Normal Tryptase - Can It Still Be Mcad?

[Serbo]

hi everyone - i have a question on Kounis. Still trying to get to the bottom of the chest pain stuff.

Issie - I've read through this whole thread, sorry to read you have had such a rough time with the chest pain and mast cell problems in combination. Did the doctor's actually diagnose kounis or was it just suspected? I wondered if you had chest pain independently of any reactions, or just @ the same time as a reaction?

I certainly have chest pain intermittently, but thinking back to my worst recent reaction I had no chest pain. Prior to the MCAD kicking off for me i had some serious chest pain in response to an oily, gluten meal. No flushing though or any suggestive allergy response other the chest pain. Probably more suggestive of GI stuff, but the chest pain was intense.

[issie]

It's suspected. There's really no test that can be done. But, the treatment that is used for Kounis was used and it worked. The chest pains come with the reactions. I don't have them unless I'm having a really bad flare. I do however, notice tightness in my chest and heart area and that is one of my signals that I'm having a MCAD reaction. Then, I make sure I start taking lots of Claritin and Tagament. If I'm really bad, I'll also take a Benadryl - but, benadryl gives me horrible tremors and that makes me miserable. I've gotten this with foods also. Several times before I left the table. So, foods can cause the flare. It feels just like you're having a heart attack - it's a very intense pressure and pain and it seems to take your breath away. My pulse rate goes sky high too when it happens. I do usually flush with it though.

Serbo, hope this isn't your issue - but, if it is - it'd be good to know. I talked to the imunologist at Mayo about it and he has all sorts of info on it. But, there really hasn't been a whole lot of papers written on it and there hasn't been research done on it other than the one or two papers written. It must not be that common of a thing or there would be more known about it. But, it's one thing that I list as a problem - just in case of an ER trip that I can't communicate about.

Issie

[Serbo]

It's suspected. There's really no test that can be done. But, the treatment that is used for Kounis was used and it worked. The chest pains come with the reactions. I don't have them unless I'm having a really bad flare. I do however, notice tightness in my chest and heart area and that is one of my signals that I'm having a MCAD reaction. Then, I make sure I start taking lots of Claritin and Tagament. If I'm really bad, I'll also take a Benadryl - but, benadryl gives me horrible tremors and that makes me miserable. I've gotten this with foods also. Several times before I left the table. So, foods can cause the flare. It feels just like you're having a heart attack - it's a very intense pressure and pain and it seems to take your breath away. My pulse rate goes sky high too when it happens. I do usually flush with it though.

Serbo, hope this isn't your issue - but, if it is - it'd be good to know. I talked to the imunologist at Mayo about it and he has all sorts of info on it. But, there really hasn't been a whole lot of papers written on it and there hasn't been research done on it other than the one or two papers written. It must not be that common of a thing or there would be more known about it. But, it's one thing that I list as a problem - just in case of an ER trip that I can't communicate about.

Issie

Thanks for your reply Issie. Some of the worst chest pain I have ever had was after a meal. as you said, like what i'd imagine a heart attack to be like, but for me there was no flushing, itching or anyhting allergic.

Now that I have the mcad diagnosis i've found that pretty much most foods make me @ least have a mild itch.

Did you have a heart cath or anything to check if they could induce spasm? I wonder if those of us with EDS are more prone to vasospasm and hence a Kounis type reaction. My cardio has so far ruled out a cath while my mast cells are unstable.

Really would like to get to the bottom of whats going on with me, fearful of exercising in case of exertion induced chest pain which is in turn making POTS symptoms worse.

[issie]

Don't do anything so invasive - that could cause problems all in it's own.

The heart is a muscle and it does need exercise. If you've had all the traditional heart work-ups done and they don't find anything significantly wrong. Start out with low intensity type exercise. If we don't work our muscles, we will get worse. I found this out the hard way when I was in a wheel-chair for over 5 months. My POTS got a whole lot worse. (Broke my foot/leg.)

