roxie

Thanks Alturism, that's what I think happens to me.

First, congratulations! I'm sure your happy even though it's stressful. A couple years ago a friend of mine got married and asked me to be a bridesmaid. I was thrilled she wanting me there after all I've been through in relationships It terrified as how I was going to do it. Attending a wedding is hard enough being a bridesmaid is so much harder. I had to be honest and upfront about my limitations ans I still overextended myself bc I simply wanted to be included. I think a lot of it has to do with those around you in your family and the accommodations they are willing to make too. For my friend there was almos a year to think and plan. I wasn't able to do a lot of physical planning but I did things online like looking at locations, decorations and things like that then sending to my friend. The shower was thrown by her older sisters, I only has to show up and I pretty much stayed at the brides table. Can't help you much there. For the dresses, we knew the designer and I picked out my top 5 online, called th store to see if they were there and then scheduled a time to go so trying on dresses was pretty fast. I did that for the scone trip do dresses as well. The fitting, gosh, I had gotten a stomach but a month before the wedding, it was terrible. I called the tailor and explained. She agrees that if i put the dress on and marked where I wanted it altered with pins my mom could drop it off and she would tailor it that way. For the wedding, I had to skip rehearsal. Then the day i didn't get ready with the other girls bc they got up early and went to the spa. I decided to sleep and then my mom did my makeup laying down and my hair at home. I got there my friend had talked to the photographer who found this old chair that fit the wedding decor for me to sit in for the pictures, everyone was gathered around me. Like the bride sat on the arm of the chair and it turned out pretty! The venue had a little room I could lay down in and we decided bc od the standing on the maid of honor and the best man would stand through the ceromony. Actually, I ended up having such trouble getting over the stomach virus I has to use a wheelchair bc the aisle was SO long. I did a couple standing pics but they mostly worked so I could be seated. I had told mt friend that I would do everything I could to get through the ceromony and intros at the reception then I could collapse. Running on happiness I was blessed to even eat dinner at the reception. One of the bridesmaids was great and pushed me around in my chair to talk to people. It was a really special experience for me, Ive struggles with keeping friends and the fact that someone saw me worthy enough even with my limits to want me there meant the world. In the bulletin thingy the bride & groom wrote stuff about the attendants. I had not seen it before wedding (it was a good thing) it said something about "tonya has always smiled through tough circumstance and I'm so happy she's pushing through today." Towards the end mt friend and the other bridesmaid asked me if i had a little energy left for a surprise. I said ok & the tool my chair, pushed me to the middle or th dance floor and "pretty woman" started playing. They started twirling me and dancing around me. At the end of the songs (ugh, I'm crying remembering it) everyone there stood up and clapped and saying "woot" the photographer got in the middle and tool pics my smile was so big but I was blushing so badly I was wiped out for like 10 days after but it was totally worth. A really special time that took a lot of planning a lot of honesty & openness with my friend but I think with ingenuity you can find ways to accomplish it and do it. Good luck.

I don't know the name of the other systems she's uses, she wouldn't tell me the names and said they are for professionals. There is the Heartmath computer system, emg muscle tensions thing, and a hand temperature thing. She also talks about levels where you stand and do the breathing. I didn't get that far and she couldn't tell me what the levels were and why they were so important. I think it's was just practicing the breathing & muscle stuff standing. And then she tries to give your supplements and exercise advice.

I've noticed that too Rama & monstrosity and researchers say its pretty rare. It's something I wonder about ?

On Facebook there is the Dysautonomia Friend Finder group and they have pictures of each state where people post drs. May e that'll help!

((((Ash)))) that's is so disheartening. I don't have any advice except to hang in there and do the best you can. We all have had our fair share of drs who were idiots and I think we will continue to run into them. Sadly we have to be bigger than th and keep searching for solutions ourselves. Have you tried compression when you are that low?

@Angela- he made me re-do everything as well, he wants to see things for himself. He's made me re-do test throughout this year as well. @JenLR- did you get int Dr Grubb? Was he able to give you more guidance?

