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About cmreber

  • Birthday 06/30/1985

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    Writing, reading, hanging out with friends and family, music, concerts, dirt bikes, motorcycles, snowboarding, surfing, anything outdoors. Also, geeky stuff and obsessing over fictional characters. :)

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  1. I've been diagnosed with Hyper POTS for 10 years now and I received my first Moderna shot on Saturday. Sore arm and bruising, which is super normal for me. I did find myself to be more tired than normal and actually slept a whole night without waking up lol! Other than that, no other symptoms, not even aches, headache, or chills. I'll see what happens with the second dose, as I've heard that one seems to affect people (healthy, etc) more than the first. But, as an aside, I have never had issue with flu vaccine either. I've definitely been interested in the long haulers that have gotten COVID-19. My friend had it about 4 months ago and now has POTS symptoms, which she's never had in her life. I've been seeing a lot of that in studies, so I'm wondering what the connection is. That being said, I am so excited to have started the vaccine; I've been worried about POTSies post COVID if this is the case.
  2. So sorry you've been having some issues. I was wondering myself how my body would react. I've had HYPER POTS for about 10 years now (since diagnosis anyway), and I just received the first Moderna dose on Saturday. I think I've been more tired (slept more for sure) and sore arm, but that was it. I was actually thinking today that I feel pretty darn good, so not sure if that's partially mental because I'm excited, something about it actually made me feel ultimately better, or if I finally got enough sleep! lol I do have to say that I have gotten the flu vaccine two years in a row, and also have never had an issue with that. So I think I typically don't, even with the dysautonomia.
  3. Thank you! I've been wondering about this and just got my first vaccine shot Saturday!
  4. TigerLily, sorry it's been a bit since I've been back on here. I was originally diagnosed by a cardiologist at Stanford, and then did further testing at Mayo Clinic in Arizona with neurologist Dr. Goodman.
  5. Hello! Since my initial diagnosis of Hyper POTS about ten years ago, I have had a knee surgery, and three different abdominal surgeries (gallbladder removal, emergency appendectomy, and laparoscopy for endometriosis), as well as having to get put out for an exploratory upper endoscopy every two years for the rest of pretty much forever lol. Every time, my doctors and anesthesiologists have been fully aware of my diagnosis and any precautions they need to take, and I haven't really had any issues that I know of during surgery. I feel like my recovery afterwards might be more difficult than non POTsies, but I just know that I have to have a full 2-3 days to rest and recover (outside of healing from the surgeries themselves). The last surgery I had, which was the emergency appendectomy, I had to stay in the hospital for 4 days, but that was only because of my extremely elevated white blood cell count due to the necrosis of the appendix; however, since I was being fully monitored, they did tell me for about three days, my BP was incredibly low and they almost stopped my beta blockers during that time. So it makes sense that my recovery has always felt a little long and I have to rest a lot, etc. because I bet it drops the BP significantly for a few days. Though none of my surgeries have been elective, it isn't anything that would keep me from a surgery, at least from my experience. Of course, as someone above mentioned, we all are different, and it truly is impossible to know how the same thing might affect you. I do know from talking to my friend's step dad, who is an anesthesiologist (and was mine for one of my surgeries!) that life threatening reactions are pretty rare, in his experience. I will note we are in a small town though! If you decide to, wishing you the best of luck and a speedy recovery!
  6. I know for me, when I first was diagnosed with POTS I was experiencing incredibly horrific panic attacks (seemingly out of nowhere), the typical increased heart rate that all of us have, huge blood pressure spikes when standing up, and terrible pre-syncopy. I finally went to the mayo clinic to see a neurologist, and after lots of testing, they determined I have HyperPOTs. The biggest indicator for me was the significantly elevated blood pressure upon standing, whereas low flow POTS people seem to have blood pressure that drops significantly. Now, I *do* get low blood pressure too from time to time, which can be confusing (though I believe it is due to blood pooling in my legs) but, especially unmedicated and in the beginning, my blood pressure would go really really high.
  7. HyperPotsie here. Coffee does help me. In fact, when I had originally seen my neurologist at the Mayo Clinic, he suggested at least a cup of coffee or caffeinated tea first thing when I get up. I do think it has to do with getting the blood pressure up. I have noticed a pretty big difference on the rare occasion I don't have a chance to have coffee. I have to be careful though, if I have too much, it can lead to panic attacks, probably from over stimulating my system. So an interesting line to walk!
  8. @Pistol, thanks so much for the input! When I was young, the diagnosis had been thrown around, but nothing ever came of it. As I got older, I didn't ever think of it again, until recent therapy work. I have the same, problems with concentration, forgetting things, and being unable to finish large tasks because it is just too overwhelming. Even sorting through the mail sometimes is too much! I thought for a long time it was just me, or perhaps a component of the POTS, but as I've been researching, more and more I truly think it is adult ADHD. I am currently on metoprolol and zoloft (SSRI), similar to you, but it is interesting that the stimulant is actually so helpful for you. It does make sense though, because for me, coffee doesn't make me hyper or upset my hr or bp, it just helps me focus and actually seems to calm my brain some! It's really helpful to know this has been working for you!
  9. Hello all! I have been living (and coping pretty well) with hyper POTS since the end of 2010. I’m still on a low dose beta blocker as well as Zoloft, which both really seem to help, along with high salt and lots of fluids. The thing is, I have recently, through therapy, etc, been realizing that I may have high functioning adult ADHD. Does anyone else share this dual diagnosis? It is my understanding the ADD stems from a lack of dopamine and norepinephrine, but then I am wondering about medications for ADHD (typically stimulants) adversely affecting the POTS since mine is the hyper form. Just curious if anyone is currently dealing with both? Thanks!!!!
  10. I wonder if it is just us, or something tied into our other issues. I stopped all of it, with exception to orange juice, etc, and all rash symptoms went away, so I think I"m going to have to chalk it up to a new intolerance I never knew I had! lol. Seems like that happens a lot with POTS!
  11. Hello! I have recently started wondering if I have some sort of reaction to Vitamin C, or maybe just a component in the supplement form. I have suspected that I may have MCAS, at least mildly, along with the hyper POTS, and I am wondering if anyone who has this has the same sort of reaction. I was put on vitamin c while I was on a steroid for bronchitis and my face broke out in an itchy rash. I stopped taking the supplement and all was well, though I don't recall this ever happening in the past. So I recently got a night creme and one of the ingredients in it is Vitamin C, and all under my eyes broke out in relatively the same way my entire face did previously on the supplement. I don't eat or drink much citrus, so I'm not sure about ingesting it naturally, but I was just curious if this could be a MCAS thing, or just a "me" thing. So hard to tell these days lol!
  12. I found a supplement that is supposed to help with proper adrenal function and I was curious to know if anyone has tried anything like this, and if so did it help? I have HYPER POTS so I thought something to help the adrenal function, which includes proper cortisol levels, might be a huge help to deal with the typical anxiety/stress issues that come as a by product of the POTS. Thanks!
  13. I hadn't even heard of it, but it sounds like a pretty cool device. It is sometimes SO hard to differentiate between "normal" POTS symptoms and really having a medical emergency, and I've always been afraid that I'll ignore an actual problem because I think it's "just me" lol! Having something like that would be nice for judging whether or not it's something new!
  14. I haven't tried them myself, but I would be very curious to hear from anyone who has!
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