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.

Body’s in Trouble and SIBO Test From Hell.

I am going to document this swiftly before the whole horror fades under the sweet joyous glow of sugar and carbohydrates. Besides the first few years of this illness, which has its own special place in the Hell Hall of Fame, the last few days preparing and preforming the SIBO test might have been the worst 50 hours of my life. There are 2 close seconds: the aftermath of a lumbar puncture, which gave me the 10 on my pain scale to which I compare all else, and a particularly harrowing bout of food poisoning, which I suffered alone on my brother’s bathroom floor for a few days, thinking I might die. But this weekend was worse than both. But let me back up.

My symptoms have been bad since coming back from California, particularly the last month. Immediately after our return, I had to contend with my period, which heightens everything a notch, including emotions. My husband went straight back to work 7 days a week to catch up with his landscaping jobs and the renewed isolation, plus being trapped indoors because of the chilly, damp weather began to take their toll very quickly.

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A week after getting back to Seattle, I got the tests done for Dr. Kaufman (the California doctor at the Open Medicine Clinic). I had 39 vials of blood taken in 2 days — the first day, we did 9 vials, but my blood sugar crashed, so the second day we went back downtown and I did the other 29 vials. I completely underestimated the toll it would take. That evening my blood pressure tanked and I didn’t feel good. It took a few days for the effects to wear off. Just in time for family to come over for my birthday brunch, which caused a bad (but short-lived) crash (I already wrote about this last month).
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Two days after that, I started to get a throat thing… one of those feelings that, in my old life, would have made me think I was getting sick. The last time I was sick — normally sick with a cold and bronchitis — was almost exactly 6 years ago. That boggles my mind. It is, of course, because I probably have immune activation, but it is maybe even more about being housebound, wearing my mask when I go to appointments in the winter and not letting sick people come into my house. So for 3 days I felt like I had strep throat, was completely couch-bound, stiff, sore, swollen and had a tight chest just like it used to feel before I got a chest infection. For 2 nights I slept over 8 hours, which should tell you right away I was being beat down by something different because I’m lucky to ever get more than 6 or 7 hours sleep. These symptoms of acute sick on top of chronic sick scared me. I have read so many stories of relapses and crashes caused by a common cold. I haven’t had any lung issues since the first year of this illness and, as a previous asthma/bronchitis/pneumonia sufferer, I am incredibly thankful that I don’t contend with those symptoms. So, I hit it with every tool in my virus tool kit, including IV fluids (so brilliant to be able to hook myself up to fluids; see my first time here) and it didn’t progress to a full-blown cold or flu.

The day I started to feel better, I did an immunoglobulin infusion. From that day on, I’ve had a headache. It has waxed and waned over the last 3 weeks, but yesterday it was in the top 4 worst headaches of my life. More on that in a minute. I’m not finished with the litany. A few days after the infusion, I stopped taking all of my vitamins, supplements and even prescriptions that aren’t essential. I needed to come off my candida treatment for 2 weeks before doing the SIBO test, so I just stopped everything. I thought this would be a good break, but in retrospect, perhaps it contributed to this past Very Bad Fortnight.

One thing I did not intend to discontinue was my hormone therapy but my doctor refused to call in my compounded progesterone prescription because I hadn’t seen her in person in 4 months, so I had to abruptly stop it in the middle of my cycle. Maybe it’s no big deal, but I’ve been taking it for years and it regulates my periods and calms my reactivity, so messing with my body and, more importantly, the difficulty dealing with my doctor caused a lot of stress (I didn’t want to see her until I had the test results back from the 39 vials of blood, so I implored her to extend my Rx, but it took her too long to answer and my period decided to come and then she only called in a few to tide me over until our appointment, but they wanted to charge me $2.50/capsule for such a small order, so I just went to see her (there was no discussion of my hormones and no changes made, so withholding the refill felt like blackmail to get a very sick person to make an appointment). Then it took 3 more days after our appointment for her to call the progesterone into the pharmacy… so I was ultimately off of it for 2 weeks. Sigh).

