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About friday7

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  1. I've been having nightmares lately and I had taken Prazosin, or Minipress, in the past for this. I am a little reluctant to try this again because of the fact that the prescribing doctor says it can cause low blood pressure. I thought I had head that it was like a beta blocker though. I remember taking a Beat blocker for the POTS a few years back. I was told at that time it would have the opposite affect on me. Meaning it could raise my blood pressure. So my question is, has anyone taken Prazonsin? Or do you know what kind of affect it has on people with POTS. Is it similar to a beat blocker?
  2. Yes.I was more or less bedridden when I was first diagnosed.. I've had ups and downs since then but much better off now. I can get out. I can't work ..yet. But sometimes I can drive and go to stores and volunteer to take care of the cats once a week at Petsmart. I went to a few concerts in the park this year. I even got up and dancded for one song(my versionof dancing.I can't move my feet , just my body or I'll falll over.LOL) I think at this point i have other problems such as an inner ear disorder that also keeps me from doing things. If iI didn't have that I'm sure i'd be much better. I sti
  3. Just wondering . If you feel relief from being in the pool I'm wondering if it can effect your wellness overall if you swim weekly. Like is it that we feel better just while we're in the pool or does it provide some benefit afterwards also. Just wondering if gong to a YMCA pool weekly would help symptoms overall.
  4. HI I had been taking salt tablets for a few years and it has helped me a lot. My blood pressure is normally around 120 over 80 and that's where I feel good. I would take four to five tablets a day. But since January I have been taking Seroquel to sleep. I have taken this med before without any problems but this time i went from 100 mg per night to 300 to 400 mg a night and slept much better. I noticed about a month after starting that and Prozac at 40mg my blood pressure was up without the need for salt tablets. I figured it must be the seroquel that somehow increased my BP. So I stopped the
  5. HI. I've been taking Seroquel for sleeping for a while but recently my doctor increased it to 300 to 350 for sleep. Since I was having a lot of trouble sleeping. I had tried trazadone before that and woke with night terrors. So he also prescribed Minipress which is a blood pressure med. I was a little concerned about that but figured I could alter my salt tabs..maybe add a tab to keep my pressure from lowering. I also figured this would be temporary, since I am not taking the ttrazadone anymore. I just haven't seen him yet to see about discontinuing the minipress. I was also recently put on Pr
  6. thanks Katybug, for telling us what you doctor said. it's great that you have at least one doctor that understands. i was wondering if there is anywhere on the web in any studies or anything written by doctors that mentions low body temp and POTS...or at least low body temps and CFS. I feel like if at least there's someplace official in some way that states that it is common for patients with POTS or CFS to have a low temp..at least that would be something to show the doc. I looked at potsplace to see if it listed it under symptoms and it did not.
  7. Katybug, I'd be interested in what your docs have to say. So far I havne't found one that will really listen as far as the temp goes. I've had a temp of 98 or higher every night this week and I feel terrible. I had an ear infection so it makes sense but I've been taking these ear drops for two weeks and I Feel worse now and I'm thinking maybe i should have gotten oral antibiotics instead. so I 'm goign to see the ENT next week. I'm hoping this will clear up by then otherwise I have to explain the low temp thing to yet another doc and I just get so nervous cause I'm afraid of the brush off, an
  8. I also have trouble shopping . Sometimes it fatigue , or dizziness or the fact that I can't walk too long without sitting. or I can't stand in lines. I got a disabled card from motor vehicle. which isn't hard to get if your sick. So that helps. I also used to use the motorized carts they have in the grocery stores. But when my Mom got a rollator, or walker with a seat , she found she didn't like it as much as her cane and gave it to me. That's been great. I can walk and lean on that a little, and whenever i feel the need to sit there's always a seat. It's a bit hard with food shopping being t
  9. I have Hypothyroidism. I actually thought i had thyroid problems fro a while, but since my numbers were okay they said it wasn't that. Still i had a goiter and my numbers steadily got higher through the years until I was finally diagnosed about 2 years ago. I was diagnosed with POTS over five years ago. And CFS over ten years ago..Though I always suspected it was the thyroid way before I was diagnosed with anything. But Hypothyroidism was the last to be diagnosed..I still don't know if I'm getting properly treated for that, since my levels are on the rise again and so far the doctor doens't s
  10. Have you had you liver or kidneys checked..not that I want to worry you. I'm sure there's probably other things that can cause low levels of Albumin but my Dad has liver cirrhosis so that's the first thing i think of. He never drank or anything his was caused by a med that he had been on for Diabetes. I haven't any idea of how it would relate to POTS, unfortunately. Anyway I'm curious why the docs took the test and what they had to say about the low levels.
  11. Ptalaura, You said you were on Restasis 2xday, Refresh liquigel up to 6xday, and a nighttime gel ointment . Are those all for your eyes? I'm wondering because I was on Restasis once a day but it didn't seem to help. In fact when i first put the drops in it would make them more dry. I kept trying it thinking that eventually it would get better but after a month it did not help. I'm wondering if maybe the other meds you mentioned could help. Did you get them from an eye doctor or a GP?
  12. First I am not too surprised to see so many people with this illness having low temps. I too run low, about 96.5 on average. What I would like to know is how do you get the doctors to accept this. Is there some way to get this verified? Some way of getting this diagnosed, for lack of a better word. It is much like a diagnosis because if you tell someone I have thyroid disease, they are not going to take you seriously without a diagnosis. But with the low temp. No one takes it seriously. Which is a problem when you've got a fever. I can tell the doctor that I normally have a low temp and expl
  13. I was wondering if anyone has taken anything that has improved to only your ability to fall asleep but your ability to stay asleep. Or the quality of your sleep. From what I hear a lot of these problems we have can be due to lack of REM sleep. I had two sleep studies done and in both I hardly got and REM sleep. I had hoped a sleep specialist would be of help but they really only were looking for sleep apnea. Is there nothing you can do to improve your REM sleep?
  14. If you had an allergy to mold that would also effect you. I often wonder whether I have hidden mold in my house...or under it. I live in a mobile home. Unfortunately I cannot afford to have anyone test or remove it.
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