Anaphylaxis:

[LindaJoy]

Hi, everyone,

Long time, I know. I had my heart ablation nearly a month ago. Went very well. Was in the procedure for five hours. Had two pathways and lots of tach potentials, but my doctor thinks he got everything sorted out. I do feel better.

Still having GI problems, though. Need your help. Anyone who has experienced anaphylaxis, what were your symptoms? I'm going into something after I eat. My allergist thinks I'm having layngospasm due to reflux, which would go along with laryngopharyngeal feflux, of which I think I may have. But, many of my symptoms also sound like anaphylaxis, although my blood pressure doesn't drop, it rises, and my oxygen level stays good at above 97% (I have a portable pulse / ox). Could anyone who knows about anaphylaxis help me? I'm at risk for it seeing as I experienced severe flushing, hives, wheezing, asthma, etc. as a child, due to food allergies, and those allergies are back now, and then some.

Thanks. I look forward to any responses.

Linda

[JenniferInOhio]

I have anaphylaxsis due to food allergies (nuts, shellfish).

Starts out as sore throat or hurt in mouth. Stomach hurting, hives all over, wheezing, difficulty swallowing.

Scary. Are you eating foods that are causing the anaphylaxsis?

[LindaJoy]

Hi, Jennifer,

According to my allergist, the foods I'm now eating are ones that are safe for me, but I'm getting sick after I eat them. This only recently started since being on aspirine and blood thinners after my heart ablation. I'm confused because, like I said, after I eat, I feel like my throat is tight and I can't breathe, yet my oxygen level is fine, and my bp goes up, not down. I don't get hives or itching, and I don't turn red, yet my face feels very warm. I don't swell anywhere, but I do get hoarse and have difficulty swallowing, breathing and have the throat tightness. I also get nasal congestion and runny nose, plus fullness in my ears, all that come with reflux, too, believe it or not, of which I have. I start to feel weak and lightheaded, but I also get very nervous. I'm very scared, as I can't take Benadryl anymore.

Thanks for your reply.

Linda

[flop]

People having severe allergic reactions often get an urticarial rash (hives) swelling or angio-oedema (which can include lips, eyelids, tongue, throat), asthma / wheezing with severe shortness of breath.

For the diagnosis of anaphylactic shock your blood pressure has to drop but that is a very late sign of a severe allergic reaction.

Are you getting your allergy symptoms at the same time as the throat symptoms?

Ah - have just seen your second post, if this has all started since you were put on aspirin that may be the cause. 10% of patients with asthma are sensitive/allergic to aspirin and other NSAIDs.

Did the doctors explain why you needed aspirin and "blood thinners" after your ablation? By blood thinners do you mean you taking warfarin / coumadin or something else?

I would talk to your doctors asap about these symptoms to see if you can work out what the problem is. Anyone who seems to be having a severe allergic reaction especially if there is breathing difficulty should call for an emergency ambulance immediately.

Hope you get some answers and feel a bit better soon,

Flop

[hannahsmom03]

Hi Linda,

I also have this problem, and am feeling like my throat is tight and closing in now. I was just about to post a question about this. If anyone experiences this feeling alot ( hard to swallow, tightness in throat , feels hard to breathe, tongue feels like its thick) it is really scary and I am wondering if this is just part of the disorder. I also have food allergies ( peanuts, shellfish, and tree nuts) it is really uncomfortable to feel this way and not be able to do anything. I wish I had more positive things to say besides I feel this way to . I hope this gets better for you and for all of us.

Take Care

Erica

[LindaJoy]

Thanks, everyone, for your replies. I get the symptoms quite a bit, but severely after I eat, especially just since my bout with aspirin and coumadin. I had to take those for blood clots my home hospital said I had, but didn't. That's a story in itself. In a nutshell, three days after my ablation, I was feeling poorly, so went to my hospital. They did a cat scan on my lungs and said I had multiple pe's, plus a clot in my thigh. Was put in CCU for a week. THree days after going home, went back to same hospital and was told I had pneumonia. Long story short, transferred to Ohio State. Did not have Any clots and no pneumonia. By this time, I had been on aspirin and coumadin for over a week (Lovenox for a week, too), and was started on Zoloft. Zoloft tore up my stomach. Now, every time I eat, I get this throat tightening feeling. It gets so bad I feel like I can't breathe. Tonight's episode scared me to death, it was so bad.

But, in between eating and "bouts," my throat feels burned, as does my entire mouth. I have heartburn and am hoarse. I have a lot of the symptoms of laryngopharyngeal reflux, which my allergist thinks I am having the laryngospasms from this after I eat. That's all fine and dandy, but tonight, after I ate and I felt like I couldn't breathe, I was terrified. I know I went into major anxiety. Who wouldn't???!!

