@justy Sorry for my slow response on this one and hoping it works out with the on-line pharmacy.
The drug was inhaled Ciclesonide - it is 'only' a steroid inhaler so shouldn't have caused this reaction. But it could have been the propellant used, additives, or even the brand new areochamber device I was given to use it with (I did wash it first as instructed).
I am not familiar with that med and it is so hard to know what caused what with MCAS. I tried only one steroid by nebulizer to try to reduce inflammation in my lungs and it was a horrible experience. I have some others as emergency back-ups for MCAS reactions but thus far have not had to use them.
I often get myoclonic type jerks as part of my reactions. This seizure was continuous large arm and leg jerks for half an hour with one side of my mouth being pulled tight down by a strong muscle contraction/spasm in my face. I was conscious but felt very strange - actually very very calm. I tried to speak but couldn't because my mouth was so distorted. After half an hour it stopped. then I felt confused and vague. the next two days the confusion and vagueness continued and I crashed badly and spent Saturday to Thursday in bed.
Wow, that sounds horrible and so sorry you went through that. I know you have had horrible experiences with GP's and specialists but can they do an EEG or try to figure out what is going on with the seizures?
Im doing ok with food now - not having any throat tightening no matter what I eat and my diet is no longer very restricted
That is awesome news! Do you know what changed?
I now no longer every try a new med or supplement unless someone is home -
Me, too, and I also do not eat any food except water unless someone else is home. It's horribly restricting but necessary for safety at this time.
but this is causing a nightmare as I only have one day a week when my husband is home now and dont want to use the children for experimenting with drugs.
Can you try a med with one of your adult children around if they know the emergency protocol or does that feel like too much to ask? My dtr is only 13 so would never do this but if she were in her 20's, I would probably consider asking her.
Then I don't want to try lots of things in one go! have a list as long as my arm from my Dr that I need to start but it is taking forever! -
This, I agree with 100% and think is crucial and with MCAS if you try more than one thing at once, you will never know what caused the reaction (good or bad.) I am making a lot of changes to my mold detox program and doing one at a time (even for a dose change of a med that I already know I tolerate) and even with binders as simple as oats or a prebiotic like potato starch. It is moving at a snail's pace but if I did it all at once and had a horrible reaction, I would not know which item to blame.
I COULD TRY THINGS IN THE EVENING, BUT AS WE LIVE IN A REMOTE RURAL AREA I DONT FANCY MY CHANCES WITH (OOps sorry not shouting) getting to hospital in the cold, dark, icy weather.
Agree on this, too, and the thought of going to the hospital at night is a nightmare and I do not live in a rural area.
I have an Epipen but really wouldn't use it unless I was not able to breathe.
Agreed.
Have you seen the blog 'collagen behaving badly'? the woman has MCAS, EDS and M.E (like me) and she talks about seizure like reactions to drugs - she says it could be an H3 reaction - central nervous system - and their are no drugs to control it.
Yes, that is one of the blogs that I subscribe to even though I do not have EDS. I have not read the entire blog and did not realize that she has had seizures like reactions to drugs. As fas as I know there are only H1 and H2 blockers like you said. She has some very helpful info on MCAS and I compared her very detailed food list to the SIGHI list although many of the UK foods and Swiss foods are either not in the US or have different names. Do you subscribe to mastattack.org?
I have a tooth filling booked in for two weeks time and two invasive tests in the hospital over the next month or so and now really more worried about it - if I start having a seizure with loads of stuff in my mouth that cant be removed quickly and easily or start seizing and jerking with a camera up my butt it will not be good!
Eek! Can you postpone or are they urgent to do right away? There is a list to bring to doctors or the ER from TMS for a cure that can be very helpful for procedures like this. So far, since my MCAS exploded onto the scene in March/ April, I have not done any procedures like those but know at some point I will have to. Here is the link and hopefully it works:
http://www.tmsforacure.org/documents/ER_Protocol.pdf
Keep us posted!