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.

Hyperthyroidism

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After dealing with thyroid disease for almost 9 years, I finally, for the first time, can definitively identify the symptoms that are coming from being hyperthyroid. When they found the goiters on my thyroid and diagnosed me with Graves Disease, I didn’t know my very overactive thyroid was doing anything to my body. Unlike these stories you hear (like Dr. Amy Myers‘s), I was not telling an unbelieving doctor that there was something wrong with me. Quite the opposite. I had multiple doctors see my test results and look at me, perplexed: “You haven’t been shaking, anxious, losing weight? Have you been losing hair or had temperature problems?” Nope, nope, nope. I had been hyperthyroid for so long that I just thought of myself as someone who had thin hair and could eat a lot. Everything else I chalked up to my high-stress job: I was “type A”, I didn’t sleep well because I had a lot on my mind. I wasn’t anxious, I was BUSY. Give me the radioactive iodine already and let me get back to work!

A few weeks ago, I started getting very stressed out about my upcoming trip to California. So much to plan, rentals to find, plane tickets to buy, packing lists to make, food to prepare and freeze, prescriptions to fill. And for the doctor I’ll be seeing, I have to write my history, years of tests to sort, scan and email, release of records forms to ten different clinics… Of course I was feeling overwhelmed–especially with finding places to stay since every day that I didn’t make a decision, more options would disappear. My sleep had (has) gone to hell, I’m waking up with a sore jaw from grinding and my teeth feel unstable. I keep telling my husband, “There’s too much to do. I can’t breath, my heart is racing, I feel like I’m going to have a stress-heart attack.” I lie down to rest and my mind … my god, it just races and my body feels full of electricity. I give up, come downstairs and speed talk at my husband. The other night he asked me, “How do you have so much energy right now, you didn’t sleep at all?” And I said, “It’s not energy, it’s adrenaline, it’s stress. Once the trip is sorted, this will stop.” That was my explanation.

I lost a little bit of weight and thought it was because I cut back on eating so many nuts. But I’m eating more in general: one minute I’m complaining about how full and uncomfortable I am and, five minutes later, I’m back in the kitchen looking for snacks. I said to my friend, “I’m stress-eating.” That was my excuse. I said to my Mom, “My hair has started to fall out again and it never even grew back from before.” In my mind, I was blaming the hair loss on weight loss, even though I’m only down a few pounds. That makes no sense! Such a small amount of weight loss hasn’t caused hair loss, your thyroid has caused both, you myopic fool.

A week or two before I started to notice all of this, I had increased my thyroid medication from 100ug to 125ug a day. I’ve changed my dose so many times over the years, I don’t give it a second thought. I certainly don’t monitor my body’s reactions because I am an expert at ignoring the signs, even when they’re not subtle. Just like when I was a workaholic and feeling these same physical symptoms, but thought they were just from job pressure.

When the penny dropped (I was recently told that Americans don’t know that idiom — it means you put two and two together or the light bulb went off), that all of it is overactive thyroid, I was so excited, so soothed. And it was suddenly so very obvious. This is textbook. I’m not an anxious person, I never have been. My neuroses are canted more towards rumination and second-guessing. It’s a fine line, but this tight, breathless, buzzing, heart-hammering feeling in my chest is not normal and is awful. Such a sad thing to realise that, even after all this time, with my body yelling its head off, I blindly make excuses. I could be standing here, cold and jittery, with a handful of hair in one hand and my third sandwich in the other, saying, “Gosh, this trip planning is stressful.”

It reminds me of that scene in The Man With Two Brains when he’s looking at the portrait of his dead wife and asks her to give him a sign if his new girlfriend is bad news. After the ghost turns the room upside down, Steve Martin says, “Just any kind of sign. I’ll keep on the lookout for it. Meanwhile, I’ll just put you in the closet.”

I’ve been putting my body in the closet. I’m so happy to finally know without a doubt exactly what my hyperthyroid symptoms feel like and even happier to know I can fix it.

My Career in Healthcare.

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My view this morning… and all too often.

