jklass44

Hmm that’s hard to say. Could definitely be a question for your doctor or pharmacist though. Have you tried different doses? Maybe you need something on top to help decrease your BP? Or perhaps these medications just aren’t for you? I think it all depends on each persons individual genetic makeup, or if there’s underlying conditions (for example MCAS). Dysautonomia patients are so incredibly unique and what works for one person most likely won’t work for another. I had to try numerous different beta blockers at crazy doses to finally realize that they were not the drug for me.

The specialist probably just wants to be very thorough and double check your results. I understand your frustration, but it sounds like your doctors are taking your concerns and symptoms seriously - it’s nice to have that support system! Glad to hear your POTS symptoms are better. Try and keep yourself distracted to avoid further anxiety (easier said than done I know!) Best wishes - Keep us posted!

Thank you to you all! So much appreciated!!

@Derek1987 I know exactly how you feel - body wanting to give out and all!! It's such an awful symptom and I have been debilitated by it many times. From what I've read and heard, fatigue is one of the top complaints from POTS patients... My cardiologist who diagnosed me said a lot of her other POTS patients also have chronic fatigue syndrome ON TOP of this. Do you have a friend or family member that could help you and your wife out during these times? My advice - don't do too much in one day! (Easier said than done, I know...) Best wishes.

For the most part also central and crushing. Sometimes a dull annoyance on and off throughout the day. I’ve never found anything that slows or stops it, just what makes it worse... CT, MRI, echos, stress echos all normal. Never had an angiogram though - I’d be interested to know how many of us also have Printzmetal Angina (due to artery spasms) on top of POTS!!

I know you said you started the BB after the chest heaviness, but have you been tested for asthma or any other type of pulmonary issue? Taking propranolol can make those conditions worse. Perhaps the virus you had triggered something?

I always get the urgency to urinate when I stand up, regardless of if I’ve already voided. I also get intermittent episodes of diarrhea and I’ll have the urgency then, but no other time. Hopefully you find out what’s causing it or if it’s POTS related! Best wishes.

Do you remember why they ordered an EMG? Was it due to specific symptoms you had/have or just simply covering their bases to rule things out? I’ve never had any autoimmune testing done. Might be worth a look...

Hey everyone. Just looking to get some thoughts or opinions from those who have been (or have thought about going) to an autonomic clinic. My cardiologist has been kind of stumped with me lately and has now suggested twice that I go and see Dr. Raj out in Calgary (about a 10-12 hour drive from me). I know he was previous at Vanderbilt - has anyone seen him before? I guess I'm just wondering if it's worth going all that way when I've already technically been diagnosed. I think my cardio was just hoping to find out the cause of my POTS in order to treat it more effectively, as it seems a lot of my symptoms have been getting worse the past year and we've had to continually increase the doses of medications I'm taking - perhaps my body quickly gets used to it and begins to overcompensate again, I'm not sure. What usually happens during these appointments? How does testing differ at these centers compared to other specialists? Do they look at the bigger picture ie all of your symptoms or do they just focus on the cardiovascular aspect of things? Is this a quick in and out appointment or did you have to stay a few days, etc. Any opinions appreciated! Best wishes to all.

@Lavender90 I had scoliosis surgery when I was 13, but my POTS symptoms didn’t start until I was 18 after a bad bout of mono. I was bedbound longer from mono than I was major back surgery... figure that one out... but we are assuming it was my trigger. Hope you are keeping well.

I too get swelling in my hands and feet, especially if I'm upright for too long... Do you deal with petechiae break outs on top of that as well? My ankles, feet and face have been particularly prone the last few months. CBC has never shown any issue with platelet numbers so I'm very curious as to what could be causing it.

That’s very interesting! My CBCs are always super boring - the only thing abnormal about them is low ferritin, but I think a lot of people with POTS struggle to keep those levels up. My MCV and MCHC are normal, but my RDW is sometimes low (although I don’t think that has any clinical significance). So yeah, pretty boring. I have no idea what my blood volume is though... Did you have yours tested? How?

I sent you a message!

