Tag Archives: vertigo

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On the edge of nobody’s empire. 

As I came into consciousness this morning and rolled over, before I’d opened my eyes, I felt the room tip sideways and then slosh back again. I tried to look at my phone to see the time and my eyes wouldn’t track properly. Like marbles rolling uncontrolled, I couldn’t make my vision focus on one point. And, in an instant, the fear collapses in on me, crushing my lungs, sucking all the air and hope out of the room. I wonder if the vertigo is caused by the way I slept – something physical tweaked in my neck – or my new thyroid medication that I started yesterday, or did I do too much decorating the tree? Was it the drop of milk in my tea? I wonder how long it will last and does it signal another relapse. Having the borders of my world change from the downstairs sitting room to the four walls of my bedroom seems immeasurably cruel. Facebook is a lifeline normally, but torturous today. Christmas cheer, family fun, laughing faces, out and about doing things, going places, making new memories. One friend is going to a play in NYC, others are going ice skating in Glasgow, and a photo of a pumpkin spice latte sends me over the edge.

Every day, every hour, that my headache isn’t too bad or my brain isn’t too muddied and labouring, I focus on a future where I may be able to leave the house, interact with friends, have time elapse without a constant focus on my malfunctioning body and precarious health. But, as soon as there is a shift – my sleep disappears, my muscles are poisoned, this vertigo tilts the horizon away from me with the slightest movement and the room spins sickeningly even while still – despair eclipses everything. I feel like I’m buried alive, dragging my fingernails along the wooden coffin, screaming at the top of my lungs, while people deafly live and laugh six feet above.

This is where I was this morning when Jen Brea posted this song by Belle & Sebastian. I didn’t know the singer, Stuart Murdoch, had severe M.E. I needed this today.

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As I was about to publish this post, my two dogs just got past the gate to the upstairs and both bounded onto my carefully kept-clean bed with muddy boots from tearing around the garden, barking at the passers-by. It is the first time that they’ve been on my bed in three months and it felt like how it must be to have excited children, brimming with life-force, jump into your bed on Christmas morning, holding fistfuls of treats that crumble all over the sheets and wearing smiles of oblivious delight. Yes, their visit caused my world to teeter-totter even more violently, but it also lifted the heartache a little. This too shall pass.

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Going to California

After two years of being housebound, only leaving my house for doctors’ appointments, never going to a friend’s house, coffee shop, grocery store or cinema, never taking a drive to look at the ocean or waterfalls or mountains, my longest excursion being a 45-minute journey to a doctor out of town, I’m going to California to see Dr. Chia.

I made the appointment months ago after rereading No Poster Girl’s advice for the newly diagnosed. I’ve seen 40 healthcare providers in Washington and really, truly feel that the only substantial help they have been is ruling out brain tumours and cancer. Countless visits, horrendous amounts of money and unimaginable energy expenditure… all wasted, unfortunately. Although, my physical therapist has helped my pain but, alas, I must stop seeing him after Monday because my private health insurance coverage ends.

I based my decision to see Dr. Chia mostly on geographical proximity, assuming that we would have to drive wherever we went. His practice is in L.A. I also considered Dr. Peterson (Reno), Dr. Kogelnik (San Francisco) and Dr. Bateman (Salt Lake City). The latter would probably be my first choice, but it seems she really isn’t taking new patients. I battled between Dr. Kogelnik and Dr. Chia, but decided on Dr. Chia mainly because I knew more about him. I have followed my friend Patrick’s experience with Dr. Chia closely, have read Christine McLaughlan’s articles on Health Rising, and have watched all of the ME/CFS Alert video interviews with him.

