anaphylaxing
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Everything posted by anaphylaxing
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For Those With Eds, Mcad/s, Or Chiari--
anaphylaxing replied to westernmass's topic in Dysautonomia Discussion
I've been hypermobile since birth. Looking back I always flushed easily and had mild heat intolerance, fainted a couple of times and mild orthostatic intolerance but the full blown ?MCAS/POTS/anaphylaxis has only been the last year with a rapid downward spiral after IV contrast -
Yes I totally get this and need 10-14 hours of sleep to avoid it and need to wake up slowly. I make sleep a priority as I'll do anything to avoid nausea!
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Prednisone??? Any Input Or Experience????
anaphylaxing replied to jenglynn's topic in Dysautonomia Discussion
Very well put friedbrain. It seems there are a number of people diagnosed with AI at some point after a course of high dose steroids and it just makes you wonder doesn't it. -
Yayyyy! Congratulations! Keep us posted on how you're feeling!
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Me And My Mcas--A New Diagnosis And A Few Questions!
anaphylaxing replied to ophelialit's topic in Dysautonomia Discussion
I don't think you're going to top Afrin since he's a leading expert worldwide in the field, BUT to have someone local with even the remotest of interest and awareness of MCAS could be huge! What most of us are lacking. And if he's sorted out one or two of us complex people that is encouraging, rather than writing them off That being said I know it is always nerve wracking and stressful to see a new doc -
Me And My Mcas--A New Diagnosis And A Few Questions!
anaphylaxing replied to ophelialit's topic in Dysautonomia Discussion
thanks so much for posting the info. Good luck with the meds. If I could do it over again I would start one at a time carefully and see what effects they had so i know what i need and what I don't, not sure if that's what's been recommended to you. Keep us posted -
I've had a few mini faints while sitting. I think I was dehydrated.
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Me And My Mcas--A New Diagnosis And A Few Questions!
anaphylaxing replied to ophelialit's topic in Dysautonomia Discussion
Don't have the elevated thyroid antibodies, but wanted to say so glad you're on the right track! Also would you be willing to post or PM me the docs name? Always good to keep tabs on docs familiar with MCAS as there are not many! Keep us posted! What medications has he suggested? -
yes i would do what you can. Are you staying hydrated and keeping very cool? that helps me. see if it improves after awhile? sounds like your HR is staying in a reasonable range, have you ever checked your BP while you'r feeling nauseous? might be an idea.
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If You Could Get Rid Of One Symptom...(just One!)
anaphylaxing replied to summer's topic in Dysautonomia Discussion
allergic reactions to scents -
Prednisone??? Any Input Or Experience????
anaphylaxing replied to jenglynn's topic in Dysautonomia Discussion
Sounds like you've run out of options and need to try it. Just to give you my negative experience--needed it initially for anaphylaxis, then I couldn't get off it, it shut down my adrenal function and I was on steroids for a year. I became Cushingoid a few times, had loads of weight gain, POTS flares, acne, gallbladder issues...close to most of the possible listed side effects. I will never take it unless forced to again. That being said sometimes we are stuck between a rock and a had place. If you want to know any more details just message me Let us know how it goes and I really wish you all th best. -
Yes ages ago. Regret it now realizing how harsh it was.
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Yep I'm all over the map. Seemed worse before on MCAS meds whether or not it's related.
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Extreme Dryness From Allergy Meds ?
anaphylaxing replied to Dizzysillyak's topic in Dysautonomia Discussion
could be reacting to the med or one of it's inactive ingredients. I'd be tempted to try a different one if it doesn't resolve in time. In general, Benadryl is usually recommended for breakthrough reactions and not daily suppressive therapy. Hope it sorts out! -
What Is Your Treatment For Mcad?
