Hi Sarah,
It was because I talked to Nancy Gould who is an expert in Mastocytosis research, an RN and a patient too.. She advised that Benadryl effects an enzyme that allows mast cells to degrade faster...so keep it for an emergency drug, not every day. Since then Lisa talked to Dr Castalls who said it was fine to take Benadryl every day, so I would go by Dr Castalls advice.
Hugs,.
Ramona

Thank you, that's very helpful.  I have been having more of these stupid anaphylactic/toid episodes at night the last couple of weeks, and I was worried about taking too much Benedryl and somehow making things worse.

I think I need my meds adjusted but I can barely convince my skeptical doctors up here to keep prescribing the doses I am currently taking.  This is so frustrating.

Hi Ramona ,

I feel the same about my previous ability to make my " in my experience " suggestions or out and out tell them if it is required .

My GP here is with me , we had a very good consultaion a week ago where I told him I wanted more vestril . It also cured him of any thoughts I may be depressed as I was smiling

I have stayed on 300mg twice a day of ranitidine and my tummy is much better .

hugs
Jose

Hi Sarah ,

I hope you are doing better . When my meds change , i stay on the same dose for a while to see if it is going to work . I keep some pirition ( same class as US benadryl ) in reserve for rescue . I have one dose of hyroxizine as well

I have to be careful to medicate appropriately . I not talking about in shock , that has its own rules , meds -if you can , epipen and help .
I don't know what background daily meds you are on . You may be undermediacted as I was for a long time . I pick antihistimines related to the symptom . Piriton for itching and my chest , inhaler for my chest , ranitiddine for stomach swelling , pain and cramping , hyroxizine - for rapid progress . I know this seems complicated . For many set rescue doses work . I just start with the most likely

In my first year i was wholly under medicated , and was given steriods to use in a biggie . So I did , but because I was so under medicated everytime I came off the steriods slowly I would have another reaction with shortness of breath. BUT because I did this at home , and treated myself , apart from epi pen level reactions , which were 5 at home 1 epi pen , my GP had no knowledge of my true state and frequency of my reactions . She just filled my prescriptions without question . When I raised how rough I was with her , she said reduce the steriods , but I couldn't - because I wasn't adequatly medicated .

I am not saying wait to speak to a doctor if you are getting very ill . BUT if you don't work with your doctor they will not know what is happening . Not doing so puts you at higher risk of serious incidents as there may be a reason for your increase in symptoms which needs dealing with , which you don't identify and your doctor has no idea of .

So , no you can't get addicted to antihistamines , but there may be a need for higher daily dosing which your doc will be completely oblivious too .

Yesterday , I was really rough , I was up to my limit medication wise , i rang my GP to ask , so it was noted , no call for 20 mins so i took 2 doses of piriton ( similar to benadryl US ) which settled me . The oncall rang back later . Today my regaular GP knew about yesterday and is ringing the specalist to encourage him on .

Have you got a specalaist ?
I hope you are feeling batter today

hugs
Jose

Hi Sarah!
I have a few suggestions for you Hon... First remember that MCAS and Masto are treated the same way. Now 2 more
1) your Zantac?? (rantidine).. Most of us are on 300 mg twice a day.
2) Singulair seems to help most people quite a bit, extra energy too, so take it in the am, and many people have doses of 20 mg or 30 mg that seems to help more.
Please talk to your DR about this

Im not quite sure about  meds for your low BP and POTS.. what is your BP running most of the time?
Hugs.
Ramona

Thanks again for the advice, I will talk to my doctor about this.  I do keep well hydrated now, as well as consume salt.  I don't know how to get my doctor more informed about this, so he might be more supportive of me trying more medications - when he heard my tryptase was low and my skin biopsy inconclusive, he decided I didn't have mastocytosis and could go off all the meds - I had to try to explain it all again, and it's just exhausting.

Without midodrine my bp tends to run low (90/60ish), but when I go from supine to standing it falls over and over again and my heart races to keep it up.

I do think this has been going on for a long time (at least 25 years) and over time it has gotten worse and kind of turned into something else (POTS).