Assume that this is your problem and take allergy meds when it happens and see what the results are. You don't need it to be scientifically produced - just test it for yourself. If it works, then present the info to your doctor and let it get put into your charts with what the treatments are for it - if you have an emergency situation like I did.

Issie

[Serbo]

Thanks for the good words of advice! Up until a couple of days ago i was exercising intensely, 1 hour walk followed by 1 hour exercise bike. It's just as i put more and more together i'm coming to a possible conclusion that i am having vasospasms, and it's really putting me off. Your right though, the heart needs exercise.

I have had a cardiac mri a couple of years ago, an eccho a week ago and a AAA scan becuase of spasms there. Nothing structurally abnormal. This stuff can really drive anxiety, noticing pains in my left tricep which of course i would never have noticed before.

[anaphylaxing]

serbo all foods seem to make me flush and itch too just thought I'd share

I get random intermittent chest pain of various types too

[Serbo]

ok thinking out loud here, need somewhere to write this down so may as well be here!

I have actually had a cardiac cath of sorts when they did my ablation in February for an arrythmia. They do imaging but i'm not sure if it's the same type as used to search for blocked arteries. In conjunction with this i have had ton's of ECG, 24/7 day monitors etc and i've had chest pain on them and it's never been remarked on.

I also have GERD, gross but burping being my main problem.

I have been on sodium cromoglycate for MCAD (Nasal/gastrocrom etc) for about 10 days now, and the main side effect seems to be spasming all over and fasculations. As soon as I take it i feel spasming in my stomach, calves, arms, under my eyes. Tonight i took it and lyed down, and soon after I felt 2 spasms lasting a second each in my chest, one centrally and one far left. Both with sharp sudden pain only lasting a second. Then i had a big spasm almost in my throat/upper chest, no chest pain until i panicked about it! When I take this med i thought my breathing was restricted but in reality i realised i needed to burp (erghh), sitting up and leaning forward removes the problem.

I think that I am a spasmer, and although I cant rule out vasospasm i suspect what i may be having is Esophaelgal Spasms

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001334/

In between a rock and a hard place here. Don't want to stop the sodium cromoglycate as i can't take any antihistamines, they all mess up my CNS.

If I could confirm they were just Esophaelgal spasms i'd put up and just deal with it, but not being able to rule out that they are otherwise is scary. My abdomen spasms and pulses from time to time. Went for an ultrasound to check for AAA. Wondering if this was a vascular spasm.

vent over.

Aaron

[issie]

Not sure what to say on this one. Just want to acknowledge that we all have those - I don't know what to do feelings. It seems our problems are so complex and there could be so many reasons for them. It makes your head spin - to think. Have you tried things like Quercetin and Vitamin C to help with the MCAD symptoms. I don't do well on Nasal Crom. It makes me feel weird. I can take Claritin and Tagament though. The doc told me to just start out with the H1 (Claritin) that might be enough and if not then add the Tagament. And just continue to add depending how bad the attack is. You can take more than one of the pills at a time too.

Maybe you should work on your gut ecology. Try priobiotics and colostrum and aloe vera juice. Easy on the aloe - laxitive effects. That may help your gas issues and help with the pains too.

Issie

[Serbo]

Thanks again for the reply Issie. Yes the plan is work on gut stuff, i know it needs to be done. i wanted to get the mast cell stuff sorted 1st and then work on the gut, but i guess the reality is they are interlinked.

Think i'll have a day off the sodium cromoglycate tomorrow and see if it the spasms disperse

[sweetfeather]

Caution! Tagamet (Cimetidine) can inhibit diamine oxidase!!!

Those of us with MCAS/MCAD and/or HIT (histamine intolerance) do NOT want to inhibit diamine oxidase!!!

Sure Tagamet is an antihistamine, but does Tagamet cause us more harm than good?

