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jagpots13

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Everything posted by jagpots13

  1. I have been on propranolol ER about seven years now, 120 mg bid. I have recently had to double that and still have a resting heart rate of about 98. I still feel like I'm racing. And it's not really helping posture really that much anymore. I can feel my heart rate rise substantially again. I also take midodrine for low blood pressure. So far that is holding. I can't even lean down and my 63° house and pick anything up without going into full-blown pots mode again; sweating profusely, swelling, nausea, migraine etc. Much less go outside in this Mississippi heat. I almost immediately start
  2. TERRIBLE, and I feel you for sure. Same thing here. Don't have any tips other than to strip down, get a/c as low as it goes, box fan in the face and lay and PRAY!! Hope this ends soon! Feel better
  3. I'll tell the truth, even though it's gotten me in trouble before, anything to help. When I have a "bad" bout of nausea.. The kind when I'm throwing up 20 violent times in 30 minutes. I'll make my husband go get me some. And I will FORCE myself smoke in between pukes. Although it makes me feel worse while I'm smoking it.. It doesn't take long and it makes the symptoms A BIT less severe. And at that point, I'll take any little percentage I can get of feeling better. NOTHING else even makes a dent. But I will say be careful if your on pain management. I had a "bad" throwup episode, smoked, had a
  4. I have been through ALL of the forum posts and my personal messages so it must have been a personal email of which I've been having trouble with on my mobile phone being deleted automatically. Someone asked me if I had tried ? or ? for my migraines, headaches. They said they may even be the same thing. They had no success from meds like imitrex because of heartrate going up and this did NOT do that. Any info on what I am talking about would be greatly appreciated. I was going to call my Doctor today to get other things started as no success with anything now. Sorry for the repeat info. I do
  5. All the time. Have you found anything that stops or curbs them?
  6. My sister asked me on the phone the other day if my husband was supportive or does he think your "making things up". First of all I thought that was a strange question and it struck a nerve. I kept my composure and said well no, he's supportive. But how do you make up puking your guts up anytime you go out in the heat or get over exerted in the a/c, eyes rolling back in the head, going completely limp and passing out, having a heart rate monitor on which visibly shows your pulse being high as a kite and the changes that take place upon sitting and standing!?!?! She said well yeah, I guess so,
  7. Mrs. Burschman, Thank you so much for the welcome and the suggestion! I will definitely ask my Doctor about it Monday. I used to take one long ago and it helped immensly with the shingles but I stopped taking it, Celexa I think it was. Willing to give anything a try! It's great to know you can now lead a mostly normal life! That gives me hope! I guess if nothing gets better within a month or so I'll start the process to go to Vanderbilt.. Traveling is such a struggle I'm trying to avoid it! Hope you continue to have success and thank you again!!
  8. I have had the same thing start recently. I sit there needing to swallow and I can't.. It almost makes me panic! I have to go get a drink and I can swallow then. Scary!
  9. I surely feel for you. I too have had to miss so much of my Children's lives in relation to their sports playing. It plagues me with guilt... In my logical mind I know it's not my fault but it doesn't make it hurt any less. They should put off all sports until Winter time! lol. I see the looks other parents give me when I do get to come around like oh she shows up now! It may be my insecurities but I doubt it! It's strange having a place to get what's really happening out in the open and TALK about how bad I'm feeling instead of covering it up. I am so used to keeping it inside so my family d
  10. Ok, got it double spaced now. Hope that helps, my eyes get crossed reading long text too! Added a few missing thoughts too.
  11. Thank everyone for taking the time to read that LONG story. I didn't know I had that much to say! I have been tested for pheno.. another negative. My endocrinologist thought that may be it or he thought I may have had tumors on or around my adrenal gland. We did a CT with contrast first, nothing.. another CT with the chalk stuff and contrast again.. nothing. Although he told me if nothing showed on the CT we would need to do a PET scan he opted for the same thing again only with the chalk. I thought it was bogus too! I'll probably end up in Nashville at Vanderbilt, closest place for me. I've
  12. Where to even start? The more I learn about this disease I?m almost certain that everything that has ever been wrong with me is related to this. But if that?s the case, now that I?m 38 and it?s at its strongest I have to come to terms with the idea that this is my life with no hopes for any change. I started to get horrible migraines when I was 11 years old, I can remember going into the office calling my Mom and trying to hang the phone up on the stapler over and over. Phrenilin was the only thing that worked, IF I caught it on time. They kept going strong until I was in my early 20?s, then
  13. I am amazed at how many things I'm continuing to see that are related to "POTS". I have the exact same thing with my left eye.. Hard to keep make-up on because it's scar tissue on the left corner now.. So many things to learn...
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