houswoea

Me too! Did you guys ever say why you all have a high hemocrit level? Mine is always low!

Goodness, it seems so silly that they are just as bad as the ones who don't know! Silly doctors, it's your job!

I'm sorry they weren't helpful for you. I believe you!

I did have the table tilt test and he said I was perfect the whole time.

Huh, that's so strange! I wonder what's going on!

While your heart rate accelerating out of control from exercise or climbing stairs sounds like it could be POTS, hitting 198bpm while sleeping does not.

However, things are different for everyone! My heart rate gets really fast while I sleep too, but I have POTS... I hope they figure things out for you soon!

For a long time, every doctor I went to said my blood pressure was completely fine. It took the tilt table test to show the problem. When I'm sitting in that chair or laying on the table, it's fine, but the transitions get me. You should get a tilt table test!

Thanks everybody! I was wondering if they would even give me a handicap parking sticker...? I don't use a wheelchair.

I can't do online classes for my major really, but I don't like them anyways. I've found that it's easier for professors to have mercy on me when I can't turn things in on time if they can see me and my pots everyday. With online stuff, they usually hesitate to grant extensions for anything.

I've also found that it makes me less anxious to carry a card in my backpack that lists my conditions and medicine and all that, so I know if I pass out they'll know what to do.

I'm a little nervous because the house my friends and I ended leasing has stairs... aye yiyi

Issie,

How did you break your foot?

Sometimes I want to tell the people who "can't handle" our illness, "Huh... I'm handling every single day. You don't think I know it's hard?"

But sometimes, the best thing to do is love the one who abandoned you anyways. It's hard, but it helps!

Huh... I had a nodule on one of my scans once, but it went away. They said it was just a sign of infection of something and nothing to worry about.

Thanks everybody. Interesting ideas! When this happened the first couple times, my friends dragged me to the ER and they would check my potassium and take an EKG, so I'm assuming that rules out angina or potassium deficiency. I take those Flintstones vitamins... do you think that's enough vitamin d?

I got to mayo on september 8th. I'm hoping they don't just tell me I'm fine too, because then I'd seriously have no idea what to do.

okay. Seriously. Seriously. I would rather just take it out and get a new one. It hurts. so much. I can deal with a lot... not standing on my own, fine, fainting, fine, everything else, fine! But I can't deal with the chest pain anymore, it hurts so much!! My gp says see the cardio, my cardio says see the gp, they both say don't come back we have no more ideas, and it just hurts so much and I don't know what I'm going to do!!!

I can't deal with this pain anymore!! It hurts and I can't make it stop!!

I feel ya! The last couple mornings I couldn't sit up with out going 150 HR.

Here's my remedy: eat your weight in cheetos or potato chips or something else junky with a ton on sodium. Then you gotta drink at least a liter of water. Then you feel like you're going to explode for a little while. But soon enough you should be able to be just about normal! Works like a charm for me! Wayyy better than the meds on their own or just waiting it out.

Yes, however, they actually convinced me! I saw a counselor and a psychologist because they said I was just crazy or anxious! Quite an experience. It was helpful in the end because they both can give me a note for other doctors to verify that this is not the cause.

Having someone be so condescending to me would make me very sad. How's your heart doing with that? I can't believe you've gone back to this dude so many times! Ditch him.

I'll admit, I'm getting really, really nervous for the start of the new semester. Last year was probably the worst year of my life (my life hasn't been that long though). I'm only taking 13 credits... but I'm still nervous that between the stress and lack of sleep and homework that I'll be in the ER every few weeks like like year.

Have any of you applied for services for students with disabilities? If so, what did you request? I already have a case on file for learning disabilities, but I'm not sure if I want to add my medical information or just try to deal with it on my own.

I know many of you have made it through college... what's the secret?

I know I've said this before and stuff... but ibuprofen worked wonders for me (not just at night, but for everything) until I got a stomach ulcer 9 months later. Then I puked my guts out like a crazy person for two weeks and it hurt really, really badly like my insides were disintegrating. Now, I can't take NSAIDs. It's sad. I miss them.

So.... that's my caution about taking ibuprofen everyday. Let's just be really careful, okay?

I used to dance too

The saddest thing I lost was my roommate. She was my best friend but couldn't handle my sickness, so she kicked me out. I love her still and things worked out, but it still makes me very sad :'(

I have gotten the "you must be on drugs or hungover, go away" from the ER and clinics too... frustrating. I'm sorry that happened to you.

But if it just says pots they will understand? Or should it say dysautonomia instead?

Yayyyyyyyyyyyyyyyy! Happy news!

Interesting. When I had a sleep study done, I didn't have any sleep apnea at all. I was scared I wouldn't be able to fall asleep because of all the weird wires, but it was all good! Although apparently I have narcolepsy, so I can't speak for the insomniacs.

I was at college when it started happening. My family was supportive, but I was so far from them. My support system at school told me I was insane, controlled by the devil (lol), faking, manipulating and my roommate even kicked me out of our room! It was hard, I cried a lot, I got depressed and even thought about suicide. Hard times.

The key to overcoming loneliness and isolation for me was to A. talk to Jesus, the only one who will ever really understand, and B. find a wonderful counselor who believed in me wholeheartedly and gave me a note of sanity for my doctors

No matter who you are, what condition you have, what you've been through, no one can ever understand your heart. They're not you. I've found that God can and does. That helps a ton! Friends and family come around :-P

I'm on nuvigil too, and the problem for me is that it raises my heart rate... but it helps with concentration and it helps the narcolepsy.

how rich would you be?

I'd have like a dollar.

Haha, thanks! I'm not super pumped about it, now I'm underweight and my clothes don't fit, but it could totally be worse! Hopefully I can gain it back once I get the weird medical stuff under control.

Thanks for asking this question! I have my first appointment soon too, but in MN and I've been wondering what to bring with me. On the paper it just said anything that pertains to your condition... so then I just decided it would be best to just bring it all.

Do you have any anxiety/ psychological things? I ask because I saw a psychologist to make sure I wasn't just making it up and I don't know if I should bring my records or not. My worst fear is being sent away before they really get to helping me! I can see you feel that way too, with the EDS comment and all

Also, if I've had like 5 chest xrays in the past eight months, should I get all of them? Or just the most recent one? That was the test of choice I guess!

Liz

Thanks Lenna, that's good to know!

And thank you Sue, I will look at that. I feel as though I've had my thyroid checked, but I lose track, so who knows! :-P

I've read a lot about gaining weight on this forum, but I've lost like 20% of my body mass since I developed pots. I want to know if this is... uh.. normal? Or at least normal for people like us?

I'd ask the doctor, but they just tell me to stop coming back