Mast Cell Disorders Forum - I need your expert advice!

PamH

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I need your expert advice!
04/06/12 at 13:35:04

First of all I have considered myself a shocker. When I have symptoms they start with my eyes and feet itching, hives and my throat swelling.
Today I had something strange happen that has never happend to me before.
We went to eat at a Japanese Steak House. I did fine through dinner. I ate broth, salad, grilled chicken and fried rice with onions. About 20 mins. after dinner I suddenly felt like I was going to fall over. Like I needed to lay down RIGHT NOW. I was slightly shakey.
Now I thought this was strange...I felt like something was really not right, but I had no itching and no swelling of my throat. I also had NO trouble breathing.
I did take my bp and it got down around 104/63. I took an atarax. Had diareahha. Then went to sleep for awhile.
I do know NOW that the teriaki sauce most likely had some triggers in it.

How do I know if I was "shocking" or just having a strange reaction?
This scares me because it happend so fast once it started.
Any advice would be greatly appreciated.
Pam

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Pam

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Starflower

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Re: I need your expert advice!
Reply #1 - 04/06/12 at 16:10:44

Clearly, you were having a reaction. It doesn't really matter what you call it... what matters is how you deal with it. My best friend in that kind of situation is liquid Benadryl (50mg). It works really fast, regardless of what kind of symptoms I'm having. If that doesn't work (or isn't helping enough), my back-up plan is an EpiPen.

Attacks don't always work the same way every time! I used to have a lot of hives... now I hardly ever get them. On the other hand, when I first started "shocking" I never had respiratory symptoms. Three years later, there are some triggers... latex balloons, silicone spray, etc... that will give me scary respiratory reactions even without the "normal" anaphylactic symptoms like hives, nausea, etc...

I've experienced that "I need to lay down NOW" feeling many times. Regardless of what the trigger was (in a Japanese restaurant, my first guess would be contamination with seafood), you were smart to take it seriously and to give yourself the rest you needed.

Mast cell disorders are WEIRD.

Heather

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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: I need your expert advice! Reply #2 - 04/06/12 at 16:22:51 I agree with Heather. I haven't ventured into a restaurant since my reactions started. Am trying to sort things out with home cooked foods without preservatives etc, but hope to get back to eating out eventually!
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Avonlea

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Re: I need your expert advice!
Reply #3 - 04/06/12 at 16:24:34

Hi - I have shocked to rice, and a main feature of it is uncontrollable shaking. It certainly sounds like you shocked from the meal. Soy sauce is a common trigger and you were exposed to several others - along with heat from the grill - like an additive to the broth or salad dressing or even seafood residue from the grill. In the weeks leading up to my first anaphylaxis (I had 2 two days in a row) I turned red and my abdomen swelled after eating a salad in a Japanese restaurant.

Also, there is recent reporting that rice, particularly brown rice or its syrup, absorbs a lot of arsenic. I would like to get tested for that!

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: I need your expert advice! Reply #4 - 04/06/12 at 18:22:38 Where does the rice come in contact with arsenic? It's a staple in my diet. Arsenic isn't an ingredient I've craved, that's for sure! It might have been MSG. It occurs naturally in soy sauce. Also, soy sauce is fermented, a no-no in a low histamine diet.
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Doozlygirl

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Re: I need your expert advice!
Reply #5 - 04/06/12 at 18:50:45

Pam,
You basically described my most debilitating series of symptoms -- feeling you have to lay down NOW, shaky and low BP. My lowest BP (that I caught) was 60/40, with a HR in the 40s. I also have facial flushing, which looks like sunburn, sometimes blotching on my neck, as well as severe cognition issues and blurry vision, which come on very quickly and I then sleep for hours. I can't be awakened during this time.

Symptoms in two or more organs = anaphylaxis. Flushing or hives and respiratory or angioedema is one mechanism. Flushinhg or hives and Low BP is another mechanism.

My first recongized anaphylactic reactions (full blown with ambulance ride) tipped my allergist off that I react to MSG. I have learned how to avoid MSG, but still get the low BP events.

I found this in my files regarding Japanese food: Wasabi sauces and flavours, e.g. wasabi flavoured peas, generally contain artificial colours. MSG is commonly used in Japanese food for flavour. Soy sauce is high in natural glutamates even when all natural. Miso soup is high in amines and natural glutamates. Japanese foods such as soba – traditionally buckwheat noodles – and tempura batter – traditionally rice flour – now often contain wheat. Sushi rolls are made with rice vinegar which would contain amines and nori seaweed is listed as very high (salicylates, amines, glutamates).

Does any of this sound familiar?

