New sicky in town

Hi Nebraskamom,

Your story really strikes a chord in me.  I haven't been to the ICU (thank goodness), but I have had four unexplained episodes of anaphylaxis since February... head-to-toe hives, vomiting, diarrhea, pounding heart, terribly dizzy... you know the feeling.  I've had a LOT of testing and the only thing that has come back positive (strongly positive) is a test for auto-antibodies to the high-affinity IgE receptors on my mast cells.  Like you, my attacks also occur in rhythm with my menstrual cycle... February 1st, March 1st, April 3rd, and the last one (which worries me since I'm now taking boatloads of antihistamines) was on September 5th.  I contacted Dr. Castells a few weeks ago and I'm hoping to see her sometime soon.  I'm also hoping my allergist in Indiana will do a little more testing... I've read that a positive test for an allergy to synthetic progesterone is diagnostic for catamenial anaphylaxis.

As far as Lupron goes... my understanding is that it induces menopause.  The goal is to see if it works, in which case the solution might be to remove your ovaries (ouch).  Of course, menopause has lots of nasty side effects... night sweats, bone loss, higher risk of heart attacks... but in your case it might be better than constant trips to the ICU.

I look forward to hearing more from you!
Heather

Hi there Nebraska,
Welcome to the forum.
Seems many people can trace the illness back to an event/trigger. It's also very common to flare around menstruation. There is a complex dialogue between the histamine system, mast cells and the released mediators and estrogen and progesterone.

I haven't heard of Lupron before (thanks Heather for outlining the med).
Nebraska have you tried the normal rote procedure initially for controlling your symptoms with a blend of H1 and H2 blockers?
In Heather's case above I feel that it's different as they docs have actually identified her body making antigens to itself.

I'm just learning about catamenial anaphylaxis.
Whatever way your treatment goes I hope you get relief soon and not wind up at the ICU! From what I've heard about Dr. Castells you'll be in good knowledgeable hands.

Looking forward to hearing more from you :)

Hi New Sicky in Town,

I, myself, am also a new sicky in town. Welcome! Wow...learning so much on this forum. I noticed a correlation with menstruation and anaphylxis as well...see my 'Intorduce Yourself/Share Your Story' note.  I would tell this to my doctor, but it seemed to fall upon deaf ears. I cannot wait for my appointment in Boston. So glad that you are on this forum! Think of all the information that researchers could gather just by reading our posts. "Research suggests..." It is so nice to have our symptoms/disorder/disease validated. Keep on posting! btw, my doc was thinking of prescribing the drug plaquenil (sp) for my Idiopathic Anaphylaxis. I read all of the side effects and opted out on that one. Has anyone ever had their physician suggest this drug? I really think my Allergist/Immunologist is missing the boat. Be well, all! Mimi in Philadelphia

Hi Mimi :)

Oh yes, my immunologist prescribed me Plaquenil also... think I posted my experience of this in "medications" thread.
Apparently it's meant to act on certain immune pathways. Sometimes it's prescribed for people suffering rhuematoid arthritis, systemic lupus and chronic idiopathic urticaria. Apparently some people find it useful, others have had awful reactions to it. The med also takes a minimum of 6 months to know whether it's of benefit or not. I decided against it also, given the level of side effects. My immunologists just keep throwing more drugs at me.... but I feel I am working out a med regime and this knowledge has predominately come from other's suffering similar/same illness and my research.
On the TMS site many responded saying they had experienced adverse side effects and stopped it immediately. There were two people who responded saying they include it in their daily meds and it was okay. It's all so variable. I go with my gut instinct, primal yes, but often spot on. Everytime I ignore it I end up shit-creek!!
Best of luck with it all
:)

Wow - thanks for all the kind word. In response, I'll list my meds.

After my 1st trip to ER - went on H1 blockers - Clarinex, Nasocort. Did well to control my seasonal allergies.

After 2nd & 3rd trips to ER (big gastro issues and hypotension)- went on H2 blocker - Ranitidine and on Prednison - 5 mg every other day.

4th trip to ER - still had significant gastro symptoms, along with severe hypotension, went to Dr. Castells - who has put me on Gastrocrom.

