roxie

Relax86, I was telling my mom that the other day. Its one thing to get through activites and another thing to get through them well and feel well before, druring, and after. Ppl seem quick to say just bc you do one thing you"re better when they never see the aftermath

There's a few good POTS dr's in Dallas. One of them may know of a good immunologist

Vanderbilt tests NET. That may be another possiblity

I really don't know, it all depends on the dr you get and the way you present it to them. Maybe someone else will have a better answer.

I don't know how I feel about this one. I want to be encouraged by it becaue it is wonderful people get better. However, doesn't it seem like they are blanketing POTS?. They don't say anything about meds or lifestyle changes used, if they improved on their own, or if they had any other things that comes along/can cause POTS. Does anyone feel like they should have a better diagnostic criteria for POTS? I know my hr can go up over 100 points in the 10 mins & that's a pretty significant difference than 30. Like if they could score it grade one - 30bpm, grade two- 50 bmp. Or something like that.

Do you mean having the experiment done at Mayo?

There is a dr in Buffalo, NY dr Svetlana Blythsteyn that does phone appointments. I don't know about pricing or insurance but i wonder if she'd be a possibility

Thanks for posting this Issie! I've watched this video, thought it was amazing & wanted to post it. However it's not supposed to be posted on forum. I hadn't thought of just telling everyone to go there and watch. Im going to br bringing this up to my dr when I see him in a few weeks,

I think you expressed yourself very well Edin We are all trying to find a lifestyle that works, at least I am. It's a matter of trying things and when one does work moving on to the next as well as doing my best to stay positive and believe there are better days ahead. Im thinking I saw somewhere someone mentioned a dr in Houston? If not, i know there are some good dr's in Dallas. Dr Amer Suleman is great as well as Dr Eric Eichorn. Getting into a good dr is probably your best bet in finding a lifestyle that works,.

This is a hard one to answer. My feelings towards it change. Sometimes I feel like im totally gonna beat it and then there are times when I feel I need to make better strides toward acceptance because I'll deal with this forever. I also know I have EDS and that doesn't go away, can POTS go away when you have EDS? Idk, different people say different things. I know as of late I've been a little down bc it seems like my progress is stalling some. My dr tells me that I am the same girl I always was and ill be able to do everything I did before. I'm not sure if he means cure or just getting by. It's all confusing really

Best wishes!

I took it for about two weeks and noticed my heart racing & pounding real hard. When I stopped it, they extra palps went away

I sweat a lot, too. Especially at night. There's powder, sweat absorbing clothes (they can be pricey) ice packs and fans. That's all I can think of. I keep the AC slightly higher with a bunch Of fans on me

I've been on Florinef since I was 12. I'm now 26. I think my hormones are ok. I've never never that before. I monitor my electrolytes though

theres definitely something to it. i did a post a while back with a bunch of links to it, including dr grubb. it also has a link to an affordable hrv machine

Wow!! Good job. I hope your able to

My dr put me on evening primrose oil for PMS & has helped some. Like instead of torture starting to weeks before it's down to about 5 days before bit when it hits, it hits, ugh. I tried continuos birth control for a while too, for me, for some weird reason it didn't work. I got my period every two weeks? I have pain & fatigue & digestive issues too. A warm water bottle or rice bag are my favorites. Sometimes (like yesterday) my back hurts so much I can barely stand straight, I end up hunching over. I don't have an answer for you but I have been researching & am going to ask to be checked for Pelvic Congestion Syndrome (PCS) where the blood pools in our ovaries & uterus like it does our legs. It can cause a ton of pain & if found can be embolized. Maybe it's something you can look into to as well? Hope this helps

Hi hippy chic, I'm sorry you are having so much trouble. I have gone through time where I couldn't walk a few feet without fainting too. It's very important to start slow, like aunie said it feels like crawling. Push yourself but not so much you faint, it may only be an extra step every few days but some progress is better than no progress! For me it's been a combination of the right meds and finding the right balance of pushing, right now you may only be able to do some toe points or leg lifts in bed. That's good though! As you build a little muscle in your legs you will be strengthening the muscloskelatal pump which will help support the blood return to your heart when you do stand. It's possible to get stronger, its just very very slow. If you need help figuring out what would be good first steps to take in getting stronger we're here to brainstorm with you Aunie- I'm going to be looking into PCS too. Your embolization didn't last? That is very frustrating, I also wonder if I may have endometriosis. I'm not sure how that would relate to POTS though.

Mighty mouse- you are considered hypermobile but you don't have EDS?

I had some nice typos last nice, I was tired, lol! It's the ilIobatol band! No, my brother does not have EDS but I DO. No one else in my family has EDS either. This is the way it was explained to me. Some families have a gene for EDS that lays dormant. At times the gene mutates and the baby born with the mutated gene will have EDS, I.e. ME. EDS can lead to POTS as well as other things. Now that we know about EDS we see some family member with a few traits so we think we know where the gene came from. But as the geneticist told me one trait in and of itself (like one double joint) isn't enough for EDS. Actually, almost every person has at least one loose joint. Does that make sense?

With POTS I think it's worth investigating & not letting any stone left unturned. However, i see your questioning it if your dr already thinks you're quak. What kind of referral do you think he'd be willing to give you? EDS isn't the simplest diagnosis & is best diagnostic by a geneticist. Sometimes a rhumetologust or orthopedic is also familiar. A few years ago my POTS dr acknowledged my flexibility but it didn't go further than that. My new POTS dr picked up on it in my first visit going through my history & sent me to a geneticist who did the diagnosis. There are a lot if things that go into EDS so it's hard to say just bc you can do one "trick" that to have it or you don't. Example my brothers thumb & shoulder are double jointed. He doesn't have any other signs of EDS. I have no double joints but am extrememly flexible & meet many criteria for EDS. If your uncomfortable bringing it up to your dr maybe you could spend more time investigating EDS on the national foundation's site & forum EDNF.org Or get Dr Brad Tinkle's book "Joint hypermobility handbook" Lastly, my hips really pop a lot like you described & ssometimes my shoulder too. My hips make an awful noise & then burn. I talked to my exercise physio about this & he said it's extremely rare to dislocate you hip. It is likely you ilabitol lobe- then tendons running through your hip, pelvis, & femur moving. Dr Tinkle's book also says that as well. Maybe that's whas happening to you too. Hope this helps

Does anyone know of this is different than gastroparesis?

Yeah, seeing other people move forward is hard for me bc I feel perpetually stuck

I'm sorry you guys are having a hard time. Ive had a down day too. I feel very left out & like everyone my age is moving on & having good things going for them and I have POTS/EDS ruling. Its torture listening to my brother and all the options he has in getting out of the military on a few months & locations he could get a job when still at home with my parent trying to get through the day. I'm sorry I don't have better words of advice but I know how you guys feels

Yes, it's known to be at least a year. Idk for sure but from what I've heard if he wants testing done he has your local dr do it. There's a few good dr's in Dallas- Dr Suleman and Dr Eichhorn.