writerlymom

Sarah, this is a good thing. You'll find your passion in a new path, I have no doubt about that. Giant hug!

That is great gjensen!!!

Hi- this blog has some info on salt equivalents. Good luck with everything! http://www.potsrecovery.com/p/lotsa-salt-diet.html

You're probably OK - frequent urination is common in autonomic dysfunction I'm told. Are you taking salt tablets or salting your food a lot? That's supposed to help retain fluid. Also some of the sports drinks like Gatorade have salt in them. Some people take florinef to help hold fluid. Re: the nausea- I was having a lot of that recently, especially in the morning, and it was attributed to reflux due to stress and medications, so took Prilosec for a while and it subsided. I still don't have much of an appetite but it's better than nausea. Hang in there!

Hi again, Came across this- maybe you've seen it. http://www.dysautonomiasos.com/#!pots-the-basics/c19qi

Blue, your feelings are completely understandable ~ but there is every reason to believe you will come out of this. POTS requires more patience than a person should have to summon! Sending a giant hug.

Welcome to the forum, Newold. : ) When I was first diagnosed with POTS there were some tests my cardiologist ordered immediately including paraneoplastic panel (blood drawn here but tested at Mayo) and a series of autoimmune blood tests- Lyme and I don't remember what all. You'll probably see in scouting around that in addition to all of the screening tests you'll want to check your vitamin levels and iron and ferritin. Maybe you have something hormonal going on too? I'm sure you'll receive many helpful responses here but you also could consider a phone consult with Dr. Blitshteyn in Buffalo- she has a web site- and she could recommend a workup for you. I think the dinet site also has a list of physicians in different states who are familiar with dysautonomia. Hang in there- this syndrome is different for everyone and from what I understand the "rule" is improvement, it just takes time. Sending warm thoughts.

Prayers and good wishes for you!

Nice to meet you and thank you for sharing your story. It sounds like you have been able to control things well. Very happy for you!

So happy for you!!

: )

MADE THIS SIGN - YAY ME!

Hi- can anyone recommend a yoga DVD that is all floor work/won't provoke many POTS symptoms? I need to find something I can use with the TV because the computer is in my office. Have seen some links on Pinterest but can't really follow those. Thanks so much!

Wow, impressive! Hope they find answers for you. Keep us posted. : )

Midodrine is suppose to help constrict your peripheral blood vessels, putting more blood in circulation in your upper body. Astronauts take it when they return from space and are POTSy.

Goschi, sorry to hear you're in the hospital. : ( When I first started on midodrine it lowered my heart rate and seemed to help a little with brain fog. I took 2.5 mg three times a day. I'm in a flare now and that dosage doesn't seem to be making much difference so my doctors are recommending increasing it. I've tried 5 mg here and there recently but haven't seen much difference... so they're saying go to 7.5 mg. I think it's common for people to need 10 mg three times a day. Hope you're doing better very soon!

Sorry about the complications afterward, but huge yay for you Becia!!! I'm so happy to hear about the fun you experienced.

Hi. I thought I should provide an update. Things were going so well. Not sure I can unravel it all - not sure anyone can- but began taking a downturn at the end of May and am in a flare. Maybe a follow-up here would be helpful to others because I think I pushed too hard for too long. Again, guesswork but things were going great and I might have had too much of a mentality of "mind over matter." I ignored some signals - fatigue, weakness, etc- and kept doing things as I pleased. I also encountered some severe emotional stressers. And since I went down on the Paxil in early February I wonder whether there was a serotonin or other chemical issue. Plus some phenomenal heat and humidity came our way. Now fiddling with meds, seeing docs, etc. - fun fun fun. : ) Warm wishes for good days to all.

Lyla, I haven't tried it but a friend with POTS says meclezine (sp?) helps her with motion sickness and nausea. I'm in the same situation as you - a flare with a vacation coming up. My doc added florinef for me this week. That plus lots of fluids seem to have helped the nausea a little bit. My doc said to stay out of the heat, that if I'm going to do things outside it should be early a.m. or evening. I've had an awful few weeks. Hang in there!

I'm sure your parents love you. They just don't know what to do. The people who don't really know this illness have a hard time handling it sometimes...and sometimes the people who have the most trouble understanding it are close family. You are in the UK? Can you try to at least get a phone consult with a POTS doc in the U.S.? Hang in there. The flares come and go. You're not a burden to anyone although it's a natural thing to think. Things will get better!

thanks for the encouragement jk I've been wondering how you're doing! Love the idea of service pony.

PS and your friend's comment about placement of ice packs-- so funny! Would like to see pic of that outfit!

gjensen, hilarious! Raisin, your outfit sounds pretty awesome.

Hope it goes well rgny! Have you tried midodrine? That has been helpful to me for the most part. I'll keep you posted.

Update ... my doc is fiddling with meds. Lowered the beta blocker -- went from a tiny dose to teeny tiny -- upped the midodrine, added florinef...the thinking is the florinef will be temporary to get me through this flare. I hate meds but guess it's worth a shot!