anaphylaxing

Frugalmama Yes excercise/strain can be a MCAS trigger for many I had some weird hot flushes and tingling for a few weeks which might have been pots/mcas but nothing debilitating until the anaphylaxis and all that followed what happened with you?

yep I did/do

There is a pic of it on my blog if you are interested

I ordered a foot peddler from Amazon.com that was very cheap and essentially works like a recumbent bike if you sit in a chair. I love it

Claire, just checked out your blog; it's great! You have a wonderful positive attitude! I hope you feel a lot better soon. Julie-- I am VERY inspired by your running comment. WAY TO GO! Carol---exciting on the Allegra and Singulair! I haven't asked you, did your POTS flare with this ?MCAS flare? I am so glad you are back to work a bit. If I can get off steroids, I might try Allegra for the scent issues. Yes, Claire, too many threads in a thread, sorry!

Claire, I'm so sorry to hear that you have so much to deal with. I agree that talking to someone or having someone around would be great IF you can. Great that you are getting an Epipen and going to try to start on some H1 and H2 blockers. Zantac/Ranitidine and Zyrtec/Reactine/Cetirizine would be a good place to start. Lots of people say it takes awhile to sort out which ones work for them---I'm not there yet! I also take mast cell stabilizers ketotifen and cromolyn. I also take Singulair (antileukotriene) and use Atarax (potent H1 blocker) for attacks/episodes Keep us posted! We're here for you!

Carol---Way to go on your day!!! That is AMAZING! I am so happy for you and it is great motivation for all of us! You've been battling this thing head on! Good to know about Allegra---this scent sensitivity is driving me mad! though some would argue it' driving me more mad

I totally agree with the just going to ER and not checking in thing! If I get worried, I drive to the ER parkade and monitor how my rescue meds are working +/- take more if I have to. I bring a BP cuff and monitor my BP. I have a rule that if my BP goes down, or my throat swelling/trouble breathing keeps getting worse, I have to check in. Even after checking in they might stick you in the waiting room and maybe you'll get better and just say you can go! But you need to make sure you have some meds and some plans for help! SO glad it resolved! Hang in there!

Sorry to hear! I would go to the ER if you don't have any antihistamines on hand! Do you have an epipen? HAve you had a baseline tryptase? Always worth drawing it during an acute reaction. Yes there is debate about what a totally normal tryptase is. You are right about the level for mastocytosis, but some say about 0.99 is indicative of MCAS; depends who you ask. I definitely get reactions like you are describing and it seems no two are the same. They are SO scare especially when the throat swells. I take 25mg of atarax for episode and lie down and try to relax. But not to be alone IF YOU CAN and if you haven't experienced a lot, going to hosp is reasonable. I'm also on a schwack of other meds below. I react to all smells chemical or not these days, many foods, heat, and stress. Hang in there and keep us posted!

Aaron, I tried fludro and had a bad reaction to it,; had to be admitted to hospital So I'm trying the MCAS meds and lots of water Thanks for checking out my silly blog. Hopefully together, we can fight our way back to some normalcy!!!

thanks for the update! I'm also trying to wean of steroids. Switching to hydrocortisone seems to have helped me a bit but I'm still not off yet. If you try to taper make sure you carry an emergency steroid injection with you and watch out for symptoms of adrenal insufficiency Good luck withe the V/Q scan!

Oh oops forgot to mention the mastocytosis society recommends putting "systemic mast cell disorder" on your bracelet instead of MCAS because it's better understood Also I often get high volume urine output when I flare but haven't been checked for DI just kept slamming back the fluids

Glad to hear of the progress Serbo. I am also SO impressed that they are admitting you to try new meds as a precaution. WOW. You have a great doctor. I have regular POTS, MCAD, JHS/EDS III Stress can definitely aggravate mast cells which is really a strange thing to get used to. . . Keep us posted on your progress I hope you find a medication combo that works for you!

My levels were always normal when I had the twitching but now I'm on steroids and VitaminD/calcium so who know what part is helping. I have hardly any twitching just some that sometimes accompany my MCAS reactions

I'm in the opposite realm too like many have added. Mine was also fired for missing work; didn't realize there were ways around that Hang in there; it sounds like you are being VERY strong! I need to be more like you! I really hope you feel better soon

I agree; though weird that many improve on steroids which ups your circulating cortisol

I had that very early on but not as much lately huge possible list of causes for muscle twiching. Ya electrolyte levels are a good place to start If they can't find a cause it might be the POTS not sure what mine is still

So glad they're being thorough!! Make sure if you can that they are doing a urine N-methylhistmaine and prostaglandin D2 for the mast cell markers. I hope they find answers and a way to treat you better. I would think if they meant ejection fraction on your echo that that is in the normal range. But glad they're checking for MVP; I think I might have that too, but echo's been normal so far I would be worried about the contrast too and would consider premedicating; though gadolinium is supposedly safer than CT contrast. I just know that when they even inject saline I react from just the disturbance I think....

Oh k good. If you say you don't want contrast, it is TOTALLY you're rite. They can still scan you without it and get a good amount of info. if they say they need it, I would say scan me without it first, then I'll talk the results over with my doctor and go from there as to how necessary the contrast is

Oh Carol I can SO relate to almost everything you say. I too thought others were exaggerating how horrible of me. My life also took a turn after anaphyalaxis. Here's hoping we battle our ways back to the top! The month before my anaphylaxis i now realize that I had two episodes of flushing/feeling overheated and night sweats , but before that the ?POTS really didn't affect me. . .

Is there any way to do the techniques without the DVDs?

Quite the review godgal! Sorry I'm confused. which dvds did you do?

Good points thankful. Lovebug, If you do get a CT please be careful and get a non contrast scan if you can. It was severe anaphylaxis to CT contrast and it's sequelae that nearly killed me and has ruined most aspects of my life...but I'm happy to be alive!! Just sayin' I will ONLY ever get contrast again if I am premedicated and need it for a life threatening reason

Great advice Rama. I've only travelled for medical reasons since being sick and premedicated with steroids etc I too am worried about future travel. For now I would be most comfortable knowing I was somewhere close to good healthcare (cruise would worry me) so I can relate. Hopefully I'll get better and not be so worried! Congratulations on getting married and good luck with whatever you decide Ana

Fascinating Lyn that you gained control in the past but SO sorry that you're back here... What did you end up eliminating? I am now reacting to all scents so am interested to learn more about your food/lifestyle overhaul if you care to share