Hi everyone. I’m new here. I have not received a formal diagnosis yet, but am in the testing process. It’s a little unnerving because I have virtually all the symptoms and signs.
The “allergy attacks” started on 6/28. I had a ten day span where I had anaphylactic reactions about four or five times, even without exposure to what we thought triggered the first one, and was in the hospital 8 of those ten days. I even had an anaphalytic reaction to solumedrol, the steroid they use to treat anaphylaxis! I was released on July 8. Following my release from the hospital, I went to an allergist who suspected that I had a mast cell problem and sent me to this specialist about an hour and a half away. He has brought up the mast cell thing as well and is currently reviewing my records and running tests.
On 7/8, I was discharged from hospital on Zyrtec and Singulair at night. On 7/20, the specialist bumped up the Zyrtec to twice a day.
Since being out of the hospital on July 8, I’ve had two more attacks in this 14 day period. The first on 7/11 and I was able to manage with Benadryl. It happened after a kid got into my car smelling like an ash try. I got a bit lightheaded, headache, and that AWFUL burning and stinging sensation all over my body.
The specialist told me the burning is histamines being released.
The second one started on Thursday of this week, 7/20. I could feel light burning and tingling but it wasn’t unmanageable. Friday, 7/21, after exercising for a few minutes, when I stopped, the burning and tingling started getting severe. I was also a little short of breath and started coughing. I took my rescue inhaler and Benadryl. After a while I thought I was in the clear. But like two and a half hours later, I was driving and it hit me full on. Chest pain, unbearable burning/stinging, couldn’t swallow, getting dizzy. I was taken by ambulance to hospital from the side of the highway. My heart rate was hitting 150s, nauseated, blood pressure extremely elevated.
I overheard the paramedic telling the nurse that besides the Benadryl he had given me a placebo to lower my heart rate to see if I was faking I guess? His words were “to see if it was some kind of pseudo reaction.” However when he gave me whatever it was he gave in the IV, I did have more burning in my chest. When I get the Benadryl in the IV in the middle of the flair, it often feels like so much pressure in my chest I gasp for air. Anyway the hospital kept me on Benadryl, zofran, Pepcid, and Ativan (to lower my heart rate) and let me go after like five hours instead of keeping me.
I also got copies of my medical records from the two prior hospital visits. I noted on record says I “have a lot of complaints even though I look fine” and another says rule out allergies, anxiety, withdrawals, and that I was drug tested twice. (Negative of course). Between reading that and how the paramedic handled it yesterday, I’m hurt, irritated, and frustrated. This isn’t “anxiety” or some kind of psychological response. I’m also afraid to eat anything or exercise now because there seems to be no consistent trigger.
After yesterday, hydroxyzine has now been added to the regiment.
Does anyone have any advice they can give me? This is seriously screwing up my life and I can’t live like this.