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Everything posted by hholmes13

  1. Steph555...was your hr elevated the during the entire TTT? That's the only reason I can think of why they would call it OI instead of POTS. The first time I had the autonomic reflex screen done (I'm at Mayo Rochester - I live there) I wasn't having tachycardia issues yet and my hr jumped to around 120 but settled down after a few minutes to around 90 and they called it OI. I had it redone a year later (after I been on beta blockers for months for tachycardia) and this time it was elevated the entire time and I got the POTS diagnosis. This whole process can be so frustrating. Before I did
  2. Hi Everyone, My little sister is 20 years old and is going through some weird health issues right now that doctors are trying to figure out. I've done a lot of reading about dysautonomia over this past year and I don't think what she's going through is related to it...but I wanted to see if any of you have gone through similar things just in case. She had a seizure while getting her hair done about 4 weeks ago. (Never had one before.) Her eyes rolled back in her head and she started shaking and then completely blacked out. ER docs did a CT scan and said it looked fine. Her blood glucose a
  3. Cool! Is any body actually taking this for POTS right now or is this still in the works? I saw that it's currently used mostly for treating bed-wetting and diabetes insipidus. Reading about how this drug works, it makes sense why it could help alleviate POTS symptoms.
  4. Yikes 10g! How do you even take in that much? My tummy would never handle that. I usually shoot for 3g or so. Even that starts to upset my stomach some. I could never do salt tablets either as they made the nausea so much worse. I agree that I've never really noticed much of a difference in how I feel either. My bp has gotten pretty stable at this point, and even if I'm not consciously eating tons of salt it still stays pretty good. Hopefully someone here will have some ideas for you.
  5. Glad you're going to get the tests you need! I hope the doctors can help sort this out for you!
  6. I'm mostly scared of the uncertainty with POTS...I have no idea how bad (or good maybe...) I will feel someday. It scares me that I have no control over this stuff. In real life...I don't have many fears that I really think about on a regular basis. I guess I worry about my daughter getting this and EDS but try not to focus on that too much. I have also always really disliked clowns and bees.
  7. Wow. Poor kid. I'm glad he finally got a proper diagnosis. I've had some pretty foggy moments, but definitely nothing that severe. That would scare me! I agree with you Issie. I think it's so helpful to have articles about how this is a real condition and that we're not all looking for attention or whatever is doctors can think.
  8. Hi Carrie! Sorry you have to be here but glad you found the site! Sounds like you're going through a lot right now. You definitely have a difficult situation. Have you been to an endocrinologist? I wish I had more advice, but there are a lot of great people here for support and info. Good luck! Heather
  9. I'm completely tone deaf and therefore avoid singing in public, but I played the flute for almost 15 years and it's really tough for me to do now. I enjoy doing it, but man do I get super light-headed really quickly. If I play it all, it's for very short intervals. My 4 year old daughter loves to hear me play and have me show her how to do it, but I can't go for more than a few minutes anymore. corina your doctor's explanation makes a lot of sense. Good luck issie I hope you can sing again!
  10. Thoughts and prayers with her! I hope she improves soon!!
  11. I had them too...really painful. I also had one rupture when I was 16. I was in so much pain I actually threw up. I seriously thought I was dying because it hurt so bad. After that, I was put on birth control pills to help regulate everything. I would still get pain but luckily no more ruptures. After my daughter was born I haven't had any issues with cysts, but I've continually been on some form of hormonal birth control so maybe that's why.
  12. Welcome and congratulations on your new baby! I'm sorry you've got to deal with all the fun that POTS offers, but I'm glad you found this forum. You'll find the people here really supportive and knowledgeable! Good luck with everything!
