Hospital...i Need Your Help On This One

[Jacquie802]

Hi guys,

I had quite an interesting night, so to say...I had an open MRI last night at 630..during the middle of the MRI I got very nauseas (worse than usual, prob the most nauseas I've ever felt) and my eyesight got very bluring, then my body jerked and my heart rate shot up very high...all while I was in the MRI...I kinda ignored the stuff thinking its just the POTS, but then when I was done with the MRI I had a rash all over my chest. The MRI tech said they've never heard of anyone or seen anyone with it, so they didnt think the rash was related to the MRI....About 10 minutes later I started getting really itchy and my chest felt heavy and the tachycardia kept coming off and on...I went to the hospital and the doc said it sounded like an allergic reaction to something...Still not sure what it could have been since I havent eaten anything new...I'm just curious if anyone has had anything similar happen to them...I'm pretty sure it wasn't nerves because I was fine through most of the MRI...I was given Benedryl which helped and an Epi-pen to take if I ever have the same thing....What are the experiences those of you on an Epi-pen have had?? Not quite sure what to do...Also, the last time I was at the dentist a few weeks ago I had a reaction to Navacaine, never had a prob with it before..My throat swelled up...Why am I all of a sudden getting all these crazy reactions??? Thanks for any help/advice, etc that can be offered.

Jacquie

[doctorguest]

Did you have IV contrast injected prior to experiencing a reaction?

[Jacquie802]

Hi,

I didn't have anything for the MRI...It was just so strange how sick I got...Do you have any ideas? Thanks!

Jacquie

[cardiactec]

sometimes the cleaning solutions they use on medical equipment is very potent .....just a very wild guess here, but maybe they had disinfected the machine/the bed you were on prior to your test, with some potent type of chemical and caused the reaction you described....

?

[doctorguest]

Reactions are often separated into "allergic" vs. "non-allergic" categories. Since you have not received any contrast, which would be an obvious source of allergens, then one should look for possible contact materials that may have touched your skin on the chest and cause hives. Did you have a rash on your chest only? Or did you also have rash on your face, arms, legs? What type of rash was it? Were these raised, itchy lesions? Or was it more like a flush with continuous redness on the skin? Cardiactec's idea about possible contact agents - whether from cleaning solutions used for MR table or on the hospital gown itself - is reasonable.

Another possibility is non-allergic reaction. Do you have a mast cell activation disorder? With this type of disorder, histamine release from mast cells can be precipitated by a variety of circumstances, including emotional stress. This is not the same as being caused by anxiety or "nervous reaction", but rather, emotional stimuli can trigger a response that is similar to what people call "allergic reaction", despite an absence of a specific causative allergen. I notice that you said that you had an open MRI. Are you claustrophobic and could not have a closed MRI? Also, have you had similar reactions under other circumstances, such as other types of emotional or physical stressors, eating spicy food or chocolate or drinking wine? These can often precipitate a reaction due to mast cell activation disorder, which is sometimes associated with autonomic dysfunction. Hope you are feeling better,

doctorguest

[bren62]

Were you in contact with latex during your MRI? Most dentist wear gloves and maybe you are developing a reaction to latex. It's just a thought and something to watch for.

[mkoven]

I've had some strange anaplylactic-seeming allergic reactions over the years and have epipens that I carry with me. One bad one was after an mri, but I did get a contrast agent.It was one I'd gotten before, but not in such a large amount, injected very fast and while it was super cold. Soon after I got itchy everywhere. I didn't call out from the mri tube, because I thought it was just itching, and knew it would mean the test would ahve to be redone. (mistake). I turned red and faint after and had to stay overnight in the hospital with benadryl and steroids.

My first reaction like this happened without a clear inciting agent. I had just thrown up. Right after I vomited, I started itching violently from head-to-toe, turned bright red, and started gasping for air. I was nineteen at the time and had no idea what was going on or how dangerous it was. It did pass. It was almost like my body's reaction to throwing up was to have an allergic freak out.

I've tested negative for mastocytosis, but have been told I may have some strange mast-cell activation problem. The neurocardiogenic syncope and the allergies are a confusing combo, as my bp drops and I want to faint, and sometimes it seems triggered by allergies and sometimes not.

Maybe a trip to an allergist would make sense?

Last summer I had a weird allergic and ncs meltdown. We never really got to understanding the allergic part-- as I do have specific allergies with a high total IGE, postive rast test to a bunch of environmental allergens, but sometimes just get itchy,red all over, and faint for no clear reason. My serum tryptase was always normal. Sometimes it almost seems like when my bp drops too much from ncs, my body's response is to get itchy (??!??)

I am on a regular regime of antihistamines and have an epipen that I carry with me. I tolerate the antihistamines and have never used the epipen. Good peace of mind, though.

[Jacquie802]

Hi guys,

Thank you all for taking the time to reply. Last night I had another allergic reaction and I have to see my doctor today. I'll reply to your posts a bit later, as I am getting very itchy again. Just curious if anyone knows how long it would take to get an allergy testing...If I am getting this everyday would they take me right in??