anaphylaxing replied to julieph85's topic in Dysautonomia Discussion
A mix of H1 and H2 blockers and mast cell stabilizers are the usual treatment. Sometimes antileukotrienes and a few other options as well. I am on Zantac (H2), Cetirizine (H1), Ketotifen (H1 and MCS), Singuliar (leukotriene), and Cromolyn sodium (MCS). These are often needed at higher than the usual doses. Hope you see improvement. -
Jango- as far as the POTS if 100% was my worst I'd say I'm probably at 50% or even less. My overall strength has improved a great deal. My reactions are constantly changing. Overall much better, but the scent reactions came on after my POTS started, months after, and are verrry limiting. jpjd I had a massive anaphylactic reaction last year that ended with me up on high dose steroids and I started getting tachycardia after pizza and with standing, months later was triggered again likely by Florinef which caused a flare. I fit into the MCAS realm. My meds are on my blog in the link below my name and so are more details if curious.
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For the first time since my "POTS" began acutely last summer, I didn't fit the POTS heart rate criteria when I checked my vitals last night. Thank God. It seems so much has improved since being off steroids. My POTS was it's worst when I was on high doses, which prompted them to put me on higher doses. .. I don't know if it's merely the passage of time since the mega anaphylaxis, the increase in my exercise of late, or the meds, or all of the above. But whatever it is I am so thankful for this improvement. The biggest recent changes have been stopping roids, cutting reactine and singulair, and increasing exercise For those interested in the numbers: My standing BP last night was 109/67 82 bpm HR Sitting HR 58 bpm, Standing at ~ 1 and 2 mins was 66 bpm and 76 bpm. Unreal to have a HR below 100 bpm standing for me. My HR still sky rockets with activity and I don't feel 100% normal but am able to do so much more if I keep cool and hydrated and have heaps of energy (if I sleep 12-14 hours a night Long may it last! Now if my gallbladder and scent reactions would follow suit I would be ever so grateful :S So sorry to those reading this who's vitals are still garbage. Don't give up. You never know what improvements are ahead. Ana
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Do People Recover From Being Bedridden??
anaphylaxing replied to hippychic258's topic in Dysautonomia Discussion
I did! I'm not back to full normal, but SO much better than I was 6 months ago. Hoping not to go backwards! Keep hope alive, limit stress get lots of rest, drink lots of fluids and stay strong! The tachycardia and faintness kept me from walking. My heart would race so fast that I felt like I was going to die imminently. I was able to go to the bathroom and for short walks when it wasn't as bad during the day. I forced myself to walk as much as I could physically tolerate even though it felt horrible up and down the halls of the hospital trying to force my body to remember how to do things. Not sure if that helped or not. -
Mcad But Can Not Take Anti Histamine!!!
anaphylaxing replied to diamondcut's topic in Dysautonomia Discussion
Such an unfair combination isn't it? Need meds but sensitive to them. Yes many people struggle finding meds they can tolerate. There are heaps of types of H1 blockers, then there are mast cell stabilizers too. Oh and as Lyn said sometimes it's the inactive and not the active ingredients that might be causing you issues. So find out what the inactive ingredients are in the one you took so you can cross reference in the future if other meds with the same additives give you issues. Glad you're tolerating Zantac. Noticed any changes? Do you normally get reflux? -
I fit all the symptoms and am taking the same treatment but don't technically fit the criteria as I have no proven mediator elevation. The diagnosis is a bit irrelevant to me as it is still in its preliminary stages of research/understanding. What's important is ruling out mimickers and finding a treatment that helps.
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Tristessa check out my blog, the mastocytosis society webpage http://www.tmsforacure.org/, and the mast cell disorder patient forum for interesting patient stories http://mastcelldisorders.wallack.us/yabb/YaBB.pl see what you think. Ideally a doc who knows about them would see you and rule out other causes of those sweating episodes and see if you need a mast cell disease work-up. Feel free to PM me if I'm not making sense. The symptoms of mast cell disease are very vague and many conditions have overlap. Some of us don't fit into a specific diagnosis but still find that we improve with antihistamines and mast cell stabilizers.