It sounds stupid, I know, but I can't tell if I'm in anaphylaxis or just having severe LPR symptoms. My allergist says since my oxygen level stays good, my bp doesn't drop and I don't develop hives, it's not anaphylaxis. Any comments?

Thanks, friends.

Linda

[flop]

Hi Linda, I can certainly understand why these horrible throat symptoms would get you scared and panicky. It sounds like you have discussed this in detail with your allergist so I would follow his advice but be sure to report any new symptoms. Have you tried any of the liquid reflux treatments? - in the UK Gaviscon is quite popular as it sort of coats the throat and gullet and eases the burning pain (that is what others have reported - have never taken it myself).

Are you still taking the aspirin and coumadin (it is not often that both are prescribed together)? Hopefully if DVT and PE were ruled out at the second hospital you don't need them anymore?

Flop

[LindaJoy]

Flop,

Nope, no longer on the aspirin or coumadin. OSU Medical Center took me off of them right away, after their scans showed no clots or even any evidence of previous clots (scarring, debris).

I take Mylanta, which helps ever so slightly, in-between meals, but nothing has touched the terrible reactions I have right after I eat, and they seem to be getting worse. I'm terrified to eat now.

So, can anyone tell me, is this true? As long as my oxygen level stays good (mine normally runs above 97%) and my bp doesn't drop, and I have no hives or red skin, I'm good to go as far as anaphylaxis is concerned?

I'm sorry to be such a dope where this is concerned, but I just can't read my body anymore.

Thanks.

Linda

[Gena]

Linda Joy,

I had your exact same symptoms after eating and went to many doctors about it. One neuro I saw said I was just overly anxious and prescribed Xanax. I wanted to scream at him. This was about 6 years ago. Many many doctors later, I was finally dx'd with celiac disease (gluten intolerance). When I went on a gluten free diet, these symptoms went away entirely.

With you having so many food allergies and POTS, it's a possibility you might have celiac too, which is an autoimmune disorder. It can be triggered later in life by stress, trauma, surgery, etc. (mine was triggered by major stress). You may want to ask your doctor to do a blood test (it tests for gliadin anitbodies). This would help determine if gluten might be the culprit. Normally food allergy testing would not reveal if you had an intolerance to gluten.

Best wishes,

gena

[LindaJoy]

Hi, Gena,

Thanks for the reply. I'm sorry you have to deal with celiac. I was worked up for it three different times because many docs thought that might be my problem, and each time, my results were negative (I also in-take no gluten since I'm allergic to wheat and the other grains, anyway).

But, thanks for putting your thinking cap on. I really appreciate it.

Take care and good luck to you.

Linda

[flop]

Hi Linda, I don't think that anyone can advise you over the internet about whether you should call an ambulance. Certainly if you had low sats, low BP, hives / rash / swollen lips etc get help right away. Only a medical professional seeing you at the time of the symptoms could say if it wasn't an allergic reaction. It sounds like these episodes have settled previously but your own doctor might be able to advise when it is ok for you to deal with this at home. If your symptoms are getting worse and you are in doubt I'd go to the ER.

Take care,

Flop

[MightyMouse]

Linda, I am so GLAD to see your name--I recall cooresponding with your husband a while ago and have wondered how you're doing.

I have been in anaphylaxis a number of times; in all times, I developed itching first and/or became very sick to my stomach and dizzy and then lost my vision but could still hear what was going on around me. My blood pressure did drop suddenly too, hence the dizziness. During one episode, it was a great effort to breath and I started to swell up (i'd been inadvertantly given an IV antibiotic that I was allergic to), then drifted in and out of consciouness. My heart rate soared as my bp dropped--and then the big doses of benedryl, epinephirine and steroids kicked in.

I know Michele Koven has been through a great deal with allergic reactions to foods, so perhaps she can give you some of her insights and you two can compare notes.

Nina

[mkoven]

I've had some really strange allergic responses that have headed in the anaphlactic direction. I've posted before about this, as it seems that sometimes my pots/ncs and allergies are closely linked. I also think perimenopausal hormones are a big factor, though no doc could really link. I just know that my symptoms were/are MUCH worse premenstrually.

I went through a period of several months last year when I couldn't eat much of anything but chicken and rice before itching everywhere and having my throat tighten and wanting to faint. We never really got to the bottom of it. I went on prednisone. I was then switched to large amounts of antihistamines that I still take. I have high IGE, oral allergy syndrome, and positive rast tests to a number of envinornmental allergens. It quieted down last year around the time the weather cooled down. And I've posted recently that I've been getting more post-eating episodes now that it's spring again. Part of me thinks that when my environmental allergies are worse, I then become hyperreactive to everything.