There are other antihistamines that do not inhibit DAO and one which may actually increase it...

Read the links below and be sure to consult your doctor:

http://www.ajcn.org/.../85/5/1185.full

"Most antihistamines have no influence on DAO activity, although inhibition of DAO by cimetidine and dihydralazine and increased activity by diphenhydramine have been observed."

Diphenhydramine is Benadryl! I think this explains why Benadryl is so quick and effective for me... it INCREASES DAO activity. I save Benadryl for my emergency medication to help keep from developing a tolerance or allergy to it.

*************************************************

http://www.medicheck...d=21&test=D-HIT

"The present clinical experiences show that histamine intolerance is not congenital, but rather an acquired disease.

A cause of histamine intolerance (HIT) may be drugs, which are inhibitors of the diamine oxidase."

"The typical symptoms of histamine intolerance are headache, diarrhea, migraine, engorged or dripping nose and especially in connection with food incorporation asthma bronchiale and arrhythmia, hypotension, urticaria and dysmenorrhoea."

*************************************************

Here's a list of drugs to AVOID:

(I'm sorry it wouldn't format correctly for me on here.)

http://www.ajcn.org/....expansion.html

Histamine and histamine intolerance

TABLE 5 Drugs releasing histamine or inhibiting diamine oxidase

Substance class Agent interfering with the histamine metabolism Contrast media Muscle relaxants Pancuronium, alcuronium, D-tubocurarine Narcotics Thiopental Analgetics Morphine, pethidine, nonsteroidal antiinflammatory drugs, acetylsalicylic acid, metamizole Local anesthetics Prilocaine Antihypotonics Dobutamine Antihypertensive drugs Verapamil, alprenolol, dihydralazine Antiarrhythmics Propafenone Diuretics Amiloride Drugs influencing gut motility Metoclopramide Antibiotics Cefuroxime, cefotiam, isoniazid, pentamidin, clavulanic acid, choroquine Mucolytics Acetylcysteine, ambroxol Broncholytics Aminophylline H2-receptor antagonists Cimetidine (Tagamet) Cytostatics Cyclophosphamide Antidepressants Amitriptyline

[issie]

I am so glad you found this and posted it. Why hasn't doctors told me this. I supposedly saw the BEST that a certain clinic has to offer and was told to use these things. I was told to first take the H1 blocker and then add the H2 (tagament) if it didn't work. But, never take an H2 without an H1 because it would convert to an H1 and make the allergic symptom worse. I'm very happy to know that this could compound the problem with MCAD issues.

THANKS for posting this.

Issie

[sweetfeather]

Issie, you're welcome. I don't think most doctors know much about Tagamet. It is an older antihistamine. My son was on it once because it was supposed to help with warts. I found out about Tagamet and DAO by researching histamine intolerance. My rheumi suggested trying different combos of antihistamines to see what worked best for me and I bought some Tagamet to try. Luckily I only took it a couple of times before finding it was on the avoid list for histamine intolerance. I'm sure it is a great drug for a lot of people and it might be right for people reading here too but I thought I should write about it so those with MCAS/MCAD will research it for themselves and talk to their doctors about it. I'm not a doctor so I can't give medical advice plus I don't want to disobey any rules. So please, please talk to your doctor.

When I came down with a bad case of POTS (I think I've had it mild most of my life) it was a few months after having the swine flu with 12 days of fever (I almost never get a fever and my normal body temp is low.) I had gone gluten-free in the previous year and my IBS symptoms were vastly improved. I could not even digest lettuce or raw fruit when I first went on the SCD diet. I felt like the SCD was a miracle at first. Bloating and pain mostly disappeared and following the stages on pecanbreaddotcom I was slowly able to add foods and start digesting fruits and veggies again.

