houswoea

Like on that one episode of House? That was the episode where the guy had pots! On the medical front, I'm sorry things have been hard. I'm glad you're here to talk with us. I really hope things will get on track for you once this crazy stuff is straightened out. Liz

I've lost about 20ish pounds in the last 8 months. They say it's the pots or the ulcer I got from drowning the pots in ibuprofen, but I don't know. I try so hard to gain it back but I can't. I haven't been size zero since 7th grade, haha.

yeah and humanb4monitor. Where did she go?

I was scared I'd be bald a few months ago! I lost a tonnnnn of hair! It turned out to be just stress though! I didn't think it was possible, but once the stress of classes was over, it stopped.

Okay thanks! I'm a special education major... sometimes they give a name of a common disability or condition and then have a reference in the back with a little more detail. I was interested because I know alot of people with EDS get POTS, so I read about it! Thanks for the info!

I'm just terribly curious, I know many of you have EDS, and I was reading something about it in a text book for school (yay for summer credits). I was reading the markers of the hyper-mobility type, and this is why I was curious. Most of the things on there surprised me because I thought everybody could do them! Like hyper extending knees and arms, making your fingers touch the back of your arm, ect. I am still surprised that most people can't do that, to the point where I'm not convinced they can't. So naturally, I asked my brother to try to do the things on the list and he couldn't do it. So... my main question is this: do all you folks with EDS of this type have trouble with dislocations? I ask because I've always been freakishly flexible... but I was a dancer so it worked out well. I've never dislocated anything though, not even after 15 years of dancing. I developed POTS just this last September. Just trying to figure all this stuff out, because I've certainly found my doctors can't on their own :-P Elizabeth

Welcome! We're happy you're here! I can't believe you even NEED to fight the SSDI people! I'm going to punch them in the face. Seriously, what are they expecting from you, superhuman stregnth? Thanks for sharing your story, Liz

Lieze, Somebody told me today that "the whispers of inadequacy are not from the One who calls you". No idea if you believe in Jesus, but I think regardless, the same holds true. It's not about what you can't do (make a sandwich), it's about what you CAN do with what you can't do (foster awesome responsible kids, show humility in the little things, overcome obstacles, and be a wonderful mother). Lots of people can't do that, and YOU can Or, elementary-school-poster-style, "It's not about learning how to avoid the storms, it's about learning to dance in the rain". Lol. I'll let you all know if I ever figure out how to do that! :-P Love, Elizabeth

Don't feel badly about that at all! If they are old enough to put their own dishes in the dishwasher, ask them to do so, and expect it from them. They will understand, even if they talk back. If you want to really be there for them, don't let chores they are capable of doing on their own stop you! I mean, it's different if they are young, but I was making my own lunch when I was seven. I love my parents, they were great, and they expected me to do those things. It's not mean, it's practical for you

I get that. But I don't know if it's typical for pots or not, my cardiologist didn't think so.

Lol, I don't think anyone's ever said that to me! Sometimes they say "well, at least it's nothing serious!" when I try to explain POTS and that bothers me sometimes! Although to some extent it's true! It could be so much worse. However, it makes me feel so stupid when they imply that I'm being dramatic.

I'm an undergrad student, and I receive accommodation from the services for students with disabilities for lots of things! They are the ones who make sure you get accommodations in classes and with professors. However, at least where I am (Wisconsin), you have to talk to the dean for things like excuses for classes if you have a hard health day or a doctor appointment, and you need to talk to housing for furniture stuff. If you talk with the SSD first, they can help you with the rest! Professors have always been amazingly understanding for me! i hope it's the same for you!

They said my heart monitor was normal too, but it wasn't. When I inquired further, I had a heart rate range of like 50-190, and all I do is lay down. So... I guess my advice is to really push for answers? At first, they said I had OI instead of pots, but then I talked more about my "episodes" and they gave me a tilt table test. Maybe you should get one of those?

I tried it and I didn't think it made any difference for me. The only good thing about it was that I could lay down without getting a headache from midodrine.

I went to renew my license and it had a question that said "I take medication to control loss of consciousness or voluntary control, yes or no" and I was like.... hmmmm. I don't know what to write! Because I take midodrine (and a million other things) but I think I'm still allowed to drive and I didn't want to try to explain pots because it's really hard to do. So I said no... good decision or bad decision? What do you guys do?

Well, I used to dance...

I used to get that too, my roommate brought me to the ER three times because of it, but no one ever could figure out why. Now that school is over and I'm home for the summer, things have cooled down. Plus, midodrine helped tremendously... no more twitching... if I figure anything out, I'll let ya know!

restless leg syndrome?

I found the way to get in to see someone was just to cry and sound desperate. They got me in, it's later than I'd want, september 8th, but I'm not on a waiting list, at least! Plus I just called them up like a week or two ago. Just keep calling until they get you in I don't know what "checker" is either! And I, as of now, go to the st. paul heart clinic.

I avoid the ER until I am dragged in there by people who don't understand that they're just going to tell me I'm fine. I'm sorry you had to go there. But at least the techs were nice, every time I get a resident or tech, they listen to me much better than the trained doctors. Props to you for being patient with the people there, I usually just get angry and start crying! Hope you feel better, Elizabeth

I take it- 5 mg three times a day. I don't faint, but you're not supposed to lay down and thats really hard. I like it better than florinef though.

yeah, that'd be great! I have an appointment at mayo in september, haha, but I'm willing to do anything! I do have a sleep problem, I have narcolepsy. Thanks so much for your help!

I've noticed on a few signatures that some of us have both narcolepsy and some dysautonomia troubles. I was diagnosed with Narcolepsy because I was tired all the time. I did a sleep study, and that was the conclusion. Later, I got the POTS diagnosis and then I wasn't sure if that canceled out the narcolepsy or if they were both a factor? Is there a connection between the two? It seems strange that both should occur at once! Especially if it's common or something... anyone else have both? Thanks for feeding my curiosity. Elizabeth

Well... we're trying really hard to get an appointment with somebody, but it's not looking like it will be in the near future. Ay-yi-yi. Any suggestions to make things go faster? Should I just try to get in with any random doctor? Maybe then it would be easier to see a specialist, if I am already involved with the clinic? Tried dr. referrals, tried using my father's pull with the cardiology department... nothing's working!

Me me me! I didn't start bruising until I got POTS!! my roomate always comments that it's a great mystery where they come from because all I do is lay in bed! Bellamia, in regards to the Ibprofen, it surprises me that it would be a long term solution... I got serious stomach ulcers from taking over-the-counter stregnth ibprofen for too long, and that was only a few months! Besides the bruising, did you have any other problems?