I wish I had some more insight. It definitely seems to me that my pots/ncs, hormones, and generally allergic nature feed into each other and exacerbate each other. I'm hoping I can avoid a repeat of last year. there are various pieces to the puzzle that haven't been put togehter.

In the interim, I take my antihistamines, and benadryl prn. I also carry epipens, but haven't used.

Hope you get some answers.

Michele

[dizzygirl]

jeepers linda you have been and are going thru alot!

i just wanted to say that im thinking of you and hopeing that you start feeling better soon

hugs

linda

[LindaJoy]

Thanks, everyone. Here are a couple of other questions.

When you say that you begin to itch, not to sound stupid, but where do you itch? Is it all over, or your head, or your thighs specifically? Do you itch at any other time ? Like right now, my head is itching, as are my thighs. This all started last night, after the throat scare. I haven't eaten since.

I have high IgE, as well, over 1500. All my allergist wants me on is Zyrtec, which I have yet to begin as I'm afraid to try new meds. I took Allegra last year. It didn't do a thing, and I was on 360 mg. daily. I just don't feel like we're doing enough for my severe allergies, especially with an IgE so high.

About Benadryl. The last few times they've given it to me in the hospitals, I've had a bad reaction to it: dizzy, faint-out-of-it feeling, bp goes really high, severe tachycardia, threw over 40 PVC's in a row. It was through the IV, and the second time was just a couple of weeks ago. That was the really bad reaction with all the PVC's. Anyway, it also burnt my vein. Do you think I would still be safe on the pill form of it? If I can't take Benadryl, what can I take instead? It seems to be the antihistamine of choice during allergic episodes.

I felt the best that I have in over a year when I was on Decadron (steroid) a few months ago. I was only on it a week because my allergist said she doesn't want me on steroids for too long. I hated to go off of it. She put me on it to just help me get back into eating.

Linda

[cmtaylor5]

Hi, LindaJoy,

So sorry for all the trouble you are having. Although I want to respond to your questions, I don't want anything I write to be interpreted as advice because after reading all these posts, it seems like allergic reactions really vary and your doctor should be involved in any decisions you make about treatment. Having said that, I know it helps when others have similar stories.

I had my first full blown anaphylactic reaction when I was 3, and I had at least 2-3 per year after that until my early 20's. I have very specific food allergies, but the reactions always began the same way. No matter what food it was, I get a very strange taste in my mouth. I'm allergic to goat's and sheep's milk, and I get the same taste in my mouth whether it was goat's milk fudge, or romano cheese in spaghetti sauce. I don't exactly know how to describe the taste, but it is not pleasant.

The taste would immediately be followed by the angioedema. For me, that means my lips, eyelids, ears, armpits, behind my knees, and throat would swell. In about 15 minutes, I would not be recognizable. The itching starts a few minutes after the swelling. As a kid, my armpits would usually itch first, then I would get hives and itching everywhere, especially my trunk, neck around my hairline, and my thighs. I learned not to scratch, because it seems to make thing worse.

I would also have severe wheezing. My fingernails would always be dusky, so I assume that my oxygen level wasn't great. I'm not sure about my blood pressure. I was too young to really pay attention. I always received alternating injections of benadryl and epi in my hips at the ER. I would usually be given a dose pack of decadron to take home, but I don't remember using it.

As for the benadryl, I definitely wouldn't take it again without talking with your doctor, but I had a horrible reaction with it the only time I had it IV. The nurse called it "a flash". I had tachy and shortness of breath and felt dizzy and disoriented. I have continued to take benadryl for the past 20 years in every form but directly into a vein and have never had a problem again.

I'm now 43, and react much less strongly to foods I'm allergic to. Instead of the full blown reaction, usually only my eyelids swell and I get a little wheezy and my throat feels thick. I also have times when I eat something and have just the thick feeling throat, the hoarseness, and a little itching. I always assume that it's an allergy, and take benadryl, but I don't go to the ER. I also have reflux disease, though, but it never occurred to me that it could be the cause.

The only other thing I can think of to say to you is that througout my life, my allergies have changed. Twice in my life following a surgery, and once after a medical procedure, I had new and different allergies/types of reactions. They eventually calmed down. After one of my pregnancies, I repeatedly had the allergic type feelings that you are describing. I went to my allergist and I reacted to everything but two foods during my skin testing. I tried to avoid those things I reacted to most strongly and after awhile, my sensitivities to them all died down.

Maybe you should try another round of allergy testing and see what comes up. The other suggestion I have would be to eat something that has caused you a problem recently, while at the allergist's office and let your doctor monitor your response. Best of luck, I know that it can be really scary.

