thanks for your time.

I used to be on beta blockers, but I actually was made worse by them (made my POTS worse, and also fatigue was worse). I seem to be one of the small percentage who cannot tolerate them. I may be trialing Ivabradine soon. I take some supplements which seem to assist with my heart symptoms. I'm also on some antidepressants and a mood stabiliser for my mental illness.

I'm finding it so incredibly hard to manage with this level of fatigue. I can barely type. My arms ache so much when I lift them. My family "don't believe" in what I'm going through, even though I have had several doctors confirm it. How are we supposed to cope? The exhaustion I get from the most basic of tasks, is just so difficult. I'm feeling frustrated and defeated. For those out there who get bad fatigue, what do you do to try and remedy it? Thank you for reading.

Has anyone had any issues with getting the flu vaccination? I ask only because, when I was at the specialist for my POTS, they asked me if I had the flu shot prior to my initial onset / symptoms. They said they are seeing a potential correlation, and have had some patients either relapse badly after the flu shot, or have symptoms for the first time directly after it. I want to make it clear that I am personally pro-vaccination (for those who can get vaccinations, as I know some can't), but I also found it very odd and interesting that two leading specialists at a very renowned hospital, brought it up to me. They also mentioned how Guillain-Barre can occasionally be caused by the vaccination, and how that then can cause a domino effect which can lead to POTS. We're coming into flu season where I live, and I am just researching whether to have the shot or not — weighing it all up. I've never had one before. I really will not be able to cope if my POTS and fatigue gets any worse. Any feedback very welcome. Thank you!

Hi Derek, I really relate to that — I have these sudden spells, too, and have fainted a few times because of them. Recently, one occurred out of nowhere and I was surprised I didn't lose consciousness. I felt very hot, and my whole body was pulsing. My brain seemed to sort of "freeze" and not work, and it felt like the floor was falling from under me. The symptoms you are describing do very much so sound like Dysautonomia / ANS dysfunction (of course, I'm not a doctor, though). Do you have a specialist you've seen?

I apologise for this subject being potentially morbid, but I am curious — how do we know when to call an ambulance / go to ER, for chest pains, heart related issues, etc? I have been to ER (and in the ambulance) countless times for severe chest pains and palpitations, but never has there been anything shown up as "bad" for my heart, etc. They run blood tests for troponin, do EKGs, etc, and it all comes back as fine — despite the fast heart rate, which they treat. But these symptoms I experience are truly severe, and would send a person without Dysautonomia to the ER, without a doubt. Everyday, I have chest pains — often very bad ones, sometimes a severe pressure on the chest, and most days I have pronounced tachycardia. I've been checked over by a cardiologist, who I see twice a year, and he assures me my heart, itself, is healthy. My father had a heart attack very young, in his early 40s (luckily he survived and is still doing well, over 20 years on), so I have to admit: I am concerned that one day, I'll just palm off these symptoms as another Dysautonomia flare, when, in fact, it could be a heart problem at one stage. I can't go to the ER every single time I have a flare, because that would be several times a week. Any advice on how to differentiate POTS symptoms and chest pains, to actual heart muscle struggles? It's all very difficult... but I believe that forewarned, is forearmed. Many thanks, and have a lovely day.

Yes, I get the shakes, too. It's really no fun! Sometimes, my teeth chatter because I am shaking so much. I recall one episodes where it felt like I was having convulsions. I second what folks have said above: sit down (or lay down, better yet) wrap a blanket around you, and — if you can manage to make it at the time — drink something warm. Just to bring some comfort to yourself, whilst the adrenaline works its way out of your system.

I am wondering how common this is? I get — and increasingly — irregular heartbeats, but it seems to only be when I am either sitting, or getting into bed and lying down. Sometimes, it happens when I sit down to eat, after I have had a few mouthfuls. I've had several times recently, where I will have a succession of 3 to 5 PVCS (they may be PACs, but they feel lower down, so I am assuming PVCs), and then my heart will race very fast, for a while after, almost as if to reset itself. It always feels so intense when it happens, this sudden, violent thumping in my chest, and then, slowly gets back to normal. Curious how common this is? It can be quite startling.

I get nausea a lot. Sometimes, very severe. Peppermint tea helps me a little. It's certainly not a cure, but it calms my tummy somewhat until the nausea passes.

Just wanted to second what a lot of folks above have already said. I similarly get a significant rise in diastolic when exercising, but not always. It really is very odd, and I think there are so many variables regarding what sets off a surge etc. Make sure your heart has had a good check over by a cardiologist, and, if all is well there (which I am guessing it will be - it seems that most people with dysautonomia have fairly healthy hearts) then you will likely need to try some meds (beta-blockers, or perhaps clonodine. A specialist will need to help you with that) which will bring it down and help in that area. Sending positivity your way!

I relate to this a lot. Just the other night, I had a "run" of PVCs - perhaps six or seven in a row, which I think, technically, qualifies as non-sustained ventricular tachycardia. My cardiologist is not concerned, but wants me to keep a note of them, and to see him if it does increase. I also get the chest pain / tightness, and squeezing. It is the symptom I probably hate the most, because it can be very scary. Your symptoms definitely can be caused by dysautonomia, but do always run this by your doctor / specialist. Dysautonomia can truly cause all sorts of weird, and sometimes scary, symptoms. I really hope you start to feel a bit better, and get the answers you need.

Hi there, Just wanted to let you know that I have this happen quite a lot, to be honest. And, often quite badly. I regularly get tingles down my arm, too, which can be scary. As the others have said: make sure you see a doctor (and even a cardiologist, just to be safe), but I would wager it is Dysautonomia related. If in doubt, however, see someone. Take care!

Hi there, I have mitral valve prolapse. It's not severe, but I've been told we will need to keep an eye on it. Also: I have the exact "bubbling" sensation you speak of! It's very odd and hard to describe, but you described it very well I think. Very strange and "gurgling", sometimes, almost a grinding feeling. I am not sure what entirely is caused by my MVP, and what is caused by my dysautonomia, but I do know that they often overlap, and that a lot of people with one, have the other. I've also heard MVP itself can be caused by dysautonomia, but I'm not exactly sure. Feel free to ask any questions if you have any! All the best.

I do think about this a lot, to be honest. But I also remind myself that I've done all I can to try and combat these symptoms (to the best of my abilities), and seeing a cardiologist yearly (sometimes twice a year), helps keep peace of mind. My cardiologist has said there is a small chance that my heart could enlarge over time, and I appreciate his honesty, but he did emphasise that it is rare and would likely be reversible. I did have a severe episode once and my left atrium actually had enlarged a little, but it went back to normal. Keep in mind I also have mitral valve prolapse which contributes to that, and which I get monitored. I would certainly recommend seeing a cardiologist annually if you do have heart symptoms, and always address any concerns with them, but try not to worry too much about it: a lot of people have POTS and their hearts are fine and dandy, even after many decades.