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Goschi

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About Goschi

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  1. Thanky you so much for your reply , Katybug! I am very sorry to hear that you are affected with this too.. However, I am not so sure, if we actually have the same thing. I never had (and don't have now) "classical" tinnitus with "ringing" in the ears and the like. I simply hear my pulse wooshing in my left ear - 24/7. The severity doesn't change with the Intensity of my Pots symptoms. Nevertheless, for me it feels somehow "connected". And I read on the net, that pulsatile tinnitus ALWAYS has a physiological cause...
  2. Hi, everybody! Maybe this question might sound a bit strange - but the more time passes, the more I get the imagination that there could possibly be a connection to POTS: For more than 3 years I have a so called "pulsatile tinnitus", meaning that I can hear my pulse "wooshing" in my left ear. Does anybody have this...? And could there be a possible connection to POTs Thanks in advance for any replies!
  3. I got it too. It definitely has a very strong correlation with how strong my POTS-symptoms are in general. When I was at my worst in Feb/March this year, I got it from just sitting for 2-3 minutes. Now I don't get it from sitting at all, neither when I am walking or making other moves with my legs. The only posture I get it from now is standing still. It will start after 3-4 minutes and be in "full blow" after 6-7 minutes. However, as time goes by and I improve in general, it takes more time of standing still to appear. Therefore, I would say acrocyanosis for me is a perfect marker for how bad
  4. Thanks, kitt for your experiences with midodrine. I am sorry to hear that you are also having trouble with the right dosage... It's in fact a pity (if not to say quite annoying!!) that this med is so difficult to handle, as I can fell it would help me a big deal in general!!
  5. I only know that the scientific literature used to define the usual ONSET of Pots in people between 15-50 years old. However, this starts to become debatable, as more and more patients younger than 15 and older than 50 get their first diagnosis. Concerning the chances for remission: Many teens who get it, seem to outgrow it after some years. However, there are still not enough follow-up studies for teens who got it at the age of 16 and outgrow it f.e. at the age of 22. There's yet not enough data to conclude, how they will be doing, when they reach their 30s and 40s. On the other hand, people
  6. I still take 2,5mg midodrine 3 times a day, and after doing so for more than 2 weeks, I would still say that it helps me. But there are also some effects which I did observe and which I feel to be a bit cumbersome: 1) I takes up to 1,5 or even 2 hours for a dosage to kick in. Here in hospital, this doesn't play a role, but for every day life, I imagine this to be quite a challenge to organise when to take a dosage. 2) When the dosage finally kicks in, it feels a bit too strong at the beginning. For the first hour, I do get the typical goosebumps and itchy s
  7. Thanks again, DeGenesis! I will give it a try!
  8. Thanks DeGenesis for the link! - really sounds very positive in general! But your experience wasn't that good, as far as I understand?
  9. I know this is a very old thread - but I just found a product here in my country that contains Rhodiola rosea, so I just wanted to ask again, if anyone took it and what kind of experience you had...?
  10. Thanks, looneymom! I will look for Taurine, maybe it could help not only with the tinnitus!
  11. I do have pulsatile tinnitus in my left ear only (wooshing sound with every heart beat). It started at the time when my POTS finally flared up extremely one year ago. As I was only diagnosed with POTS in Aug. 2013, I didn't make a connection. Later on, I thought this specific type of tinnitus may point to a possible underlying cause of my POTS, but I guess this is not very likely.
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