I agree - there are many doctors of all different specialities that say POTS is psychosomatic. It sucks. I see a therapist for other reasons too, but I don’t think that should have been the point. Whether you’re dealing with something physical, emotional, mental, etc., we deserve to be treated fairly and if something isn’t working or clicking with a doctor/specialist, it is our right to move on and find someone who will work WITH US to help us through our symptoms. Best wishes!!

If the beta blocker isn’t working for you, or if you shouldn’t be on it because of your AV block, I would suggest at least trying the Ivabradine. It may work well for you! And as far as I know, I don’t think there are any drugs approved for treating POTS... As for your bradycardia at night, maybe just a small dose in the morning only will be beneficial? But of course talk with your doctor about dosages!

I was cautioned about this too when I first started on Clonidine but it has the opposite effect on me - I can fall asleep pretty easily after taking it but I’m woken every 2ish hours during the night like clockwork!! I don’t think it’s doing it’s job anymore lol

Welcome to the forum, I’m sorry to hear about your symptoms! I have hyperPOTS as well and was first tried on I think 6 different beta-blockers. I had drastic side effects on all of them, but I don’t have AV block that I know of. Ive been on Ivabradine since late summer of last year. I started off with 2.5mg twice a day, went up to 5mg which had my HR in the 40s consistently and I felt like crap, so dropped down to 3.75mg and I feel much better. My resting HR is pretty much normal now, however I do still have to limit myself when it comes to activities otherwise it will jump up to 120-180 (depending on the activity and how long I’ve been upright, so this is at least something I can control). The only symptom I’ve had being on this medication is the weird halo affect around lights, but it only happens at night time so it’s not a huge deal for me. And Ivabradine does nothing for BP though so I take Clonidine for that. How long ago were you prescribed Ivabradine? Have you started it yet?

The very first cardiologist I saw treated me very similar to how you describe... He said my symptoms were just something I’d have to live with and that he recommended I see a therapist. (I was barely able to stand my flares were so bad!) Didn’t offer any tips or suggestions to help manage my symptoms, no talk of lifestyle changes or medications. He literally got up from his chair, walked over to the door and opened it and said good luck. In my opinion, any type of doctor should never treat a patient this way... I think it’s extremely disrespectful. I’m sorry you had to experience this!! If you’re not happy with him, find somebody else, especially if this doctor wasn’t willing to provide suggestions or medications or even offer a follow up appointment!

Maybe it’s an IM specialist thing because the one I saw also ordered a handful of urine tests, 5-HIAA included, when no other doctor had even suggested these. Everything came back fairly normal though. Keep us updated! Like the others said, hopefully it is something easily treatable!

That’s exactly how I would describe it too - twisting the muscle. It’s an odd, uncomfortable feeling for sure and mine is also usually the right but can be both. I’ll try vitamin water as well! @JimL Thanks! I do really enjoy spinach so I’ll make sure to keep on with that. I also have some (what’s believed to be) nerve damage in my back from surgery I had years ago, so maybe one of the causes you listed has something to do with it.

I didn’t know thigh pain could be caused by low potassium. Do you have to take supplements?

That sounds awful, I’m so sorry! My first thought was peripheral neuropathy. I don’t know much about that condition but that it can affect the nerves in the extremities. I get leg pain but it’s mostly contained to my thighs and buttocks... Do antiinflammatories help? Heat therapy?

I’m so sorry you’re going through this! I also get frequent nausea. Have you checked for things like acid reflux, post nasal drip or GERD? Best wishes, I hope you find some relief soon.

I second what Jim said - best to get measured so you know your sizing before you buy as well, and I got my feet/legs measured at my local pharmacy for free Best of luck at your appointment!

There are over 100 different strains of HPV...... Some of them cause cancer, some cause genital warts, some cause plantar warts, etc etc etc. They are not ALL transmitted through sex, is what I’m trying to say. You are right, there are definitely risks with getting a vaccine, but there are also risks if you don’t get a vaccine - risks to yourself and the public. Every single person will make their own decision, but I would hope they take all of that into account first.