Thanks,

Jacquie

[mkoven]

I think you can get rast testing (sp.) through a blood test. I can't do skin tests because I'm always on antihistamines and my reactions are too violent.

[Rachel]

Hi Jacquie,

That is really strange that you're still having a reaction. I thought Cardiactec's theory about the cleaning chemicals was a good one. But I wouldn't think that would last this long. Hmmmmmm.

Could it be an allergy to a new med? Did you start any new medications in the last couple of weeks?

I don't know how long it would take to get an allergy test. But if your doctor is concerned about your reaction I would think that he should be able to push the testing through on high priority.

I hope that your appointment goes well and that you can get everything figured out. Let us know what you find out.

Rachel

[Tessa]

I just could not read this thread without telling you that I had a reaction to Novocaine some years ago... But that was different to yours as my throat did not swell... (I had a bad reaction, among other symptoms, a very low bp and I also fainted and it was not caused by stress)... You can find the information of my reaction here:

Topic 8249 Dinet

I agree that you should try an allergy test (but you will have to explain what you have done since you got the suspected allergic reaction, as they will have several allergens).

Hope you feel better soon,

Take care,

Tessa

[doctorguest]

Jacquie,

I hope your doctor's appointment is productive. Usually an allergist would wait until your system calms down before doing a full scale allergy testing with multiple allergens administered. In what context did your second reaction occur? In a situation where recurrent episodes of some type of reaction take place, a full allergy work up is necessary. In terms of treatment, you doctor will probably choose among benedryl, allegra, zyrtec or claritin to address your symptoms.

[Maxine]

That has to be pretty frustrating-----I hope you find out what the cause is. I'm still waiting to see an allergist because of reactions to lidocaine--(without EPI). My EDS doctor said it was something that needs to be taken seriously because I could be having a adverse or toxic reaction due to systematic circulation. This is why I'm afraid to have ANYTHING injected into me.

I doubt it's allergies for me----but the oral surgeon wants to be sure---then we will take it from there.

POTS/ANS problems can cause all kinds of weird reactions-------not fun..........

I hope your feeling better soon----------I'll say a little prayer---

Maxine :0)

[juliegee]

Oh Jacquie-

I'm sorry you're going through this! I am quite interested in this thread as I suspect that I do have mast cell activation disorder and I suspect it is the cause of my POTS, chronic nausea, headaches, and fatigue. (I know you deal with chronic nausea, too.) I have had weird allergic reactions with hives ever since my autonomic problems have arisen.

I've done the anaphylaxis series of allergy testing. I was allergic to nothing. I've had such severe reactions that I have used the epi-pen. I was very frightened as my heart was already beating so incredibly fast (I was close to passing out.) Epinephrine could horribly worsen tachycardia. Luckily, the epi-pen had the opposite reaction and actually STOPPED the horrible tachy. I immediately felt better, however the effect was relatively short lasting. I headed to the ER where my symptoms returned. I should have been put on an epi drip, but instead the ER doc insisted I was having a panic attack as I was panting (due to the fast HR.) What a horrible memory. Thankfully, I survived and have learned to manage all of this.

I've recently had a horrible bout with hives all over my face, neck and a few on my trunk. I've been taking 150mg of ranitidine (an H1 blocker) in the AM & PM. I also take 10mg zyrtec and 10mg singulair daily with 25mg benadryl at night. On this regimen, my chronic nausea, headaches and fatigue are vastly improved. It is like a miracle for me! (I no longer need daily eyrthromycin as a prokinetic, nor zofran for nausea.) I still have POTS, but my HR and BP are much more stable. My allergist says that mast cells and nerve cells are very highly connected. Taking care of the hives/ allergic reaction has helped me in so many other ways.

Jacquie, definately look into mast cell activation disorder. I also have to carefully watch my stress and activity level to ensure that I'm not overdoing it. That causes the hives to flare with all the rest of those horrible symptoms. Best of luck to you, Jacquie. Keep us posted on your progress.

Hugs-

Julie

[Jacquie802]

Hi guys,

I cannot thank you all enough for your replies...

I went to my PCP today and he called in an RX for Allegra, of course my insurance won't cover it! So, my doc needs to find another med that will be covered...He said that if I am still getting the reactions by Monday to call and he is going to get me in to see an allergist. I am definately having a weird reaction. I'll be fine for a little bit then I get severe itching and my throat feels tight, but not the tight feeling to take the Epi-Pen.

I still take the benadryl a few times a day, but I can only tolerate one 25 mg pill and I still deal with the dizziness with that dose. The 50 mg is what helps the most, but the dizziness and fatigue are soo over whelming. I cannot afford to buy the Clariten that is over the counter (or is it Clarinex?) or any of the other allergy drugs since I am still waiting for disability backpay. Even if I could at the moment it is not something that I would be able to keep up with since I will be on quite a fixed income.

