Mast Cell Madness.

I’m officially terrified by my mast cells because Christmas heralded another sick, sick few days. Almost as sick as Thanksgiving, so I’d have to say the 2nd sickest night of my life. However, this time, it all started with my tongue swelling up, which gave me more insight into the mechanism behind it.

I sometimes wonder if all my health issues stem from mast cell activation syndrome. I can tell the difference between ME symptoms and mast cell reactions, but, still, there’s this little seed in my brain that says, what if they’re at the root of EVERYTHING and I should be spending my time finding a doctor with MCAD expertise on this side of the country (it doesn’t seem to exist in Seattle)? I don’t do this because I am generally stable. On a day-to-day basis, I’m not having reactions — unless, of course, many of my chronic symptoms have mast cell degranulation at their core and I just don’t realise it.

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My health issues started with full-blown anaphylaxis, out of the blue, 9 days after my 28th birthday. Doctors were hopeless and gave no advice back then, not even daily preventative antihistamines. The common denominator was alcohol (but not every time I drank, so it was confusing), so, after the last trip to the emergency room in Dublin, where I almost died, I finally quit drinking and haven’t touched a drop in 13 years.

Before that, I had swelling in my eyes and hands and a severe edema episode once or twice that I didn’t really think much about. I linked it to Asian food, so stopped eating that and MSG and didn’t look any further into it. This was eventually diagnosed as autoimmune urticaria and angioedema and I was told to take Zyrtec, but didn’t want to medicate daily for an intermittent condition.

I’ve always had trouble with my periods — crippling dysmenorrhea — but they got progressively worse until I collapsed with syncope and shock 13 days after my 32nd birthday and was taken off in the ambulance. For 6 years, no doctor gave me any advice until, finally, an OBGYN told me to dump salt on my tongue. This doesn’t stop the collapses, but it certainly helps. These episodes continue to happen randomly to this day, always on the first day of my period and are, without a doubt, mast cell mediated, presumably low-grade anaphylaxis (very low blood pressure and pulse, bowel problems, syncope, shortness of breath).

anaphylaxis scale

I have a spot in my throat that has itched for years. It was actually the thing that lead to diagnosis of my toxic thyroid goiters and Grave’s Disease because I mentioned the itch to some random doctor who palpated my throat. I’ve now realised it signals reactivity in my body at a very low level. It’s almost always there, but, when it’s not or when it’s very bad, I pay attention.

I was flushing badly for years, thinking I had developed bizarre self-consciousness, but the self-consciousness was actually a result from flushing and having people point it out! When I was diagnosed with Grave’s, I thought it was a symptom of that, but it never went away after ablation.

Of course, in retrospect, there have always been issues I have dealt with, which may or may not originate with mast cells: thyroid problems and Raynaud’s can be a result of mast cell disorders. Also, constipation, headaches, low blood pressure, and temperature sensitivity (all of which got much worse in recent years). Finally, many of my ME symptoms could also be from MCAS: fatigue, joint and tissue pain, eye pain, vision problems, vertigo, episodes of low body temperature, scent/odour/chemical sensitivity, sinus problems, cognitive impairment, hair loss, decreased bone density (I have osteopenia, on the cusp of osteoporosis), shortness of breath, medication reactions, malabsorption, and tinnitus. See a list of signs and symptoms here.

It would be wonderful to be able to manage and control any of these issues, but none of them scares me like the nights I’ve had recently, not even full-blown anaphylaxis. I’ve tried so hard to figure out my triggers, but they are moving targets. Tongue swelling and angioedema are obvious, as is the very specific breathing difficulty you get with anaphylaxis (it is nothing like asthma or wheezing from an infection). I don’t get daily hives and itching like many people. My reactions now are all about the histamine bucket and completely dependent on where I am in my cycle and what is happening in my life. I may be able to eat anything one week and then suspect that those same foods are giving me sinus trouble, insomnia and a jaw ache a different week. My chronic daily headaches, tinnitus, brain fog and exhaustion could be from food choices, but I’ve never been able to pin down any causation. My diet is very low-histamine compared to normal people and how it used to be, but I still allow myself chocolate, coconut, store-bought chips, beef, almost all fruit, including dried and many things that others avoid. Could these things be contributing to my problems? Yes, but, without a definite correlation, I don’t want to eliminate foods. Once you’ve experienced anaphylaxis, “reactions” like a runny nose, constipation or aching hands are quite ignorable. The only thing that consistently caused a reaction was alcohol and my periods. And, now I can say with certainty, holidays and events, no matter how careful I am.

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I prepared for Christmas over the course of a month and a half, slowly bought presents and wrapped them, slowly wrote some Christmas cards, slowly got the spare room ready for my sister, slowly did laundry — over the course of weeks! Didn’t overexert myself at all. There was no excitement, no activities. My sister and her small dog came over, we watched tv and opened presents. I had rested multiple times throughout the day and the only not normal thing I ate was half a tiny piece of fresh King salmon, which had been brought in off the docks that same morning and, I was told, caught the day before.

