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About cmreber

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  • 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. 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
  2. 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
  3. 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!
  4. @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), simi
  5. 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.
  6. 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!
  7. 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
  8. 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!
  9. 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!
  10. I haven't tried them myself, but I would be very curious to hear from anyone who has!
  11. I have had some pretty low points throughout this whole process, and I completely understand the utter exhaustion of it all. At times it feels like a full-time job just keeping our bodies from turning on us completely! (Not to mention the guilt that comes with having to give yourself so much rest, etc!) There were times when I was in a major flare that I just kept thinking that I couldn't do this day after day. But, for many of us, it does get better with time, with self care and treatment. I have found that, while difficult to get started, exercise is HUGE for me, as was finding the righ
  12. I also bruise SO easily it's ridiculous! I am almost always anemic, even with iron supplements, which I believe is part of my problem, along with the low blood volume issues that come with my POTS. But it is interesting that @Psalm 23 brings up mast cell activation syndrome. I honestly think that I have this as well as the dysautonomia, though I haven't been tested for it. It does seem like so many people have both!
  13. From what I have seen and read, it seems that a lot of time, "recovery" time comes down to the type of POTS, what caused it, etc.
  14. I can tolerate wine and I'm also taking Metoprolol. No issues with that and I asked my cardiologist and he said it shouldn't be a problem. You might check with your doctor though, just to be sure!
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