Seems to help my gastro symptoms - but now I am flushing and dizzy all the time. I am 44, so probably in perimenopaus, but my flushing is "dry" and pretty much continuous, so I'm still stumped.

So, now I'm looking at Lupron or something similar to stop my menses so we can see if this helps. Dr. Castells wants to try another masto med, but not until we look at what the Lupron does.

I am taking probiotics, Vitamin D/Calcium, and Ester C also.

TTFN and Be Well All!

ok I am not new, new but new enough lol I go to Dr. Castells and everything said here about her is absolutely true she is very caring and listens!! to everything you have to say ...She looked at all the tests results that I brought with me, They where very helpful to moving things along. at this point my tryptase went from 17 to 13 and I am on a tons of meds but without them I would be continually reacting. I was told my histamine levels are within range but my prostiglandins are like 585? That seems to be high..I don't know what that really affects but I started taking Asprin (do not do this with out Dr. knowing due to reactions) but there has been research showing that this has been shown to bring Prostiglandin level down to normal in many people ?? I will try anything at this point. I have also started to take melatonin at night time and have had no adverse affect at this point and it's been a few weeks. he insurance stopped covering the prilosec that they where covering a few weeks ago...so I think now I am paying over 200 dollars a month on over the counter meds that are required just to make it throught the day. I went for cortisone shots in both my hips due to the severe pain and that lasted a couple weeks and the pain is back again. I wish I could have gone to the conference but the cost was out of the question for me. I hope everyone is having a great day with no reactions!!

Praying for an Angel, Hoping for a CURE~~~!

Hi,
My own experience with lupron, prior to an endometrial ablation, was horrible.
I know we're all different, but for me it was six weeks of hell. During this time, I did some research and came up with the following nugget: Dangerous sex offenders in one state (forget which one) were no longer required to take lupron because it has many unpleasant side-effects. Really?
My hormones used to give me and my family hell. My PMS was legendary.
Menopause was awful, but now I'm taking bio-identical hormone replacement therapy, and I've never felt better.
There is little research done on bio-identicals, but a recent trial showed them to be a resounding success.
Bio-identical hormones are the exact same molecules as the body makes. As such, they are non patentable. That's why the hormone replacement industry is still awash in synthetic horrors.
Although you're not menopausal, I wonder if you couldn't take low doses of bio-identicals to iron out the kinks in your cycle. I still have a cycle of sorts. Though no period. But I don't get any of the moodswings, and mast cell melt-downs of before. :-)

I'm a Dr. Akin fan myself since he turned me from a debillitated sicky to just the opposite! He works at the same location as Castells.....Not saying that Castells is on the wrong track, but she does seem to put a lot of people on gastrocrom right away while I believe that Dr. Akin tries the other histamine blockers first, such as the ones I am on: zantac, allegra, zyrtec. I used to flush constantly, and now I don't with these meds.

Hi all,

I'm a newbie too, just registered in fact. I've had catamenial anaphylaxis since I was 17. I'm 39 now. So back in 1987 even less was known about this and the original diagnosis of idiopathic anaphylaxis was given.

Prior to age 17, life was normal hum drum. I'd eaten crustaceans before, loved it until the 3rd time of eating crablegs resulting in an anaphylactic reaction. Thinking it was just crustaceans the next few months after that resulted in the same reactions w/out eating shellfish of any sort. (It is interesting to note though I wouldn't see a link until much later that Tryptase is a protein that is released into the blood during an anaphylactic reaction.) It would happen every so often, resulting in ER trips and carrying an epinephrine shot.

Finally after years of this I started keeping a journal but it was not until my allergist found the link of them always asking me in the ER if I am or could be pregnant when admitted, and I would reply I was on my period that it started to make sense. Waiting until 1994 for this missing link is bittersweet but at least we had a starting point.

Here is what I have done since. It's unorthodox to some but after years of prednisone, cimetidine and some drug I used to get from the Vatican Pharmacy in Rome (I can still hear brother Fabian answering the phone, "Pronto! Vatican de Roma Pharacia"), I've lived a somewhat consistent life with little hospital visits:

In my journal taking a few things other than my menstrual cycle stood out to me. I noticed a pattern with eating a lot of protein, in particular animal protein such as red meats. Thinking back on this now and making the protein connection I've often wondered if having that Tryptase released during that anaphylactic reaction the first time to crustaceans while I was on my peroid triggered something.  I looked this up:

LH is a heterodimeric glycoprotein. Each monomeric unit is a glycoprotein molecule; one alpha and one beta subunit make the full, functional protein.