Speaking of my pain scale, the week before last I had a bowel spasm that was a 9. My first 9 since The Evil Calcium Headache of 2012. I have experienced a lot of bowel issues in my life — just the day before this spasm, I had experienced such vicious heart palpitations during an enema, that I thought I might collapse with vasovagal syncope — but I didn’t know this sort of pain was possible in the bowel. From an internal muscle spasm?? Seems far-fetched even now, having experienced it. It only lasted about 5 minutes, but for that eternity I couldn’t move from the bathroom floor where I had crumpled, I could barely breathe, I was making some weird, uncontrollable, primal, guttural, airless moan. If it had gone on a few minutes longer, I would have called an ambulance and probably would have agreed to morphine, even though I’m allergic to it. As soon as I was able to crawl, I did a castor oil pack and heating pad and the spasm eased up. The aftershocks and inflammation continued for days, however…

Right up until my period came and my chronic headache became a chronic migraine. The old kind that has me wincing at every noise and squinting at every light. The kind of headache that makes it difficult to move my eyes, like the extraocular muscles have swelled taught with inflammation. The kind that infects my neck and spine, so I can’t turn my head, bend over, cough, sneeze or poop without whimpering in pain. The kind that causes nightmares about loved ones getting their skulls bashed in and destroys sleep with constant throbbing wakings. The kind that causes my stomach to flip with every smell and my poor husband: “Please don’t put your foot down so heavily on the floor.” “Please don’t ever use that shaving cream again.” “Please don’t sharpen that knife or stir that pot.” “Please don’t smoke that cigar out on the porch because it sticks to your clothes.” … etc. I became very weak over the next few days, like the life-force was drained out of me. Muscles not working, hard to converse. This is a completely different feeling from my typical exhaustion or heavy muscles. This is how I imagine it feels if someone is on the ground, bleeding out.

And then, just like that, a depression switch was flicked in my brain. I’ve only been really depressed twice before, the worst was the winter of 2013 after I’d gone steadily downhill for 2 years and spent most of my time in my bedroom in pain. This episode wasn’t as bad as that — I am sustained by a bit more hope these days because I’ve had some staccato ups punctuate the continuous downs — but it still sucked. I’ve cried every day and had very black thoughts. The relentlessness of my symptoms have highlighted the improvements in California, making me terrified of what it means for our lives if my environment is keeping me sick. And the interesting/engulfing thing about depression is, it doesn’t matter whether you rationally know that things will be better on a different day or could be better in a different location, you still want to give up and end it all. Nope, can’t do this anymore, I’m too tired. And when that Black Cloud of Despondency starts to dissipate, like it has today (oh, thank god, please stay away), it seems ludicrous and selfish that you had those dark thoughts.

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SIBO prep meal

But let’s get to the crescendo… The last 50 hours… The prep for the SIBO test… If I was ever in doubt that my body doesn’t do well on a low-carb diet, this weekend proved it. It feels miraculous that I’m able to sit up and type right now, honestly. On top of bad physical symptoms, little sleep, no supplements and sadness, I started a 48-hour prep diet for a SIBO test ordered by Dr. Kaufman. SIBO stands for small intestinal bacterial overgrowth. I’ve done the SIBO diet and test once before and don’t remember it being very difficult (aside: my post is here and you can see that the National University of Natural Medicine has stolen my food photo for their website here, which I find highly amusing). For the prep diet, you are only allowed to eat meat, eggs, white rice and fats for 12 hours and then 15 hours of fasting, which doesn’t sound too bad except, if you are constipated (or in my case, the most constipated person I’ve ever met), you have to do the diet for 2 days before the fast. I eat all day and night — it steadies my blood sugar and maintains my weight — and, although I eat meat every day, I don’t eat a lot and I only eat about 2 or 3 eggs a week. So, this was hard. Friday night, I stopped eating at 1am. I was hoping I would wake up Tuesday morning without an appetite, which often happens in the mornings, but no luck, I was starving. I ate a scrambled egg with turkey. A little later I ate some rice and butter. Then chicken breasts. By the time my husband made some “meat broth” (no bones, cartilage, herbs or veg allowed), I was very nauseous — which is unusual, I have an iron stomach — but still hungry because I couldn’t physically choke down enough meat to fill me up and too much white rice without sufficient veg and starchy carbs causes my blood sugar to crash because of reactive hypoglycemia. The nausea was exacerbated by pain throughout my body, a pulled muscle in my back and my migraine ratcheting up. If I hadn’t prepared for this test for 2 weeks already, I would have thrown in the towel and taken steroids, acetaminophen and an antihistamine, but I had to shudder through it.

