handmadebyemy

I was apprehensive at first too because of the idea of a 50 minute workout looming over my head but since you work out in a heart rate zone that is created just for you, it was not difficult at all. I was able to talk through the whole thing. The warm up and cool down are nothing to worry about. They say you may feel worse in the first month but then progressively better. I'd tell Tiffany what machines you have and she might be able to customize your workout schedule around what you do have. They are big on rowing machines which I'm thinking about buying one, they go for around $100 used on craigslist. Best wishes!

Yes, that email still works. They sometimes get back to me immediately, other times it takes a few weeks, or even up to a month. I originally emailed them in June and am starting the protocol today - it took me quite a while to get registered but I don't think that's the case for everyone. I'd send a polite "just checking in" email every week or so if I were you just so you don't get lost in the shuffle.

Will do!

Hi Kimberly, I'd love to know how you're doing. I'm really excited but a little nervous. Keep me posted! Emy

an exciting update: I received the exercise protocol today and I start on Monday

I was told 3 liters a day but I don't really measure it - I just always have a glass of water with me.

My resting heart rate is 100. The lowest I've ever seen it (since POTS) is 76. Its usually 130-150 when up and about and 170-190 when exerting myself (walking, etc)

Just an update ... I finally got my testing and paperwork done and I qualified for the study! I should be starting in a few weeks.

The prescription my dermatologist gave me was for a cortosone cream - this is what I ended up using and it worked really quickly - within a few days. I'd recommend putting it on at night before bed so when you're not wearing the stockings. http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=BT-1226

Hey, yes I have had the allergy behind the knee from the compression stockings. I asked my dermatologist about it and she said its severely dry skin. She had given me a prescription for it - a cream to put on - but I never filled it, I just got some stuff from the health food store that cleared it up right away. I think it was called "psoriaflora". I would just try a really moisturizing lotion. Its not much to worry about unless its making you uncomfortable - I hardly noticed mine. I hope this helps!

Which doc are you seeing in Boston ... or what hospital? I go to the Lahey Clinic (Burlington) Please keep up updated on your progress!

I get chronic sinus infections - I actually have one now and I just picked some stuff up at Vitamin Shoppe called "Sambucol" that is giving me some relief. I bet you could get it at CVS or a health food store.

muscle building*

I've worn the 30-40 mmHg waist high compression stockings for about a year an a half. I am glad to have them as a non-drug therapy. I have noticed that I've lost a lot of muscle in my legs, especially calves, from wearing them but I'm sure it can be fixed with exercise. My doctor recommended having extra protein in my diet to help increase muscle buiding.

I've worn the compression stockings every day (literally) since I first put them on, which has been over a year. I have no idea what this ABI thing is about but my Dr gave me a prescription for 30-40mmHg waist high compression stockings and I get the Jobst Ultra Sheer style, they come in S, M, L and the sizing info is on the package. It was very easy to figure out what size I was and the lady behind the desk and the pharmacy also offered to help me, you just measure your ankle, calf, and thigh I believe. These are the ones I get: http://www.brightlifedirect.com/STYLE-OR-LENGTH-Pantyhose-%28Waist-Highs%29-Sheer-30-40mmHg/c356_146_325_333/p4/Jobst-UltraSheer-Pantyhose-30-40mmHg/product_info.html They are covered by my insurance, but in the pharmacy I go to they retail for $79-$89. Well worth it though!

are you crafty or do you sew? i work at home selling handmade items on www.handmadebyemy.etsy.com on etsy you can sell handmade or vintage items, check it out!

I take the homeopathic remedy "borax" for occasional cold sores and it works great, no side effects. never tried valtrex, sorry.

No, this doctor isn't in Maryland, he is in Connecticut. From the comments I've gotten so far and the limited research I've done, I haven't seen any positive responses about Cortisol. I do feel like I still may want to hear the doc out to see what he has to say and then take it or leave it from there. It feels difficult to make rational decisions sometimes when we are all so anxious to feel better!

My mom saw her endocrinologist today and mentioned that I had POTS and he (shockingly!) actually knew about it and said he has treated POTS patients before and had success with it. He was asking her about my adrenals and seems to think that I may need to take some cortisol. He did recognize this as "out of the box" thinking regarding POTS treatments. I made an appointment to at least hear what he has to say but its not until Sept of next year. Has anyone taken cortisol or been treated for POTS by an endocrinologist? I'd appreciate any advice. I'm not getting my hopes up but I'm going into this with an open mind.

have you looked into chiari malformation?

Well I definitely have the major headaches - almost daily for 12+ years. Has anyone had the surgery to correct it & it so has it been beneficial?

Today, for the first time, I heard of Chiari Malformation & its relationship to POTS. I had never heard of it before. What do you know about it? Has anyone talked to their doctors about Chiari? It it worth testing for? Thanks, I appreciate any help & advice. Emy

Yes, I get migraine with aura, it runs in my family. Usually its when I'm under a lot of stress. Imitrex helps with the pain and weakness, but will sometimes give me rebound headaches so I try not to take it. I think the best thing is a dark quiet room & trying to sleep it off. They often come in cycles so don't be discouraged if you get a few this week/month, hopefully it will pass!

Great, thanks! I loved the first article.

Do you mean wearing them continually as in 24/7 or as in wearing them daily?