houswoea

mestinon and magnesium solved this problem for me. Never would I have imagined that I would ever speak of such things. to anyone. ever. And now... here we are. But seriously... mestinon. got things moving.

I know what you mean! I can't even count the number of times doctors have told me it was psychological. It got to the point where I even believed them! God blessed me that time with the considerate doctor. Now I've learned that if they start to assume there is a psychological component, I thank them for their time and find someone new.

Just thinking about the doctor who finally diagnosed me and wondering if awareness was getting better these days... I know it took years for many of you, and nowadays maybe it doesn't take so long... I went to my health service clinic on campus 5 times, urgent care three times, and the ER probably twice before I got sent to a specialist... a nuero guy. Then he sent me to a bunch of different people with different theories, and then when I went to see the cardiologist he tried to tell me it was "just neurally mediated hypotension, lots of girls get it, just drink water, blablah" and I started just crying and crying in front of him... embarrassing... and I kept saying that I couldn't even stand up anymore or make it through the day or have any sort of life and that it couldn't be just something that will go away! He was sweet, he promised he would figure it out. Then he sent me to the electrophysiologist who gave me a TTT and the diagnosis. All in all, about 9 months since I first felt the symptoms. And that's not too bad! It took a lot longer to find a working treatment plan, but thats to be expected. Can anyone weigh in? Maybe it's not so hopeless!

Don't give up! I just wanted to say that while I didn't tolerate florinef at all, don't let people tell you that you can't be scared. They don't know what it's like. They can't understand. I'm sure from the outside it looks like you're giving up or something, but you know you're not! That's mean. don't let those things get to you. And also, I wanted to say the counseling was the absolute best decision of my entire life and I think everyone should get one, POTS or not. They are like cheerleaders for your soul. I would not have survived without my counselors. I thought going to one would be admitting that i was crazy, but in the end, they helped me face all of the fears and struggles and depression that comes with this silly condition. So I guess what I'm saying is that I think all of us should get a counselor, and I wish you good luck with the florinef! Maybe it'll be the med that works just right for you!

I see the sparkles all the time! Especially during flares. The drs don't know why. they say it's no big deal though

Hi friends, I'm actually doing a million times better recently, yay! The only thing that bothers me is that feeling that my heart is just flopping around in my chest like a big fish on occasion. Like it tries to beat but just flipflops. That's the best way to describe it. Because I feel better, I am not nervous about this. But I can't remember what it's called when this happens, and I want to make sure I remember in case I need this information later for whatever reason. Thanks!

Probably :-P I was waiting to see if it was just a coincidence or if it was the magnesium. I will say that it brings my heart rate down wayyy more than a BB ever has. It's a good thing

sounds dumb, but I bruise like crazy when I'm having my period, especially on my legs. People think I'm being abused or something, it's pretty weird! I hope you get some answers

Me and my mother have been wondering the same thing because there is a lot of mono going around in my college. We were kind of joking about how they would have to admit me to the hospital because I would just be down for the count! That's on a different track a bit. You were talking about concurrent conditions, I'm just saying. I'm 21 and I have POTS. I also have tuberculosis antibodies (it's hard to explain what happened with that... usually doesn't mean anything but it didn't work that way for me) Unrelated, but came on at the same time as POTS. Oh yeah, and some people say I have narcolepsy, which is related.

Is there any other similar medication because it is SO EXPENSIVE.... Seriously! The price went up like 300 dollars!!! Who is selling these things??? Just thought you'd be the ones to know!

Hi friends, I wanted to say that my gabapentin comes in a capsule, so it would be hard to take a half-dose. I don't feel dizzy on this medication unless I take it on an empty stomach. But even then, I think it's the mestinon that makes me crazy Sorry I was gone for a bit, I'm trying to be a college student! Elizabeth

I like this medication. I had some twitching issues at first, but after I started magnesium supplements from a nutritionists, they stooped for the most part. I asked him why and he said they act like a muscle relaxer sometimes. This medication really helped my chest pain. I feel as though I can actually function now

So I tried my best to figure out how to do this, and I think I finally did it. I have never, never had to figure out medical things before, or insurance, or anything like this... I'll get used to it I guess. I go every week to a family medicine clinic to see a nurse who hooks me up. It takes about an hour and a half and I get one liter. And my insurance pays 90%. So I get it every week. I can start getting twice a week if I want to, so we'll see how it goes!

Hi friends, I am taking magnesium too! I just started recently. It wasn't for pots but for the slow-motion gi issue. I was scared at first because it brought my heart rate so far down. On good days, it used to be at least 120 sitting. It brought my heart rate down to the low 70s and even as far down as the high 50s after IV saline. I'm not sure how I feel about it. It kinda freaks me out! Elizabeth

Interesting... the place that will do it for me is a "chronic care clinic"... attached to an urgent care place and a family medicine clinic. Hmmm... this is all so confusing. You would think salt water wouldn't be that expensive.