Yesterday was indescribable (but I’ll try). I woke up with my brain swollen, neck stiff and head shattered. It felt like that lumbar puncture headache: I had to be horizontal to function. And, of course, I was starving. The smell of the meat broth almost made me vomit. My arms shook as I force-fed myself an egg and turkey. Later, I ate beef stew meat and rice, but, again, not enough to fill me. I just couldn’t get it down. I spent the whole day in a weak ball on the couch. My husband had to half carry me to the loo because whenever I sat up, my limbs started shaking and I broke out in sweats. This was more than hunger on top of a migraine. I googled meningitis and encephalitis symptoms and actually considered going to the hospital. I’ve managed to stay out of the emergency room for the entirety of my illness, so I don’t consider it lightly. But, really, what could they do? IV fluids, which I can do at home; a spinal tap, which I’ll refuse; a brain CT, but I’ve had way too much radiation exposure in my life; an MRI, but I’ll refuse contrast; a blood test, which will be negative. So I stayed put. And, besides, I checked my blood sugar, blood pressure and temperature and, inexplicably, everything was stable. Actually, this made me a little more scared because I like having a reason for abnormal symptoms — something I can fix. The entire day, I kept saying to myself, “You’ve come this far, just 20 more hours… 15 more hours…” I couldn’t stomach anything after 6pm and I finally got to sleep at midnight, but woke up at 3:30am and 4am and then every hour, feeling sick and in and out of dreams about food. I got up at 7am and my head felt a bit better, but I was so emaciated and weak (I lost 3 pounds in those 2 days and I didn’t have 3 pounds to lose).

For the SIBO test, at least an hour after you wake up, you drink a lactulose solution and then take a sample of your breath every 20 minutes for 3 hours. Only 4 more hours. My kingdom for peanut butter on toast! It was torture. I was breathless and, with every movement, my heart rate skyrocketed. I’m not sure why I have to eat so much, so often, of so many foods in order to feel like my muscles and organs — even my cells — will function. It could be thyroid related: my metabolism is still revving too high. But then the icing on the cake … No, the cherry on top of the icing… The pièce de résistance of the whole month de hell: An hour after drinking the lactulose solution, my body responded how it always does to a shot of sugar without a meal chaser: my blood sugar crashed. No, no, no… We are in the 11th hour, I have been off supplements, I have gotten through the prep diet, please, body, do not fail me before I complete the test. I sat very still, tried not to expend energy, willed my pancreas and liver to do their jobs and release some glucose, but the shakes and my hammering heart… It was too much. I thought I might black out getting the phone to call my husband, my words were halting and stuttered, my vision tunneled as I tested my blood sugar. It was 57 and I was getting worse, I had no choice but to drink some apple juice. After only 3 ounces, I could feel my body stabilise. It was like those starving Naked & Afraid people who feel energy flood back into their bodies after eating a minnow (if you don’t watch that program, what are you waiting for?). I’d last about 3 hours on Naked & Afraid.

An hour and a half after the hypoglycemic crash, I got diarrhea. For someone who hasn’t moved her bowels in over 2 years without an enema, this is a big deal — body’s in trouble. I finished the SIBO test and wrote a note that I had to drink apple juice and all I can do is pray that they can glean something from my samples. As soon as I blew my last breath sample, I drank a huge mug of proper Irish tea with milk and ate a piece of banana bread. I moaned with every sip and bite. Potable, edible life. Then I ate a seed bar, some nuts, some melon. And then half an acorn squash and half a head of steamed cabbage. And an oatmeal raisin cookie. Now I’m sitting at the table for the first time in about 10 days feeling very grateful for no shakes, my normal-level pain, the food in my belly and the energy available to write this. I don’t even care that my churning, bloated, gassy bowel probably means I have SIBO and will have to take antibiotics. All I know is I will never do this test again.

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Best Endocrinologist Ever.

Every time I have an appointment with my endocrinologist, I hem and haw about whether I should cancel it. It’s on the other side of town, $50 round-trip in an Uber, it only ever lasts about 20 minutes and couldn’t she just look at my thyroid lab results and email me about whether to stick with my current hormone dosages? Well, each time I go, I am so grateful for this doctor (last week I told her nurse I would walk on hot coals for Dr. B) and I vow to come straight home and write an update so I can remember everything she said. I never have managed to do this and the visit summaries hardly mention anything at all, so today I’m going to write a general update of her treatment.

I’ve seen a lot of endocrinologists in the last six years and they have all, without exception, been kind of odd, stoic and monosyllabic. Until Dr. B. She’s vibrant and engaged (after seeing her, I always mourn my lack of brain energy a little more), listens closely, talks about her ideas out loud, thinks outside of the box and is interested in conditions not typically related to the endocrine system. Imagine that: a big hospital allopathic endocrinologist taking the whole body into account!

The first time I saw her a year ago, I told her my basic story (anaphylaxis 2001-2002, vasovagal collapse 2005-2011, thyroid goiters 2009, radioiodine ablation 2010, SICK 2011), assuming she’d check my thyroid and update my prescription as per usual — and she did, but she also ordered pituitary blood tests, a Cortrosyn stimulation test (CST) (otherwise known as an ACTH stimulation test — it measures how well the adrenal glands respond to ACTH), referred me to two neurologists — one that specialises in headaches and one that specialises in dysautonomia — and said we would consider placing a continuous glucose monitoring device to assess the drops in my blood sugar (good news is, my blood sugar crashes got much better, possibly because I am eating all foods again and have put on weight). No other endocrinologist had ever suggested any of these things.

I was dreading the CST because of my reactivity and intravenous injections of anything don’t allow me to start low and slow, but it was fine. I did my research beforehand (yes, they were they only using 1mcg of Cortrosyn; no, I didn’t need to fast; no, it didn’t need to be timed according to the follicular phase of my menstrual cycle; no, I didn’t need to be off bioidentical hormones; and, yes, my husband could be with me), so I felt comfortable about the procedure and the results were normal.

The pituitary testing showed low LH (luteinizing hormone), DHEA and IGF-1. Because of the latter, at our next appointment Dr. B ordered a pituitary MRI to “leave no stone unturned” (LOVE her). The MRI was normal, but she emphasised that it was less reliable because of my unwillingness to use contrast (I didn’t think the risks of a reaction outweighed the benefits of a better MRI — and she was ok with that). She also gave me a prescription for Florinef to see if it would help with my hypotension (blood pressure was 80/60 at this appointment). I trialed it for a month (starting at 0.0125mg (!!), working up to 0.1mg) and thought it might be increasing my headaches (but not my blood pressure, of course), so I stopped, but it’s still on my list to retry.

My thyroid levels have consistently been tanked for the last 6 years and at every appointment Dr. B would tweak my meds. I’ve gone from 50mcg/day of levothyroxine to 100 to 125 and from 5mcg/liothyronine to 10 and — this is exciting — when I told her my naturopath suggested much higher T3 and lower T4, Dr. B said, “I’m totally open to that, let’s try it.” 😮 Typically allopathic endocrinologists and NDs do not see eye to eye on treatment and optimal thyroid levels and often one doctor will be resistant to another doctor’s suggestions, especially when the suggestion comes from someone who isn’t a specialist. Dr. B has no ego getting in the way. So, we increased my T3 to 15mcg twice/day and lowered T4 to 100mcg. I really don’t know if it has helped, but she seems more satisfied with my thyroid levels. She told me to watch out for tremors, heart palpitations and insomnia, but they are all within my normal constellation of symptoms, so who knows (although, as I’m typing this, I realise that my quite-vicious nightly palpitations haven’t happened in a while– maybe weeks). She diagnosed me with “euthyroid sick syndrome” which essentially means your thyroid will stay sick until the underlying chronic illness gets better.

I saw a headache neurologist and a dysautonomia specialist (more on both of those in separate posts), but neither of them were the ones to which Dr. B referred me. And — another reason to love her — she had no problem with that and was still interested in what they had to say. Even better, when I told her the dysautonomia specialist didn’t have much to offer and essentially told me just to make sure I don’t decondition any further, Dr. B raised her eyebrows in surprise and kind of dismissed this, still interested in helping me fix this piece of the puzzle (those of you that haven’t done the doctor rounds might not realise that almost all of them tell you to simply exercise more (or gain/lose weight) (or take antidepressants), so I expected Dr. B to take the specialist’s assessment as bible and agree that I was just deconditioned). She suggested I do a growth hormone challenge (it involves a 17-hour fast, an 8am check-in and a 5-hour test where they give intravenous glucagon and then measure human growth hormone (HGH) response through blood draws) and said the worst side effect she’d seen was vomiting. I wanted to vomit at the thought of getting to a hospital at 8 in the morning. I went home to do some research; that was in July of last year.

When I saw her again at the end of September, I hadn’t done the HGH challenge and she didn’t give me a hard time at all. Three months after that appointment I still hadn’t found the nerve, so I emailed her a long message about my glucagon fears (those of you with mast cell/anaphylaxis/medication sensitivity issues can read my email* below for the reasons it gave me pause) which any other specialist would either not answer or reply that I should come in for an appointment to discuss. Instead, she sent me a very thoughtful, validating reply (not “For fuck sake, stop being such a scaredy-cat and do the bloody test since I’m the one doctor who is investigating all these things!”) and offered an alternative to glucagon — an insulin challenge test — which I agreed to … and then never did. They give you intravenous insulin, drop your blood sugar to 40 and then test HGH. I told her I was more comfortable with the devil I knew (hypoglycemia) then the one I didn’t. But, it turns out I’m not really comfortable with voluntarily meeting any devil. I’ve had my blood sugar drop into the 40s. It was absolutely horrific — one of the worst feelings I’ve ever felt. And, although they give you intravenous glucose right afterwards, I still couldn’t bring myself to do this test and subject myself to the crash when I thought they probably wouldn’t find anything.

So, I waited until my appointment this month — 8 months after she first wanted to investigate this avenue — and told her of my fears about the insulin challenge test as well. I expected her to just give up, to say there’s probably nothing wrong there, anyway, but she didn’t. She said there was an additional reason to do the insulin challenge (other than for HGH output) and that was that it can pick up a hypothalamus issue that the glucagon stimulation test can’t. Ok, I can get on board since it’s a two-fer. However, in another display of out-of-the-box-ness and medical generosity, she suggested I just try HGH injections without doing the challenge test. She said she had two other patients with the dyautonomia-mast cell-EDS trifecta (more on my EDS diagnosis at another time) and, even though neither one flunked the stimulation test, they tried HGH and had really good results. A friend of my sister-in-law’s had a lot of success with HGH and it has always been in the back of my head as something to try when I win the lotto. I read it cost thousands of dollars, but Dr. B’s prescription is “only” $138/month, so I’m on board. If/when I get the nerve, I can stop the HGH for a week and do the challenge test and, if I fail, insurance will pay for my prescription. An added bonus is my nurse who comes to my home every week (to give me intravenous fluids with my immunoglobulin infusions) can show me how to subcutaneously inject the HGH and I don’t need to go across town for a tutorial appointment.

Gratitude for good doctors! Wish me luck with the HGH.

Oh, I’ll be free… (immunoglobulin infusion success)

The first time I ever passed out was in a blood plasma donation clinic in Madison, Wisconsin. My brother, who had attended the University of Wisconsin before I did, tipped me off that they paid quite well for plasma, so every so often I would go spend a few hours in a big comfy chair with my vein tapped. On this particular day, I suddenly got very dizzy, nauseous and clammy and the next thing I knew I was coming to with ice packs under my neck and the chair tipped all the way back so my feet were in the air. I was sweaty and shaky, but I stayed until the plasmapheresis was over and got my cash. I didn’t think twice about it and continued to donate plasma until one day, during the prescreening tests, I came up positive for heroin. It turns out it was because of the poppy seed muffin I had for breakfast, but it didn’t matter, I was not allowed to give plasma again. One abnormal test and you were no longer a candidate. I never asked what plasma was used for and it certainly never crossed my mind that I, myself, may need a medication made from thousands of people’s plasma donations.

I’ve been getting weekly immunoglobulin infusions for 4 months now and it’s become routine (prior posts about this treatment can be found here and here). Not only routine, but to keep the success going, my superstition causes me to keep everything identical each time. I drink 4 liters of water the day before, the day of and the day after my infusions. Every Monday, I tidy up, run the Roomba and take a shower. I drink electrolytes, make my chicken and vegetable soup and don’t take any supplements. I take 3mg Prednisone, remove the saline bag and Gamunex from the fridge and wrap the fluids in my heating pad. When my nurse arrives, I get into bed and she hooks up the IV and sets the pump. Half an hour later, I take 650mg Tylenol, 25mg Benadryl and 10mg Zantac and then, before the Benadryl kicks in, I prep the Gamunex (I have to suck it from the vial into a fat syringe, which is surprisingly hard to do and painful on the hands). After the saline has been running for an hour, I insert 4 subcutaneous needles into my thighs. I could use wider tubing (for a faster infusion rate) or fewer needles, but, again, I’m sticking with what works, even if it’s not the norm for other patients. For the first few months, I did change where I inserted the needles, trying different areas on my belly and legs, but now I stick with the inner thighs which proved the least painful for me. I then fall into an antihistamine-stupour sleep and my (wonderful) nurse leaves once my husband gets home. In theory, she could leave as soon as she has inserted the IV catheter, which would be a half hour max, but because of my history of reactions and anaphylaxis, she’s extra cautious. By 8pm, I can disconnect the IV, remove the infusion needles and go downstairs to make dinner (this treatment makes me ravenous).

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When I first started infusions, I would have to take more Tylenol and Benadryl at around 9pm, my sleep would be horrid for a few nights from the steroids and I’d be dragging and headachy for at least a day afterwards. Recently, besides sleep, which will be my nightly nemesis forevermore, it seems, I haven’t had any problems. No need for extra meds, no dragging, no headache (except later in the week, which could be because I drastically drop off my hydration). In fact, it almost feels like my body is eagerly drinking up the infusions each week. In fact… the last 5 or 6 weeks have been… so nervous to say it (cover your ears, gods!)… good. Some of the best weeks I can remember. I feel freer — less restricted by pain, less confined by finite energy reserves, able to push boundaries without fear. My headaches have been more infrequent, my skin is better, my debilitating neuro symptoms have been more intermittent. I’ve been driving to nearby appointments again and I’ve been able to talk to the point of being hoarse, but without a weak voice. This last thing is very exciting to me.

My pilot brother was here on a layover and I was able to talk and laugh with him for almost 6 hours. My voice was tired, as if it were an unused-muscle, but it wasn’t weak in that way it’s been for years where I could barely contract the muscles to get the air past my vocal cords (or something). I was most definitely dizzy and deflated from the energy expenditure (my brother is a bottomless well of entertainment and conversation), but I didn’t have payback. Before he came, my brother texted me and said, “I’d love to see you, if only for an hour” and I realised how much worse I’d been the last time he visited in 2014: I remember wilting weakly an hour into our animated discussion. What glorious freedom to ignore the lightheadedness and tightening muscles, ignore the raised heart rate and blurring vision (because I’m still very far from normal), and not be terrified of repercussions. To have the option to push through! In the past, I’ve crawled to my room mid-visit — not out of cautiousness, but because there was no other choice and I always feared becoming permanently worse if I strained too much against the restraints.

This uptick could be because of a liter of IV fluids each week — it would explain why I’ve been having bad days later in the week — but I don’t think so. I usually feel kind of puffy and swollen afterwards and my blood pressure hasn’t increased at all; it stays steadily around 85/45. We’re considering experimentally doing some infusions without fluids and see how I get on, but I’m hesitant because, like I said, I like to keep everything consistent. Also, in the past I’ve asked so many doctors to help me with a trial of weekly IV fluids to see if it would help dysautonomia symptoms, now that I have them, I don’t want to give them up.

I want to mention one small thing that I’m incredibly excited about, which will sound so insignificant to most people. About a year into this illness, a few things happened to my body seemingly overnight and they always make me quite sad. The whites of my eyes changed colour, vertical ridges appeared on my once-smooth nails and I became allergic to my platinum engagement ring, which had been my grandmother’s and I’d worn 24 hours a day for years. Every so often over the past 3 years, I would put my ring on and, after a few days, I’d develop big itchy, sore bumps and discoloured skin and have to take it off again. I tried again just after Christmas and, 4 weeks later, I’m still wearing it with no problems. I want to add loads of exclamation points to this!!!!!! For me, that is so much more encouraging than IgG blood tests in the normal range or being able to walk more steps each day. My body has stopped rejecting something — a precious thing — that swiftly angered it over and over for so long. Rejoice. 🙂

Feeling emboldened, I asked my doctor if we could increase the dose or the frequency of my infusions or if I could add in a new treatment (antifungals, antivirals etc.). She said no — and I quote: “You are exactly where I want you to be.” That is so great to hear and such a reversal from my usual position of moving much more slowly than my doctors would like. She wants to continue my treatment indefinitely, raise my IgG levels as much as possible and then retest for infections in about 6 months to get a new baseline.

Insurance coverage always scares me; I’ve heard such horror stories of the battles to get treatment approved and, even after approval, actually paid for. My infusion bills were $943 for the first 3 months and I feel very fortunate that it’s so low. SCIG is the only thing that I can definitely say has helped in 4.5 years of being sick and, after 6 doctors refused to help me get the treatment, I feel immeasurably grateful to Dr. I for not only suggesting IVIG herself (I didn’t bother to ask because I’d given up at that stage), but allowing me to start on such a low dosage and increase slowly. No immunologist would have agreed to this. Yesterday I got this letter and almost wept (with joy). Thank you to the good doctors and nurses, to everyone that donates plasma (especially the broke college students) and even (in this case) to the all-powerful insurance companies who help perpetuate this dysfunctional healthcare system.

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I wrote this post on Thursday, the day after I’d driven to the dog park by myself, feeling victorious, and delighted my Bowie by walking further around the path than I have since being sick. I was still doing okay the next day and wanted to finally update everyone on my exciting progress.

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I’m not saying the chronic illness gods read my blog post draft and decided to tip the scales in the other direction because that’s just crazy nonsense, everyone knows that. But I did wake up not very good yesterday and I’m even worse today, with a bad migraine. Don’t get me wrong, I constantly remind myself that my husband used to have to wash my hair, but it’s still difficult to let yourself get a little bit excited (and in reality, “get a little bit excited” in my world means I’m thinking, “I’M GETTING BETTER! THIS IS THE YEAR! I’M GOING TO LEAVE THIS DISEASE BEHIND! I’LL BE FREE!”) and then have such a harsh reminder. Maybe the difference now is… I’m not scared.

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March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory 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 hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

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Yay! Beach!

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Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

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I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

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My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

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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).

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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? 🙂