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Everything posted by Rebeccawithdogs

  1. Hi! I've had problems with this test for almost thirty years. With a positive Lupus test and RA test, but not the diagnosis. At one point the test was 1:640 or was it 680? It's been a while. So my doctor would test it in my yearly physical. It was normal for about fifteen years. Then when one day I woke up with POTS, it came back elevated. I think there is a correlation but we won't know what it is. A rheumatologist (sp?) would be able to help diagnosis auto-immune components. Good luck to you.
  2. Hi everyone, I need a cavity filled. I used to dread dentistry but now I just dread worsening of POTS. I spoke to the dentist and he said the effects of the epinephrine would be transient. And he said there was very little epinephrine in the shot. He said that the other option does not numb as well and he would have to use more of it. I'm sure many of us have had dental work and know the right choice. Thank you, as always.
  3. Wow! I feel so sad. I went to see a specialist and she said even if I met the clinical definition of POTS, I don't have it because I drink too much coffee. I mentioned to her that I drink coffee because I am fatigued and need to work. And that her statement did not make sense because the first thing in the morning before I have coffee, my heart rate goes from 60 to 140. All of this is just par for the course. But what really hurts me is when we were talking she said that "people were not meant to be as tall as you are." How negating. I am a women who is 6/2 and have been teased through out my life unmercifully. She could have said it a different way like "there are studies that show taller people have more problems with back issues" It just hurt my feelings terribly. I paid for that appointment. i was watching her resident assistant when she said her statement and the look on her face said it all. I discussed genetics with the doctor and told her I was tall because my ancestors had more protein in their diets. I said if she was referring to evolution than Ethiopia where it is said that life supposedly originated is the place to look for what the standards are. Ethiopians are tall are they not meant to be tall either? How about the Masai or the Swedes, Norwegians and others. Whatever, it just hurt my feelings. It really cut. Now I get to let it go and be myself, all of myself, all six feet two inches of female, because I am meant to be as tall as I am and I will think about the words that empower myself and others.
  4. I did along time ago. We could start a campaign
  5. Good question. I did/do have endometriosis and the reading I have done shows it is also found in connection with CFS. I went into early menopause after my functioning ovarian cyst was fulgated. That is when POTS hit. Yes, I think it is hormone regulated. But I am not a doctor. :-) I can't remember what I wrote down a couple of years ago that estrogen binds with *****. Was it acetycholine?
  6. Why do doctors assume if you improve, your P.O.T.S. was viral onset What kind of virus causes P.O.T.S? Where is the research that says it can be brought on by virus, anyone know? Or is this a theory?
  7. Does anyone else use Tylenol on a regular basis? I was just wondering because as I have been taking it, I noticed my POTS symptoms getting better. One theory of the cause of POTS is the nor-epinephrine transport protein autoimmune aspect. I researched what this protein regulates and it seemed like it regulates pain. Is this correct? So I was wondering if all the Tylenol I have been taking could be helping? I have bulging discs and arthritis and work full time so I need the Tylenol pretty consistently.
  8. When I was first diagnosed with POTS, I could barely make it to the store for food, let alone work. I called in sick a lot, begged my doctor to take me off work, etc. But when I ran out of sick time, I had to work. It was the most difficult time in my life physically. My supervisor was supportive, she came up to me one day and was very excited. She told me that she had just found out the Yellow Wiggle, from the kids group, the Wiggles, had come back to work after a rare illness, POTS. Though forcing myself to work was the hardest and unfair thing I ever went through, ultimately I think it helped. POTS for me, has improved, and God I pray it does not come back to the way it was. I can understand those who can not work. Would rather not have worked but it was a necessity and I did not by any means have a desk job. I don't know how I did it, it was miserable. Still find myself very fatigued and POTS in the am, but it used to last all day. Good luck and God bless
  9. Oh yes, it comes and goes. Twitching in my calves and on my right lower eyelid, the calves were especially annoying. It would happen especially after exercise. It comes and goes and is very annoying.
  10. I asked my doctor if there was anything that she could do to help me at work, because it is so difficult to work five days a week. By Thursday, Friday I am absolutely exhausted. This is a blessing because it used to be everyday I was exhausted. She said that P.O.T.S. would not be recognized as a disability requiring accommodations because it is a syndrome. Does anyone have experience with trying to keep a job and managing P.O.T.s in the workplace? I know many of you know how I feel by mid-week. "I have to do this. If I don't I will loose my job, my health insurance, my home, yada, yada, yada. " Thank you
  11. Work place accommodations, water seems like such an easy accomodation. Maybe they will make a reasonable accommodation without the note. I know it is sooooo important to stay hydrated. I don't know where you work, but where I work it was not just about getting a note, it was about a lot of paperwork in clearing anything. I am unsure if ADA would apply to POTS. I KNOW it should. I asked my doctor at UCI about work and I think she wanted to help me, but said POTS is a syndrome. I was super frustrated. Maybe other people will complain about it. I find at work if something is an awful rule, other people will complain. Good luck. I know it is tough working with POTS and not having access to water is a definite unnecessary hurdle. Good luck.
  12. Hi Gemma, sometimes I take a whole Xanax in the morning and sometimes I take a 1/2. I had another post about pain and addiction. Anxiety and addiction is another matter to consider. i took Xanex this morning because my heart rate was 130 and I know it to be true for me, that this heart rate not only creates a physiological cascade of symptoms, one of which is anxiety. If xanex helps me get in my car and drive to work, and helps to abate the physiological symptoms, I will take it as prescribed. As a recovering addict, Xanax is highly addictive for some people. I do not have the same compulsion with it that I do with opiates. So everyone is different. I have not had a doctor tell me that Xanax is bad for POTS. I saw a UCLA doctor who reviewed my meds, she did not tell me that Xanex was bad for POTS. But some people have different reactions to meds. I am going to UCI next Monday and will ask about this. Since you are planning on getting pregnant, wishing you success in your plans. If you find that you are addicted to Xanex, not saying that you are, know that I am also an recovering addict and there are other people with POTS and addiction issues who are here for you.
  13. I've had dysautonomia and have read posts by various members, learning much from them and relating to them. Often, I see mention of pain. This is my first post. What type of pain do you feel is associated with dysautonomia or its accompaning diseases? How do you treat your pain? When I first was diagnosed with dysautonomia, I treated the associated pain with Vicodin, only to become addicted. I know that Opiates are vasodialators and are contra-indicated, but I feel that the pain is greater than the consequences and even with a year off of Narcotics, I still have dysautonomia. My pain is bone spurs, scoliosis, arthritis, bulging discs, stenosis, muscle cramps and neuropathic pain. I feel that orthostatic hypotension contributes to this, as does the fatigue and disrupted sleep associated with fibromyalgia and dysautonomia. Further it has been suggested by another recovering addict, that I try to find someone who has dysautonomia, who could relate to pain and addiction who is not using narcotics. Any feedback would be greatly appreciated.
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