mynagirl

Hi all, I'm a POTSer with possible EDS / collagen disorder (seeing geneticist next month for evaluate). Over the past 24 hours, I started to itch and I've now got bumps or a rash all over my body. Not quite big enough to be hives, but the areas are turning pretty red and nasty where the itch is worst and I cant help scratching. My face, hands, and feet are basically unaffected, but everything else has the rash, including my bright red ears and an enormously itchy scalp. On my torso it's faint red dots evenly distributed, like a heat rash. On my back, legs and arms it's more pronounced. I've taken three benadryl with no seeming help. I' m thinking maybe a drug interaction; i've just recently quit breastfeeding and am on meds to control the POTS as well as my extreme joint pain. Yesterday I took a Celebrex and then my Mestinon and half a Vicodin several hours later. I hadn't taken the Celebrex for a week or more because of intense intestinal distress - although I've been diagnosed with IBS after a clean colonoscopy, I was starting to worry about ulcerative colitis given a big family history of it. As I sit here and basically writhe in intense pain and itching I'm trying to decide if it's worth it to go to the ER. Anything particularly autonomic come to mind?? Thanks for any thoughts... Marie

Hi all, Being POTsy but also vain, I am looking for "cooler" looking compression stockings. Not just more stylish but also literally cooler, since it gets up into 100 degrees a lot in July and August here. I was wondering if I could get away with compression leggings or capri leggings, or if they would have the opposite to the desired effect by forcing blood to STAY in my feet rather than encouraing the blood to happily leave my feet and go up toward my poor oxygen-starved head. Compression stockings are my #1 determiner of "good day" or "bad day", so I really need to wear them every day, as SOON as I get up. And if the legging or capri option will work for me, more's the better. Here's the awesomely stylish stocking site my super cool husband found for me: http://www.rejuvahealth.com/ Healthy days everyone!! Marie

My rheumatologist is referring me for genetic testing for EDS and/or Collagen disorders b/c of my hypermobile joints and autonomic issues. Anyone have experience with this?

I've never had an experience that bad before, but I've had some doozies. The list of advice posted at the beginning is very good, here are a few others that have helped me: 1. No coffee the day I fly. Makes me SO MUCH SICKER. Ditto acidic drinks like orange juice or lemonade, and no spicy foods. 2. Not only hydrate with gatorade several days ahead of time, but also get very regular ahead of time with Metamucil. I don't know why this helps but it does, big time. I even take Metamucil with me when I travel to make sure I'm good for the flight home. 3. The relief bands that shock the inside of your wrist are surprisingly helpful. I had the old Relief Band but this appears to be its successor: http://www.aeromedixrx.com/Reletex-Anti-Nausea-Device.html 4. Definitely compression stockings, definitely comfy clothing in layers -- whenever I get really motion sick I get SO HOT, but then I'm so cold later when the plane is up in the air 5. Stupidly, alcohol (just a little) helps. It's a balance to deaden the motion perception but not make your blood pressure bottom out. I used to do bloody mary's (with no spice) for the double whammy of salt and alcohol. 6. Go early and spring for the President's Club (or whatever) if you can so that at least the hanging around time is relaxing and you're not going directly from the POTSie problematic activity of walking through the airport to the POTSie problematic issue of being in a pressurized plane. 7. Similarly, do direct flights if possible (which it sounds like you're doing). Takeoffs and landings are so terrible. Hope your flight goes okay!!!!!!!

Cymbalta worked amazingly well for me for two months. I was "cured"! Then it stopped working. And it was awful to come off of, I had chirping in my ears for months! Good luck with getting the right choice for you!

Sandroni diagnosed me, after 7+ years of misdiagnoses and being told I was fine (or depressed!). She is great. A bit humorless, but an excellent doc. The Mayo process is inspiring - a scheduling marvel. Their ability to send you off for a test after they see the results of the previous test... So great. Would've taken months and so much time off otherwise. I agree on no followup. Ask very specifically what your regular doc/card/whoever needs to know or do. Good luck!

I've just discovered Support hose and now they're essential for me. Huge difference from being so light headed in the morning I can't stand for mre than a minute, to being able to walk around and make coffee and get toast (essential for the first morning Mestinon) before I can sit in my chair to work. Now i'm considering getting a pair to wear in the shower. Maybe I could shower first thing in the morning... That would be great!

Any chance you have Ehlers Danlos (SP?)? Easily broken skin that makes shallow papery scars is a sign.

Funny you mention it, I'm sneezing my head off the last two days. But I swear that was not a sinus headache! But who knows, maybe it was after all. I took a benadryl and some Advil and I felt better. So maybe its just allergies. But smells can trigger headaches for me too - the laundry softener aisle in the grocery store is the worst offender. And smells triggering is a migraine thing, isn't it? Sigh...so many fun symptoms. Thanks everyone for all your helpful replies!!