In a nutshell, Dr. Chia is an infectious disease specialist who believes enteroviruses are at the heart (or gut) of ME/CFS. I will never forget reading Patrick’s account of his ME onset. He said he had surfed at a dirty beach, became ill a few days later, recovered and then got the Tdap immunization and, 5 days later, crashed with ME and never recovered. I swam in a lake in Virginia, came down with a GI illness a day or two later, recovered and then got the flu vaccination and, 11 days later, had acute-onset ME. We had such similar etiologies, although, I believe Patrick was otherwise healthy and, in my case, these came on top of a plethora of other issues such as working too much, never resting, lots of dental work, lots of traveling, bronchitis, vasovagal syncope, angioedema, anaphylaxis, unknown detox issues, IBS-C blah blah blah. But I knew the diarrheal hell was the penultimate cause and the flu vaccination was the shot that broke my immune system’s back. So to speak.

I was in such bad shape last December, I didn’t think there was any chance of my being able to keep this appointment. Five months flew by and my husband and I hadn’t discussed the logistics of the trip or renting an RV or whatever (I don’t even think he knew I had made an appointment), but, before I called to cancel (because, seriously, who goes to California to see a doctor for an hour?), I asked the good people of Phoenix Rising whether they thought I should do it. They were incredibly supportive and answered with an overwhelming YES! Uh oh. Really? But, at this stage, I’d have to fly. I assumed I’d never fly again. I don’t know what a flight would do to my symptoms, let alone the whole trip. So, I asked my family what they thought and they answered with an overwhelming yes and, not only that, but they all offered to help in so many ways: come with me on the trip, stay in my home to watch the dogs, research rentals, help with money, accompany me to the appointment, donate miles for a plane ticket etc. I was flooded with love and encouragement and, suddenly, for no other reason than I wanted to ride the wave of excitement, I decided to go. If not for Dr. Chia, for me. To know that I could leave this house. To create new memories — even hard-won ones — that aren’t these four walls, this bed, this garden. The truth is, I’m terrified and I know enough about Dr. Chia’s treatments to know that it may be a one-off visit and it will probably be a dead-end. But, I’m still going to do it. And I’m going to close my eyes everyday until my departure date and envision safe travels with stable blood pressure, steady legs, no vertigo, no headaches, comfortable body temperature, no chemical or food reactions, no collapsing or swelling or bowel issues, and good sleep. I’ll write more details in my next post.

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All Aboard the Brain Pain Train!

It’s been about a month since I wrote a decent update. I’ve been trying to keep my readers entertained with short posts, NY Times articles, and reblogs of others’ writing because I have been in a sorry state ~ mostly because of crippling headaches. I think I’ve said it before: bad headaches are, to me, the number one most evil and debilitating symptom of this disease. I’ve written about them before here and here and here. Don’t get me wrong, PEM is by far the most disabling and cruel aspect of ME (I will write a rant about this one day), but, it is somewhat controllable… Muscle pain can be beyond everything you’ve ever imagined… I’m sure vertigo, if bad enough, would be as incapacitating as these headaches… The complete loss of life force when your mitochondria simply can’t keep up with the energy needs of your organs is more handicapping and terrifying… But, none of those, in my experience, blot out existence like the headaches.

Not only do the headaches affect me, but my family has to tip-toe around, talking softly, closing doors carefully, opening soda cans outside, watching tv with headphones, jumping up to distract the dogs when they bark. One of my neighbours had their hardwood floors sanded and varnished during the last few weeks and I stayed inside with doors and windows closed, griping about the fumes tearing at my brain. Another neighbour seems to have purchased the loudest weed-whacker available and insists on using it on the patch of grass closest to wherever I happen to be sitting, whether it’s in the front or the back of our garden. I texted my husband (who was nearby, but I can’t yell out with this headache and I always try not to get up needlessly because of ME): “There is a $100 bill in my bag. Please, please go give it to whathisname and bribe him to stop that noise. When I get better, I’ll do his yard work for the rest of my life. Can you die from noise?” My husband reminded me that we have the loudest dog on the planet and, so far, nobody has given us any grief. So, I kept the $100 (a birthday gift) and turned my attention to being grateful I don’t live next to the airport or a nightclub or a war.

headache

The headaches alternate between throbbing aches and all-encompassing migraines with blinding auras. They are always accompanied by extreme noise and light sensitivity and never able to be touched by medications. On a day like today, I am able to function, but, as the hours progress, I become more and more grumpy, silent, and still. My body tenses, brow furrows, and I stop being able to communicate. On middling days, I move very carefully, I can try to interact wearing earplugs and sunglasses, staying well away from phone and computer screens. And, on the worst days, I can’t leave bed, I can’t speak or see very well, I have ice packs on my neck and eyes, I pant, I sweat, I moan.

