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About nmorgen

  • Birthday 02/18/1975

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  • Gender
  • Location
    Gland Switzerland
  • Interests
    I love to read and collect books. I used to love swimming, tennis, horseback riding, walks and gardening. I don't get to do much of those anymore.

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  1. Hi firewatcher, I remember you from back in the day, lol. I too have ignored my POTS for the last few years since my family moved back to the US. None of the drs here seem to have a clue and just don't want to be bothered. For several years I actually thought that maybe it had gone away. I was so so wrong. I am far worse than I ever have been. No energy at all, and I'm severely tired now after doing anything. My oldest who just turned 18 is now having symptoms. I wish I could be more upbeat like I was back when I was first diagnosed and getting some help. I was so optimistic then. Now it is honestly just depressing.
  2. Hi Sue1234, I have been doing okay. I'm not really taking much medication or allergy medicine at this time. I have gained some weight, which hopefully I will lose soon. I have also started swimming. I still occasionally have tachy, but now my heart rate drops low and my oxygen drops low. I am working on my MBA and I really don't have much time anymore.
  3. Hi, I haven't been to the forum in quite awhile. Is there a backup to the old forum and all of it's posts? It had such great information and I did not think that everything would not be converted over.
  4. Has anyone used clarinex? I find that it helps me a lot. I also use allegra, tagament(when needed) and nasalcrom.
  5. Hi everyone, I was wondering if anyone else has experienced low pulses, mine has been dropping into the 30s range(usually when I stand up. Along with this I feel bad, and according to my oximeter my oxygen is dropping into the 80s. I am really getting worried and a lot scared. I don't currently have insurance, and I am in the US right now. I will be flying back to Switzerland in Aug, and I wont have insurance until Sep. Should I try and push the insurance early and get checked out before I go? I just don't know what to do or what this could be. Oh, I haven't been on any medication in over a year. Thanks in advance for any advice or reassurance I really, really, really hate POTs and dysautonomia!
  6. Wow, that's great that its really helping. I will try it. I didnt know that any cinnamon cased cancer. I looked up the cinnmaon I have and it's from sri lanka, so I'm pretty sure it's cinnamon not cassia. I also read that it was the cassia(Chinese cinnamon) that was good for insulin stability. Hmm, I guess I'll have to look into that. Glad your feeling better and have more energy. Is there anything else your doing or just the nut butter and cinnamon? Natalie
  7. I have the same hot cold flashes. I'm not really the typical age for menopause, but according to Mayo that's what my hormones are telling them. I tend to have most of mine at night. I also get the hot flashes after activity, and I think they are POTs related, and I'm sure the low estrogen doesnt help. Go to your gyn and ask them to test your hormone levels. At least you'll know if it's hormone related or just dys. Also, try to relax when you have them. Sit down get a cool drink and read a book or do something to take your mind off of it. They go away a lot quicker when they are POTs related if you just calm down. BTW, I haven't been on the forum in several months, and Im glad to see that you and your husband worked things out.
  8. I get the occasional shocks, but not really pain, and thankfully it is very rare. I also use soft unscented toilet paper and unscented feminine products. My skin is really sensitive.
  9. Hi Julie, I haven't had any test in recent years for EBV, but I had mono almost every year when I was younger. I read(I'm not sure where, I'll have to find it) that some researchers are thinking that the flu is caused by vit D defficiency. Maybe, our vit D defficiencies are causing the viruses to reactivate in our systems. It seems like almost all of us have very low vit D levels. Whether we are dys POTs or hyper POTs, we all seem to have that in common.
  10. Hi Linda, Congratulations on the grandbaby! Sorry to hear about your healh decline. I can't give you any answers on the mottling, but I have it myself. It's called Livedo reticularis, and if you have EdS, like most people seem to have on the forum it can cause the mottling. I hope you and your dr can figure out what's wrong and get you better. Natalie
  11. Sorry your having problems. I have hyper POTs, from my understanding I guess I've had this all of my life. So, I cant really say that there is a difference in orgasm. I do have them, and they vary in intensity anyway. There is a big difference in my energy levels which has changed the frequency of sex. If you are experiencing physical problems as you stated, talk to your dr. Honestly, even if it's a mental thing you should still talk to your dr about. I wish you luck.
  12. Hi Julie, I think this sounds very interesting. Please keep us updated on what happens with you. If you have good results with talking your dr into testing and maybe trying this I think I will do the same.
  13. Hi, Well my pulmonary dr did some lung function tests yesterday and she thinks that my asthma isn't being controlled, so my inhaler doses have been upped. She is also sending me to rspiratory therapy to see if that helps. So at this point she thinks it's still my asthma causing the drops in oxygen. I go back in 6 weeks to see if I've had any improvement. I hate asthma. Mine used to not be that bad, but since all the POTs stuff it just seeems to get worse. I'm praying that it goes away. If there are any prayer warriors on the forum can you pray that my asthma goes away or at least gets a lot better? thanks
  14. Chaos, I was going to mention that if you try to use inhalers after there is a problem, it takes a long time for them to work. They are preventative, and they can help, but not automatically after a flair. They just don't have that capability.
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