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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. @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!
  2. 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!!!!
  3. 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!
  4. 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!
  5. 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!
  6. 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!
  7. I haven't tried them myself, but I would be very curious to hear from anyone who has!
  8. 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
  9. 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!
  10. 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.
  11. 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!
  12. 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 don't drink if I've been symptomatic at all though. I think it all comes down to the individual. Moderation is definitely key and learning your limitations for your body. Good luck! <3
  13. 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 SSRI, which might be helping. But whenever I have a major POTS flare, my main issues are always random panic attacks. I hope you start feeling better soon! <3
  14. 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.
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