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Everything posted by cmreber

  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!
  15. Hello! I personally have not had adverse reactions to things like beer and wine, but I do have to be more careful when it comes to hard liquor, like Rum, Tequila, or Vodka, which tend to make me more tachy... though sometimes that just comes down to mixers. I tend to stay away from soda with alcohol because the large amount of sugar seems to be what makes me feel bad the next day. My main thing is that I have to make sure I'm extra hydrating whenever consuming alcohol and also it helps me to always eat with it. I know some can't tolerate it at all, while others see temporary improvement. I
  16. When I first got really sick and they were trying to figure out what was wrong with me, I had an MRI to test for pheo because the symptoms are so similar. Mine came back negative and after that is when I was diagnosed with Hyper POTS. I know for me, panic attacks have always come hand in hand with my Hyper POTS, and I think it has to do with the elevated adrenal hormones, and the fact that my body will sometimes be in "fight or flight" mode when it shouldn't. I haven't had panic attacks for quite some time, though I am currently going through a "good" period and I also started on a low dose
  17. I was diagnosed with Hyper Pots in early 2011 and it has been an up and down journey for me ever since. Once I got on meds, etc., it took me probably about 6 months to get to about 75% function, and then it has fluctuated from there over the years. Sometimes I will get to feeling around 95% and other times, I'm more like 25%. I'm still on meds, though a much lower dose the past couple of years, and the past 6 months I have been making really great progress with exercise, which has kept me more like 80-90% functionality.
  18. I use a bar stool for food prep when I need it, and definitely do a LOT with the crock pot. I decided to splurge and get a really nice one that has lots of time settings and automatically turns off when it's done. It even has a thermometer you can set to turn off when the internal temp reaches a certain amount to help avoid the burning Pinterest recipes are my friends these days LOL!
  19. I also have Hyper POTS, but I haven't experienced the fluctuations with fluids. I used to get huge random spikes in my BP before I was on meds, but I am on a beta blocker and SSRI now, and my BP actually stays pretty low/steady, typically around 115/70ish, unless I'm having a particularly bad flare. I wish I could help, but I'm not really sure what might cause the jump for you. Hopefully someone on here has experience with the same meds!
  20. Thank you @Morrolan53 !!!
  21. Thank you all so much for your encouragement and kind words! I have always loved how everyone in here is so supportive of each other <3 @songcanary I will so give him an extra hug...he definitely scored some serious points with this LOL! I'm very sorry to hear you are going through a flare up and I hope it passes quickly for you! Those are never easy, especially if they come after a long stretch of feeling better. I am also so sorry you never got the support you needed and deserved... but that just means you are that much stronger for getting through by yourself, and that is an abs
  22. I just wanted to share here, because I know everyone here understands how important the victories are to us, living with this stuff day in and day out. But, YOU GUYS, I completed a 5K mud obstacle run! I never, ever in a million years thought I'd do that, after being diagnosed with Hyper POTS in early 2011. I have had so many ups and downs over the years, and many, many dark times. Things have been looking up for awhile though, and I have been working really REALLY hard trying to get back into shape, but not do so much that I fall right back to where I started (what a balancing act w
  23. Oh I am so sorry all of that happened. That is awful! I never had to have the ERCP, but yikes!!! I hope things start improving for you <3
  24. This might be a helpful article all about the Valsalva Maneuver and results, and it also goes into dysautonomia. http://www.sciencedirect.com/topics/page/Valsalva_maneuver
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