houswoea

Yeah, at one point nuvaring worked, but it, like every other thing I've tried, only lasted about a year. And I always felt like it was falling out I think my only options now are the shot, which scares me, or IUD. Or else have my period everyday and not walk and stuff.

Sweet. Thanks for your responses. I'm 23 and single, so I don't need it for contraception. I've just taken birth control all this time to stop my period from wiping me out twice a month.

My hormones are OUT of control. The hardest thing is that I continually have my period, and whenever I have it, it really brings out my pots. Two years ago I had a scope down there and everything was fine, so thats not an issue. They are suggesting an IUD, and I'm wondering if anyone has had success with that. All other methods of bc no longer work. My appointment is at the end of march with my mayo doc. Thanks! Liz

Hello friends, I'm asking this question again, I know, but I still have no answer so here we go. Last year I fell on my shoulder and injured it. Apparently, saws the ortho surgeon and mri, I stretched out the capsule and now it's unstable. I've done lots of PT but it hasn't helped at all. Pain wise, it's not so bad unless I'm walking or lifting or climbing, but I'm working with young children with disabilities who need to be transferred safely. Plus, I've never had a fixable problem before! But the doctor knows pretty much nothing about either EDS or POTS, so I know that isn't factoring into the decision. Anyone have experience in the anesthesia or shoulder surgery area? I'm to the point where I must make a decision and call to schedule the surgery with the next 3 days. The options as presented to me are, live with it forever or have the surgery, Clearly I'm leaning towards the surgery.

Okay, I've been a bit of a question maniac, but here's another: So Last year, I hurt my shoulder by falling on my outstretched hand. After a while, they diagnosed me with EDS (hypermobile). So I did PT for a while and when I went back to see the ortho doc she said it was still unstable and she wanted to evaluate whether I should have surgery to tighten it. I just don't know if I think it'll work, and who knows what it would do to my pots. And I'm not really psyched about the recovery period since I am going to student teach... Has anyone tried other options or surgery?

That seems common. While at an appointment, they sad they wanted me to be worked up for possible arrhythmia so I was curious about everybody else.

I use it for chest pain... it helps.

Hello friends, I am wondering if any of you also have arrhythmias, and what kind? Liz

I hope so too. The pain is just kid of all over aching, like my body is just too tired to move. I wish it would stop. I decide this week if I can keep doing school or not.

It's mostly because I can't get to class without crying in pain the whole time. I've missed two weeks so far. Plus, I'm an early childhood special education major,so I have to work in the preschools. I have no idea what causing the flare. Nothing changed! I saw an ER doc, they never know anything, and I saw my primary. I guess I could call my mayo guy, but I'm scared they will tell me I'm just crazy. My symptoms are mostly that I just can't be upright without being in incredible pain, like my whole body is just freaking out! And I'm so tired. I'm just skeptical because it's not like my usual flares, with high HR, chest pain, and passing out. I haven't passed out once, and I haven't even blacked out. And getting IV saline didn't help! I want to go to school so badly, and I hate that this is getting in the way. It's very depressing. I know I can't get medical advice here, I'm just hoping for leads or suggestions.

I used to be scared too. Counseling helped tremendously. Not because I was crazy or even had trouble with anxiety, I just needed some extra support. It was the most important thing I did to help myself. Churches offer counseling for free And insurance will pay for some counselors too.

Hi friends, I am desperate for your help. I don't know what to do! Two years ago when I was diagnosed, things were rough. I couldn't get up at all, I was in so much pain that I was addicted to sleeping pills and it was terrible. Things got better though, so much better they thought I "grew out of it" though I haven't grown in like nine years (I'm 22). Okay, so two weeks ago, I had a flare up and I wasn't worried because that happens, but it hasn't gone away and I'm looking at dropping out of school again. I don't want to. I am so close to graduating. It's not fair! The thing is, my heart rate has been relatively stable, staying in the 70s-80s. When I was first dx, it would run in the 120s even when I was laying flat. Also, my blood pressure has not been low. When I was sick before it was 70/40 or lower. It's been just fine, holding at 110/60 with midodrine. Drs. have no idea, just blame the pots,or don't even know what that is. Please help me! What the heck is wrong here?!

Nothing! I was doing the same things as always! What could it be??

Okay, just in case there's some help for me out there, I thought I'd give it a shot. I was doing so good, that my Mayo dr said I was cured and that next year he'd start taking me off meds. About a week ago, I started having symptoms where I couldn't get up any more. And they didn't go away, and now I'm not sure what to do because I'm in my last semesters of school and I can't even go to my classes. I got some IV saline and it didn't help one bit. What can I do? This is really sad for me. I thought that part of my life was over.

I am a college student! Here are my thoughts. I lived with a roomie when I first got POTS and it was a nightmare. I scared her with my problems, and she always felt like she was responsible for making sure I wasn't in need of medical attention when I was having flares. I like living with roommates and having my own room to hide in. I get priority registration because I am signed up with the services for students with disabilities. I also get an absence memo, telling my teachers I may need accommodations in when I turn things in or come to class. They have been so helpful for me, and it's not weird at all. And for the lower class load... that's really up to him, but if he takes less than full time, it'll mess with insurance,financial aid, scholarships and other stuff like that, so watch out

Only on beta blockers occasionally... but if pooling blood was the problem, I don't understand why they would be cold and not hot!

My doc at Mayo gave it to me. Before that I was taking actual pain pills and I was really sick on them. Before that I took ibuprofen but then I got stomach ulcers from taking so much. He said it's for nerve pain. I used to take it 3 times a day, now I only take it if there's pain.

Well drat. I guess I'll just suck it up!

I take gabapentin. It seems to help.

Man alive, this is bothering me. It's, like, the smallest thing ever in comparison to the other symptoms that I could be having, but gosh is it annoying! And now I'm just curious! My feet have been like icebergs for the past month... doesn't matter how warm it is outside, what kind of socks or shoes I wear, or how warm the rest of me is! They're even still cold int he shower! What in the world. Right now I'm wearing two pairs of socks, but it's like I'm barefoot in the snow! They don't hurt, so I'm not thinking it's neuropathy. It's just uncomfortable. Anybody have any ideas? It's probably just one of those things I'm supposed to deal with.

Hi there! I'm from the cities, but my doctors are all in st. paul,or in rochester. If you're already in southern mn, might as well hit up mayo! They've been really good for me!

Lol, I HATE the "slightly stoned" feeling, it drives me crrrrrazy.

Haha, some ERs have accused me of being on drugs, they ALWAYS test me for them. When I was really sick, I almost walking out of dorm room without a shirt on, two separate times!! Also, one time I ended up somehow sitting in the shower with my pants on but no shirt, and I didn't even know how I got there. Good times. freaked the heck out of my roommate.

Thanks everybody. And yes, the POTS was so much more disabling, and still is during flares. So on the plus side, at least I can stand AND I'm not even screaming in pain anymore! I'd rather not fall apart, but God knows what he's doing. I wish He would let me know what it is

Hi friends, I was trying to decide who to tell about my frustrations. I thought you guys would understand. I was diagnosed about two or three years ago with POTS. I'm doing much better now with that, walking around and everything Now I am diagnosed with EDS type 3. I am really frustrated that this seems to be unending. I just want all of it to stop.