The same thought occured to me - I checked it when I was standing up and had been walking (before I went to bed) and it was 100 / 70 with a HR of 91. Not bad at all for walking around.

Rawr! Terrible headache today and had the same one day last week. I don't remember this being a Mestinon side effect before. It's like lead weights on one of my eyeballs. It feels like a "chemical" headache if that makes any sense, not a normal stress/sinus/tension headache. Is this just an amazing migraine my body has decided to bless me with today? Anyone have migraines with your dys? Anyone have headaches with Mestinon? Hoping everyone is having a good day :-) Marie

Thanks so much guys! I did find tmsforacure, and of all the crazy things they are headquartered right here in the small Texas town where I live! Small world. I may reach out to them for local doctor recommendations too.

I'd never even heard of mast cell activation disorder before seeing it mentioned several times on this board, and now I'm really wondering if I shouldn't mention this to my rheumatologist (or possibly my doc at the Mayo if I am able to go back for a checkup). For those of you that have MCAD, how did you find this out? Did you have to tell your doctor about it or had you never heard of it until the doctor mentioned it? What kind of doctor diagnosed you? How was it diagnosed? How do you manage it? Do you feel it's the cause of your autonomic problems, or simply another disease in addition to POTS. Sorry for all the questions, just very curious to hear more about it. Thanks for any stories you can share... Marie

Dizziness has always been my most persistent and irritating symptom. Meclizine (bonine) does help me, but I think there are considerations taking it long term. The sea band type stuff also helps me too, I have a device that does an electric shock to the inner wrist. Doesn't cure but does help. Recently though I've discovered support hose, which, combined with being back on Mestinon, are helping me a great deal. Hope it gets better for you!!

Have you ever had an MRI? I think that would be the only way to diagnose a disk problem. Took the docs a few months to diagnose my ruptured/herniated disk after negative x-rays and no help from muscle relaxers. I just had to keep saying that it still hurt..

Thanks you all for the great replies. Very helpful! My HR did go back down, so that seems to be good. I'm not on a beta blocker right now because I'm nursing my new baby, but I'm tracking it for when she's done nursing. I probably should get back to the cardiologist soon...

I was there for about a week and paid about $600 out of pocket. I had BC/BS at the time and had already hit my deductibles. Not including food and hotel and stuff.

My HR usually goes from 80s to 110's when I stand up but today it was 157 after I was just doing dishes and walking around. It hasn't really spiked that high before (that I've ever measured), other than during actual exercise. How high does your go? Is there a point when you worry? Just curious what's "normal" for everyone else. Thanks! Marie

I know this is really random, but you saying shrimp hit a chord with me. Any chance you're sensitive or allergic to sulfites and that's worsening your POTS? Grapes, wine, shrimp, lemon juice concentrate, dried fruit, coconut... those are pretty big sulfite offenders. A big load of sulfites will always worsen how I feel; it makes the pots that much worse. Just a thought, I sure hope you feel better Dani!! Marie

This is interesting! I have had mustache issues starting when the POTS started, but I always blamed it on the steroid injections in my back (which I also blamed for my eventually-diagnosed-as-pots "vapors" for a long time). Waxing, baby! Waxing for sure. I thought of PCOS for you, too, Sue.

Hey, I'll take that for sure! I could definitely use less dizzy right now...

So I am going back on Mestinon b/c the dys/POTS is so bad lately. I barely have energy to stand (and I get dizzy as soon as I do). I've done the research and it appears okay for breastfeeding. It's been so long since I've been on it, I kind of don't remember what to expect, other than big activation of my digestion, which I *don't* need, LOL. Any other Mestinoners who can tell me what to expect in terms of improving my autonomic issues? Many thanks! Marie

Just to add my voice to the chorus, this is my least favorite activity and the most likely to cause me a problem. Before I was diagnosed I just kept telling the doctor I "got headaches" if I had to search around on my closet floor for a missing shoe. WOW, amazing to see what a universally awful thing this is for us. Sorry it happens to everyone but it's nice to know I'm not alone!!

I saw Dr Sandroni there. She's amazing, and the care and diagnostics there are unbelievable. They're so well organized, they can send you for tests within a few hours so as soon as they see something possible or developing, they can send you down that diagnostic path quickly. They did more in 4 days than I'd had done in YEARS. Definitely recommend. I went on a general neurology recommendation and when I got there I asked for autonomic and was on a waiting list for part of two days - sat there knitting in the waiting room and there was an opening for Dr Sandroni. So glad she could fit me in! Definitely go if you can organize it.