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statesof

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About statesof

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  • Birthday 03/22/1988

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  1. Hello everyone, I wanted to see if anyone has used any of the barometric pressure apps for smartphones to good use in noticing any occurrences with relation to their symptoms day to day (POTS or migraine)? Also, does anyone know if there are any that are more accurate or possibly medically approved? Thanks.
  2. Hi @SGar just seeing your post. Yes I still have depersonalization/ derealization, for me it's mostly the derealization symptom though. I also have Depersonalization Disorder so I've noticed the DP/DR from that as well as a strong derealization which seems to be when my brain clearly doesn't have enough blood flow going to it -- but in those cases it is an acute symptom, rather than my Depersonalization Disorder which is just all the time. For me I found that amitriptyline was the only thing that helped both my brainfog and my derealization, its still there but just way turned down where b
  3. Hey @Pistol when you say you 'crashed' can you go into more detail about that? -- like what specific symptoms you were experiencing and how long it took for you to feel more okay again? Also, do you have any idea why the decrease in altitude affected you in that way? I know for me when I drove to DC and first experienced this stuff I went from around 2,200 ft elevation to about sea level and that's the first thing that made me think elevation affected me negatively particularly if it was a fast descent.
  4. Hey @Pistol I was driving myself which is typically not a problem for me as far is over-stimulation, its more the feeling like something physical is happening to my brain either with some external change over that period in time of the landscape (like elevation, or barometric pressure, or something else), or something physical occurs at a certain point in driving, like after +8 hours or something. The odd thing is its a very 'physical' feeling, not at all like brain fog or over-stimulation which I've had in the past. It also doesn't make sense to me that it would just be about being behind the
  5. Hey everyone, I'm wanting to see if anyone else has had similar experiences. Over the last year I've gone on four different road trips; three of which were two day drives to get to the destination, the other was a one day 12 hour drive. What I noticed was that except for one of the trips, my brain felt pretty horrible after the first day long of driving. I would explain it as an 'uncomfortable' feeling in my head, some pressure, sometimes it felt like my brain was physically overtaxed (not mentally overstimulated), and just very physically sensitive and 'off' feeling. When I did take an aspiri
  6. I have POTS and have been prescribed xanax extended release. For me it only can help with chest pressure, when aspirin and my cc blocker doesn't fully work. I take it very sparingly because its a benzo, and I haven't felt it make much of a difference with my POTS symptoms in general.
  7. Hi guys, I haven't seen many posts about this but was a topic that I wanted to bring up to see how other people are approaching it. I have POTS as well as an unknown possible complication from POTS which hasn't been able to be fully diagnosed or had any light shed on it by doctors, it is typically the 'well its not migraine' or 'well its not POTS' or 'it could be a combination of many things, but we can't at this point know with medicine being where it is'. I wanted to see how do you guys view your long term personal finances when it comes to things like retirement and things like that?
  8. Hi @Scout, as others have said I think it is difficult to, in a short office appointment with a doctor who may or may not be the best communicator, to help them to understand your condition, current issues and what has worked/ hasn't worked and get to a place where something beneficial comes out of the appointment. I've typically had the doctor either not really hear me when I speak to them or have no idea about POTS but are sure that all my symptoms must be that and so I should go back to a POTS specialist (who are also without full answers). What I have found that helps is create yourself
  9. I'm on 15mg and have been on that from the beginning since my body is really sensitive to meds since having POTS. I found that within the first day I could tell it was having an effect on me, kind of had a 'drug high' type feeling for the first week, but I also noticed I could walk around a bit further and my body would recover faster from it. 30mg is the most I've done and I can definitely tell when I'm on that dose, can walk further/ recover faster but it causes too much of a feeling of head pressure for me. The one downside I've felt with the drug is that my body gets used to it really q
  10. I'm currently going through the process of relocating mostly because I'm trying to get out of an area with snow -- with a wheelchair it just adds extra limits for almost half the year. But the few factors I was trying to think about other than cost were weather patter changes (potential increase my migraines), heat (not sure how 90+ summers would affect my POTS body), and elevation changes which my body really does not like.
  11. Here's how I approached jobs/ work. My biggest problems were 1. That I couldn't do any real physical tasks (walking, lifting, etc.) and 2. I was not sure how I would feel from day to day, and was not fully accepting my limitations. First I started doing freelance graphic design on some of the freelance websites and sound design work for about two years neither of which afforded me a livable income. Then I was able to get a computer based kind of coding type of job where I could work remotely but I still had to go into the office for training and the mestinon that I was on which would allow
  12. Hi scout I as well have a wheelchair; I use a powered wheelchair because my symptoms are related to physical exertion in general so a regular wheelchair would be as bad as walking for me. Mines the Lite Rider Envy by Golden Technologies, it doesn't really look cool but it was the slimmest one I could find and had a long range cause it uses 2 batteries. With new good batteries its good for like 2-3 hours of driving straight, so if your going to a place and then sitting for a while it can last all day. For my case of POTS I wish I had gotten it sooner just cause I can actually do stuff now th
  13. My experience may be different from others, but I found that I would have to do at least a moderate amount of cardio time (15-30 minutes) for exercise to not make me feel awful afterwards. When I would try the stationary bike for 5 minutes lets say, it was extremely hard on my brain and body, when I just decided to do 15 just to see how I would feel, it seemed to be sustainable and I actually felt much better afterwards. Everyone's body is probably different.
  14. I'm on calcium channel blockers as well; they have no effect on my POTS but do help with chest pain/ pressure. Beta blockers made me feel more lightheaded, and almost like I was less aware of things.
  15. Right on. Earlier in my illness when I was still doing the circuit of doctors and waiting for 'the one' that would actually find the exact thing to fix in me and make me back to normal again, I only had one person in my life that said 'you keep waiting, but you might never get better' and I think at the time I needed that because I, and everyone else around me, was looking for 'the answer' and in all of the doing it felt like that was my version of trying to live -- but your right I was pushing a pause button while everyone else continued to live around me. And though I think that having
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