handmadebyemy

I just got a prescription for Aimovig today. I'm wondering the same thing. Did you try it yet?

I just read though this thread- thank you for the updates and info. Seems like the jury's out ok exactly which supplements are good or bad but that this doc is onto something here! I've been doing a lot of research myself on diet and nutrition and all the experts are saying the same thing: plant based, whole foods. I definitely feel better being gluten and dairy free. I eat meat about twice a week and do have a good amount of fats: olive oil, avocados, nuts. Maybe too much according to the research in this thread. Any way- just wanted to say thank you for the info! Emy

Oh whilst you mention about the compression stockings, do you also work out with the compression stockings on or have you been advised against this? Thank you for your reply too! They didn't have a good answer for me when I asked that question. When I did the program initially for the 4 months I did the exercise with the stockings on. I tried to get back into it later that year and tried without stockings just to see it if made a difference. I'd say I had more exercise endurance when I wore the stockings

Corgard (Nadolol) has helped me tremendously - I take 10mg 2x daily It also is a big help with migraines!

I did Dr Levine's exercise protocol a few years ago. I stuck to it faithfully for about 4 months but once I got to the treadmill stage I hit a wall where my heart rate wouldn't cooperate and I couldn't finish the program. I was feeling some positive benefits before that, but it was quite a time commitment! It took me about 3-4 hours per day 5 days per week since I don't live near a gym so it was the time aspect of it that ultimately made me quit. Now I have an exercise bike at home which I do several days per week for about 20 minutes which seems to help marginally. Its definitely good for my legs since I've lost a lot of muscle tone in them from wearing compression stockings daily for 5 years. I hope you have success with the protocol!

I've had POTS for 8 years now and have worn compression stockings since I was diagnosed 5 years ago. I've also tried Dr Levine's Exercise Protocol but didn't have much success with it. The stockings were what helped the most until my neurologist started me on Corgard (generic is Nadolol) for migraines. Its a beta blocker and has helped trememdously with my POTS symptoms. I no longer have blood pooling in my legs and can stand for much longer. I've stopped wearing the compression stockings all together. Its not a miracle cure, but this is the best I've felt in years!! The only side effect I have now is sleepiness but I'd take that any day over migraines and the pure exhaustion that POTS brings. Its only been a few weeks so I'm cautiously optimistic but I would say defintely ask your doctor about it! I had kind of lost hope and accepted that I wouldn't get much better so this is a wonderful surprise!

I had a similar issue when I was doing Dr Levine's exercise protocol. I could get my HR up (into the 160's as required) on the recumbent bike, upright bike, and rowing machine, but when it came to the treadmill and elliptical machine I couldn't. Sometimes my HR would go down. This ultimately caused me to stop the program because I couldn't proceed pas the treadmill or elliptical machine. I never got an answer from them as to why. Sorry this probably doesn't help you much but at least you know you're not the only one with this issue! It could have to do with the medication you are on, but I'm not on any POTS medications and we seem to have the same issue.

I had this problem last year. Make sure to have your thyroid checked as well as your iron levels. Both hypothyroidism and anemia can cause hair loss. Also extreme stress following a hospitalization, surgery, or major illness can cause hair loss too. My hair also lost most of its natural curl when it started thinning but thankfully within a year or so it started returning to normal. I still have some thin spots but I try to cover them up as best as possible.

Yes! I have POTS and a successful etsy shop. Its my full-time income (part time job) and it has been such a blessing to be able to work from home when I feel good enough, but be able to rest or skip a day when I need to. Feel free to PM me here or via my etsy shop www.handmadebyemy.com

I use PSI bands which are a basically a cuter version of the 80's style sweat bands. I got them at walgreens I believe for about $20. I keep them in my purse always and wear them as needed.

Its the idea that like cures like. Here's a good explanation: http://abchomeopathy.com/homeopathy.htm I used to see a homeopath regularly and I agree with earlier comments that some stuff works great and other times it can be a disappointment.

Thanks!

I used to carry water with my everywhere and constantly sip but that lead to having to pee all the time so now I drink a 16 oz glass of water with every meal and snack, also one in the morning and one whenever I feel thirsty. That adds up to about 3 liters a day and since I drink the whole glass at one time, I don't have to pee constantly - my bladder fills up completely. Otherwise its torture!

Are you artsy or crafty? What about selling on etsy? I do (making neckties) and it works for me because I can work when I feel good enough and rest when I need to. You just have to stay organized so that you can meet the deadlines that you agree to with customers. I try to stay a few days ahead on my orders in case I don't feel well and can't work on a given day. Even if you don't sew or knit you can do anything homemade, like photography or graphic design.