Lyn

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: I need your expert advice! Reply #6 - 04/07/12 at 05:55:20 Lyn, Are you able to take your meds when your BP and heart rate are that low?! Does your doctor think you should be at an ER? Your sleep sounds a lot like syncope to me. Are you able to take meds before you fall "asleep." What do you think?
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PamH

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Re: I need your expert advice!
Reply #7 - 04/08/12 at 10:57:34

Just wanted to thank everyone! This is starting to driving me crazy....I'm not even sure what to eat anymore. I ate there out of ignorace now I know that I shouldn't I wont.
I have been feeling very frustrated lately. I feel like the only thing I can eat safely is steak and chicken and green beans. Seems like no matter how hard I try to stay away from things, something else gives me a reaction. Shocked

I have read and tried to follow all these diets, but sometimes there seems to be no rhyme or reason.
Is anyone on this formum on Effexor. I am on a very low dose but feel it needs to be raised. Does any one know of any reason why I shouldn't take effexor, speak now or forever hold your peace...hahaha no really if there is some reason I shouldn't take this let me know. I used to take it before I became ill. It is a bear to stop taking but it did help when I was on it. I couldn't tollerate Wellbutrn. I also took that fine before I was ill.
OK just throwing that out there.
Thanks, Pam

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Pam

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PJP123

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Re: I need your expert advice!
Reply #8 - 04/08/12 at 12:54:06

Pam

Effexor has 913 Drug Interactions. You need to check out everything you are taking and see if there's a reaction. I was taking Amlodipine Bensylate for high blood pressure and ate Choc. Chip Teddy Grahams and my mouth got sores and had trouble swallowing. It was an ingredient in the darn cookies interacted the the blood pressure med. I was so sick I even went to the doc who prescribed it and showed him my mouth and tongue and he stuck his tongue out to show me his tongue and said look my tongue looks exactly the same. I couldn't believe him. I told him that it happed within minutes of eating the cookies and he made me believe that once again I was out of my mind. This was before I knew about Mast Cell Activation.

Pam

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Starflower

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Re: I need your expert advice!
Reply #9 - 04/08/12 at 13:16:52

Some people with mast cell disorders are not able to tolerate SSRIs, but some can. Personally, I take a low dose of Zoloft (25mg). It definitely helps me feel more emotionally stable

Depression can be a symptom of mast cell disorders... not just because it's a pain in the butt to deal with, but because the mast cell mediators screw around with your brain chemistry! Feeling "irritable" for no good reason is an early warning sign of degranulation for me.

Heather

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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)

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Doozlygirl

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Re: I need your expert advice!
Reply #10 - 04/08/12 at 20:06:02

Joan wrote on 04/07/12 at 05:55:20:

Lyn,

Are you able to take your meds when your BP and heart rate are that low?! Does your doctor think you should be at an ER? Your sleep sounds a lot like syncope to me. Are you able to take meds before you fall "asleep." What do you think?

Joan, I have taken AH as I was slipping into a hypotensive event, and I think it shortened the length (compared to trending of my previous events) but didn't abort it, (but that was with AH with dyes that I now know I react to, even triggering the events in the first place). My research and Lisa's posts have pointed to a type of cardiovascular anaphylaxis or prolonged syncope. Dr Brown's article states the AH may not/isn't helpful with cardiovascular anaphylaxis. During my last ED visit in 2009, I was quite hypertensive (stroke level) and they sent me home after some saline. I've survived the hypotensive events for three years (in begininning they only happened occasionally, now much more often). and without specific instructions, I fear the ED would kill me, so I opt for what I have figured out on my own. The minute I get the warning, I head immediately to bed! My research confirmed my instincts, that during anaphylalxis, the patient must remain supine. Retrospective reviews show deaths occur after the patient is instructed/goes upright. So I immediately head for bed or if traveling, put the car seat back. I've even layed on the floor in a hotel conference room with my feet on a chair.

One dose of a beta blocker split into 1/4 pieces taken over 4 days sent my resting HR from 100-120 to 40's for nearly 6 weeks. I was pretty much bedridden at this time. Now I understand what was going on. A holter monitor at this time caught a resting HR of 27 one night while I was sleeping. My body has figured out when to pop my circuit breaker and shut down. My body temp drops to below 96 degrees (lowest caught temp = 94.9 degrees) and blood sugars plummet with my HR. Have caught sugars of 230 to 74 in 9 minutes. Then I'm out.

I am hoping Dr Afrin can advise a med plan so I don't get these breakthrough hypotensive events. My local docs have no idea how to treat them, and my sleep neurologist only documented them as "sleep issues." Go figure!

I appreciate your thoughts. Thanks, Lyn

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jbean

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Re: I need your expert advice!
Reply #11 - 04/09/12 at 07:50:40

Hey Pam,

I get very hypotensive and pass out when I shock, but so far have never gotten the breathing problems customarily associated with it. I usually get rapid heartbeat (tachycardia), and sometimes I get ringing in my ears and a severe burning sensation on my skin, but not always. Also too, sometimes I will suddenly feel very tired before this sets in, so that is another warning sign for me personally.

You can shock out going hypotensive this way too, you don't necessarily have to have throat constriction or breathing difficulties, as that may come later after you pass out. If you feel that way, make sure you can lay down and try to get your feet above your heart. This will get the blood back up to your brain (that's why you feel like you might pass out, not enough oxygen (in blood) going up to your brain when your blood pressure drops. It's kind of a weird "sinking" sort of feeling).

Always carry some meds with you and be aware that this can be a warning sign that you might be going into shock. You can ask your doc what to do about this to get some guidelines on when to take your meds.

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PamH Mentor Offline Posts: 447 Indianapolis, IN USA	Re: I need your expert advice! Reply #12 - 04/09/12 at 09:00:22 Thanks Jbean, I didn't lay down right away, now I know to! I kind of fought it cause I thought if I stayed upright I would'nt go to sleep. Then I thought this isn't work got to do something! I will put my feet up too next time. Pam
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