Well... shortly before I got really sick I had tweaked my diet to be more like the GAPS diet with lots of bone broths, sauerkraut, probiotic pickles plus I kept eating the 24 hour low lactose yogurt the SCD has you make. I also had experienced enough gut healing that I was eating a lot more vegetables like tomatoes and spinach which I hadn't been able to eat for ages. What I didn't know was that when I tweaked my diet to what I thought was an even healthier diet... what I did was in fact... create a VERY HIGH HISTAMINE diet!!!!

Well low and behold... DAO produced in the gut? Damaged gut from years of IBS/undiagnosed celiac.. top with intermittent mast cell problems and EDS classical 2. Throw in high histamine on top of low DAO. Catch a virus and get pneumonia. Add in meds which promote mast cell degranulation...Voila! "Perfect Storm" created to take a mild and undiagnosed case of POTS into a full blown medical mystery tour!

[issie]

Oh, how I know that tour. Funny, we think we're doing ourselves good sometimes and it's completely wrong.

Issie

[issie]

Which H1 and H2 do you use?

[blueskies]

Thanks people,

for all the info. I'm finally about to start on oral sodium cromolgylcate (I'm in Australia but I think it's known as GAstrocom in the u.s.) My allergist has prescribed it and after nearly7 months I've finally got around to getting the script filled by a compound chemist. I've got a phobia about new meds. I've experienced anaphylaxis to aspirin (docs and I think aspirin was the culprit), anaphylactiod reactions to various things, "adverse reactions" where I thought I was dying for sure but was not, and the usual rashes, urticaria of all types including dermographism, flushing, hyper sweating, and skin that feels like it's sunburned at time and can feel like this for many days at a time. Weirdly I don't get diarrhea, but rather have a constant and sometimes servere constipation problem????. I have allergies and food intolerances as well as intolerance to many chemical smells -- daughter bought a new car recently and the smell was horrendous and I felt very potsy for days after riding in it All of it's got so bad over the past decade that I'm absolutely phobic about to trying a new med. Last single tablet of an antibiotic led to a feeling of dread, a hour and half of vomiting (finally stopped with a Zofran Zydis wafer) only to be followed by a couple of hours of ice cold feelings and body jerking (shivering so hard I was jerking). So, each new med I try takes me a long time to finally get up the nerve to take it. But after the reading I've done here and similar topics I realize how very unalone I am with these problems.

I've been slowly making my way through all the MCAD MCAS etc., topics and have found a lot of info that I can relate to. So once again thanks.

There was some mention of epi-pens on this topic. I just wanted to mention that I have an epi-pen too and although I've never had to use it (I feel like I'm tempting the gods even writing that) I have carried an epi-pen for quite a few years now.I discovered some time ago that epi-pens have a used by date so I make sure that mine is not out of date. They don't last as long as I would have thought they would. I was surprised by my first one that it was past its use-by date when I read the side of the container one day. Don't know why I had assumed that the thing would be always good till needed. It's a medication and reaches use-by dates like any other. Also I've been instructed that if I need to use the epi-pen I should call an ambulance after injecting myself because one might need more and any reaction that needs treatment with an epi-pen means that one needs to go to hospital afterwards. That one is not necessarily out of the woods entirely for some hours afterwards. Can't give definite times as I've forgotten. I'm sure it's worth checking this all out of the net. Sometimes I get a bit muddled about things.

I now tend to forget a lot of what I once knew clearly. Exhausted brain as well as body. I know you all would 'get' this.

blue.

[issie]

You are right about the epi pen. They usually issue them in two's. I have a double pack. If one doesn't work in a certain time frame - you are supposed to use the other one. Because, a serious reaction - that requires an epi pen --you should call the paramedics because you could pass out or worse. Your throat could swell closed and you could not be able to breathe, or there could be heart complications. So, you need to have medical help and them get you on antihistamines that will take effect in a hurry.

GastroCrom has been a great help for me. That and the "cocktail" (as my doctor calls it) has been one of the best things I've done. Hope it works well for you.

Issie