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  1. Thanks for bumping this up everyone! I've been away for awhile since life has been improving. Figured I should give another update.... I'm 2.5 years out from my health crash. Things are WAYYY better than they were. Please don't give up. For me, slow and steady is what's helping. Recent gains include: Run 12 km without stopping. I had to start from scratch on this literally learning to walk again. Hike as much as I want. Do weights, yoga etc. None of this can be at gyms due to scents.Sleep well most nights. Still lots of sleep needed. Horseback ride and do outdoor chores.Tapered off the 21 medications I was taking down to 1.5 meds (Cetirizine and Zantac in the morning) This had to be done excruciatingly slowly.Survived surgery. Took a great deal of planning due to my chemical and scent triggers. Have increased to about 30 foods I can eat and trying to add more. Can go into stores and other public places for up to an hour on a good day. I don't really think about POTS anymore. Though I do need to stay hydrated and if I react to something my heart will race. When I don't exercise my heart rate and BP are not as good. I can go to a movie if it's quiet and doesn't use air freshener. STRUGGLES: Scents and chemicals! Still set me off like nothing else. Have rid my life and food of them which is helping but slow going. Safe accommodations are difficult to maintain due to reactions to building products. Still need at least 10 hours of sleepNeed to limit stress as much as possibleTry to only make one diet/environment/med change at a time so I can know what causes what. Getting close to anyone who uses fragrance, scented laundry detergent, or fabric softener. Still triggers anaphylaxis. Need to keep my bedroom with a hepa filter and lots of fresh air to let my body recover at night. Full organic, fresh, homemade diet. Organic bed sheets etc. I cannot handle stress as well as I used to. traveling. My water supply is still tenuous; I can't drink just any water without reactions has to be my home reverse osmosis. That and the scents on public transport make it impossible so far. Socializing. Still at a screeching halt due to chemicals and scents on people's clothes, bodies, and hair. I am still hopeful for more improvements in time, but extremely thankful to be where I'm at! I went gluten free for a time and didn't notice a change, so I'm back on it and very thankful for it as I can do so much with it on my limited diet. I think the biggest thing like Lyn mentioned is listening to my body and trusting it, but always trying to push it little by little everyday when it lets me. Other people might try to talk you out of how you're feeling but you know inside. There is no baby step forward that's too small. I definitely still have days when I'm over exposed to triggers or overdo it that I need to resign to just taking it easy and not pushing too much. But nothing like the bed ridden constant anaphylaxis phase. Eek. I guess I should update my signature and cross off all the meds! Let's keep fighting everyone!
  2. Glad you're doing better! Our paths are similar though not exactly the same An organic, elimination rotation diet, good sleep, exercise starting where I could and building up and avoiding all chemicals---in foods, products and household items Hope you get even better!
  3. Me too. Started when my symptoms started
  4. For me my twitching is worse when one of my triggers ("mcas") is worst. Moved into a new house and the first sign that I was reacting to inhaled allergens was muscle twitching. I ignored it thinking it was something else and I got worse and worse.....I get them mostly to chemicals and scents. Also seem to twitch if I overuse a muscle. When I was on steroids I got them more often than I do now.
  5. Hi! We share a lot of the same issues....I also didn't get diagnosed at Mayo. I have POTS, joint hypermobiltiy vs ehlers danlos, and ?mast cell activation syndrome (flushing and other symptoms induced by triggers such as heat exercise , chemical exposures) when I get a lot of exposures I also get night sweats Did someone check you tryptase level? All my labs are normal but i've improved with conservative pots treatment, strict trigger avoidance and an organic rotation low histamine diet, exercise etc Hope you figure out what works for you Ana
  6. So glad the surgery is over pumpkin! I hope the pain goes away soon. My mother had her mitral valve replaced and I remember the pained look on her face. Keep us posted. When you have time or energy, I was wondering, did you have a valve reconstruction or replacement? Sorry if you already mentioned that elsewhere. If replacement, what kind of valve and will you need to take warfarin? I hope the surgery makes you feel better. I know my Mother said if she knew she'd feel that much better post op she would have had the replacement ages before. Ana
  7. I know this doesn't help, but my mother had her valve replaced fifteen years ago with a mechanical st jude mitral valve. She said if she knew how good she would feel after she would've done it a long time ago. Not to say it wasn't terrifying and a painful recovery, but she does aerobics and hikes now and seems unstoppable in her 70s. She has to take warfarin, a blood thinner, now for life.
  8. I don't know if you have any symptoms suggestive of reactions, allergies or mast cell disease, but when my POTS first started I would get a lot of PVCs especially at night. I figured out slowly and with time that this correlated with foods I was eating or inhaled exposures like scents or perfumes. I went on an organic elimination diet and they improved so much. When I get pVCs I know the food I intro'd is not OK and needs to be cut eg grapes. I also get PVCs if around bad air with cleaner smells, perfumes etc. If I get very stressed I get them and some medications seemed to make them worse also. Since I've eliminated all that stuff it's very rare that I get them now. I hated the feeling so much; it is just terrifying. They documented them on ECG and told me they were meaningless and not to worry, but when you're feeling them yourself you can't and I'm so glad I looked into it myself because I don't have to deal with them anymore. I kept a food, exposure, med diary which helped. I hope you find a trigger you can eliminate for yours.
  9. Yep, I'm being treated as ?MCAS without diagnostic proof other than symptoms and response to meds which fulfill two of the diagnostic criteria. Good enough for me since the meds and trigger avoidance are working.
  10. For me it can and is why everyone thought I had an infection at first.
  11. Oh my gosh, so great!! Can I ask, did you already have a BMB or do they want you to have one? I had a bad experience with allergy at Rochester, but in their defense I was only ever seen by fellows. They wouldn't discuss any treatment or options unless I had a BMB and I was so sick and flaring so hugely I knew a procedure would make me so much worse and I couldn't understand what it would change acutely. Anyway. . . I am so so glad that he has an open mind and is going to take good care of you!
  12. If you've started a new medication and now have a rash, the new medication (or supplement) is generally always a suspect and you should talk to your doctor about perhaps discontinuing it. This could come on weeks after starting it.
  13. I haven't tried it but have heard some of the mast cell docs have prescribed it to their patients with mast cell disease and high IgE. I presume you've already tried eliminating as many enviro triggers as possible and doing a strict elimintation diet low histamine, or organic preservative free, and eliminating all mandatory meds. Have you maxed out on H1, H2s and mast cell stabilizers and tried all the options? What doses are you on? If so Xolair might be reasonable. Hopefully you'll find some people who've been on it. It has more possible risks than the other meds which is why it's usually reserved until all else has failed from what I've heard. A lot of the mast cell docs don't seem to recommend allergy shots as we're so reactive they can make us worse and don't really help unless they're given for life... I hope they find something to help you!
  14. Me too ! Meet all criteria for EDS 3 though no one's slapped it on paper yet. Was all stuff that I just thought of as me and my family (bendy joints etc) I have MCAS also. I've been on ketotifen for a year. Started it with so many other meds hard to know what's what but am doing much better overall than I was a year ago. Will only know if I still need it when I try to taper off. I'm also on Cromolyn.
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