Brand New And A Crazy Week At Mayo

[Millerla]

So, I've been at mayo all week after arriving Monday and having all sorts of issues with insurance.(my primary doctor referred me to someone who referred me to mayo, but since the referral wasn't from my

Primary doctor, insurance wouldn't cover it). I had everything that could possibly be tested tested, including a rectal exam(fun!). By the end of the week, all of the pediatric nurses knew exactly who I was. Today I didn't even check in, they just said "Laura, you can come back here". A couple frustrating things though:

the GI said he knew what I was going through, because he used to pass out after seeing blood in med school.*insert eye roll*. Also, the exercise stress test was really bad, because my hr got up to 200 bpm before they let me stop(actually, I stopped, because I couldn't feel my legs). My mom had to help me change then roll me out in a wheelchair.

The ttt, however, went as well as it could have. I didn't pass out, thank goodness, but they only had me up for 10 minutes.

Anywho, I finally today, after 2 years of feeling horrid have a diagnosis of POTS! They didn't give me any medications, except for aerobic exercise and salt/fluid intake. Dr. Kizilbash said I could have a beta-blocker if I wanted to, but didn't suggest it, so I am going to try and go with out. In December now I go to the PRC for a 3 week program.

Anyways, it's been a crazy stressful week at mayo(including our car getting broken into) and I'm glad to be home and with a diagnosis, I just thought I'd introduce myself!

[corina]

Hi Laura, welcome to the forum! Glad you have found us, you'll find a lot of people who understand and can help you find answers in case you need them! Also there's a lot of info on our main site, happy reading!!!

[flower]

Welcome! I am glad you finally have the diagnosis. I really hope you find some things that work for you and help you recover.

Take very good care! :-)

[sue1234]

Welcome! But, OH MY!! They are now prescribing aerobic exercise as a first-line treatment, right off the bat! That's what these latest research papers are doing to our care...

[brethor9]

yikes!! aerobic exercise???? I can barely make it up the stairs some days.......what is wrong with these doctors and not being able to get it through their thick heads that this illness is not caused by deconditioning and lack of exercise? they need to start reading these posts ;(

[Millerla]

The exercise stress doctors scared me, and one of the internists I saw didn't make it much better. Apparently I am so deconditioned my heart is working at 66 percent of what they were hoping it would be, and way far off from what is normal. But afte having the exercise test, and my hr going up to 200 bpm, they suggested that my hr should be up to 154 bpm at least. Ummmmm, no. The internist just said not to worry about the hr and to try and do aerobic exercise for 30 minutes before dinner and strength exercises when I wake up. I've been trying to relax since my hectic week and not start my conditioning until Monday, so I have no idea how it will go. I've still been at school most days and dance classes twice a week if I feel up to it, so I don't know if it will be too difficult. It has seemed to get worse just in the past couple of months.

The doctors seem to "understand" me, yet I'm frustrated because other than the select few dysautonomia doctors who actually have it, these doctors have no idea what a day for me feels like. That's why I'm glad to have found this site!

Also, I'm not allowed to take naps, which I think I will have the most trouble with because one moment I'm putting my feet up, and the next my mom is yelling at me to wake up.

[Millerla]

Oh, and all of my mom's friends are annoying me because they keep saying "at least it's easy to treat". Notsomuch.

[peregrine]

Depends on the aerobic exercise, I guess (assuming you can do it) - even if you're not deconditioned (pre-POTS I walked 3-4 miles a day, so it's not like my legs were weak), they can help build up some of the skeletal pumps in the legs. Though I agree - I got really tired of explaining that I wasn't deconditioned, it was in fact something else, I got exercise, etc. Obviously it won't help everyone, but it's probably worth a try since it's usually fairly safe if done properly. My ANS doc prescribed recumbant exercise biking and swimming, which haven't done anything noticeable for the POTS but are good overall.

[jangle]

Exercise will improve you, but from my experience it doesn't necessarily last and I believe this is Rama's experience as well.

At my best (mind you I was jogging 5-6 miles + weights + stairmaster + salt water fluids) I would have times when I felt near remission from POTS.

Currently I'm starting to feel better again, but everything fluctuates for me. I had a pretty bad 2 month long relapse.

[sarahm]

I think if you are able to go to school and to dance class you shouldn't have too much trouble finding some exercise that works for you. I agree with others that POTS isn't caused by deconditioning, but I (and expect most of us) was definitely deconditioned as a result of having the illness. I have tried a number of medications and none have worked, only exercise has helped in my recovery. I think going the no medication route is commendable. I am also considering doing the no medication thing. Im getting tired of getting the side effects from new medications that don't help my symptoms.

Anyway, good luck.

[Christy_D]

My son went through the PRC program last October. He made many friends that he still keeps in contact with there. Be aware they are very strict with what they want the kids to accomplish there and also what they expect from the parents. I did not know that the parents would be going through 'parenting' classes for parents with sick children. I listened to what they had to say and decided for myself what we would implement once we got home. (ie-No consequences if my son is not able to do what they expect him to be able to do).

Also, they want kids to stop seeing specialists and stick with their primary care doctor. If I had done that, we wouldn't have gotten my son his MCAS diagnosis. I think the program was harder on the parents and what they wanted us to do, than it was on the kids. Most of the kids stayed at the Ronald McDonald house, but we stayed at the Staybridge right across the street from the hospital. My son spent most of his time at the Ron.McDon House though.

Even though my son was still unable to attend school after completing the program, it was a positive experience for him. He has a support group that he texts and talks to daily from there. Also, his school gave him a 1/2 credit for the physical therapy he did there. If you need credits it might be something to look into.

Good luck,

Christy