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cmreber

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About cmreber

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    Advanced Member
  • Birthday 06/30/1985

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    http://cmreber.com

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    Female
  • Interests
    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 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!
  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 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.
  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), 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!
  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. Just curious if anyone is currently dealing with both? Thanks!!!!
  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 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!
  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 right medication combination (beta blocker, low dose SSRI for me). Surrounding yourself with supportive people is also key, which is why I found this forum to be extremely important along the way. Finding new hobbies also helped me tremendously. Prior to my POTS diagnosis, I was super active: anything outdoors, dirt bikes, racing motorcycles, surfing, hiking, snowboarding...you name it, I was there! Obviously, I had to cut back on these things (and eliminate some altogether) which led to me falling into a deep depression for a time. But then, I discovered new interests that are more POTS-friendly, and in doing so, I found other community to replace what I had lost. For example, I really got into the tv show Supernatural, and have gone to conventions and have met lifelong friends because of it. So, while I had to lose some things, I've actually gained in other respects. And now, I am slowly getting back to the things I used to be able to do, which makes it all that much better. I think the key is letting yourself mourn what you have lost, because no one can truly understand what we go through unless they are there, but then trying to keep moving forward and seeking out new things to love about life. Most importantly, always keep fighting because the self care will truly be worth it, even if it doesn't seem like it some days. Hugs to you, and we are always here when you need to vent! <3
  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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