It made sense to me that the two may be related as LH is essential for reproduction and directly related to ovulation AND it controls proteins. On a whim I reduced the amount of red meat proteins in my diet. I also do have a true allergy to crustaceans now and avoid them totally. I noticed a difference immediately in the frequency in reactions. Since my cycle is not concrete, if I have had a lot of protein in a day from eggs to poultry or even high in protein legumes, and my period sneaks up on me? Full blown reaction.

I still take antihistamines and cimetidine as I am prone to allergies as a whole, I suspect from increased mast cells but I am prednisone free for almost 8 yrs now. I have on average 1 full blown anaphylactic reaction a year compared to 6 or 7 prior. 

My point is this, I came here looking for others with these reactions as I'm seeing far more cases than I ever did in the early 1990's when researching this. There were no forum discussions and I felt totally alone. Reading other's experiences tonight I found myself tearing up a bit in gratitude as well as sympathy. Thank you Deborah for making this available!

Also, keep a journal! It was my only available tool for years and it is the best thing you can do for yourself in taking control of your health. What has worked for me may not work for others. I'm reading about drugs my allergist at the time did not recommend, some of it is scary but then so is this illness. What works for me may not work for others so always consult with your doctor but voice your concerns. Find out what works best for you and enjoy your life to the fullest however limited it may be.

It's been great reading up on this and getting updates on medicines and doctors. I look forward to getting to know you more.

Hugs,
Karina

Karina,

Thank you soooooooo much for posting. Guess what? I have actually learned something from YOU, rather than me sharing info with everyone else! I am very intrigued by what you wrote, because my own reactions and triggers sound very much like  yours but I don't know anything about catamenial anaphylaxis, although it has been mentioned once here on this forum. I wonder if that is what I have, rather than just idiopathic anaphylaxis?

The similarities that I see are that my worst times for an attack are during my period & I can't eat many proteins or they make me terrible ill, sometimes ER ill. I absolutely cannot eat steak (although I seem to be able to heat a hamburger). I can eat chicken, but might feel ill from pork and most fish. Most foods with proteins will, indeed, trigger me, even yogurt or cheeses. Perhaps because I am on histamine blockers, I can therefore tolerate the hamburgers, cheese, and chicken. I don't know because I have never thought about it being a protein thing. I know that when I was pregnant with my twins, I had high protein levels which the docs thought was odd. I wonder if that is significant?

I have some questions for you, because you may have opened up a whole new door for us. What medications are you on? Do things other than proteins and your period trigger you? For example, I trigger from heat (either from exercise or from outdoor heat. Even the furnace during winter will make may head feel fuzzy). I trigger from stress, even happy stress where you are so excited to go do something. I trigger from antibiotics. Do any of these things happen with you? Finally, how did you get diagnosed with this and how do we learn more about it? Any websites with good info on it?

Thanks for joining us and bringing in new, helpful information!!

While I do not dispute the possible effects of protein as dicussed by
Deborah and Karina I would like to add that all animal meat contains histamines,and the more rare the meat,the more histamine I suspect.
I can tell the difference myself whenever I have stake compared to when I have poultry.

On the subject of protein and histamine, here is a very useful link on how to minimize amines (like histamine) in meat, dairy and eggs.

Minimizing amines in meat, dairy and eggs

Pork naturally contains amines, so stay away from it.
Amines multiply rapidly in fish once it is killed, so it must be eaten within hours of being caught.
Other *fresh* meat is low in amines, but amines develop as the meat ages. Most of the beef we get at the supermarket is several weeks to several months old and beef from the butcher is often hung and can be six weeks old.  Far too old for us!

Chicken is usually a better option, but it can be injected with flavor enhancers unless you buy organic.

For sensitive people in terms of beef, The Royal Prince Alfred Hospital Allergy Unit advises that:

• Meat should be less than two weeks from slaughter when purchased
• Meat should not be stored frozen for more than one month

Leftovers will also contain amines.

