handmadebyemy

yes! annoying!

I'm hypothyroid - it was diagnosed after I started having POTS symptoms but before I knew about POTS - so I would say that they came on around the same time. I take synthroid and it keeps my thyroid hormones in the right levels.

i get this too but i'm not on any of those medications. i think its just a pots thing. i notice it when my hr gets especially high

I got that last year - I hadn't even noticed it buy my dermatologist saw it when I had my annual skin exam. She said its basically excema/dry skin and I used this cream and it worked: http://www.amazon.com/Boericke-Tafel-Psoriaflora-Topical-Cream/dp/B00008ZPFZ

I saw my primary care doc today who has noticed that whenever I get bloodwork done, by white cell count is low. She's sending me to a hematologist, but I figure I'd put it out there while I wait for my appointment. Has anyone else noticed low white blood cell counts with POTS?

Sambucol works great for me. They have it at stop & shop

The Jobst brand has a line called "Ultrasheer" which actually come in decent colors and look like pretty normal nylons. You can get them online or order them from your pharmacy. I have them in beige, tan, charcoal grey, chocolate brown, and black.

I like that quote, its so true! I'm still not sure what I'm going to do but right now I'm leaning towards not having the surgery. Its not completely necessary and I don't want to risk a relapse with POTS, especially since I'm finally improving after 4 1/2 years!

Dr Levine and his exercise physiologist will tailor the program to each patient, they give you very specific heart rate zones based on the results of your stand test (which is required before getting approved for the study). I wish I could give you more specifics about the exercises and schedule but I'm not allowed to. Hopefully Dr Levine will publish more info about it in the future.

I dont find them too uncomfortable to wear (you get used to it quickly) and they totally work! I wear jobst brand ultrasheer waist high stockings.

Its for real, I'm in the program now and its helping! (The article does seem strange but if it helps, who cares?!?!) Search "Dr. Levine Exercise" to see more forum posts/info.

Thanks for the feedback so far, anyone else have any experiences? I'm still unsure of what to do.

Hi Caterpilly, I am in week 8 now and really doing great! Before I started the protocol I was doing ok - compression stockings really helped me - but at its worst (before I was diagnosed) my POTS had me bed ridden for 3 months (all while I was trying to plan a wedding, yikes!). I would encourage you to definitely definitely give this a try. The paper that was published about the exercise protocol only gave the results for a few people but I'm under the impression that now hundreds of people are enrolled and feeling better. I feel like I am almost back to my old self. The program is intense, and you really have to make it the priority for the 3 months, but it is much easier than I imagined. I never had super awful days on the program where I had to crawl back into bed when I got home (like I did when I went swimming on my own prior to the protocol). Give it a shot and let me know how you make out!

Yes, I am doing Dr Levine's protocol. The reason (I'm guessing) that she doesn't get into what exactly involved in the exercises is that it is still being researched and all the participants sign a form agreeing not to publish the exercise protocol. But you can find out more information in a thread called "Dr Levine Exercise Program" (just search it at the top of the page - I couldn't get the link to work. I am in week 8 of the program (its 12 weeks) and I'm feeling so much better - better than I have in years. I would recommend to everyone to just give it a try. It is tough, especially at first, but if it doesn't work for you, you can always stop and go back to your current form of treatment. One thing to note is that you have to stop all medications that affect your heart rate. (You can stay on other medications though, I am on thyroid medication & migraine medication that are fine to take). I hope this helps!

I would say right now that my POTS is well controlled. I am thinking of having a sinus surgery to fix my deviated septum but after reading some of the posts about POTS getting worse after having general anesthesia, I'm a bit worried. What have your experiences been? Thanks! Emy

I've been over 200.

I started week 4 of the program and am still keeping up. Last week was difficult all week but yesterday I felt back in the rhythm of things.

A neti pot is great, but more for preventing a sinus infection than curing one. Sambucol works great for me, its homeopathic so you should be able to take it. http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=H9-1001

Sometimes when I put them on they tend to roll over themselves, especially right on the ankle. I bet they were just bunched up and thats what the mark is from.

I take 50 mg daily for migraines. My Dr had my start at 10 mg and every 2 weeks increase the dose by 10mg to see how I tolerated it. It does make me sleep really soundly and I sleep longer now that I take it, but it beats migraines! I take mine at dinnertime to help with the groggy mornings. Other side effects: it does make me thirsty but that helps with getting enough water, and I did gain weight when I started taking it.

I'm a fellow migraine sufferer since age 14. I did this diet for 1 1/2 years and it cut back on my migraines dramatically. I was having them up to 5x a week and on the diet I only got 1-2 per month. Here's the book that explains the completely sugar fee diet: http://www.amazon.com/Victory-over-Migraine-Breakthrough-Completely/dp/0805009272/ref=sr_1_1?ie=UTF8&s=books&qid=1295453782&sr=8-1 I've tried acupuncture, homeopathy, and all sorts of natural remedies and this diet is what helped the most. Its tough to stick to though.

I don't know of anyone with EDS who is in the study but I don't think they would exclude you for it. I would give it a try - you can always drop out of the study if it doesn't work for you.

So I finished my first week of the exercise program! It went really well. I've had POTS for over 4 years and for the first time I feel like I have some control over making a difference in how I feel. Every time I go to the gym I tell myself I'm one step closer to being back to the old me. The exercises on the protocol are much less difficult than I imagined. I thought I would be dizzy and passing out, with a big post-exercise crash but I have felt great all week. So far I would totally recommend giving it a try to anyone who can. If it doesn't work for you, you can just stop it and try something else

I have tried several of the Jobst brand stockings: the "Relief", "Opaque", and "Ultra Sheer". All were waist high 30-40mmHg. GET THE ULTRA SHEER!!! The other two types only have compression to the thigh and the panty part is not compression, so I don't feel nearly as good when I wear the cheaper ones. From what I've read, you need to have at least 30mmHg compression and waist high for them to be effective for POTS. They are a little uncomfortable at first but you will totally get used to them. Also they are hard to put on at first but it gets easier

I would say you would probably need to get to a gym 1-2 times a week to do the weight machines and any other machines you don't have at home, but maybe they will make you a specialized program just for you if you tell them your limitations. I hope it works for you!