Epinepherine/epi-Pen

[misstraci]

I've heard the term epinepherine before, does it have anything to do with us?? I just started some allergy shots 2/day twice a week and was given an epi-pen in case of emergency reaction or anything. the epi pen is straight epinepherine and i was wondering what it would do to someone with dysautonomia.

Thanks guys

[HyperPOTS8]

The catecholamines include epinephrine, norepinephrine, and dopamine. The layman's term is adrenaline. These are elevated in hyperadrenergic pots in which case injecting yourself with epinephrine would make you feel worse. If, however, you were having a true anaphylactic reaction it could be lifesaving.

[icesktr189]

Im sure it wouldnt feel too great for anyone, but if you are having a true reaction, I think worse POTS symptoms would be the last thing on your mind. I have one too but i hope i never have to use it!

[icesktr189]

Also i think it lasts only 15 mins... thats why they give two shots to give you 30 mins to get to a hospital

[misstraci]

Thanks for explaining it hyperpots8, I knew I'd heard that before. Yes Dani, I got a 2pk too, I hope I never have to use it either but that makes sense if they only last about 15 minutes as to why they give two.

[Katybug]

I am on allergy shots and was given an epi-pen too. It wasn't strictly the allergy shots that required me to have the pen though, it was the combo of allergy shots and being on a beta blocker. Apparently, being on a BB and allergy shots does increase your risk and/or severity of reaction. There is info that I read somewhere along the line that the BB will actually even make the epi-pen not as effective so you need to get to the ER as quickly as possible if you are on a BB and have an anaphyactic reaction to your shots, even after using your epi-pen. I, too, just hope that there is never a necessity to use the pen. I am on my 4th vile of titration on the shots and have only had localized ijection site reactions. I am also on an H1 and H2 antihistamine as well since I tested extremely allergic, well...,to the world basically.

[misstraci]

katybug, thanks for writing. glad you haven't had to use your pen either. interesting about being on the BB and allergy combination making the pen less effective, i didn't know that either. so, being on your fourth vile, does that mean you are 4 months in? do you notice you feel any better with the shots? which H1 and H2 are you on, i've been considering those as well. sorry many questions, thanks

[RichGotsPots]

Epi is pure adrenaline, during a severe allergic reaction it opens the airways by relaxing the smooth muscle of the lungs, but it relaxes the blood vessels in the heart and will make the heart pump really fast. Just like riding a roller-coaster and your adrenaline pumps.

I had to give this shot to my girlfriend, she is extremely allergic to certain foods, it's very scary. If she eats only a little I give her a lot of H1 and H2 first and see if it helps. So far that alone has saved her. I used the epi once on her. I saved her life I'm sure. It does hurt, I had to stab it through her pants on her thigh, because it needs to go into the muscle of the leg. After 2 minutes she was having major tremors and her heart went up to about 130 bp from 80 bpm.

If you do a search on here you can read that there are some MCAD POTS people on here who have used the epi when their MCAD was bad and it worked for them. I wonder if anyone of them were also on BB and if they are also hyperadrenic pots. Hyper pots people already have elevated levels of adrenaline..

Were you very allergic before pots? I've noticed my allergies to animals really only started to get bad recently during my 2nd pots major flare up, to the point I get anaphalaxis from dogs. Just to illustrate how odd this is, I had a Dalmation for around 14 years and a cat for almost as long after that and never had anything more than a stuffy occasional nose from them. I was thinking about getting shots for it. But another odd thing is I did allergy testing and it showed I'm just a little allergic to dogs and cats... weird..

The dr. told my girlfriend to go to the hospital if she ever uses it no matter what.

[Katybug]

misstraci - I have been receiving the shots since January. I only get one shot a week and we had to repeat the same dose a few times because the doc felt my localized reaction was enough to warrant a repeat dose instead of an increase. All of this is due to how allergic I appear to be when I am tested. I also tried allergy shots in high school and had a bad reaction that resulted in full body hives for 2 months (that was awful...lots of hydroxyzine and prednisone...I was like a puffy red zombie.) If I was less allergic, I would be getting two shots per week. So, only being on the fourth vile makes me behind the curve as allergy shots go, but, I'd rather go slow than end up with more problems and was quite clear with my doc on this point. I am taking 10 mg Hydroxyzine at bedtime and 300 mg Cimetidine 3x/day. I also additionally take a 25 mg benedryl at bedtime if I am nauseated as some of my nausea is allergy related (the rest is migraine related.) The only clinical symptoms I experienced from my environmental allergies were some nausea and skin hives and rashes which were frequent but not severe (with the exception of two weeks each year in spring when things start blooming). The skin rashes/hives are controlled and the nausea is on and off...of course how do you tell if it's the allergies or the migraines??? The doc actually made sure I was on the antihistamines for a couple of weeks before I started my shots due to the severity of my allergies based on the testing. I actually find it WEIRD that I test so allergic but don't really display any major allergy symptoms.

