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Congratulations on the baby, I hope you are all doing well. I recall a conversation with my neurologist about that and palpitations and was told it’s something physiological but don’t recall what.

If you can get to the Milwaukee area I know a couple of neurologists, cardiologist (4-6 month waits) and GP (a couple weeks maybe?) that are specialists or know about dysautonomia. Would a medical school have options? Can you call Dr Barboi’s office and ask for names/referrals?

@Pistol is correct. I saw a hand occupational therapist who told me that thee natural sleep position is the fetal position and that we tend to clench our hands. I did exactly that and now use a wrist brace with a pad for the fingers and it really helps. I also second the turmeric. I have an autoimmune disease and turmeric has really helped. @Shannoncr I had a finger that locked years ago diagnosed as a trigger finger. A shot of cortisone and it hasn’t bothered me since.

My immediate thought if it isn’t bilateral is have you been checked for Lyme? Generally though that hits big joints not fingers. Bilateral generally indicates autoimmune issues. These broad generalities.

I found that Differin lotion really helps my skin and the first ever that doesn’t cause breakouts. It even helps my chapped hands.

Oh that’s a viscous cycle. I am post-menopausal too and whenever I get an infection and take antibiotics on comes the yeast infection then fix that and on comes the BV. At times, pre and post full blown POTS, this has gone on for months. Very miserable. I do think once the immune system starts tackling one issue it gets worn down and then other fun invaders take advantage. I struggled with three colds in three months last winter. I know my POTS is autoimmune and I have UCTD so my immune system is whackadoo. I have no idea why I beat the last one, just taking it easy on exercise, never stopping though and resting a lot. For vaginal stuff lots of probiotics and yogurt. I am very worried about osteoporosis given how little time I can be upright, I did have my baseline bone density a year before full blown POTS , four years ago now, but GYN is concerned and I will likely have it done again next year. My PT has me on a strength training regime I do at home and with her to try to maintain my bones. I am so sorry that you are going through this. It really sucks and that’s the nicest thing I can say about it all. Just remember that you have fought hard to get where you were and will again. Hugs.

Thanks, Winter. My cardiologist and neurologist have said go to ER for anything 180/110 or above. Today’s was below so while concerned I am not freaking yet. Very good advice about getting referred from primary. The one thing that will send my BP soaring is dealing with insurance companies. The cardiologist did get me in next Monday and would have sooner if I had been able to travel farther to other clinics. For now I am doubting down on beta and alpha blocker and monitoring and avoiding all stress. I just wish I had a clue why this is happening other than stress over reaction.

Thanks, Lainey. Mine hit 208/95 last week when I had company and today 168/93 with another brief visit. These are seated. Clonidine helps but I end up taking a high dose and get super stupid and stumbling with a post headache. Definitely the exhaustion. No wonder I need several days off after I do anything. I hope the cardiologist has something that will help. Did you go to the ER at 196/132?

Thanks for the replies. Anybody get post-high BP headaches? Is taking clonidine or the like round the clock rather than before/during a situation that raises it helpful? I also find that I don’t sleep as well nights after an episode. I’m trying to get as much of a handle on it before cardiologist visit on June 4.

1) what symptoms do you get when BP gets near crisis levels? 2) if you have hyper POTS and OH at what BP, supine, sitting, standing, do you take an alpha blocker? TIA.

I have only had one procedure under general since full blown hyper POTS and had extra IV fluids but don’t know what drug they used.

I agree 100% with @Pistol. I,too, am home bound and on disability, it sucks (that’s not even strong enough) missing every party, dinner invitation, travel opportunity etc. I can’t go to stores to shop for anything, do laundry, cook, clean the house etc etc. I can barely walk around the block on a good day without having to rest for a few days afterwards. You need to listen to your body and learn your limits, what activity and exercise you can do that won’t set off symptoms and slowly, slowly, build up from where you are. A stronger body can withstand the changes in weather, emotional and physical hits that can be very difficult for our screwed up bodies to deal with. Read all you can, print off research articles to share with Drs open to receiving them and find a dysautonomia specialist.