Carolyn

[LindaJoy]

Oh, one more question: When you say that the bp drops, how low? Mine runs so low now that docs would look at my "normal bp" and scream anaphylaxis.

I normally run 90's over 60's. Now, yesterday, after I ate--all I had was some watermelon and rice--I got very cold and shaky and my bp went to 80's over 50's (the bottom went as low as 49 at one point).

Thanks.

Linda

[cmtaylor5]

Hi,

I can't answer your BP question, but I can tell you that watermelon, honeydew melon, and canteloupe very commonly cause food allergies. Watermelon can cross react with pollen allergies, especially grass, I think. Google "watermelon allergy" and I'm sure you'll find it is very common.

Carolyn

[MightyMouse]

For me, the itching always starts the same way...first the undersides of my forearms and crease of my elbows, my ribs and underarms and behind my knees... it then spreads all over and if I'm quick enough, I can slow it down with benedryl orally before my face and neck get swollen and itchy. I respond more slowly than it sounds like Carolyn and Michele do. When I used to get allergy shots, my doc would have me wait in his office a full hour before I was allowed to leave--and the 2x I went into shock in his office, I was actually done with my hour and paying my bill.

I think I'm slower to respond to allergens partially from my daily meds I've been on for years and years; zyrtec, singulair (both for as long as they've been on the market), I was on zantac (which is a type of histamine blocker too) but now on a different class of drug (Nexium and before that, Prilosec--proton pump inhibitors), and benedryl EVERY DAY. I also take Advair some of the year--mostly Fall and Winter.

I developed asthma a few years ago which is now part of a reaction for me, but other than an allergic reaction, doesn't seem to bother me too much.

[mkoven]

Instead of benadryl, some people take vistaril. Could you try oral vistaril in a doctor's office to see how you react? I really like having something on hand to thwart a reaction.

I was also reluctant to try zyrtec, but I gotta say that it helps. Really no side effects for me.

I would limit steroids, like decadron. I was on prednisone for 6 weeks last year while we were trying to figure out what was going on, and it really messed me up for months. Sometimes there is no choice, but it made my pots/ncs MUCH worse while I weaned.

When I am in hyperallergic mode, stuff I"m normally only mildly allergic to can really set me off. For example, I'm normally only a little allergic to dust and mold. But in the middle of all these other reactions, my body would flip out if I went in a slightly dusty room. We then had our apartment intensely cleaned, got dust covers for pillows/mattress, hepa air cleaners, washed bed clothes in hot water weekly. When things were bad, I would also wear one of those dust masks. We also got an allergy-grade filter for out hvac unit. These things all seemed to calm things down a little. I also got in the habit of showering before bed to wash away any pollen in my hair.

I"m not an allergist, but probably anything you can do to reduce your exposure to things you are allergic to-- food and not-- the better.

[Tessa]

Hi, Gena,

Thanks for the reply. I'm sorry you have to deal with celiac. I was worked up for it three different times because many docs thought that might be my problem, and each time, my results were negative (I also in-take no gluten since I'm allergic to wheat and the other grains, anyway).

But, thanks for putting your thinking cap on. I really appreciate it.

Take care and good luck to you.

Linda

Hi Linda,

Are you sure of not having a gluten sensitivity? Blood and Biopsy tests are not accurated.

I suggest you to check the following website:

Enterolab

Take care,

Love,

Tessa

[Sunfish]

linda -

it is good to "see" you, though i'm sorry things have continued to be rough.

blood & biopsy results are in fact quite accurate for actual celiac disease, the most severe type of gluten intolerance. some people find that they are sensitive/ intolerant to gluten without having celiac, but the best way to figure this out is probably by eliminating the "suspected" problem food(s) from the diet for a period of time. it sounds like linda may have already done this?

personally i have some reservations about a private lab charges a decent amount of money for testing that they have created independently. there may be nothing wrong with it, it just doesn't seem particularly necessary for the plethora of instances they recommend it for on their website...

just my two cents...

melissa

[MightyMouse]

Also, if you've not eaten a great deal of gluten across a long period of time, the blood and biopsy may come up negative. However, if you're regularly eating things like bread, cereal and pasta, you'll likely come up positive. I do have celiac but came up negative on testing because I'd been gluten free for quite a number of years prior to my GI testing for celiac. I was supposed to stay on gluten for a month prior to both blood and biopsy, but could only tolerate a few days. My GI doc told me my exposure was too short to come up positive on the tests.

You could try an allergy elimination diet--something you should talk to your doctor about. I've done it and it's not easy; it was upon the recommedation of my allergiest--I lived on unseasoned food like pears, rice and turkey (steamed, broiled, baked or poached) for a few weeks before we tried introducing items one by one in large quantity, with several days inbetween to clear my system of the most recent challenge.

Nina