Rich - Funny you ask about when the allergies were worse because when I was a kid, I displayed terrible allergy symptoms...runny nose, eyes swelled shut from people cutting their grass, hives, itchy and sore throat. Now, I have very little clinical allergy symptoms but test highly allergic on skin tests. In fact, when they did my allergy skin tests, every one of them reacted severely within 5 seconds of injection...we never got to round two on any of the allergens.

[misstraci]

Rich- Thank you for explaining it to me and wow, I'm so glad you were there for your girlfriend to save her, that sounds very scary though!!! I'm sorry you guys had to go through that. Why exactly would a person with MCAD need the epi pen? That is weird about you and being allergic to the animals moreso now and the test still showing a little. i never even noticed before and honestly i don't have many "allergy" symptoms now like runny itchy nose/eyes etc. I took an allergy test because like you all know, i'm looking for anything that might be causing me to feel so terribly. So, to answer your question, no, i didn't have them before though, i don't think. but i tested positive so i'm doing 2 shots twice a week, just started them, so, we'll see if it helps.

Katy- I agree it's better to go slow than get those reactions like you did in high school, scary! Thanks for writing me back. I'm glad you and your doctor have you on the right dose and track now. Hopefully it continues to go well for the both of us.

[SpinnyC]

Hi I'm new here but just wanted to weigh in on the allergy epi-pen thing.

I never had allergies (that I was aware of) before my POTS symptoms started. When I was undiagnosed and doing the whole- go to any doctor that might have a clue thing, I went to an allergist because some of the symptoms I had included my skin getting very hot and red. I thought maybe all the dizziness, feeling nauseous and hot could be chalked up to an allergy I wasn't aware of.

The Dr. tested me for allergies and found a few- but said they weren't very severe. About a month after that appointment I wound up in the ER with an allergic reaction. Hives, facial swelling. And my asthma (which I already had) kicked in by the time I was being examined. The ER doc told me I needed to start carrying an epi-pen and pointed me in the direction of the 24hour pharmacy closest to the hospital.

After all that, I went for a follow-up with a cardiologist who said he suspected I had POTS and wanted to prescribe a BB. He was hesitant because I had asthma but ultimately decided to try me on a small dose because my high HR was restricting my activity so much. We went over my list of meds but I forgot about the epi-pen because it was new and I had never needed to use it.

When I picked up the script the paperwork mentioned something about blocking epinephrine in your system. When I saw epinephrine was mentioned I called the doc's office before starting the script just to be sure it was ok to take despite carrying an epi-pen. He called me back and told me not to take the BB. He said it could make the epi-pen not work as well. Everyone responds differently, but he wasn't comfortable with me going on the BB anymore. And that I would have to wait to see the POTS specialists he was sending me to for a med recommendation.

I was disappointed because the he seemed so sure that a BB would help me feel better! I do want to point out that I'm not sure if that's true of all BB's. Since there are a bunch out there it definitely could have been the specific one he was going to put me on- I'm not sure.

Incidentally when I saw the POTS specialists they put me on Midodrine- which when I looked it up, is listed in the same category as BB's under "monitor or modify rx" for possible epi-pen interactions. I guess they both constrict blood vessels so the Midodrine, Epi-pen together could cause a hypertension episode. Go figure- it seems like it's never easy when it comes to POTS! Heres the link to the Epi interaction info if anyone is interested- https://online.epocrates.com/u/1041760/Epipen/Drug+Interactions

But if I ever need the epi-pen I'm either on my way to the ER or calling 911 anyway (since that's what I was told to do if I used it). So... I guess the hospital could deal with a BP issue if one occurred- I hope! I do wonder/worry from time to time, when I've felt like I'm having an allergic reaction and needed to pop a benadryl, what exactly taking the epi-pen would do to me and the POTS symptoms. Hope to never find out!

[RichGotsPots]

Mast cell reactions are similar to anaphalaxis/allergic reactions. Mast cell reactions are strange. Basically its a mast cell having a reaction instead of a histamine having one. anyway they use practically the same meds to fight the reactions. It's possible my new pet allergies are mast cell reaction rather than histamine reactions, so that's why they dont register on the test. Because maybe I'm reacting to something chemically that's not on the test the inject... For example, I'm the only person I know who is allergic to newspaper... lol

[flower]

I am allergic to newspaper too. Get terrible sneezing attack, hissy breathing etc. only since the POTS got really bad.

[misstraci]

Thanks Rich! So, have you been tested for Mast Cell disorder? Allergic to newpaper? I've never heard of that.

Flower...... you too? this is so interesting.

I went today to the allergist to show them i could administer the shots myself and then from that point forward (until once a month for new strengths) I'd give them to myself. well, i got scared in the office and wasn't really doing it right. when i pulled the plunger back on one of them, it showed blood, which is a big no, no he said. The Dr. kept reiterating the anaphylaxis stuff. It's got me all freaked out and scared. I'm wondering if the possibility it'd help my POTS outweighs the anxiety its giving me. This is crazy!!

[RichGotsPots]

I haven't been tested yet, it's far off on my list of tests. Basically mast cell docs are even in shorter supply than pots docs.. Maybe I'll get my immunologist, who is cool, to test me one day soon..