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!!!

How do they test to determine if you have the hyperadrenergic form of POTS?

It's one of the first things the Mayo doctor, who diagnosed my daughter with POTS, pointed out when he evaluated her. It's a common symptom and has to do with the autonomic nervous system. Good sunglasses really help.

I believe anxiety and nausea are directly linked for my daughter. Sometimes the nausea comes first, but quite often the anxiety leads to the nausea. She used to get so panicky and anxious about leaving home. She was worried about getting sick and the worry would make her sick. It was awful for months. She started taking Zoloft and it made a world of difference with both of these awful symptoms. As for getting to the doctor tomorrow....you've gotta go! Those darn UTIs are the pits & you've gotta get the meds to get rid of it. While you're at the doc, why not talk to her about the anxiety? Tell her lots and lots of people with POTS take ssri's and get relief for anxiety and nausea. Maybe you can start on an itty bitty dose and see if it helps! If you do give it a try, remember it can take a while to kick in. Give it a chance. Good luck tomorrow. If you start getting anxious....pretend all of us are in the backseat of your car rooting you on!!!

Maybe you should take your BP while laying down - with and without headaches- for awhile to see if it has anything to do with BP. Good luck and hope you get a break from them soon!!

Too lazy to look it up....what is "extrasystol"? Does anyone ever have a pricking, needle-y feeling in the center of the chest?

I once heard that Florinef can cause a headache because it's doing its "thing" namely, increasing blood volume. And folks who have POTS aren't used to that much pressure. Don't quote me on that, but that's what I recall. Anyway, did you start on an itty bitty dose and work up? That might help.....but don't mess around with starting and stopping. It's a drug from which you need to slowly wean yourself. Talk to your doctor and hopefully she can help you. GOOD LUCK!!! Florinef has been a godsend at our house.

Birth control pills and skipping every other period are the answer for my daughter. BIG IMPROVEMENT!!

I have to say it is refreshing to hear from folks who are doing a bit better and maybe have a milder form of POTS. It feels hopeful. Let's make a point of sharing those stories more often. Along those same lines....I have a question for those of you who have seen improvement in your condition....was it gradual? sudden? Did you wake up one morning and notice you were feeling better? Did you realize you were better because you had longer periods of time between "crashes"? Do you know if you are physically healthier and POTS symptoms are diminishing OR are you better because you are now taking the right meds OR are you finally learning to pace yourself/cope better? Thanks!

Thanks for sharing your story. Can you tell us what tests he did or what tests you had done prior to seeing him?

My daughter has had this symptom before and a couple things that helped were to get into a chiller situation....turn down the heat...... lay down... get your feet up.... ..... relax as much as possible.....breathe in a brown paper bag [as if you're hyperventilating] .... eat ice chips..... call someone who can reassure you.... It's a horrible symptom and, unfortunately, not uncommon. I feel for you.