POTSie78

Thanks for sharing this. It really hits home for me. I wondered if all the skin problems I suddenly developed was related but none of my doctors could confirm it (other than the flushing.)

Did they see this on a stress test or just the cath?

Sorry you are still suffering from this awful virus. I'm not sure if this helps any but my husband's step-mother ended up with bad cellulitis in her legs after she came home from being hospitalized with covid-19. She was so weak and on o2 and needed to go to rehab but all the facilities were full. She ended up having home health care and eventually the cellulitis went away with more antibiotics.

I started having full blown syncope when I was in 5th grade. I would usually blackout and fall and hit my head and had chronic headaches. They checked me for everything from seizures to parasites and could only find ectopic heartbeats. They said I should eventually outgrow this. These episodes lasted through high school and after that I would have presyncope episodes. I was diagnosed with migraines at 20 and then when I was 36 I started having what they deemed psuedo-seizures triggered by several major life altering events in my life. During this I had some issues with my blood pressure being all over. Things were quiet until my 42nd birthday when I ended up in the ER with stroke like symptoms and wound up with a POTS diagnosis. I had my gallbladder removed about six months prior and my whole family and I all got really sick a few weeks before I went to the ER. The other possible diagnosis that was considered was autonomic dysreflexia but I don't have a spinal cord injury other than some begnin herniated disks in my neck and spina bifida in my sacrum. After learning about dysautonomia, looking back I believe those issues are all related to it.

I'm sorry to hear that but I am so glad that you are all getting better. That has to be scary going through all that.

Thank you @Pistol. I really appreciate your encouragement.

I'm sorry this happened. I have similar episodes but it doesn't seem to be triggered by blood draws. My worst episodes happen to me in the middle of the night when I am asleep. It's terrifying because i wake up feeling really really sick and my heart pounds so hard I'm scared I'm going to have a heart attack. I get super hot and sweat pours off of me. I feel the urge to throw up and eliminate at the same time but I'm to weak and dizzy to do anything but lay on the cold tile floor and wait for it to pass. My cardiologist says it is vagal nerve stimulation but I'm not sure why the really bad episodes happen in my sleep.

Thank you for the great info. It sounds like a really good thing. I never thought I'd go from a fit active person to this at 43 😒 I hope you get your appointment soon.

Can I ask what cardiac rehab is like? My neurologist at Mayo said I either need to see their cardiologist or at least go to cardiac rehab.

It's scary stuff and so complicated. Because I have an arrhythmia and test strips that show possible eschemia and borderline abnormal results, I have an implanted loop recorder that monitors me 24/7 with a remote I can identify times I have any kind of episode (similar process as other heart monitors.) My electrophysiologist gets a report every morning. They also have 24 hr blood pressure monitors to help diagnose these issues. Mayo set me up with one but the cuff broke lol so I still have to redo that test. I have not experienced the pauses, I have extra beats. I'm unfamiliar with what they do for that but I would think a halter or bardy monitor would be a good place to start if you haven't had one already. But..I'm no dr either.

I don't have experience with myocarditis specifically but they did find thickening of the wall muscle. I have had 2 cardiac ultra sounds and 3 stress tests since January 2020. My 1st ultrasound they found trace bicuspid valve leak. The 2nd one done a year later showed thickening of the wall and mitral valve leak. The 1st 2 stress tests were normal but my 3rd one done at Mayo was abnormal and they stopped it 4 minutes into the test. I'm not sure what it said specifically about the thickened wall but I do recall the dr mentioned there may be some fibrotic/inflammatory process going on. Mayo wants me to see their cardiologist or at least go to cardiac supervised rehab but I lost my insurance and have not been able to follow up. I have been getting weaker and its really starting to show up in my heart tests.

I labile bp. Its all over the place within minutes. My HR also does the same. I can go from tachycardia to bradycardia real fast. Matter of fact, I scared my new primary care dr when she was watching the pulse oximeter for the first time. My bp was in stroke range and my hr was all over. By the end of the appointment my bp was low. My electrophysiologist said I have an arrhythmia and that my heart races to compensate for my blood pressure.

I was given midodrine early in my diagnosis but never took it because I have labile bp. I was worried it would make my spikes worse so my doctor eventually told me not to take it. Instead I take short acting propranolol 2x a day (it works better for me than the extended) and Gatorade but have since switched to coconut water based drinks so there's less sugar. I also started salting my food and eating salty snacks and the occasional salt straight from the shaker like @Rexie. Even though I do this I don't seem to retain much sodium according to my bloodwork. I'm just barely in the normal range but if I don't do it I don't feel as good.