Recently, I was imploring my husband to find opportunities for couple-time in his schedule, get me out of the house so we could do “fun” things, spend time as a family… I wanted to drive around and look at the extravagant Christmas house lights over the holidays or see the Christmas ships; I wanted to visit Snoqualmie Falls, especially while it was raining so hard and the water would be high and dramatic; I wanted to drive north to look at flocks of snow geese; Seattle Symphony–anything! These things never happen and my husband said, “But every week your energy is maxed out with doctor appointments.” This is true, but this is calculated behaviour so I don’t go stir-crazy or get depressed. I can manage about 3 things a week and I’ve been scheduling about that many appointments every week for years. Hydrotherapy, strain-counterstrain, myofacial release, pelvic floor PT, acupunture, mental therapy, dietician, as well as specialist appointments, follow-up doctor visits, blood draws and testing. When I don’t have something scheduled, my attitude goes down very quickly. I think I might quite literally go insane if I shuffle around the house in baggy pjs for too long, alone, talking to the dogs, cooking meals for one, keeping myself occupied with paperwork, illness research, watching tv– especially in the winter when I can’t at least shuffle into the garden.

I tried to take a week off once and I caved by Thursday and made a massage appointment for the next day. I was crawling the walls, feeling ineffectual, lonely, angry. I wonder how anyone without a spouse or support system survives, or patients who are completely housebound or bedbound or neglected in institutions (not to mention much more horrific situations of war, solitary confinement, POWs…). It’s the isolation more than the confined physical space, I guess. My appointments give me “somewhere to hang my hat” as my grandfather used to say — a reason to get dressed, a place to go and have a conversation. My “rehab specialist” asked me if therapy was helping and I said, “I get dressed and I get to talk to someone.” He’s obviously done a lot more than that for me (for example, helped me find the best doctors and get disability), but my point was clear. Shared experiences are much more important than I realised. Like the outcast monkey that would just hang out on the edges of the enemy monkey territory even though he could be torn to shreds at any moment because the drive for company and community is that strong (I saw it on NatGeo, it made me weep).

My physical therapist and I talk about books, movies, music, tv shows, politics and I get to lie supine and motionless while he gently fixes my pain. How could I give that up? But I would–to do things with my husband. So, that’s what I told him–my husband–and he seemed confused, asked: “You can just stop those appointments? You don’t need them?” It never occurred to me that he didn’t know I scheduled these things to save my sanity, to save me from offing myself. Isn’t that obvious? Of course I don’t need to go to them! I wouldn’t cancel my immunoglobulin infusions, but all other commitments would be trumped by the importance of quality time with people I love. Husband and dogs first, friends next (actually, friend, since only one visits. Love you, Z!), healthcare visits last. That’s how I schedule my weeks. If I think there might be the weather to go to the cemetery with my boys on a day that my husband can do it, I will cancel everything else. I’ve exhausted the search for The Doctor Who Will Fix Me. I’m happy with my GP, endo and body people. I’ve seen the best neurologists. I don’t really think I would benefit from an immunologist, allergist or rheumotolgist. Maybe one day in the future I will see an ME/CFS specialist, but, for now, I’m going to focus on other things. So, my goal for this year is to encourage my husband to work a little less and redirect some of our energy into more joyous experiences. I can’t be very spontaneous, but I can schedule an “appointment” to drive out of town or an hour in a coffee shop or even play a game at home.

I Found My Worst Nightmare

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On this day four years ago, Facebook reminds me, we were shopping for a recliner. I’d been sick one month. I’d seen my endocrinologist, assuming that the low-grade fevers, violent chills and drenching, shaking, sleep-murdering night sweats were something to do with my post-ablative hypothyroidism. I didn’t go to my GP for another few weeks, only after every Google search of my symptoms came up with malaria and I started to wonder, what if?

I’ll never forget the feeling I had that day. It was a Saturday and I’d gotten up early and gone to a “Pure Barre” exercise class — my knee-jerk response to not feeling well was to exercise more (ignorant and hopeful during that first year, I booked three yoga and exercises courses and was never able to go once). I remember leaving that class and calling my husband in tears. My body responded in such a violent way, I could barely walk. I sat in my car for half an hour before I could push in the clutch.

I was in a daze when we were looking for a recliner later on the same day, shuffling around the stores, feeling weak and fearful of whatever the hell was happening to me. I remember acting like a caustic recluse when the salespeople wanted to engage me in their spiels, giving my husband that look that said “get this person away from me.” I joked about my outfit in this photo, but in reality I couldn’t shower or change before we went shopping — it was too much energy — and that was such an alien thing for me that I had an overwhelming feeling of doom. In truth, as much as I hoped it was my thyroid, I knew as soon as this illness started that it was something bigger.