That's just a few points off the top of my head, but you might find it interesting to read the information at the link.

Faith

Thanks Faith! That is fascinating and very helpful to know. I am definitely going to read your links!

Hello there Karina!

Welcome :)
That's very interesting regarding the proteins. I clicked on each link but I need to say I'm at a loss as to translating those links into information I can understand and how they relate to tryptase aside from the food "activating" mast cells to release tryptase into the blood.

What's really stood out for me in your post:

"Thinking back on this now and making the protein connection I've often wondered if having that Tryptase released during that anaphylactic reaction the first time to crustaceans while I was on my peroid triggered something."

There is much documentation regarding complex interactions between hormones, mast cells and the histamine system (apparently this interaction can give rise to oesteoporosis) as many of us flare with menstruation. Maybe you are onto something in regards to the breakdown of the glycoproteins.... very intriguing research. One I'm paying full heed to, even though I can't really understand the glycoprotein side, as my period has changed to a 20-21 day cycle as well as a flare that can range from mild to fairly severe. So in lieu of this knowledge your sharing I'm going to try to restrict excess protein from my diet just after ovulation and see if this makes a difference.

You must be so pleased to be prednisolone free for 7 years, that's great to hear as well as reducing the episodes of anaphylaxis!

Looking forward to hearing more from you!

Hello again,

I hope I haven't hijacked nebraskamom's thread but it was the closest information I found I could relate to. I'll go into a bit more detail and perhaps we can find more common links.

First of all I credit my allergist for saving my life, my emotional well being and for putting me in the drivers seat of my condition. At the time it was a fascinating puzzle for him but he was just as limited in finding true answers as anyone. We did a bone marrow aspiration that came back 50% conclusive for systemic mastocystosis. Wow, helpful eh?

The links in my last post were self imposed from info I copied, so I was not trying to highlight their relevancy although a physician may make a better connection with it. The information I shared is based off personal experience and what my body has gone through. I understand the question of protein being a hard one to pin point. While it is true that there is more histamines in say a steak versus other meats or poultry, what was interesting to note for me was the lack of anaphylactic reactions when eating red meats while not on my menstrual cycle.  Or the fact that I could ingest a high in histamine fruit like strawberries while on my period with no reactions but not a protein filled red meat.

I started years ago on my own with an elimination diet that most allergists recommend to find true allergens. I think you'd find it interesting Deborah to note that for awhile I was reacting all the time whether on my period or not and I strongly feel it was due to years of it building up in my system that to have a reaction was the norm instead of the opposite though it was stronger and life threatening when on my cycle.

Once I did an elimination diet and slowly added certain foods back in, I was surprised to find I did not have many food allergens. Skin tests did reveal crustaceans so I didn't even attempt that but oddly enough there were  no problems until I would note protein heavy foods while on my menstrual cycle. That was enough for me to try a new eating lifestyle.  I have to be careful, and we cannot live without proteins so I stay away from meats while on my period and though it leans carb heavy I try to add steamed vegetables and beans to my meals. I look at it as diabetics do, I monitor how much I take in and supplement what I can't eat for something comparable. I refuse to not enjoy my life.

Over the years I have been to countless doctors each suggesting something new. One said, "have a baby, maybe it will change with your hormones," but could not guarantee that I would not have a reaction while pregnant and have to take an epinephrine shot risking the fetus. One suggested a partial or full hysterectomy but research I did showed a few women who did, both resuming their reactions afterwards due to hormones they were taking after the fact. Another was taking a LH inhibiting drug that would basically make me androgynous and I'm sorry but with no guarantees, I kinda like my boobs and didn't feel like walking around with raisins in my bra.

So I've decided that one maybe two reactions a year that I manage with an epinephrine shot, benadryl, cimetidine and a possible trip to the ER is more manageable....for me. I am convinced that prior to that fluke allergic reaction to crablegs while on my period, my body was different. Whether an increase in mast cells like those with mastocytosis is something that triggered it, I may never know. It's another reason I'm glad I found this little corner of the internet where others are looking for answers too.

Hugs,
Karina