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Everything posted by anaphylaxing

  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.
  15. Thanks again everyone Batik-- yes initially it was only with a lot of fat. Then was after two eggs, then after about 2 g of fat and now as little as 1 (combined from veg sources) or none at all. I haven't eaten and fat sources for over two months now though I know veg etc can be a negligible source of fat.....So it's progressively becoming fed up with me. p.s. I love the "bits and bobs" in your signature. Yes I go by Ana. I think you are wise to avoid steroid joint injections, can also increase risk of tendon tears etc I've been told though might give temporary relief. Oh p.s. I see you're suspected mastocytosis...you probably already know that they generally recommend avoidance of opiods and NSAIDS in mast cell patients as they can make things worse. Though, every person is different. Makes things tricky for planning surgery pain meds! Good luck sue and Katybug. Hope there are lots of improvements in your future!
  16. Thanks Troy. I hear ya, nothing in life can compare to the struggle for to stay alive and cope with chronic illness. I appreciate the encouragement and I wish you strength and determination which it sounds like you already have
  17. Thanks for all of the replies. Well said Lyn! I'll try to make sure I cover people's questions: Looking back at my whole life I've always had POTS/OI tendencies, but becoming aware of this hit me suddenly with a post-prandial attack of tachycardia up to 160 bpm. Thereafter I realized that my HR was sky rocketing everytime I stood and sometimes at rest. This was (I think) about a month after my severe persistent anaphylaxis to CT contrast. Before the contrast, I had been having increasing fatigue, night sweats, paresthesiae, and muscle twitches. I was at my worst for another 4 months-- on varying doses of high dose steroids, needing to use a wheelchair to cover any distance more than my room, and walking then was very uncomfortable and frightening. This time still had an undulating baseline of flares with severe tachy even at rest which I eventually realized were after eating and worse with cycles. I had to let go of my usual "push yourself, busy body attitude" well at least look at it in a different way. Re-examine every thing my body encountered and become skeptical of every medication, inhaled/ingested substance and every proposed theory presented to me for why I was like this. (Which was often that it was just anxiety :S) Little by little, trying to only change one thing at a time, some progress was made. But I am still in a very cautious place. I need 10+ hours of sleep or I get worse, mostly stay home or outdoors to avoid inhaled chemicals, am still on an elimination diet, and still planning to try reducing meds after surgery. For my gallbladder, I had it imaged and it was completely normal and I was asymptomatic prior to my first anaphylaxis. A month after my reaction I went gluten free and the cholecystitis began 6 months after that. I'm not saying it was from going gluten free just giving you the timeline since it was brought up. Gallstones are common, but the proposed theories in my case are that the long term steroid use raised my cholesterol levels along with becoming Cushingoid a few times, also I overall had more fat in my diet as there were only a few things I could consume safely whereas the "old me" rarely ate anything fatty. Being bedridden for periods instead of getting regular exercise probably didn't help either. I had multiple attacks before I clued into what was happening and they were always after fatty meals. for 2 months now I've had constant pain that varies in intensity. My gb is full of stones and thick walled on u/s. All of my docs are reluctant to have surgery and it is a last resort because of the severity of my anaphylaxis and my overall sensitivity to so much right now (people doing laundry down the street makes my throat swell and I have instant SOB stepping into the hospital). But, an emergency surgery that is not carefully planned would also be dangerous. So the careful plans are in the works. I think surgery and general anesthetics should be avoided at all costs in everyone, but especially in us. This is my last resort. At this point it's hard to imagine surviving! Batik--good Q---my constant gallbladder pain is aggravated by the bouncing of running likely because I have peritoneal irritation in that region. Very annoying how much it's getting in the way of my recovery. I didn't see that one coming! I am back on gluten and have not flared from it, but realize it is a major trigger for many. Each of us are so individual and we need to listen to our bodies like Lyn said. I am not posting what's worked for me to say it will work for anyone else, we are all so different. But in case there's a glimmer or idea that I can save you time in thinking of yourself, I wanted to share what I did. I know reading everyone's posts has been so helpful to me. My life now is still nowhere near normal, but when you've tasted worse and have some progress, it's glorious. As far as the speed of my recovery it's felt like watching paint dry. It's only when I stepped back and realized one year ago I was using a wheelchair and now i'm on a hike, it hit me! So I guess it's been gradual over a year. Hopefully surgery doesn't set me back too far. My adrenal function also returned after a slowww taper of steroids so I'm sure that's played a part in my feeling better. I stopped steroids last May. For those of you who are struggling with much worse things than me, I sooo feel for you and am sending you strength and encouragement over the web. Don't give up! And thanks to all of those who supported me. I will post an update if there are any other big changes or developments.
  18. Just in case I didn't tell everyone here. . . Last fall (2011) I was using a wheelchair to get around and mostly bedridden due to the severity of my POTS. One year later, I can walk wherever I want and can hike up to 3 hours. I started running but had to stop because I'm having gallbladder issues. I also have MCAS with anaphylaxis and I did the following over the past year: Get a good sleep every night, drink lots of water Fresh air!! Open windows. Get rid of all chemicals (cleaners, cosmetics, shampoos, detergents, scented candles). Clean with water, unscented soap and that's it. Avoid indoor places other than my scent free home. Stayed on H1 and 2 blockers, mast cell stabilizers and antileukotrienes, but have cut back slightly Tapered off steroids Pushed myself to stand, walk etc as much as I could when I was well enough with ice packs close by to prevent overheating Doing a reintroduction, elimination diet with only organic freshly cooked foods Eat small amounts Stopped taking any non essential supplements or meds Of course everything I've done might be partly irrelevant as the passage of time might've been the biggest help. But a lot of it I had to do to lessen my reactions. I thought I was going to die and I would never walk again or feel like myself. I'm still not who I used to be and have to make a lot of adjustments but am SO much better than I was. Don't give up! You never know what's ahead!
  19. I have POTS and MCAS. Looking back probably had tendencies toward both but had a mega MCAS downward spiral and month later POTS started. Which causes which is not yet sorted out. They are just starting to recognize it. There are few MCAS experts and they or someone who can relay with them would be best to sort things out. The best are in Boston and South Carolina if you can travel or have your docs contact them. You need a good doc to look at the whole picture, exclude other diagnoses, consider all of the symptoms and treat you and your sisters symptoms accordingly. Good luck! More details on my blog if curious Best thing is to ID early so you can prevent the downward spiral that most of us need to sort out what's happening
  20. I'm on it but started when I was having such frequent anaphylaxis and constant symptoms would be hard for me to know if I had any negative side effects. I started a bunch of new meds at once. I started to improve after about 4 weeks of being on it. Had also started ketotifen and was tapering steroids. SO who knows what's what. sorry but still taking it. Been on it for over a year and do fairly well with food tolerances.good luck
  21. I get that with loads of fabrics. And can't touch unfinished porcelain or chalk iiick
  22. Med changes either starting or stopping can definitely throw my system off.
  23. I get this, I have MCAS and it's usually a delayed response to a trigger for me. No doctor has told me this but I've sorted it out with trial and error. Eg last week I ate organic grapes and 2 hours later, palpitations. Before that it happened after inhaling paint fumes, and once a few hours after I had overheated. So for me limiting triggers helps, like any foods, stress, heat, I've had to cut out caffeine and chocolate completely also.
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