I,too, am post-viral onset. I was fine one day, got the stomach flu and have never been the same since. I can tell you the hour my autonomic nervous system broke. I had no idea what was wrong just that something was seriously wrong. I found a group of dysautonomia specialists in my area after six months of seeing every specialist around. The importance of that cannot be stressed enough. After three years and some very serious issues I still am housebound but am much stronger. I didn’t sleep well for 18 months, very similar to what you describe. I had a consult with a different autonomic specialist (I am extremely lucky to have two in my city) and he suggested sleep was vital and prescribed a couple of different drugs before we hit on Remeron. That has helped tremendously. He also suggested water treadmill physical therapy which also helped a lot. I now do physical therapy once a week for strength, balance and endurance. I have been doing that for 20 months. I can’t say enough about how that helps but I still can’t be upright for more than an hour and then only once in awhile but that’s a vast improvement. Like you, at the beginning I was never dizzy, I have never fainted (3.5 years) but had a positive TTT. I still have trouble finding meds that help because as soon as I find a good combination either one or the other stops working or the weather changes or.. As Wintersown suggests, the stronger you the better able to handle these changes. Two years after I was diagnosed I was also diagnosed with an autoimmune disease and treating that has helped with the fatigue and joint pain etc. Dysautonomia is a chronic illness and requires re-thinking lifestyle and treatments. A good thing to do is document all orthostatic BP/HR readings, drugs/supplements taken, activities and symptoms. Records taken a few times a day will help your Drs figure out some things. I also suggest reading The Dysautonomia Project, it really explains things well and has chapters devoted to lay people and medical professionals. There is no known cause and treating symptoms is all that can be done now but research continues and that offers hope. What you describe many of us have experienced, you are not alone and this is a great place for understanding and questions.

I have it too. Developed post full-blown POTS. Some of mine my PT thinks is peripheral nerve issues. That makes sense given I have SFN, so part of my PT is work on a Bosu boards.

I just got my Celltrend results and also only have the alpha 1 andregenic antibodies. @Jesse or anyone else, did you find any meds that help? I am waiting to hear from my cardiologist and neurologist suggested she wants to do two more “newer” blood tests but I don’t know what they are yet.

When I take higher doses (500mg) I get diarrhea which is a known side effect https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-c/faq-20058030 I guess if you are prone to it, as I am, it’s something to bear in mind.

Thanks, everyone. I really appreciate the thoughts.

So I have very carefully identified what is raising my BP and it seems to be my beta blocker, Bystolic. This seems way weird. Anybody else have such a paradoxical reaction?

One other thing. I started at the full dose and cut back to half with my Drs advice and that helped.

Thanks. Betas seem to raise my BP which is crazy. I am incredibly fluid sensitive. I can raise my BP 20 points in half an hour by drinking a liter of rehydration salts. It would be great to ditch the stockings in the summer! I will check with my dr Monday.

I had that and terrible fatigue when I first started it. It really helps my Hr so I persevered and after three weeks or so the side effects disappeared or at least became tolerable. I really like it because paradoxically betas raise my BP.

Hi. So I have hyper pots which has gone crazy recently with very high BPs and sometimes HR also. I keep cutting back on fludricortisone and salt and fluids (oral) and increasing methyldopa but wonder if I should stop wearing my compression stockings. My understanding is that they, along with fludricortisone and fluids help with hypovolemia. Any thoughts? I will ask my Drs Monday. Thanks.

I sent my blood off to them a couple of weeks ago. UPS wouldn’t touch it and the local FedEx offices were a disaster to deal with. The sample got held up at customs for days because of paperwork that no one told me I would need. The international people at FedEx were great and the sample eventually made it to the lab. I am waiting to see if the serum is viable after the delay for testing and results. This was all after finding that the lab at the Drs office would not physically hand me back the tube for shipping so I had to scramble to find a lab (local medical college-affiliated) that would. If you decide to go this route be sure you have everything sorted out beforehand. I have all the customs forms if anyone wants them. I am hoping that everything works out so I can try IVIG.

I was told by my neurologist to never get epi. I presumed it was because it would cause tachycardia but don’t know.

Hi. So I started ivabradine a week or so ago and really like how it controls my HR. I even managed to lower my fludricortisone dose because unlike betas it doesn’t cause orthostatic BP drops. The flip side is that my already debilitating fatigue is worse. Does anyone know if that will lessen the longer I am on it? Thanks.