Today I feel worse than I did that day. There was no pain then, no sore throat, no daily headaches, no brain problems, no muscle wasting. I still had a job and friends, I still drove, and ran around in the dog park and laughed every day. Sometimes I can’t believe it. Every day for over four years? Isn’t it meant to plateau? Am I not meant to acclimate and get used to this? Find a quality life somehow? I don’t hope to feel good again… not even average… I just hope to eventually get to a place where the good outweighs the bad and makes me feel like it’s worth continuing this fight.

P.S. To all my friends who have been doing this longer than I have, you inspire me to continue the fight. ❤

The Reaction Chronicles

I’ve been adding a supplement or trying a drug or testing a food every few days for a while, holding off before and during my period and if I am reactionary. I have recently had some of the most violent side effects to some of the most innocuous substances and I still find it incomprehensible. In my old life — that old Elizabeth who started 10 supplements at full dose on the same day — I never would have believed that such a small amount of something “harmless” could cause such an extreme reaction. Most notably, ElectroMix electrolytes paradoxically causing extreme blood pressure crashes, D-ribose causing extreme blood sugar crashes and Dr. Yasko’s All In One vitamin causing such terrible bone and muscle pain and cramping from the waste down that I didn’t sleep for three days and was considering going to the hospital and begging for an epidural.

I wanted to chronicle these trials so I remember. Here are my notes from the last four months. No note means no discernible reaction.

  • 4/26/14: Started CoQ10 100mg
  • 4/23/14: Started Thorn Bio-gest
  • 4/20/14: Started Now Foods Yucca
  • 4/15/14: Started Prednisone (bad sleep, swollen hands and feet, grumpy, facial hair, very bad tachycarrdia)
  • 4/13/14: Started Thorne Riboflavin 5 phosphate
  • 4/12/14: Started 2 Fish oil capsules
  • 4/10/14: Started Calm magnesium + calcium
  • 4/3/14: Changed Zyrtec brand
  • 4/1/14: Started Dr. Yasko’s All In One vitamin (unimaginable pain from waste down in bones and muscles; spine muscles jumping; worst reaction ever)
  • 3/26/14: Started D-ribose (terrible BS crashes)
  • 3/25/14: Started Desonide cream and tried Valium (horrific headache, stuffy nose, SOB)
  • 3/24/14: Started Dr. Yasko’s digestive enzymes
  • 3/22/14: Tried Baclofen (bit of a headache)
  • 3/21/14: Started Molybdenum and Vivite face wash
  • 3/19/14: Started Finacea, Cereve face wash and clindamycin lotion.
  • 3/11/14: Tried Electromix (terrible BP crashes)
  • 3/8/14: Tried L-glutamine (sickest day in months)
  • 3/6/14: Started Jarrow Formulas Acetyl-l-carnitine
  • 3/5/14: Started Zyrtec
  • 2/27/14: Tried egg (very bad next day)
  • 2/26/14: Tried fish
  • 2/24/14: Tried avocado
  • 2/21/14: Started Zantac (terrible stomach pain and nausea)
  • 2/15/14: Tried gelatin again (helped sleep)
  • 2/14/14: Tried Valium (headache, stuffy nose)
  • 2/12/14: Tried Cannabis pill again
  • 2/5/14: Tried Thorn Medibulk
  • 2/4/14: Tried Benadryl for sleep and gelatin (hungover next day)
  • 2/2/14: Tried Tizanidine
  • 2/1/14: Tried egg, avocado and cannabis oil (very bad next day)
  • 1/26/14: Tried egg (itchy throat spot, very bad next day)
  • 1/20/14: Tried citrus
  • 1/5/14: Tried soy (bad headache)
  • 1/31/13: Tried Ativan (dopey, headache, bad the next day)
  • 12/24/13: Tried Trazodone again
  • 12/19/13: Tried Trazodone again
  • 12/16/13: Tried Trazodone
  • 12/12/13: Started PS
  • 12/6/13: Tried corn (next day bad bowel and headache)
  • 12/3/13: Started probiotics

Other reactions of notable mention: