The future might be the past…

I’m going through a rough(er) patch. My body is scaring me because I can’t find any cause for recent episodes. One of the good things these past few years, is that I can usually pinpoint a reason for reactions and downturns. Even after the last horrific night I suffered with apparently no reason (it was last November, during my Dad’s very short visit and I couldn’t blame it on overdoing it because I didn’t), I started spotting late the next day and–light bulb!–it was my period coming a week early (I can have terrible reactions on the day before or the first day of menstruation).

When my husband called 911 on the first day of my last period (both my MD and ND said that my body had gone into shock), it was the first time I’d had such a bad collapse with vitals bottoming out since 2010 — since before I was sick! Then, 5 days later, I got a tingly tongue and lip during IVIG and then a hive on the base of my throat. I realise it was a tiny reaction compared to what so many mast cell patients go through (a week later, a friend of mine went into full-blown anaphylaxis during her IVIG infusion and then somehow got the guts to try again the next day with the same batch –that put my experience into perspective), but the thing is, except for one small hive when I tried Xanax in 2013, I hadn’t had any hives since being in full-blown anaphylaxis 17 years ago! And that place–a hive in the suprasternal notch– was always the position for a systemic red alert, for something I ingested, as opposed to benign contact dermatitis.

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Then Saturday evening, my tongue swelled up for the first time in 7 months for no reason that I can figure out. I had tongue swelling a few times last year, but I could always explain it (dental work, sauna, vancomycin). Even more concerning, it’s still swollen now, 45 hours later and that’s very unusual. I took Benadryl the last 2 nights, squirting it onto the affected area of my tongue, as I’ve been told to do (this is also unusual for me–I am extremely judicious with Benadryl, only taking it when absolutely necessary) and the swelling still hasn’t resolved. I can’t remember another time it lasted this long — maybe, again, 17 years ago during anaphylaxis.

Then yesterday afternoon, I was hit with vertigo after spending too much time on my feet, preparing food. Vertigo is rare for me and is a big red flag. It’s very different from dizziness and I don’t think it has anything to do with blood pressure. I went to bed for a while, hoping it would resolve, but, when I got up, I was still slamming into walls, as if I were walking the hallway on a lurching boat. The last 2 times I experienced vertigo were 5 months ago during–shocker–my period and a year ago on the morning we were leaving for California, after killing myself the day before to finish packing. I thought it might be something to do with my neck, which always has issues, so I used heat, then my cervical traction device, then an ice pack. I think it helped; the vertigo had mostly abated by the time I went to bed.

But…

A few hours after I went to sleep, I woke up with horrible shakes and chills and drenching sweats. My BP was low (but low-normal for me: 80/50), HR was a little high, temperature was 96 degrees, and O2 was 95%. It was 7 terrible hours that felt viral, like when I first got sick, but was probably mast cells, what with the swollen tongue and all. I finally got up to do that thing that other chronically ill people might understand: put on clothes in case I had to go to the hospital. On a normal day, I might sit around in my dressing gown with unbrushed hair all day, but when there could be a chance I’m going to the hospital, I try to make sure I’m not naked. I also make sure I’m not wearing anything I care about — I’ve lost clothes in the hospital before.

Strangely, I had almost an identical episode on this exact day last year. Here’s a screenshot from my calendar:

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After the most stable autumn and winter I’ve had since being sick, this downturn–this piling on of relatively rare, red-flag symptoms–scares me. My sleep has gone to hell in the last few weeks, which compounds everything by stealing energy and increasing pain. Plus, I’m exacerbating things by holding tight to my “best winter yet” narrative and by fighting so hard to maintain the level of functioning I’ve had this past year, rather than pulling way back and resting aggressively.

My ND says the naturopathic philosophy is that you will go back through previous stages of health and experience earlier symptoms as you travel the healing journey back to where you once were. I’ve latched onto this theory to anchor myself and dispel some fear. The resurgence of all these old symptoms means there has been a shift in my system — but maybe it’s a positive shift, even though it doesn’t feel that way. I’ve gained weight since starting IVIG, over 8% of my norm, which is not insignificant, especially on someone as small as I am. I’m at my heaviest since being sick and, although I’m not overweight, I’ve lost muscle tone the last 7 years and I don’t have the physical ability to burn fat and build muscle, so I hope this trajectory doesn’t continue. My doctor thought this, also, pointed towards a shift in my body: maybe I’ve started absorbing nutrients better. Acne is coming back a little, too. Maybe my hair will grow back! Or the next thing will be that I’ll catch a cold for the first time in 8 years… (And because I really don’t want this to happen, no matter what it might indicate about a calming immune system: knock on wood, toba, toba, spit over shoulder: patuey.)

But, as I lie here, shaky, with my swollen tongue, chronicling these last few weeks (minus the osteoporosis diagnosis and extremely elevated post-antibiotics SIBO test results, both of which I’ll have to write about at a different time), none of it feels like a positive shift and I worry about what I should eat so as not to add to mast cell reactivity and whether I should stay in bed and lie still, even though longed-for Seattle sun is streaming through the windows and I’d love to make some breakfast and sit at my table watching Riley lounge in the grass, soaking up the rays, and the hummingbirds diving around our feeders.

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First 911 call since being sick.

We had to call an ambulance this morning for — are you ready for this unbelievable fact? — THE FIRST TIME SINCE I’VE BEEN SICK (absolutely sick and disabled by M.E.; I was fully functional with MCAS for a decade beforehand). And I need the help of all you big brains to figure out the mechanism behind what happened. This is a long post because I want to track exactly what happened. I appreciate your reading this and your thoughts.

My main question is: What can cause sudden bradycardia and loss of consciousness, but not significant hypotension (nor hypertension)? Here’s the back story:

I have a history of anaphylaxis and it almost always happened during my period, usually on the first day, usually after drinking alcohol. I also have a history of collapsing at the start of menstruation, this happened many more times than the full-blown anaphylaxis and often seemed to be triggered by a bowel movement in the morning. The collapsing we’ve called vasovagal syncope, the theory being: vagus nerve triggered by bowel pressure + very reactive day = collapse. I sometimes lost consciousness, but I always was immobile, grey pallor, yellow lips, glazed-over, unfocused eyes, covered in sweat, heavy breathing, hypotensive, bradycardic. What was NOT typical of vasovagal syncope, according to doctors, was that my body didn’t bounce back: my HR did not rise to compensate for the low BP and my BP didn’t come up once I was supine. It usually resulted in ambulance trips to the ER for fluids and at least once I got IV morphine for severe dysmenorhhea (I can’t have any morphine-derived meds anymore).

These were my main health issues before M.E., I felt normal otherwise and pretty much blew them off. Incredibly, they haven’t happened since becoming sick in 2011. My dysmenorhhea actually got much better. Since being sick, I’ve often had bad mast cell reactions and worsening of ME symptoms on the first day of my period, but no collapsing with my husband terrified, calling 911. I thought it was because I’m more conscientious about hydrating and salt-loading.

I was spotting yesterday. My period came on in earnest in the middle of the night, but what disturbed my sleep repeatedly was a viral feeling of sick chills every time I changed positions. Chills and shakes enough to wake me. Then the period cramps started, much, much worse than normal, incredibly painful on the left side. The only thing I could think was maybe it was a ruptured ovarian cyst. I was moaning and crying out with the cyclical cramps, trying to find a position that eased it, my dog Riley clawing at me and burrowing under my body to help. My husband got me a hot water bottle, 2 acetaminophen and a benadryl. Then I took a turn for the worse: I was shaking badly, became nauseous, very weak, drenched in sweat (all the symptoms listed above). We took my vitals: BP was 86/49 (low, but normal for me), temperature was 97 (low, but normal for me), oxygen 96, but my HR was 48 — very abnormal for me. I’m usually 68ish at rest.

My husband got me apple juice in case I was hypoglycemic (it was too much of an emergency situation to check my blood sugar), salt water for my blood pressure, and started to call 911, but I said no. What could they do? Besides charge us thousands of dollars that we don’t have. I’d taken the 2 medications I could take, I could give myself fluids at home with my safe saline, and I didn’t want the two of us sitting around in a building full of flu and measles for hours on end, waiting for blood work and a vaginal ultrasound that would show nothing. But I kept getting worse and knew I was about to lose consciousness (even though I was still in bed and hadn’t even tried to stand up). I was starting to be unresponsive, so my husband called the paramedics.

By the time they got there (3 emergency response vehicles, 6 EMTs!), I’d come back from the edge a bit and was able to talk. They were concerned with my low BP, but I assured them it was normal for me. They did a cursory check of my heart and were concerned about the bradycardia, but said they didn’t see any rhythm issues. They tried to persuade me to go to the hospital, but I said no and signed a waiver. They didn’t want to speculate beyond dehydration (they pointed out that people aren’t realising how dehydrated they are in the current very dry Seattle Snowpocalypse) and possibly needing tests of my reproductive organs. She said, “It’s alarming to lose consciousness while lying down, it’s alarming how low your blood pressure is and it’s alarming that your heart rate isn’t responding to your low blood pressure.” <– That’s what I want to brainstorm.

It was definitely caused by the first day of my period, as usual, but what is the physiological mechanism? What might typically cause sudden bradycardia? What can cause a low HR + low BP (if you take the paramedic’s position)? Or what can cause a low HR + normal BP (if you consider my BP is normally low)? How does a reaction to my period explain this? Could it be 100% pain-induced? If it’s a mast cell reaction, I would expect a high HR and an abnormal BP. Why would I pass out when I’d been lying down the last 9 hours? Why would I pass out with my BP around my normal? Can a low HR cause loss of consciousness without BP dropping significantly? Is this cardiac syncope? Could I have cardiac syncope without knowing I have heart issues? Or autoimmune autonomic dysfunction? Or, once again, adrenal insufficiency? Does losing consciousness usually make breathing labored?

By the time the paramedics left, I was very shaky, but I knew I wouldn’t pass out and my husband helped me get up and hook up my own fluids. I went to bed freezing, with 2 hot water bottles, all my clothes on, under covers in a warm room and it took hours to stop being chilled to the bone (why was I freezing?). When I woke up, finally warm, my HR was 76 — almost 30 bpm higher! I’m still shaky, have a very bad headache, and my heart is jumpy with some palpitations, but completely different from the half-dead, exsanguinated feeling of the bradycardia.

Any ideas are appreciated. I have a routine follow-up appointment with my GP on Tuesday and I’d like to ask her for any tests that might be important. Cardiac work up?

Lastly, I want to mention that it’s REALLY hard not to believe in retaliatory chronic illness gods — yesterday I started writing my first blog update in almost 5 months, it is incredibly positive (“my baseline is higher! I’m able to do more!” etc.) and I stopped myself from writing my usual “gods, cover your ears” and “knock on wood, toba toba” because I’m stable, I’m not as fearful of being knocked down, it’s superstitious nonsense… and then this happens… the first time in 8 years… It just seems a little coincidental. And makes me sad.

Superstition Ain’t The Way

Agh, I can’t stand it, I can’t just leave you sitting with that bad. I tried in earnest to let my last post hang out here in the e-niverse, sullying the e-tmosphere, because that’s my reality and it is uncomfortable and why shouldn’t it fester there on my blog’s home page for all a few to see? But it’s like a little lead weight in the back of my brain, so superstition be damned: I want to shout about what a good week I had. I can’t believe such a baby dose of immunoglobulins is making a difference, but it seems to be. This is so exciting. Here’s my week:

Last Thursday I was in rough shape. My period was due and I hadn’t slept as per usej, but I drove to my myofacial therapy appointment, which is 4+ miles away. That is twice as far as anywhere I have driven in the last 3.5 years. I credit my friend Jak for this because I was thinking about how she has to drive everywhere where she lives and it gave me a little push. I also have been doing our finances for tax season and saw that I spent $650 on Ubers (taxi service) in 2015–solely to get to/from healthcare appointments–so that gave me another incentive to drive myself (truthfully, I probably shouldn’t have driven. I wasn’t all there–not quite present enough–and doubt my reaction times were optimal, plus I got a bit lost, but I’m proud of myself for pushing my envelope). Oh, and I stopped by a grocery store on the way home! Very briefly–to buy chocolate Easter eggs–but still!

I had three complicated things I needed to mail, so, Friday, I drove to the post office for the first time in almost 4 years and spent quite a bit of time standing at the counter, talking to the postal woman, boxing, taping, addressing etc.

Family love at the cemetery.

Family love at the cemetery.

Saturday, even though my period had just started, I was still able to go to the cemetery on my scooter with the boys and husband. I want to take a moment here to remember the first few times I went to the cemetery on a mobility scooter in 2013, a year after being housebound. I wept looking at the trees and feeling that freedom, then I almost passed out from the exertion of a 2-sentence conversation with some people we ran into and then I went home and paid for the jostling of my bones with days of pain. On this very day in 2014, I was struggling through the aftershocks of a cemetery trip that were worse than anything I deal with now: 

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Easter Sunday I wasn’t doing too well, but I still managed to put together a treasure hunt for my husband (with the aforementioned chocolate eggs), which involved walking all around the house and up and down stairs, planting clues. I did a “Find It” treasure hunt for the dogs, too. Easter isn’t just for kids.

Monday, I did laundry (no folding or putting away, but still…), talked to my friend for 1.5 hours (he did most of the talking, which is good because, although I’m not drained as much by prolonged conversations, it still definitely hits me hard) and then I drove to the dog park with the boys… by myself… and actually walked a little bit… *Pause for gasps of shock and awe.* I’m going to take another minute to remember the first time I made it to the dog park after those long horrible months, years: My husband drove, of course, and I walked excruciatingly slowly to the gate, feeling winded, heart rate through the roof. I made it inside and then sat on the ground just inside the gate. When somebody I knew tried to talk to me, I nodded and smiled feebly and then looked at my husband imploringly until he deflected the conversation away from me. The memory of that effort–and the fear of the repercussions–brings tears to my eyes.

Tuesday, I had my infusion and, Wednesday, I drove to an appointment (close by)–on the day after my infusion, mind you.

Getting fluids in the garden.

Getting fluids in the garden.

We’ve had gorgeous weather this week and, although it certainly helps because I’ve been sitting in the garden for hours every day, I don’t think I can say it is the cause of my good week because the uptick started days before the sun shone. Thursday, we took advantage of the weather and went to the biggest, bestest dog park in Seattle, which is a ways away on the East side. I haven’t been there since my birthday last year in May and it was such a treat to see Riley swim (while Bowie stood in the shade, panting and looking miserably hot, as if he wasn’t a short-haired breed that came from Africa). We spent an hour and a half there (I had my scooter, so didn’t walk) and, when we got home, I started cooking lunch. I didn’t even feel the need to rest. I better add these: !!!!

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“Ducks, ducks, ducks, gotta get the ducks.”

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“Don’t make me go out in that sun, Mama.”

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“Seriously? Another photo? Hurry up, there’s hardly any shade here.”

I’ve been dragging again the last few days: headache for the first time in a while, very stiff neck, muscles feeling heavy and painful, slightly sore throat, sensitive to sound etc. Probably because Friday I started to write this post about having a good week and the gods’ ears perked up. BUT, I’m dressed, I’m sitting outside, I’ll cook something in a bit, I’m cheerful. I’m not in bed, sick, poisoned, despairing. I’m functioning. I’m even writing.

So, there. KNOCK ON WOOD, TOBA TOBA, BAD HARVEST, PATUEEY OVER THE SHOULDERJust let this be. My bowels are a nightmare, my sleep is horrific, my brain packs it in on a regular basis and my stamina, energy and strength are still about 1/4 of what they used to be. But 1/4 is better than 1/10. I’ll take it, gratefully.

Title Credit <— click on it, go on, it’ll make your day better. 😊

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Mount Rainier (taken from the car window while speeding down the highway).

P.S: Dear friends, please forgive my ridiculous shiteness at answering your comments here on my blog. I appreciate each and every one of them and I’m humbled that you read my rantings at all, let alone take the time to comment. It really means a lot and I’ll try to do better. Thank you! X

Finally getting the first immunoglobulin infusion…

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The IgG infusion didn’t happen. They called me and said they were missing some small tube or something that was needed for my pediatric dose. It’s a little frustrating since they had literally months notice, but they have been excellent through this entire process–communicative, understanding, informative–so, I’m not annoyed. They asked if I’d like to do last Thursday instead, but I didn’t want to risk any reaction with my period, which came early last month. All I know for sure about anaphylaxis and angioedema is that they happen during a perfect storm of triggers (food, mood, hormones, hydration, pain) that is very hard to predict or control, but almost always involves my menstrual cycle and that is the one thing I can avoid. In the end, my period did come early, so I’m glad I made the choice to wait on the SCIG.

Today is the day. The nurse gets here in a few hours. I’m not out of bed yet. I’m in a lot of pain today and I was awake in the night with terrible vertigo. Every time I turned my head and changed position, the room lurched and woke me. I think it’s probably from the full dose of Zyrtec and Zantac I took yesterday, which I’ve never done before, but it could very well be payback from the 4+ hour journey to the dysautonomia specialist two days ago (more on that anon).

Anyway, the ball is rolling, the die has been cast, the airplane doors are closed (that’s what I used to tell myself when I was nervous about flying–once the doors are closed, it’s out of your hands, so no point in fretting anymore), so it’s happening and I am focusing all my attention on how incredible it will be to have a treatment that might help me feel better. Honestly, I’m dreading the premedications (Benadryl, Prednisone, Zantac, Tylenol) more than the IgG. I already know they do a number on my sensitive, unable-to-detox body.

Please wish me luck and send good juju this way. It makes a difference, I know it does. Thank you for holding me up. As Clarence said, “Remember, no [wo]man is a failure who has friends. Thanks for the wings.” ❤

Addendum: it just occurred to me that I didn’t specifically tell the infusion company to tell the nurse not to wear perfume, so I called her and she said, “Oh, I do wear body spray because I hit menopause and I can smell myself.” OMG. Body spray? She kindly said she would stop by her house and take a quick shower.
“I buy whatever shampoo is on sale, so I hope it’s not too smelly,” she said.
Gulp.
“No, I’m sure it’ll be fine.”
She then said, “I understand about sensitive patients. Remind me to tell you about the lady who was severely allergic to cats.”
Oh, for fuck’s sake.
“I’m very allergic to cats,” I told her.
“Oh, I have cats, so I’ll change my clothes, too.”
This is a nightmare.
She ended with (I kid you not): “I’ll tell you some horror stories when I get there.”

I’m vacillating between guilt at putting someone out (she was SO nice and sweet), frustration at my ridiculous body and total disbelief that a home-care nurse would wear body spray to visit patients and that the office didn’t explain my sensitives to her (they also didn’t tell her about my history of idiopathic anaphylaxis or that I have two big dogs. She said she just got a name and address). Please please please let this go okay.

Second addendum: the nurse is incredibly nice and lives very close to me, so the shower wasn’t a big deal and she doesn’t have a heavy smell at all. We’re half way through the IgG and the saline fluids. All good so far. 💪

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That's my abdomen--just one site for such a small dose.

June Update

It’s been a while since I’ve had the energy to write an update. As usual, I have a lot to document in terms of doctors and tests, but, overall, not much to report on my life and illness. My mother was here from Ireland this past week and that was, by far, the highlight of the last 4 months. 6 days seemed like 6 hours, though, and I’m left feeling a bit barren after her departure, like there are tumbleweeds blowing around inside my chest and hollow silence echoing against the inside of my skull.

I’m still housebound besides healthcare appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this because I’m walking more steps than I have since 2012. I regularly hit 2,000 on my pedometer, which does wonders for my mental well-being to think there is forward momentum. However, the flip-side is I have had more severe muscle pain and out-of-character joint aches. I am stiff in the morning and try to make myself put on compression stockings and a back brace if I’m going to stand in the kitchen for any length of time. I know I should scale back movement because, when I do, the muscle pain is better, but I’m really grasping onto that measurable progress for dear life.