A while back I did see an Endo for ideopathic flushing and sweats, but nothing was found. I am not sure if she did check for a Mast Cell Disorder. I know I was tested for Pheomycytoma (not sure of the exact spelling)...I am interested in whether I could have a Mast Cell disorder, it would almost explain the horrible nausea I face alot, as well as the itching and flushing as well...

Julie-I also deal with the horrible fatigue, nausea, and for the past year and a half I have been having severe headaches that come off and on. The headaches was the reason I was having the MRI. Do you know what type of testing is done to rule out or diagnose a Mast Cell Disorder? My doc asked if the ER doc gave me an RX for Epi-Pen and I told him I had been given an RX for it, he was a little skittish about me using one due to the arrhythmias/tachycardia I get, but obv. I'd need to use it if I got a severe enough reaction that affected my throat, etc. My hives seem to affect just my upper body for the most part. I'll get some itching on my legs, but nothing quite as severe at my upper body. Would an allergist be able to diagnose a Mast Cell disorder??? If not, what type of doctor is knowledgable about this??

Maxine-Have you ever beeen tested for Mast Cell disorders?? I asked my dentist what he could use besides Novacaine and he said there were a few other options, I'm not sure what, but he said he'd like me to be tested for that allergy...

Doctorguest-I am getting the same type of reaction as the first time, but not nearly as many hives/ or redness. The itching is alot worse however, and my throat feels tight at times but not too bad to have to use the Epi-Pen.

Rachel/Cardiactech-I actually thought I was having a reaction to something from the MRI but I never did come in contact with the machine or any type of robe, etc. since I got to leave on my regular clothes. I suppose maybe I could have some type of reaction still, but I definately would hope that it wouldnt last this long!

Bren62- I don't remember if the doc was wearing any latex gloves or if they were another type? Next time I go, if I am brave enough to go back, I'll have to ask.

Tessa- My reaction was only the swelling of my throat, nothing else...thank goodness!! What does the dentist use on you now??

Mkoven- If you get the blood test for allergies would you have to be having a reaction at the time of the blood draw?? Just curious because I am new to this whole allergy thing!

Sorry this got to being so long! Thanks again for all your replies!

Jacquie

[mkoven]

I hope you can get some answers soon.

It is my understanding that mast cell activation disorders are diagnosed clinically... I could be wrong. And I think the treatment is antihistamines with easy access to epipens-- as well as avoiding triggers. There are also mast-cell stabilizers, like gastro-crom and nasal-crom.

I'm really interested in this link between pots and allergic-type responses-- as they seem very connected in my case.

I think you can have the rast blood testing at any time. They mix your blood with the allergen to see if it reacts. I think there's some controversy over which is better-- skin or blood tests. But blood tests are safer.

When I went through my allergic meltdown last summer, they put me on prednisone for 6 wks. That was awful-- so I'd say if you can steer clear of steroids, you're probably better off. I saw a high-powered allergist in Chicago who got me off prednisone, replacing it with very high doses of allegra, zyrtec, and singulair, with benadryl as needed. She thought that was safer than steroids. For a couple months I was on 20mgs of zyrtec, plus 360 allegra, plus singulair daily, plus 25-50 benadryl as needed. It helped. But it took months until I felt recovered from the prednisone taper.

i think doctorguest mentioned that sometimes these reactions are allergic and sometimes not-- or IGE mediated. They can also see how much IGe you have circulating that gives some sense of how allergic you are in general.

I also have something called dermatographism-- if I scratch my skin or even apply pressure, I get a bright red, itchy hive in the shape of whatever I came into contact with. When my reactions are over the top, it's pretty impressive, and I can even feel my throat tighten. Even a bp cuff will make me break out when things are bad.

We still don't get what happened to me last summer. For 2 months I seemed to be allergic to almost everything I ate-- except rice and chicken. That gradually abated. Though I still have a number of food allergies.

Lucky me, I seem to have something called "oral allergy syndrome," where my body reacts to certain fruits and vegetables because it confuses them with pollen. So I still can't eat celery, strawberries, raspberries, mango, eggplant, avocado, and probably some others.

We're still not sure what role my environmental allergies play, but we've since gotten into heavy-duty allergy busting. We have hepa filters in all the rooms, an extra-thorough filter on our hvac. When things are bad, I wear a dust/pollen mask, which seems to help.

[MightyMouse]

Michele (mkoven), all I can say is "me too"-- you and I have chatted before about our clinical similarities (EDS III and major allergic issues, among other things).

Nina

[Jacquie802]

Hi Guys,

The allergic reaction seems to have settled down. Just curious if I should still look into getting tested by an allergist. We still do not know what caused it.

Thanks,

Jacquie

[MightyMouse]

At a bare minimum, you should probably have a consult with an allergy/immunology doc just to discuss what happened to you and have him/her decide w/ you if testing needed or even useful at this point.

Nina