handmadebyemy

I heard from Tiffany on 6/22, she didn't say anything about maternity leave - I hope I don't have to wait until September! Thanks for the heads up.

I started my paperwork today to get enrolled in the program. I'm anxious to start.

looks good - i couldn't tell from the site if is returnable if you don't like it?

interesting. does she attribute the success to giving up soy & wheat?

Hi Mary, Nice to "meet" you. I'm glad to hear that your symptoms are now under control. My story is very similar to yours (I'll spare you the details) aside from the pregnancy. Do you have an effective migraine treatment? I always like to go the natural route and not take prescription drugs if they aren't absolutely necessary, but after 10 years with daily or weekly migraines and trying every natural approach under the sun with limited success, I started taking amitriptaline daily and it definitely prevents my migraines. Emy

i have thigh & leg ache and compression hose help. i also bought this and it works great for calf ache, but doesn't do the thighs: http://www.brookstone.com/usqueez-lite-cal...ist1FDT|8646145 maybe swimming?

For those of you with leg ache - I bought this and it feels great! I use it daily. I talked to my Dr before buying it and he said it looks good & there's no medical reason not to buy it - unfortunately there's no way to get a prescription for it: http://www.brookstone.com/usqueez-lite-cal...ist1FDT|8646145 I went to the Brookstone Outlet and got mine for $300.

compression stockings! waist high 30-40 mmHg

my husband takes glucosamine with msm (he doesn't have pots) for his joints, its supposed to support joint health. just a note that some people are allergic to the msm - it is derived from shellfish i believe.

If you do decide to take it - I remember feeling very weepy the first week of being on it and also dizzy with a "woosh" feeling in my brain. i called the dr and they said that was normal when first starting it up. It went away after a week or so. I think we sometimes forget how powerful these drugs are!

Hi Matt, I took wellbutrin sr 150mg 2x daily for about 3 years. I was put it on before being diagnosed with POTS b/c my primary care Dr though I was experiencing anxiety. It definitely jump-started me in feeling better (more energy/less sleeping) so I actually thought I had depression/anxiety in addition to POTS. I recently stopped taking it and feel much better off of it. It made me feel spacey sometimes and disconnected- like I was in a fog. I thought that those were symptoms of depression, but in reality they were side effects of the medication. I hope this makes sense - its kind of hard to describe. The best way I can put it is that I feel like being on the drug took away some of my personality and now that I'm off it (almost 2 months) I feel like more of myself.

I did find out some info from POTSDad: 1. Send an email to THR-IEEM-POTSRegistry@texashealth.org saying you would like to apply for the POTS Exercise Training Program. 2. They will send you an email which you could take to your doctor. Your doctor must then directly request the application package. 3. Once your doctor receives the registration package, you setup an appointment. Your doctor will have instructions on how to do the 10 minute stand test, which your doctor must complete. 4. You and your doctor must complete and sign a number of forms and then your doctor sends in the forms for processing. I emailed them and just got a response back (took about a week) and send it to my Dr to see what he thinks of the protocol and if he is willing to help me get into the program. I used to feel the same way about exercise - why would I exercise when I don't even have enough energy to do my laundry half the time? But as strange as it seems, exercise has given me much more energy. I'd recommend starting with swimming since its a great workout and not too difficult. If I get into the program with Dr Levine I'll let you know my thoughts.

im 25 and have night sweats all the time - maybe its related to my hypothyroidism? drs couldn't attribute it to anything else

thanks for the info on applying - i just sent them an email, hopefully i hear back

i second purple!

I've heard a few people mention Dr Benjamin Levine's exercise program / clinical trial. From what I found online he is a cardiologist in Texas. Does anyone have any info on this or is anyone following his protocol? From what I've heard its quite effective.

my endocrynologist found that my vitamin d levels were low and recommended taking 2000-3000 IU daily which i did and i didn't notice any (extra) sleepiness. I took the recommended dose and my levels were up to normal within 6 months. maybe try taking a lower dose? i've heard thats why being in the sun all day (like at the beach) makes you drowsy - too much vitamin d. maybe they're related?

if you have thyroid issues you're not supposed to have much soy either - just a note*

hang in there! i get super discouraged when i get sick - even if its just a cold - because it just ANOTHER day i'm sick. i want to be better! i tend towards natural remedies before antibiotics or OTC drugs as much as possible so i have a few recommendations for you: Congestion: get ginger root (available at most grocery stores) and thinly slick about 1" of it up. add it to 1 cup of water and boil on high until bright yellow and fragrant. then keep your head over the steam for as long as possible as many times a day as possible. breathe through your nose for sinus/head congestion or through your mouth for chest congestion. Sore throat: gargle warm (not hot) water mixed with apple cider or white vinegar (about 1 TBSP vinegar per 8 oz water)

is endometriosis related to pots? i have symptoms of it but as far as i understand they can't really diagnose you with it unless they open you up and do a surgery. i have abdominal bloating, cramping mid-cycle, severe! cramps, spotting for about 10 days before my period, etc. my mom had a hysterectomy at age 38. She should have had it sooner but put it off to have kids. any other pots patients out there who have a endometriosis diagnosis? or symptoms?

I also use himalayan sea salt - i've heard its the best. my doctor told me to look for salt that isn't exactly white - it should be redish or greyish. how did you apply for dr levine's exercise program? i'd love to look into it. i did some searching online but didn't come up with anything

thanks for that link - according to that i shouldn't go over 165bpm but thats for a "healthy adult". my heart rate monitor also records calories burned - its nice to know i can burn almost 400 calories in 45 minutes of walking. my resting pulse i have seen go as low as 76. average is 107. knowing that i was walking and talking with my pulse in the 180s - and feeling fine - makes me wonder what my pulse is when i'm not feeling so fine. i thought of wearing the monitor all day for a few days but i don't want to focus on the negative.

Welcome Pots Dad, I'm glad to hear you finally got a diagnosis for your daughter. That's the first step, and the hardest! I got my first POTS symptoms at age 21 so I feel for her. The compression stockings help me immensely, as does swimming. What is the exercise program she is doing?

I purchased a heart rate monitor - Polar F6 - its the kind with a chest strap. I can set it to beep if my heart rate goes over a certain bpm - I thought this would be useful when exercising. I wore it for a walk down the street the other day and I was up to 186 bpm in no time. Has anyone researched or heard from their doctor(s) how high is too high? I'm wondering what I should set my monitor at - when I was in the 180s I felt ok and kept on going because we keep hearing that exercise can help make us better. Any advice?

Thanks & I'd love any additional tips.