There are other slight improvements. My sleep is still better than it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few months earlier this year, which is utterly life-changing. My resting face goes from this :twisted: to this :? .

There are still, always, a lot of daily debilitating symptoms. For 3 full weeks after my birthday outing, I was not doing well. My flu symptoms came back and that always alarms me — chills, sore throat, extremely heavy muscles, pain. I also had a few bouts of the worst vertigo I’ve experienced since my tilt table test payback. One night it came on so quickly and viciously, I fell over and hit the floor on my way to the loo from bed. I was moaning out loud from the queasy out-of-bodiness, which is unlike me, and I was reminded again of Laura Hillenbrand and how unrelenting vertigo could possibly be the worst imaginable symptom.

Hair loss hasn’t stopped, but is better than last year. Or the short, choppy cut disguises it more. My eyes are their usual nightmare of blurriness and sore extraocular muscles, even though I am regimented about (gently) scrubbing the lashes and using preservative-free tears throughout the day. Tinnitus and skin are still bad, my neck is still banjaxed. I am still spending about 14-17 hours in bed each day. I guess that’s a bit better than last year.

Finally, there is no real change in my worst symptom: Brain Drain. Which doesn’t describe it. I’ve been trying to articulate this symptom for years — to doctors, to my husband, my mother. It’s not brain fog. What I call brain fog feels tired and cloudy, causes effort to recall and calculate things. My Buzzy Brain is like Stephen King’s The Long Walk: if you can imagine being made to walk until you physically drop, but then transfer that body feeling to the brain. The same way muscle exhaustion is physical, my brain exhaustion feels physical. My brain can’t take one more step to do anything. Can’t read, write, speak, hear. It comes on gradually, so I usually find myself wading through the quicksand of a conversation or article, slurring or rereading the same thing over and over. I get testy, dizzy, weighted down by head pain and then realise, Oh, duh, time to go to bed and stop everything. Not being able to push through the brain problems (just finish this sentence, this tv show, this meal) is much more depressing than not being able to push through the physical limitations. Take my body, just, please, leave my mind.

The outcome of this is nothing ever gets done. I never finish tasks and months slip by. I also never seem to get going on any plan of attack to conquer the myriad of abnormal test findings: candida, low immunoglobulins, high cholesterol, reactivations of viruses, methylation problems, high mycotoxins. There’s always a bigger fire to put out — the poisoned nocturnal reactions, the crashing blood pressure, the death of my bowel — before I can carefully address less acute problems, while tip-toeing through the minefield of menstruation mast cell instability. Although, given my track record, maybe the best treatment for my body is no invasive treatment at all, just lots of pacing, meditation, good food and the pursuit of laughter.

The few things on which I am actively working are my hormone deficiencies and my tanked thyroid (as per usual). Since last September, I have now quintupled my levothyroxine (T4) and tripled my liothyronine (T3) and nothing has changed. I’m spending an absolute fortune on compounded meds, hoping my body will absorb them better than the generic, affordable ones, but, so far, no dice. I will update soon about my new, wonderful endocrinologist and her thoughts (as well as my other doctor visits).

So, almost 3 years and 8 months sick and that’s where I’m at. If I could find relief from the social isolation and financial instability, there could be some sort of life here.

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But, as it stands, I take my joy from the incredibly beautiful spring we’ve had here in Seattle and every opportunity to lie outside in the garden oasis my husband has created and see my dogs run in the park.

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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? 🙂

Doctor Love/Hate

A few weeks ago, I had the follow up with the rheumatologist I saw in January. The one who came highly recommended by multiple doctors I’ve seen. The one who spent over an hour and half with me at our initial appointment. The one who wrote the most thorough and accurate notes on my history and even sent them to me. The one who ordered spine x-rays, a DEXA bone scan, blood work for inflammatory bowel disease and who did a quick ultrasound of my shoulders. The one who knew about the pretty much unknown mast cell activation disorders and even knew most of the tests to order. The one who wrote a book called, “You Don’t Look Sick.” … So, you’d think he’d get it.