My tongue started to swell up after dinner. By the late evening, I had gotten upset for really no good reason (which has historically happened with my mast cell reactions) and was flushing. I had a bad reaction to about 15mg of Benadryl a week or two prior, so I was scared to take a decent dose on this night. I bit a dye-free capsule and put a drop on my swollen tongue and went to bed. At 2am, I awoke with the same evil that I experienced on Thanksgiving and the night after starting Cromolyn (before going to the AirBnb rentals back in September — it was a few days before my period that time, too). I was shaking so badly, I couldn’t lift the water glass, I was drenched in sweat and had weird runaway chills coursing through my body. I crawled on my hands and knees to the bathroom, which scared the shit out of me because, through all the worst of ME, that’s only happened once before. I fell into harrowing nightmares and woke up gasping for breath over and over, feeling poisoned and infected. I dreamt that I was sick and dying and my husband wasn’t paying attention or taking it seriously. I dreamt that I was sick and dying and my mother laughed at me (this isn’t remotely based in truth, this is my terrified mind not knowing how or where to get help). I dreamt that my dog’s neck was broken and I was carrying him to get help, but I was sick and dying and couldn’t do it. And, finally, I dreamt that I was lying on the floor begging my husband over and over: “Please kill me. Please kill me. Please kill me.” I woke up sobbing and so wrung out.

That morning, my period came 5 days early. You better believe, if I had known my period was going to arrive Christmas Day, I might have cancelled Christmas. Or at least postponed present opening for a day. And definitely not eaten even the freshest salmon.

In the past, my anaphylaxis episodes went like this:
My friend A’s birthday party.
My friend C’s birthday party.
Oktoberfest.
Easter party.
C used to joke that I was allergic to fun. I can’t believe he was right. I collapsed and had the paramedics called twice while my mother was staying with us and, also, when my best friend was here from Ireland — both were “events”. I started to get paranoid that, psychologically, I was somehow causing my system to crash when there were visitors. But, every single one of these times, I had my period. There were only a few anaphylactic episodes that I can remember when it wasn’t the first day of my menstrual cycle. EVENT + MENSTRUATION = MAST CELL MELTDOWN. But I think I only really and truly started to believe this 100% on Christmas.

So, Christmas day is a total haze. I crawled downstairs a few times to eat and try to put on a good face, but I don’t remember much and dozed most of the day. Like Thanksgiving and September, however, I bounced back quicker than I could have ever anticipated. That night I kept marveling, “How am I speaking? How am I sitting up? How am I alive?” When it’s bad, you honestly want to die. When it ebbs, the human spirit kicks back in shockingly quickly and you just get on with it, until the next time when you are surprised anew at just how bad the bad is. I didn’t even really modify my diet. I continued to eat my almond butter, coconut ice cream and drink bone broth and tea (all high-ish histamine). If anything, I felt more, Oh fuck it, how much worse could it be? At this stage, I’m much more scared of menstruation and engaging in any sort of event — even one in my house, in my pajamas, with only a single guest.

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I am currently putting together an informational kit (in a bag that was donated to me by a member of one of my groups), so my husband has something to grab in the event of an emergency. My dilemma is that I’ve managed to avoid drugs all this time (never had to use my EpiPen), so I have no way to premedicate for things like plane flights, dental work or necessary procedures like a CT scan or colonoscopy (which my doctor has wanted me to get for years, but I refuse because I’m worried about reactions). I have no safe protocol. 13 years ago, I got IV diphenhydromine for anaphylaxis, now I react to 15mg of Benadryl! 5 years ago, I had IV morphine for dysmennorhea, now my breathing shuts down with a crumb of hydrocodone or codeine. What would happen in a real emergency? If I need surgery? Knock on wood, toba toba, ptooey, ptooey. Once I have everything compiled, I will post it here.

Having said all that, I’m really in quite a good place, feeling happy and hopeful about the new year. Maybe because I realise that these reactions are mast cell degranulations and not ME relapses and that takes some of the fear away. Somehow dying from anaphylaxis is less scary than becoming permanently bedbound with ME. Perhaps only people with both illnesses will understand that. So, here’s what I did New Year’s Eve:

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As well as resilience, forgiveness, positivity and optimism, I’d also like to request that 2015 doles out truckloads of health, wealth and happiness to all of us. That’s all. That’s not too much to ask, right? 🙂

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12 thoughts on “Mast Cell Madness.

  1. Jackie says:

    How incredibly scary your Christmas was!! What a crap deal that you cannot take much Benadryl. I am happy you are okay.

    At one time, I too thought my issues were due to mast cells. It explained everything and my mom was intrigued as well based on some family history. I found a doctor willing to do the testing correctly. It was not during a horrible flare — just a flare. It turned out not to be the case, although I still don’t dismiss them as having a small role in my issues. Maybe results would have been different during a worse flare, although I sort of doubt it judging by the levels that came back and the fact I was symptomatic.

    Are you familiar with Dr Afrin’s work and do you have a copy of his write up? I emailed him asking about getting a copy of his MCAD primer I’d heard about and he emailed me the write up. If you don’t already have it, I will get it to you because it is WONDERFUL.