I'm 26 - I've had POTS since I was 21, been married for 4 years, and we have decided not to have kids, mainly due to my health. Maybe in the future if my health improves and my POTS symptoms go away we would think about it, but at this point I don't think its fair to the child to choose to get pregnant now. I would have difficulty raising children and I know that I couldn't be the mom I'd want to be. One of the hardest things about this illness for me is the effect that it has on my husband, so I couldn't imagine the guilt I would feel as a mother.

Mine is very obvious - my legs get dark purple when sitting or standing. Way worse than the picture shown in this article ;: http://www.google.com/imgres?q=pots+leg+pooling&um=1&hl=en&client=safari&sa=N&rls=en&biw=1280&bih=597&tbm=isch&tbnid=GnwWP8Sqgj1L1M:&imgrefurl=http://cogprints.org/4802/1/raj.htm&docid=jZi-kADDa81ZBM&imgurl=http://cogprints.org/4802/1/raj2.jpg&w=600&h=450&ei=cZXNTrnLLuHn0QGBoOBE&zoom=1&iact=hc&vpx=430&vpy=82&dur=5&hovh=194&hovw=259&tx=125&ty=137&sig=104097835803778222817&page=1&tbnh=134&tbnw=179&start=0&ndsp=22&ved=1t:429,r:9,s:0

Have you gone for allergy testing? They can test you for antibiotics to see how much your body can tolerate of certain medications. I also have a long list of antibiotic allergies. I'm going for testing this month. I was hospitalized in April for a kidney infection and had 4 or 5 different reactions to antibiotics - it was really scary. So I'm getting tested to see how much I can safely tolerate in case I'm ever in that situation again, the doctors will know for sure what I can tolerate (maybe just a rash) as opposed to what will kill me! I was glad that one of my doctors explained to me that even if your body reacts to a medication, the medication still does its job and kills the infection. So for your more mild reactions you may just have to take benadryl with every dose (which in my opinion is better than being stuck in the hospital with an IV!)

I've had positive ANA tests too. My rheumatologist says its not uncommon for women to have a positive ANA test. She did some further tests and didn't come up with anything. Just another unanswered question, sorry!

I take Amitriptaline, 50 mg. It reduces the # of headaches but does have some side effects: weight gain, constipation, sleepiness.

I am in the trial and after 3 months I was hospitalized for over a week for a severe kidney infection. Nobody has said that its a result of the trial but I wonder? Obviously there is at lease some effect on the kidneys. Anyone else have bad effects?

I just had a PICC line put in a a few months ago for IV antibiotics for a kidney infection. I had the line in for about a month. I was worried about the procedure but it really was NO BIG DEAL I was lying down the whole time and they just had me get up slowly after the procedure was finished. There are no nerve endings in your veins and the numb the skin where they insert the line so you really don't feel a thing. I asked the dr who put the line in not to use any sort of topical anesthetic that would increase my heart rate and so he used lydocaine and I had no issues. For the infusions, I had a home nurse come once a week to change the dressing and drop off my medicine. She taught my husband how to do the infusions, which he did every day. By the end of the first week I was actually doing the infusions by myself. Although overwhelming at first, it was actually really easy. I hope your PICC line goes smoothly, I'm sure it will!

My uncle just had it done and said it wasn't as bad as he thought. He is super scared of needles but this was ok. They did it in the office and it was a quick procedure. I guess they can tell a lot more from the bone marrow sample than from just bloodwork. Also my hematologist said they can test for MCAD in the bone marrow so maybe ask for that too if you end up getting it done!

I have exercise intolerance and I think I was pushing myself too hard in the beginning. I'd recommend taking it slow (start with a 10 minute walk at a leisurely pace) and build up from there. The good thing about exercise is that its cumulative, so taking a 20 minute walk does as much good as taking ten 2 minute walks

I've always had headaches as a child and started with migraines at age 10. I was getting them about 5 days a week by the time I was in high school. I've tried all sorts of things (acupuncture, homeopathy, special diets, etc) but ultimately ended up taking amitriptaline daily. I wish I started sooner. They cut my migraines down to 2x a week on average. I also have fiorinal for when I do get a migraine to ease the pain. I'd recommend seeing a neurologist and taking daily therapy - it has really helped me. The only other thing I though of was Chiari Malformation - have you looked into that?

I wear the UltraSheer line by Jobst. They are $100 & up but my insurance covers them. The colors are actually nice for wearing with skirts (they look like normal stockings, not medical stockings). I have them in beige, suntan, chocolate brown, black, and dark grey. They also come in toeless which is nice since you can wear them with flip flops in the summer time (much cooler than socks & sneakers)