jbean
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I had another shock incident. This is a real change for me, as you know, I have been quite stable for about the past seven years.
I have been taking the following medications:
Morning: 5 mg Loratidine 100 mg Gastrocrom 81 mg aspirin (was prescribed this as they found out I had elevated prostaglandins, about 1450)- started the aspirin this past January
Evening: 5 mg Zyrtec
I also took Pepcid as needed, though not on any regular schedule. After my weird hot chocolate and zyrtec reaction three weeks ago, I went back to my old standard of loratidine and gastrocrom in the evening. I was feeling kind of tired out though, getting some headaches.
Yesterday, I had a whale of a reaction again, and I don't know why. This was the worst one I have ever had, even worse then when I was undiagnosed, and not taking any medicines.
I got up in the morning, and was able to do normal activities. Went shopping, ate lunch... everying just fine. I went outside for a walk later in the day, went around the block, and started to feel stomach discomfort and really tired with a headache. I went back home, and decided that I would lie down for a nap. When I did so, I suddenly got stomach discomfort (pain nausea), and again felt a very strong warm rush, head-to-toe. This time, my skin also began to burn, very strong, almost like I was dipped in acid. I started to turn red, and got tachycardia (went up to at least 120 bpm). I got up to get some water to take a Benedryl, and felt very dizzy, like I would pass out. I took the Benedryl, and called 911. I did not take the pen, as I could still breathe o.k., and was not losing consciousness.
At the ER, they gave me a workup. All labs came back normal. This time, I asked them to please take blood samples for tryptase and prostaglandins, which they did and sent out for later analysis. They also gave me other labs and an EKG, which all came back normal.
I was given another 25 mg of Benedryl, Pepcid, and predisone (60mg) with a five day prescription for more prednisone (60 mg/day). They asked if I wanted them to give me an epipen, as they would have given me one. However, I seemed to be stabalizing and could breathe well with good oxygen saturation, so I said no. Also, I am really sensitive to drugs, and I have asthma. I am admittedly a little scared of messing with the epipen, and feel I should only go that route if absolutely needed, if I am losing consciousness or can't breathe. I was kept for observation and discharged, but they advised me to contact a mastocytosis specialist about this, due to the sudden increased frequency of reactions, which I am doing.
I can not identify any consistent trigger, unless there is something in my house causing this, but there has been no significant change there. I've been stressed out of late with job hunting, could this be doing all of this? If that were the case, wouldn't I get it at work then and not at home on the weekend? It's not a panic attack if I am getting the warm rushes and skin burning, and Benedryl takes it away. Also wondering about the aspirin, as that is the new player to the game. Maybe I just don't tolerate that. I felt some slight tachycardia last night and stomach discomfort, but took a little Benedryl and it went away. I have some stomach discomfort this morning as well. Not taking the aspirin today.
I am really puzzled, as I have been so stable for the past seven years. I don't know what is going on here.
And now my mom is in the hospital too. She went in yesterday for some back blood sugar problems and they think she had a stroke on top of it.
Everything is getting all messed up, and I'm trying to be a tough kid here, usually am, but this is all a bit much. I am really hoping my masto has not started to get worse, as I have enough on my plate already.
I know I sound like a broken record cyber buddies, but I could sure use some prayers. Clearly, I need some major life changes to a more peaceful and stable life, as well as some adjustments to the medicines. I am on good behavior the past could of weeks, eating very well and going to bed early. It gets really frustrating though when you are doing the right things and still getting attacks.
Another thing that frustrates me of late is having to go over and over what mastocytosis, Now realistically, I know that is is very rare, and I certainly do think that the medical workers are fine people who are doing their job properly by asking. What frustrates me is the lack of awareness of this disease. It is not their fault, as most of them were never taught about this in school. I just wish that it would be included more in the medical education curriculum. When I shocked out a couple of weeks ago, I actually got an emergency doc who knew about it, and that was just an entirely different experience.
I work where there are a lot of medical students, and sometimes, they come in for the evaluations too. This last time, I got the sweetest little gal, and she was asking all kinds of questions. I wound up giving her a tutorial in the ER, telling her what to look for, etc. She really appreciated it, and I have to say all of them did.
We just need to start pushing for more awareness of this people. When we shock out and such, sometimes, we look so "normal" that people don't understand the seriousness of it or what to do about it. I don't get the rashes, and go out of my way to be calm about it, so this is really a problem for me.
Sorry for the length of the post, just needed to express today!
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