anaphylaxing

Scary. I responded to you on the other forum, but I definitely get those shakes as part of my anaphylactic reactions as well

when I say anaphylactic it's just for ease of lumping all of my POTS, MCAS flares etc as I think of them all as a mast cell degranulation cascase of one sort or another

Twice, the first time (for anaphylaxis) I never left, headed to ICU then was an inpatient for 3 weeks. Then readmitted for a month 4 months later. Avoiding hospitals like the plague since.

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 always mild, but when my POTS/MCAS flared it was insane. Could barely open my eyes or be around the slightest noise. Senses went hyperactive. That only lasted about 24 hours. But my sense of smell is hyperacute still

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!

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!

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

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.

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.

allergic reactions to scents

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.

Interesting. I find I feel better overall with exercise BUT if I overdo it or overheat then it triggers my reactions. But overall worthwhile so far

Who knows what they'll figure out about all of this someday!

Yes ages ago. Regret it now realizing how harsh it was.

Yep I'm all over the map. Seemed worse before on MCAS meds whether or not it's related.

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!

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.

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

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.

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.

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.