At one point, he asked, “Why are you in bed so much?”
I wasn’t sure how to answer. This was my second appointment in a row; I’d previously spent a useless hour with my therapist, not having anything to talk about and feeling out of place. Maybe my brain was ticking over even slower than I had realised.
“Because I’m sick…”
I thought he understood my illness because of the thorough chart notes, but I’d have to reread them. Maybe he didn’t understand the key part about ME and post-exertional malaise (second worst description of anything, ever, after chronic fatigue syndrome). Maybe he didn’t quite get that my battery dies very quickly and, if I push through, I’m in a world of hell and the battery never quite fully goes back to where it once was.
He said (and this is a direct quote), “If your hope for the future depends on getting disability, you’re not going to get out of bed.”
And then my brain blew up.

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I know many, many people have dealt with this sort of thing before — this blatant skepticism about their illness — but I hadn’t. Nobody had ever questioned me to my face. I didn’t really hear anything else he said after that because I did a white-out with fury. This manifested itself with me bursting into tears, unfortunately. I told him I wanted to make it clear that I wasn’t in bed to try to get disability. He said something along the lines of: “It may not be that you’re a malingerer [I remember that word clearly], but that you subconsciously are staying in bed because you need the money.”
Wow.
I was raging. After waiting two years to apply for disability in the desperate hope that I could go back to work… after going from a happy, high-functioning person to practically an invalid… it was too much to think this might cross somebody’s mind. Why would I want to give up my whole life to get 1/10 of the money I used to make? I cried the whole way home. I kept thinking about it and crying the whole evening. Granted, I was premenstrual, but my anger can’t come out in yelling and stomping anymore, so it just bubbled out in tears. Would he have said that if my husband were with me? Would he have said that if I were bedbound with cancer?

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There was slight vindication when he told me I had to try increasing my steps and I told him I have: from 500 in January to 1500 now.
Then he said I had to try “bicycle yoga”, lying down and I said, “I do! I try to do yoga poses and gentle stretches whenever possible.”
Then he said, “You need to come in here with a list of your current symptoms, your meds, your questions and concerns.” I waited for him to finish drawing an example of the page he wanted me to write and then I told him: “I did — it’s on the back of that sheet of paper.”
“Oh, I didn’t look at that,” he said. “A+.”

Amazingly, after this conversation, he told me my clinical diagnosis was mast cell activation syndrome (MCAS) and prescribed Cromolyn.

I smoldered for a week and then went to see my therapist who works in the same clinic and has known Dr. O for 37 years. I let loose on him. I railed for a full 45 minutes and was completely supported and validated. He said he’d seen it happen before and that, typically, when Dr. O is called out on his behaviour, he is blind to what he did and remorseful. He read me the notes that Dr. O had written and they were great — he wrote that he wanted to treat me for MCAS and also continue to look at inflammatory conditions, that I wasn’t depressed… There wasn’t a mention of ME in the notes and that’s how I wanted it. I went to him in the first place for his diagnostic talents, to have someone search for other possible answers. So, I’ve decided to give him another chance. My therapy session completely calmed my outraged soul and I’ve let it go. I think I will write Dr. O a letter when I feel up to it, explaining professionally why he was bone-headed and offensive. I’m actually looking forward to seeing him again, so I can be the calm, assertive person I normally am with doctors.

So, about MCAS: I haven’t dealt with scary symptoms (anaphylaxis, tongue swelling) in years and I react terribly to most medications, so I’m hesitant to start treating with mast cell stabilizers, histamine blockers or other anti-inflammatory drugs besides Prednisone. However, I wonder how many of my daily symptoms could be caused by mast cell problems (GI issues, bowel swelling, headaches, fatigue, brain fog, sinuses, pain etc.), so I’m also excited to have this diagnosis and the treatment options available. There’s also a teeny tiny part of me that whispers, What if your only problem is MCAS? What if mast cell problems caused everything from anaphylaxis until now? I don’t believe that — of course it’s multifactorial and involves many different pathways: immune, neurological, endocrine, gastrointestinal, vascular — but, there’s still a seed of excitement that something might make a difference.