HoldOnToHope

When my daughter was first diagnosed, she would complain of heavy arms. She sat like she couldn't lift them off the chair arms. I think she was so weak and fatigued that they were a chore to raise. I think your heavy arms are TOTALLY POTS related and don't let the doctor put needless fear into you. Some POTS symptoms are so weird, aren't they!!! Hang in there!

Where can I find the MCAD/Hyperadrenergic POTS article? Thanks!!

I'd never heard that beta blockers can mess up your sleep..... good tip on taking melatonin. Anybody else ever been told this? My daughter takes metoprolol. Seems to help the tachy.

What POTS doctors do you see at MAYO? My daughter has seen a pediatrician, but is going to have to move to an adult doc at some point. Thanks!

You didn't say why you had to come off Florinef, so I'm curious about that. When you're on it, you really need to push fluids and salt so that it can do its "thing". Did it give you some kind of side effect or didn't you think it was doing any good? How much were you taking? You can take Florinef with Zoloft and midodrine. You can take all 3 at once...if that's what works for you. If you "felt off" when you stopped taking Florinef, wouldn't you want to stay on it? Anyway, as for Zoloft - don't rule it out because of your mom's experience with antidepressants. SSRI's are a whole different animal than the heavy duty antidepressants. And, you might be able to get away with taking a very, very small dose and get some great benefit. It's used "off label" for lots of folks with POTS with very good results. And, I'm a midodrine proponent. Yes, you may have to take it 2 or 3 times per day [some even take it 4x/day], but that's because it only stays in the body about 3 hours. It's a great medication and can really help get the blood out of the extremeties and back to the head/heart. It works wonders for many. Again, you can start on a very low dose and work up from there. The "hair raising" side effect is not harmful. When you first take midodrine it does cause a creepy, crawly scalp feeling - or goode bumps - It usually goes away after taking the med awhile. Besides, the feeling means the med is doing its job - increasing blood flow. If I were you, I'd try both meds - starting one at a time to see if you get a good effect. I don't know which one I'd start first..... After you start one, you might want to add the other to see if you get add'l benefits. That's OK, too. It may take a while to get the right dose for you. Go slow. Give them a chance to work. In the meantime, keep drinking the water and salt. And, let us know why Florinef didn't work for you.

Taking phone orders for catalog companies like Lands End, LLBean, etc. might be good jobs for folks that need to sit rather stand all day. Large drink, feet propped up.....salty snacks! Heck, better than being home on the couch watching old reruns!! For those in college - you miight want to look in to getting additional credits on-line. It's the way of the future. High school kids can do the same thing. You can take the class at 1am or 1pm - if that's your best time of day. Work ahead when you feel good....take a week off when you're down for the count. An online education is the perfect solution for kids and adults with POTS.

I've never heard that POTS can do any damage to the heart. I like to think it's giving the ticker a good aerobic workout! Easier than going to the gym!! HAH! Take care!!

Hmmmmm....my daughter had no previous history and no one in the family with POTS. Hers was sudden onset possibly related to a virus or stress fracture. Slowly seems to be recovering or coping better.

Zofran was my daughter's doctor's recommendation. As soon as it was prescribed, tho, the nausea passed and hasn't been a serious symptom in months. Wish we'd had the Zofran for the year prior when nausea was a daily concern. I believe little meals all day long are a big help. Saltines, popsicles, rice and bananas got her through for a year.

Thanks for sharing the recommendations from your Mayo doc. May I ask who you saw? Thanks!

Works at our house!!! Z-z-z-z-z-z-z-z-z-z!!!

Who will you be seeing at Mayo?

When shakey/weak, I head right for the fridge and get a large OJ followed by a protein, usually cheese. Then I sit and wait a bit. Works for me every time! Good luck!

I believe anything with arms in the air causes symptoms....putting on make-up, using a curling iron, etc....I think it's too much work for the ticker and too far for blood to pump. Try sitting down and keeping your arms lower and close to the body to do hair and make-up.

My daughter used to complain of leg and arm weakness all the time. Her limbs felt so weak and so heavy she could barely lift them. Once she started on florinef and increased her salt and fluid intake, it helped immensely. Midodrine also helped with this symptom. As a matter of fact, I can't remember the last time she complained of this symptom.... the meds must be doing the trick!!!