  13. My thoughts exactly Sue1234!! I'd like to see how they would feel if their bodies did that!
  14. Hi Amber, I agree with AllAboutPeace that it's goofy they didn't have you laying down first. It doesn't make much sense. At Mayo I just had the autonomic reflex screen instead of the full blown TTT offered in the cardiology department. It's only a 10 min TTT but they have you laying down for a good 15 min first until they get steady readings for bp and hr. I agree that you may want to print off info and show it to them. Sorry it was such a frustrating experience for you! Good luck with everything!
  15. Thanks for bumping this. issie that's a really interesting article! Crazily enough, I work on the same floor as a lady who routinely tests catecholamines and renin/aldosterone/angiotensin and vasopressin levels. She wanted to check all my levels for me to try and get some answers. Unfortunately my veins were not cooperating and we only got enough blood for the catecholamines. I'm still waiting for those results. I told her I'd like to her to try again to get my blood because I would like to know those other levels as well. It sees like it would be a good thing to know. Interesting idea
  16. Yeah it is an NSAID. I've been worried about taking it for too long because of what it can do it to your liver, etc. I got on the forum for EDNF and there's some great info there. I'm hoping the PT person I get paired with is knowledgeable about POTS and EDS. I have a consult with the doctor soon. I ordered Dr. Tinkle's book a week or two ago and am just waiting for it to get shipped. I'm trying to learn all I can about joint health so I can take care of them as long as possible. I've read a lot that we should have our vitamin D levels checked. Is that worthwhile? I live in Minnesota
  17. Thanks for the input issie. I was wondering about the same thing Jennij. I just got diagnosed with EDS-type 3 and have been trying to find something that works. I was diagnosed by a medical geneticist. Like issie I didn't do any genetic testing because I don't have any signs of the other forms. I am planning on asking to see a rheumatologist to help with the pain I've been in. It has gotten so horrible over the past few months. I've maxed out my dose of Aleve and it takes the edge off for a few hours and then does nothing. I shuffle around like a 90 year old! I'm looking forward to st
  18. Ashelton...just a thought, have you ever had your renin/aldosterone/angiotensin levels checked? Those hormones are a big part of bp regulation and blood volume. If any of those levels are way off (especially low aldosterone) that may explain why your blood volume won't increase. http://www.cvphysiology.com/Blood%20Pressure/BP015.htm
  19. I'm trying to remember if I was 75% better...I was still having 1-2 pretty bad weeks every month but I at least did okay for 1-2 weeks each month. It was definitely a lot better than right now! It'll be interesting to see what others have to say.
  20. Sorry you have to be here but welcome!! The people here are awesome for both support and information. Good luck with your tests and finding a correct diagnosis!
  21. Arms over the head is definitely not a good thing! I can't tell you how many times I've passed out from standing up to go to bed and stretching because my back hurt and then next thing I know I'm on the floor. I also get dizzy trying to do my hair issie. It's definitely frustrating. I'm looking forward to getting on an exercise routine that works for me. I miss doing intense exercise! Good luck with the squats! I hope they help you out!
  22. I'm so sorry that you're having such a horrible time. Don't feel bad venting! That's what these groups are here for. Sending positive thoughts your way!!
  23. Thanks for the advice everyone. Unfortunately I can't work from home. Most of my job involves scientific equipment that I can't work with at my house. I have done things like place orders and proof papers and such, but there's no way to officially do it from home. I almost went down at work today and barely made it home after just a few hours of being there. I've tried scaling back over the past 2 weeks and I continue to decline. I think it's clear to me now...my body needs a break. I don't want to do permanent damage. I'm going to start working toward getting things set for leave for
  24. My situation at work continues to get worse. I can barely get through the days anymore. I've started feeling so bad that I've contemplated going to the ER many times but hesitate because I know it probably won't help all that much. I start PT in a few weeks mostly for the EDS, but if it does help POTS I'm assuming that it will take awhile to do so. I have like 3 months worth of STD I can use at 100% pay. I've been holding out to try and help my boss through this tough time. (We've got a bunch of big grants that need to go out in the next few months.)It's come at a huge detriment to my ow
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