Thank you all for such kind words! I am currently on:
Allergy stuff:
Hydroxyzine HCL 50 mg every 4 hours
Allegra 180 mg 2 times a day
Pepcid 10 mg 2 times a day
Gastrochrome 2 vials 4 times a day
Benadryl if sudden symptoms occur
Venotlin inhaler as needed if sudden symptoms occur
Epi pen as needed - only used this once in the past 2 years but had it out of the canister a number of times while I waited to see if the sudden symptom stuff would work. My doctor told me that I should take it anyway because it doesn't last long and should tied me over until the other stuff kicks in. I avoid it because I don't want to go to the ER. (probably dumb)
Seizure stuff:
Vimpat 300 mg
Amitriptyline 50 mg
Had one other but began reacting to it. I think I need more but we are upping my allergy stuff first to try to quell some of the masto flares before adding more. Most seizure medications have allergic risks so this has been a tough area. The only way to tell if a medication is going to work is to try it and it takes a while to build up an effective level.
Other stuff:
Lorazepam .5 mg as needed - anxiety
Ondansetron ODT 4 mg as needed – vomiting
Zomig 5-10 mg as needed – migraines
Tramadol – 50-100 mg as needed – pain
I try not to have to use these but I am very glad I have them available when I need them.
100 spf full spectrum block – sun protection
I get a bad rash from the sun. This helps but it does not stop it completely. It does allow me to be outside for longer without overwhelming consequences as long as I don't get too hot. I don't seem to get the rash on my face as much as my chest and arms. I have even gotten the rash through the car window on a long trip.
Things that hit me hard and always:
Milk protein – this can send me to the ER but I have gotten good at avoiding it.
Medications – almost all pain medication, many seizure meds, some over the counter stuff.
Hard shellfish – clams = visit to the ER but I have been successfully avoiding this too
Alcohol – Wine especially makes me flush and sometimes has made me feel like my chest is being crushed. I'm not sure why but every once and a while I'll try some again. (again, probably stupid)
Heat – I love hot showers but I come out with welts, looking like I was trying to rip my skin off instead of washing. In the summer I will sometimes feel really sick if I am in the heat to long. I try to listen to my body and go back to my room where there is an AC unit when I first start feeling ill. I don't always think I'm that hot but my body seems unable to deal some days.
Exertion – I can walk a 10 miles but one dance makes it hard for me to breath and I sometime start flushing. As long as I pace myself I can do anything but it seems if my heart rate is elevated it sets me off. I built a patio, including digging out a 40 x 20 area by myself. I had to work like a lazy man but I refuse to give up! My heart is fine so I just keep working at a pace my body will deal with.
Stuff that is not controlled that I think there might be a solution for:
Blurry/Double vision – looking for some ideas for eye drops to try??
Insomnia – I think this might be seizure related but who knows.
Seizure activity – working on this now but it's been really hard. One of the medications I tried made my brain swell and one side of my face was a little droopy for about 6 months. A lot of them don't seem to work and I have developed reactions to everything I've been on that has.
Stuff I really miss:
Being drug free
Spending the whole day working in the garden
Cheese and a good bottle of wine
Being able to go out to eat without fear
Having the energy to do something after work
Use my vacation time for vacation!
Stuff I'm really grateful for:
My family
The doctors that believed me and didn't think I was psychosomatic
All the information on the web. I know I would be dead by now if it wasn't there.
Thank God most allergy stuff is over the counter.
Finding a website where I could ask questions without risking my personal information would end up in the hands of my employer