janiedelite

No, they don't have POTS. But I know that for me, sleep is one of my best medicines! You'll probably feel better once your body isn't waking up frequently at night to breathe.

It does take some getting used to the mask. They used to have masks that go over your mouth and nose, but now you should be able to get one that is much less invasive. My husband's has two cushioned nose pieces that have a connecting strap over the top of his head. It did feel wierd for him at first, when he started wearing his CPAP. But then he realized how much more rested he felt and it was so worth it! Also, his BP was quite high all of the time prior to being diagnosed with sleep apnea but now is normal.

My husband and dad wear a cpap for sleep apnea. They definitely feel better since they've started wearing cpap at night.

Yes, I've also frozen milk for up to 30 days at a time.

Good thinking, Blue... I use down comforters for bedding because they are lighter to manipulate.

So glad to hear you're feeling a bit better!

Your skeletal muscles, particularly in your legs, are often used to improve venous return. I realized that I had orthostatic intolerance when I discovered that I could never stand still, but would always rock from foot to foot while standing.

Also, if there is someone who's just posted that you want to PM, click on their name (the one that's on their post). There will be a link on the page that comes up that says "send me a message."

An echocardiogram can also be helpful in ruling out structural abnormalities.

I'd go ahead and apply anyway. What can they do... deny you? You never know!

Does this doctor have any alternative treatments for you, other than midodrine and mestinon? Personally, I had reactions like you describe to both of those medications. There are lots of other meds to try. If he only is comfortable treating with those two meds, I may start looking for a doctor who is more willing to try other treatments.

Are you already signed up for long-term disability insurance through your employer? My LTD was so helpful in getting us by since I've had to leave my nursing job.

I've never kept mine in the fridge, either.

I have hyperadrenergic symptoms somewhat like you describe. I can't take midodrine except for perhaps just 2.5mg once a week or so. Even then, my hyperadrenergic symptoms will be much worse for a day or so after taking it.

When I was recovering from my hip injury, I used the electric grocery carts that the larger stores provide. I would also get someone to help me get the groceries into my car.

I do have a disabled parking pass that I can use if I'm feeling tired.

When I'm feeling tired, I use my seat cane. I stick it in the cart so that I can have a place to sit if I have to stand in a line. Also, I try to go shopping with my mom each week. We're good company for each other, and we can help each other as needed.

I've been on paxil since april and quit a week ago. Ultimately, it didn't help my fatigue or other OI symptoms and made me worse while I was on it. BUT, it took me at least 2 weeks to get past the initial fatigue and other side effects whenever I started or increased my dose. I stayed on it for so long because it can take weeks or more to get the positive benefit. Still, you should let your prescribing doctor know if you aren't feeling any better soon.

Some folks do really well with fludrocortisone. Not me. My BP and my HR went up quite high and I had a lot more chest pain and fatigue while I was on it. That might be a thought...

I had adverse reactions to midodrine, fludrocortisone, mestinon, ssri's, and several other meds. You're not alone. I did give each of these meds several trials at different times and sometimes stayed on them for months at a time until the negative side effects became quite debilitating or even life-threatening.

I agree with Katybug. Definitely let your doctor know. Perhaps the IV would be a good idea, and maybe some midodrine since your BP is so low?

Do you have an out-of-pocket maximum? I did stay for a couple weeks, but most of that was for testing beyond autonomic issues. The autonomic stuff just took 3 days. Also, if you find that you have a time gap between testing, go early to that dept and ask if they can squeeze you in. They often got me in early which saves time. Sometimes they'd tell me that they may have an opening later, so I just sat in their foyer and waited.

I don't know how much the autonomic testing was but all of my medical costs, prior to insurance payment, were about $20k. I'd imagine that the autonomic testing was about 1/3 of that, blood/urine testing probably another 1/3, and the rest was testing beyond the neurology dept.

I stayed at a hotel that was connected to the hospital. My hubby came with me and helped me get around. The lodging was paid for by us, although my mom and aunt were kind enough to hold a fundraiser for our out-of-pocket costs.

When I had my sleep study, I had quite a few myoclonic jerks. The sleep doc said they were harmless and were most likely a result of being overtired.

Do you have problems with GERD/reflux? I took domperidone for a couple weeks and found that my nighttime chest pain and shortness of breath was completely gone. I think domperidone helps with GI motility so it would make sense that it would help with my reflux.

Perhaps others can chime in on any other causes...

You've received some excellent advice so far! The only thing I can add is that I always find it helpful to bring a family member/close friend with me to all of my appointments. Prior to the appt, we review what our goals are so that if I forget, my helper can help get those questions answered. Also, if for some reason your doctor isn't willing to take you seriously, your helper can politely help advocate for you.

I did great with cipro.

I never had a problem with immunizations. Once I had a near-syncopal episode after a flu shot, but I've also had a dozen other flu shots without any problem. I've also had my tetanus shot done since POTS and had no problem.