She could set up a phone consult with Dr Blithsteyn in Buffalo and then decide if she'd be willing to travel there.

Idk Abby? Different dr's believe it different treatments. There isn't a consensus

Be prepared to spend time waiting.

I see him! He's the best I have seen . Very thorough with testing. Good luck and let us know how it goes.

Ha, thanks I thought it was pretty funny too

I found this last night and thought it was super! http://hopealways.wordpress.com/2010/06/12/must-read-for-all-p-o-t-s-patients-and-their-doctors/ It says a few things I hadn't realized. One of them touches in what I think Issie posted that mayo is now saying, there's two types of hyperPOTS. The true hyperPOTS and a secondary form to hypovolemia and some other things. Primary hyperPOTS is the rarest subtype at about 10%. The secondary form is 30%. And the partial dysautonomia type is about 60% of patients. Do you think that's why some of us seem hyperPOTS sometimes or have hyperPOTS symptoms with out being fully hyperPOTS at every moment?

Big. Gentle hugs ((((joy))))))

I haven't tried these, I just saw the on Pinterest today, but they look like we could do them! http://www.t-tapp.com/articles/legs/index.html http://www.t-tapp.com/articles/legs/phase3.htm http://www.t-tapp.com/articles/legs/phase4.htm

I forgot to answer you guys! Usually an interventional radiologist diagnoses and treats pelvic congestion. There is a surgery where they go in an cut off the blood supply to the extra large veins causing the pooling. There has been some talk of it here before so feel free to search it. Alot of what you guys are saying sounds like PCS. There are a few visual clues like of you have visible pooling in your abdomen when upright or varicose veins down there.

Sure, give me a few minutes! Some people say there is combination pots where it flips between hyper & plain pots. I'm not sure if that's accepted by dr's but it wouldn't surprised me. HyperPOTS is short for hyperadregernic pots so yeah that's be the hyperadregernic components.

Altruism, you sound just like me! I keep asking the same question and wondering if getting through us only by feeling like death Nd bein miserable. I try to be clever to accomadate and accomplish more things but I just don't know. I've been feeling like I have to come to terms with the fact that I don't know and I can't plan my future. I can only try my best today. Also, I've been reading up on hyperPOTS and it does say that you it can be managed but you will likely need lifelong treatment.

Really? What does he say about that?

My eyes didnt align properly and I had to do vision therapy as a teenager. I still do the exercises daily. This sounds more than simple tracking though. Maybe you should find a good optometrist, my SIL was having eye problems at night and a twitch. She went to one a few weeks ago and the found nyastygmus and an astigmatism. They have her glasses and she has to see a nuero (maybe the for the nyastygmus?). But I hope you can find some help.

That's interesting peregrine. I pulled out labs yesterday and I'm not sure some high, some normal. However, I start clonidine in decemeber because of how much my heart runs wild in my sleep. It has had more of an effect on my heart than any med I can think of. Sometimes my resting heart rate is in the 60s! And now usually around 75. That's never happened before. I don't have my latest ttt results on hand or my autonomic stuff but I have old ttt's the one done by dr Stewart in NYC. He diagnosed clearly low flow pots with pooling.

Thanks, I think they did the 24 hr urine for sodium & pheo. Last I knew my dr didn't see the point in upright catacholamone testing, he said you have it or you don't.

Have any of you checked into pelvic congestion syndrome?

Thanks. I'm trying to figure out if I have hyper pots. I know lat year my dr told one of his patients that testing for it was a waste of time bc you either do or don't have it. I've been afraid to ask him. I'm not sure if his opinion will change in a year. I may just ask him or at least ask for my autonomic results. I also had a 24 hr urine. Don't know if it was catacholamines. Ill have to pull out the results tomorrow but the sr said "tou don't hold water" like I pee too much or somethig. I think that's a sign of hyperpots?

Thanks for keeping is posted . So you can see hyper pots on the valsalva? Did they give you any lifestyle advice on how to get stronger and increase activity?