I've used an EpiPen... just once.  It felt like I drank about 50 shots of espresso!  I was SUPER jittery for around 15 minutes.  My heart raced and my legs were so shaky that I could barely walk.  I can see why you might want to avoid it if you get hypertensive during an attack or your heart is not in good shape.  My BP spikes briefly at the beginning, but then it crashes.

In my opinion, it's much better to learn your early warning signs and treat yourself with antihistamines before a reaction gets out of control.  Antihistamines are very safe and they don't make your heart race.  Of course... sometimes you don't get an early warning.  I carry an EpiPen for emergencies.

Heather

Hi Sarah,

I ditto Heather and Deborah.  Like you, I get very high BP and tachycardia when I start "my reaction process"....for lack of a better term.

I run for my emergency meds and 99.9% of the time, they work extremely well.  The one time I didn't use my epi and should have was when I reacted to eating and had been on a antibiotic for a few days. I was blue by the time the ambulance came..I had taken all my emergency meds too.  The EMT gave me albuterol by mask and because I was still having trougle, it was repeated a second time. They had the epi ready but I have heart damage from past chemo and I have dysautonomia (POTS) so I wasn't going to let them give it to me unless it was absolutely necessary! When I got to the ER, they gave me my usual IV Pepcid, Steroids and Lorazepan and my reactions stopped.

It's a tough call sometimes.

This is a rather long story, but please bear with me and I hope it will somehow help you.  

I recently had an appointment with Dr. Castells. She is concerned because I no longer have any antibiotics left to take that I haven't had a severe reaction to.  So before I get sick, she wants to have a plan in place.  After a day of food testing, etc. we decided to try the penicillin challenge.  They did a skin prick...no reaction.  They gave me a tiny bit sub Q and my pulse and BP shot up.  After that minor reaction, I was told to drink as much ice water as possible and sleep for awhile. Dr. Castells came back in and asked me if I would like to "take the next step and try 250 mg of penicillin." I asked, "How about 1/4 of that tablet?"  She was absolutely fine with that.  I took the 62.5 mg. and went and sat in the waiting room.  After 15 minutes I looked at my husband and said...."wow..piece of cake"...after 20 minutes I said, "Boy was that easy"....3 minutes later my vision got blurry..hubby ran for the nurse (15 steps away) and I was out cold.  He said Dr. Castells came running, she called the ER doc to come and there were 4 or 5 nurses who all came running.  (I am sure a patient who has passed out can't be too good for business).haaaa  Sorry...have to have a sense of humor sometimes!  What better place to have a reaction than in the presence of one of the best doctors ever!!  

The really interesting thing is that once this reaction started, my vitals were pretty normal the whole time I was 'out' (so I was told).  After sleeping for awhile and drinking lots more cold water, Dr. C asked me to come to her office.  This is what she told me, "You did NOT have an anaphylactic reaction."  What????  Are you kidding me???  Then what did I have???  She simply said, "You can not process antibiotics"....she added something about damaged pathways (I need to listen to the tape I recorded again).

She asked if I had ever used my epi in that situation, and I said, "No".  She said, "Good, you shouldn't have".  Only use your epi if you can't breathe and your throat is swelling shut.  She assured my husband that I was never in danger...He said, "I wasn't worried, this was nothing compared to what I usually see".   hummmm  Sometimes it nice to be the one unconscious! haaa

I do have times I can not swallow, but I can still breathe.  So I just take more meds if I need to.  I am not sure if this helps or makes it more confusing. But for me it does bring into 'play' the concept of enzyme pathways and possible damage...and with Dr. Castells comment, I think this is something that is being studied a lot.

Personally I think these are future conversations that will need to take place at some point. As far as connecting them with mast cell reactions....I have yet to research any connection but am anxious to do so.

I am going back to Dr. Castells in a couple months and we will try different pre-medication regiments for me to use at home or when I am hospitalized  (when I need an antibiotic).  

This 'all' came about because last summer when I was hospitalized with diverticulitis, they gave me sooo many meds to keep me from reacting, I left the hospital with a pulse of 38, 14 pounds of water weight and pneumonia. And they only treated me for 5 days and not the 10 days they were supposed to.  That's never going to happen again!

This isn't directed at you Sarah, it's directed toward every mast cell patient out there.... It is critical to have a plan in place at a [medical facility...it honestly could save your life.  I have an ER plan and ambulance plan in place and am determined to have a hospital one is place as well!

End of story (speech)!  Sorry!

Hope this somehow helps!

take care....hugs, Lynda

I had a time when my reactions were getting worse and worse and had to use my epi twice in one week. I inject as soon as I know the symptoms are in the danger zone, no fooling around.  It sounds like maybe either you need better day to day management of your daily meds or you need to back off adding foods for now and let your body rest.

I always start with itching all over my head that spreads to my face and upper body, itching and swelling in my throat, puffiness of my face, feeling super weak and shakey.  Then when I took the epi I got a hot flush all over like using niacin. The epi really open up your capillaries so a heat to toe flush makes sense. And then I started feeling a lot better.  Never felt like it upped my heart rate by I was lying down.

Thanks Donna.  That is very helpful.  I had the Epi-Pen in my hand the other night and went to the ER.  I already get the shakes without taking it, so I can just imaging how that would be.  

Heather and Deborah--I have a question for you both.  I used to feel throat swelling early on and I could take Benadryl and stop the reaction from progressing.  Now that I'm on Singulair and my Flovent inhaler that I swallow for the esophagitis, I feel like I don't get the early warning symptoms.  My heart will start skipping a little maybe, but my throat doesn't bother me and then it will be super swollen suddenly.  I'm not sure how to manage that.  I see the mast cell doctor at Mayo in 4 days, so maybe he can help?  I feel like my symptoms change when I add a medication or take more of it.  Have either of you had this happen?
Thanks--Sarah

starflower you are soooo lucky ...most of the time when I have one of those "do I need epi moments" it is just there with no warning...you are one lucky dude...much love to you
redbird

It's very interesting that Dr. Castells said that. I have used my epi twice (I should have been using it more), but I have never had throat swelling.  I do, however, have very sudden onset symptoms including: nausea, severe abdominal pain, diarrhea, headache, flushing/burning, itching, tachycardia, etc. I'm usually burning up when this happens, and then all of a sudden I become freezing cold and start to shake.  I now know that when that happens, my BP is tanking and I need to epi.  When I had originally expressed to my immunologist that I was hesitant to use the epi since I had always been fine before, she looked at me like I was nuts and said "One time it isn't going to be fine".  My understanding is that if you are experiencing tachycardia and your BP is tanking (due to a reaction), you can go into cardiovascular collapse very quickly.

I will also say that using the epi made a huge difference for me.  Usually one of these big reactions would have me nearly bed-bound for a couple of days, whereas I rebounded very quickly after using the epi. It got rid of nearly all of the residual symptoms from the episode, which normally would have hung around for days.

When I was in the ER after the first epi, the doctor noticed that when I spoke I sounded like I had a terrible cold and my voice kept cutting in and out.  He pointed out that was part of the reaction, and was evidence that it was actually affecting my throat (which I'd never really noticed before).