    It would be exciting if this explained everything going on with your body!

    … and you know my thoughts on your smile. 😊

    Liked by 1 person

    • Jen says:

      I apologize for writing from my iPhone, so annoying but it’s all I have. I couldn’t wait to even finish your post because so much of what you said resonated with me. Right off the bat I want to say that I do think there are some docs in Seattle (right?) familiar with mastocytosis & likely MCAD at the U of W. I am in Portland with even fewer options but I’ve found a single allergist who I may be able to work with that knows MCAD.

      Yes, yes, yes to that feeling of there must be once source of the seemingly endless symptoms that are robbing me of my life! And I agree that Mast Cell disorder so elegantly explains it. Looking back, I’ve struggled all my life but it got very bad about 13 years ago which is when I got a fibro diagnosis. At that point I’d already been diagnosed with severe allergies & completed my first course of immunotherapy before age 7. Also on the list: chronic sinus infections, Pcos & ADD. Since the fibro I’ve been diagnosed with IBS, intestinal permeability, and narcolepsy. How could a person have all this and have them all be discrete, non-related conditions?!

      My cousin was recently diagnosed with mastocytosis & encouraged me to look into it since we have so many similarities. At the same time my doc here in Portland diagnosed me with Ehlers-danlos (probably do not have fibro because EDS has very similar symptoms). Turns out there is high co-morbidity between the two. At this point I would just like to feel like I really understand what is happening to me and have a name for it, even if I don’t have the energy to explain to people what it is.

      I’m rambling, sorry. It’s just so rare to come across a personal story that I feel I understand. Feeling scared about what’s going to happen, mourning the loss of time with my family & missing out on my daughter’s childhood – she’s never seen me healthy or active more than a couple of days at most – watching my husband run himself into the ground trying to work, run an education charity that he started years ago, taking care of my daughter and take care of me. I have dual masters of science in education & special education & have t been able to work in 5 years – heck, in the last 8 days (when the current flare began) I’ve only left my house 3 times.

      I don’t know what’s going to happen next but my hope for this year is to find the resources/energy to pursue this & see if I can get some answers & maybe a treatment strategy. We deserve that even if we are the unlucky ones who drew the short stick that read: “mystery condition with horrifying/scary symptoms that will be very difficult to diagnose and very few doctors will know anything about.”

      Liked by 1 person

    • Jen says:

      Hi Jackie, I feel as though Dr. Actin has made it clear that the testing for masto/MCAD is truly fraught with difficulties that lead to incorrect or misleading results. His stuff has been so helpful, I’d love to get the handbook you mentioned, did you just write to him using his email at the U of M or did you contact him another way?

      Liked by 2 people

  2. bertieandme says:

    I’m angry on your behalf that your body couldn’t just give you a few days off over Christmas – poxy illness!!

    As you know from my Canary posts (http://mastcellblog.wordpress.com/2013/11/12/canary/ and http://mastcellblog.wordpress.com/2013/11/23/canary2/) I think mast cells are at the root cause of ME in any event – I definitely have both MCAD and ME. I know when I’m sick from ME, and know when I’m sick from MCAD because they manifest differently, but I just know in my gut they are linked.

    I didn’t get some of the more typical MCAD symptoms until I was in my forties, ie hives, itching, reflux. So just because you don’t have these it’s no indication you don’t have MCAD.

    I’d absolutely explore the mast cell route – your history is SO similar to mine. My ME also started with an allergic reaction and then went beserk following immunizations, though looking back I’ve had mast cell symptoms all my life. I inadvertently started treating my mast cells 10 years ago by taking anti-depressants which are also antihistamines, sprouting my own seeds and beans (helps with DAO) and juicing (high in Vit C) and my ME started to improve – can’t be just coincidence. I also used to have bad chemical sensitivity (couldn’t even read a newspaper cos the ink used to give me breathing problems) and this just went!

    I’ve spent the last 20 Xmases feeling dreadfully ill. No matter how hard I planned and rested etc I was *always* ill Xmas day. This year, having treated my MCAD all year, was the best ever despite having my period.

    I can’t tolerate the usual Zantac/Zyrtec combo, but have found other kinds of antihistamines that I can take (cemetidine and ceterizine). Your experience with chromolyn put me off even trying my script!! I’m also going to try high dose Vit C when I pluck up the courage, starting off very small and gradually working up to 500mg daily. As you know, my low histamine diet has helped a lot but I appreciate you’re much more affected by food than me.

    I still have ME sadly, but as you know much much less than I used to. I think treating ME will eventually involve a mast cell protocol but I think it will involve new drugs to treat H3 and H4 histamine receptors rather than the H1 and H2 we treat now.

    Hugs, Jak xx

    Liked by 1 person

  3. […] bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got […]

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  4. […] “anaphylax” often, repeatedly, sometimes daily. I can’t imagine this. There are different levels of anaphylaxis, so I suppose these could be lower level reactions, but my experiences with anaphylaxis was […]

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  5. fledglingdancer says:

    Have you looked into whether you have disautonomia (specifically Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers-Danlos Syndrome) Your symptoms sound like those.

    Like

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