Sad. Can;t give blood, can't give bone marrow. But you can't get POTS through blood, so I guess I don't understand why we can't! thanks for the responses! Elizabeth

yeah, I'm going to post two questions... don't be mad! :-P No one else seems to know! I really want to join the registry. It asks if you're on any cardiac meds or if you're in "good general health"... but POTS isn't a heart issue and I mean, I'm not stellar, but I'm not dying. And I mean on my drivers license renewal I said I wasn't taking any meds to help prevent loss of consciousness which was also a lie, and I've been good so far... I really want to help the people who can't fight without our help! I mean, whats a little (a lot?) of tachycardia and passing out on the table compared to helping save a life?? Opinions? Has anyone joined? Thanks for your help!! Eli

yeah, I'm going to post two questions... don't be mad! :-P No one else seems to know! Okay, so I finally got a prescription for IV saline... but it's kind of a "whenever I want" type of deal. And I was wondering how much would be prudent? How much do you guys normally get IV therapy? I'm thinking once a week might be good... but if it's super expensive I may only want it every other week? Or maybe only when I can't move without passing out? My doc said he hadn't heard of this treatment, but called another guy who said it would be fine. so basically he didn't know. Ps, I have rockin insurance, so that will help.

Me too I know mine aren't aruas, but I figure if it has been this long and nothing bad has happened, I'm probably good. I like to air on the side of a medication side-effect.... maybe it's not, but it's certainly annoying and frustratin!

You and I should be friends! I also get debilitating chest pain... it usually feels like I could learn to deal with the POTS if the chest pain wasn't so unbearable. I used to hide the health stuff from people too. Whenever I went to the ER, they would just say they didn't know or I was crazy, but the people around me were too scared to let it go. I had a echo and an ekg and all seems well. My doc just recently prescribed me some pain medication called gabapentin. It's been helping a TON! Also, Ibuprofen usually helped some with the chest pain. other pain meds didn't help me as much (I couldn't tolerate them) but maybe they will help you? Good luck!

No side effects from that one yet that I can tell. I'm on seven other medications too, so it's hard to really know whats from what. But I can tell that it doesn't hurt as much. And yes, he started me on a very low dose, and I'm supposed to work up to a higher one later. Right now it's one 100 mg a day, next week it's be two a day, than three a day. I'm going back to school in a week! I decided to take more classes because it's been so much better!

Hey friends! I am very excited about this and I wanted to tell you guys! My neuro dr at Mayo is just phenomenal... he's a really great guy! But anyways I begged him for some pain killers that didn't make me trip out and he said he could give me gabapentin.... never heard of that before but I've been taking it and I can already tell a difference!!!! It's like such a big deal for me... the fatigue and fainting are annoying, but the chest pain was crippling! And if that is pretty much gone... maybe, maybe, maybe I can get on with living!!! Yayyyyyyyyy

Your daughter could qualify for accommodations for health issues, if you wish. I realize that you might just like homeschooling for now until you get a handle on her health stuff, just thought I'd mention it. She could go to just an hour a week even, just for fun and to be a normal kid. But I'm all for parent's choice. Or there are probably some programs that have play groups for medically fragile children too! I don't have kids, I just like them... ECSE/ECE major Before I had POTS I was learning teaching in a preschool room, and there was a child (5 years) with (from what I can tell from what they told me) something at least similar to dysautonomia. She did really well, and they included her in crafts and song time and things, and then her parents took her home after a while. She liked it! But like I said, totally your choice! I hope your child gets better and you can find a treatment that is more reliable!

Wow, good to know that I'm not the only one with bleeding issues. The biggest problem for me is the associated weight loss and blood loss.. I know you're not supposed to lose that much, but for me it really knocks me out and then I get the bruising and the fainting things... I think they say the patch has 60% more estrogen than a pill. It's helped the bleeding so far, and the I've been able to get up and do some stuff for the last few days. It's been about a week. I'm ready just to chop it all out down there I just get so sick of it! I swear I've been bleeding for like a year now. I asked the doc if there was a connection between menstruation issues and POTS and he said yes! It's something about stimulation in the hypothalamus, but he said they haven't studied it much and don't know how to stop it yet. But, maybe soon? He was like the super expert or something so I believe him

I'm trying to figure out if the crash I'm feeling is related to my recent switch to the patch. I've been on two other types of pills and neither of them have controlled my menstrual cycle since POTS started. So I got everything checked out down there and it's all good, but I'm still bleeding prrretttty much everyday. So the doc said to try the patch since it's got a lot more estrogen, and ever since I started it, I'm felt worse. But it could just be a coincidence. So I guess I'm asking, anybody get worse from the patch?