Thank you! Hopefully this about over but my fever is creeping up and now I have a weezy cough and every joint hurts and is swollen. 😏 praying I didn't catch something on top of the vaccine reaction.

That's fantastic news! I'm so glad you found a great doctor😁

I was nervous too! I wasn't sure how my body would react but I also didn't want to get the virus. I've been real sick with dysautonomia lately and didn't feel strong enough for a while so when I finally got my first Moderna I found I did not have much trouble. I had a little elevated HR for a day...but...today I got my second dose and it's a whole different thing so far. I have fever, chills, body aches and nausea. My HR is up some but I am not sure how much of that is from anxiety and not feeling good. I am hopeful it won't last long. I believe what discomfort I am suffering now would be nothing compared to the likely alternative. I am so glad I was finally able to get it done.

@CallieAndToby22Thank you. Hope you find a good Dr close by soon. I don't know Jax very well. My EP is in Daytona. He's been the only one that has helped me get some relief but so far it's been limited to the usual. Propranolol, salt and fluid and an ILR.

I saw Dr Cheshire in Jax Mayo's Neuro department. He deals with dysautonomia but couldn't help me. He wants me to see their cardiologist because I had an abnormal exercise tolerance stress test. I haven't gone yet because I just lost my insurance since my employer let me go over all this. Once I figure out getting insurance again I will let you know who they send me to.

Sorry you're going through this. Not sure if this helps any but here's my experience. I am not anemic and haven't had any hallucinations like that but I do see shadows and flickers in my peripheral vision of something moving even though there's nothing there. I also see sparkles all over my vision kind of like looking at a 4th of July sparkler. All of which comes and goes. I was diagnosed with occular migraines.

I finally heard back from Mayo. They want me to see their cardiologist but said I refused so I need to go to cardiac rehab. There was definitely a misunderstanding because I did not decline seeing their cardiologist. But...now I can't because I lost my insurance 😒

Thank you for the advice @CJ65. I will check out that site. 😀

I haven't had any experience with Propofol since being diagnosed with dysautonomia but about 6 months prior I had a HIDA scan and EGD and they ended up taking my gallbladder and then did a rectal surgery all with in the same week. They knocked me out 3 times and I haven't been right since. I continued to get worse until I went to the ER with stroke like symptoms 6 months later and now diagnosed with POTS. I've had many years of POTS like symptoms off and on but nothing that wasn't manageable (as a child my Drs thought i would out grow it.) From what I understand these kinds of procedures can trigger symptoms. I am hoping this is not a flare for you and that whatever it is passes quickly.

Hi @Pistol. Thank you for the encouragement. It is nerve wracking being in this position and your kind words are soothing. I briefly looked into SSDI knowing this day was possible but I haven't pursued anything at this point. I was trying to remain hopeful to get things under control and maybe a bit unaccepting that things would really end up like this. I appreciate your offer to talk this through and I will take you up on that when I have a little more information. I am supposed to be contacted by the insurance company about switching to LTD. As for the ILR I was charged $50 for 2 months worth at my EPs office and they said I would have a monthly payment. I believe that is what he charges to monitor it.

I need to vent.. As I've mentioned in other posts I was diagnosed with POTS by my Electrophysiologist and then went to Mayo for more testing. Its been nearly a month since I last went to Mayo and I have not heard from that dr who set up all those tests. I sent a message to my Mayo team asking whats next about a week ago. I know from reading the notes that I had an abnormal stress test showing cardiac impairment due to stroke volume response and severe dyspnea. I was also diagnosed with 6 different skin problems. I'm quite frustrated because I've begged my EP and primary to do something to get me back on my feet so I could go back to work before my FMLA expired. I was told to wait to see what Mayo had to say. So as of today I was let go by my employer and can not afford cobra. I have an implanted loop recorder in my chest thats monitored by my EP but as of the end of this month I no longer will have insurance. Ugh. Its such a vicious cycle when you struggle to work and lose your insurance to treat the reason you struggle to work. I do have a short term disability policy thats good for another month to help pay for my ungodly amount of expensive medication and cpap supplies but after that hopefully I will be approved for the long term policy. I am so discouraged and feeling trapped because I haven't been able to get my health under control.

I don't have a diagnosis from Mayo yet other than from the dermatologist. I am still waiting to see what the neurologist says about the tests he ran so far. The information i have is from the notes that have been put in my file. At this point I don't have a follow up appointment scheduled.