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Everything posted by gomindy21

  1. Has anyone only had surges at night, say between 12-2am. I do not tend to have any surges in the morning. My norepinephrine levels are in the 400's which I think is normal, so I don't know if they would classify me as hyperadregenic. If I'm not hyperadregenic by clinical terms, then I'm curious what causes the surges. Anybody have any knowledge about such things?
  2. AWESOME! I am so excited for you! I think that I will try this as well! Thanks for sharing!
  3. I honestly can't remember if she did or not, but I will definitely ask Dr. Grubb when I see him. She did do a check point of the different areas. I think that she was working first on finding out what kind of POTS I have, and doing some platelet blood work which I think has to do with the JHS. They are also waiting for my results of the event monitor that I had to make sure I don't have any other abnormalities that need to be looked at. Thanks for the suggestion
  4. It went really well! I was pleasantly surprised. Bev seemed really knowledgeable and answered a lot of my questions. She diagnosed me with Joint hypermobility syndrome along with my pots and ordered a blood test for my norepinephrine levels along with vitamin D and a type of blood platelet blood work. She said that she thought my hair loss was due to depo provera. I will probably get my hormones checked out through my Ob-gyn. Since I am not a big medicine person, I was very happy that she was able to work with that. I have been doing much better lately and she was okay with me just trying reconditioning and biofeedback and seeing how that goes. I will be seeing Dr. Grubb in a few months as well. It 's nice to finally have some answers, isn't! I'm glad that your appointment went really well too! Do some of the changes in your medicine seem to be helping?
  5. I am so glad that your appointment went well! It sounds like there is hope in the air Mine is tomorrow with her. Thanks for updating us!
  6. I am very sorry for your loss and you hectic week! I am glad to hear that you are being very positive about all of this. You and your family will be in my prayers.
  7. Thanks! I will pray that your appointment goes well and that you can also get into see Dr. grubb soon!
  8. If you don't mind me asking, what are your main symptoms? My symptoms are never quite the same from day to day, which I guess most people go through that. My biggest problems are usually between 12 and 2am. I wake up with the surges that I've read other people have. Extreme pain in the chest that lasts up to a day and a half(my blood pressure and heart rate are normal part of the time during this pain.) Somedays my blood pressure is fine with a heart rate the gets around 113 after about 20 minutes.I haven't caught my rate at its worst, but I think the highest I've recorded was 135 and I'm sure it's been much higher. So, a lot of these I know are pots symptoms. My blood pressure monitor picks up irregular heartbeats quite often and it feels like my heart does a lot of afib stuff. When I lay down, sometimes my blood pressure gets extremely low. I have swollen lymph glands, bleeding gums, weird rashes that keep popping up. Also weird nerve pains, like through my arm, up through the side of my neck to the top of my head down through my eye or cheek which sometimes causes a little twitching. When I've had severe episodes, I have had the tremors as well. I suspect that I have celiac disease because I had blood work done through an alternative doc that showed sensitivities to wheat, gluten, dairy, etc. I sometimes get tingling through my tongue. I have some hypermobility in my finger joints. After taking a shower, the blood vessels will burst in my eye and the list could go on and on. I guess my biggest concern is if I need to get my norephinephrine levels checked, my joint hypermobility, some kind of neuro thing , and the rash, bleeding gums, etc. Sorry, I feel like I'm rambling on. I really wish the best for your appointment, hopefully this will be a step in the direction of seeing Dr. Grubb!
  9. Oh, bummer! I was afraid that my be the case Thanks for letting us know! I really suspect I have other issues other than POTS and I was hoping to get the appropriate tests to make sure what kind of POTS I have so I can get started on the right medicine. I'm hesitant to try any medicine without having a complete diagnosis. So far I've only had a tilt table test and SED and ANA blood test. I really want to rule out some other things, but it sounds like that might not be the case for this. ARGH!!!!
  10. Hi there When is your appointment. I have an appointment with Bev next thursday. I'm feeling the same way as you(excited and afraid). I will let you know how my appointment goes.
  11. Thanks everyone! I no longer have the chest pain, just palpitations here and there. When I first started having severe POTS episodes, I had similar chest pain(4 or 5 weeks ago). I think the next time it is that severe I will go in to the ER. Hopefully I will not have anymore bad pains until my appointment. I'm still curious if anyone else's blood pressure drops extremely low when they are lying down. Thanks for all of your support. It is so nice to have people to talk to about this
  12. Hello Everyone, I had just got diagnosed with POTS syndrome about 2 weeks ago. I will not be meeting with a specialist till next week. THere are so many things I am unsure of and wished I had answers to. I was wondering if anyone else had a constant searing pain in there heart even when your heart rate is in the 70's. My heart has been hurting since last night through today. Occasionally my heart rate has been in the 80's, but when I'm sitting it's in the 70's. Any thoughts would be greatly appreciated. I do have an event monitor on, but I don't know if this is something to go into the ER for. Also my blood pressure is never steady. When I am sitting within a minute it will go from systolic around 98 to systolic 129. Also when I'm laying it sometimes goes into the 80's.
  13. Question for Dizzysillyak: Is niacinamide(sorry for sp) the same as niacin? Niacin can cause the problems with heart irregularities and problems with blood vessel constriction. I was taking high amounts before my severe POTS kicked in and suspect that is what triggered the severe episodes. How has the 5htp begin working for you? I'm very interested in it.
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