This current journey into headache hell started 22 days ago. The worst of it was a few weeks ago and caused me to stop taking all drugs and supplements in an effort to abort the pain. The multicolored, zigzag aura disappeared and the headache lifted enough to function, but, even today, it’s still a doozy. It is the first thing I noticed before opening my eyes this morning. Ugh, headache is still here.

I had quite a few theories. It started with my period, so I thought it was hormonal, but has continued too long. I started Nasonex about a week before the headache came, so I stopped that (and won’t try it again now that it is “tainted” in my mind), but I’m still suffering 2 weeks later. I thought it was from stopping Pantanase nasal spray after using it daily for a year, so I started that again. I thought it was from the new bottle of Chinese herbs (which looked and smelled vastly different from the previous bottle), but I stopped taking them for 4 days with no respite from the pain. I thought it was from overdoing it in general, so I rested a bit more ~ to no effect. I thought it was due to my chronically messed-up neck, so I used my traction device, my tens unit, tiger balm, hot pads, cold packs etc. Nothing. From sitting in the sun? No, it’s still here on cold days. From being on the computer? No, it’s still here on days that I’ve mostly avoided the computer. All the strawberries I’ve been eating lately? No, I haven’t eaten any in over a week. I refuse to believe there is no reason. I don’t want to take prophylactic migraine drugs. I just want it to go away. So I can continue to enjoy my exhausted, stiff, achy, fluey, brain-fog-filled summer days.

I have a lot of other stuff to report on, but it’ll have to wait. Apparently, it was far more important for me to get some company on this brain pain train. Thanks for joining me!

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How My Illness Began … Part 1

[Although I’ve already posted an excerpt from my diary about those months at the beginning of my illness, I wanted to tell the whole story. It will have to be in increments because it is exhausting physically and emotionally to relive those days. But, I don’t want to forget them. Also, I realise that this was the beginning of what stopped my life in its tracks, but perhaps not the beginning of ME, so I’ll eventually have to write a prequel to this Part 1.]

I was sitting at our dining table at the beginning of November 2011, writing Christmas cards when I was hit with a wave of nausea, chills and exhaustion. Whoa, I’ve been at this too long, I thought. My husband was on the couch watching television, so I curled up on the recliner and fell asleep immediately. When I woke up an hour or so later, I knew something was very wrong. I was shuddering with chills, my teeth were chattering, I felt infected or infested.You have to come to bed, something’s wrong and I don’t think I’ll be able to make it back downstairs if I need you, I told my husband. I crawled to bed, he made me a hot water bottle. I was dressed, wrapped in a blanket, under the duvet with a hot water bottle, curled in a ball, shivering ~ practically convulsing ~ with chills. I tried for about half an hour to cover my ears, I thought if I moved my hand out from under the blankets, shifted my position in any way, I might die. I have found that severe chills are as debilitating as severe vertigo and severe pain. I fell asleep for a brief amount of time and, when I woke up again, I was drenched. There was sweat coming out of every pore in my body. And not just beads of sweat ~ rivulets of sweat. My bed was wet, I could have wrung out the sheets. Sweat ran down my legs, down my chest, pooled in my belly button, my back was slick. My ears were wet, my hair was wet, my knees were wet. I was flabbergasted. Never, ever had I experienced anything like this. Such an immediate and systemic response to a pathogen. I could only hope that this would be it and be thankful that the chills and sickness hadn’t lasted days. If the fever had already arrived and broken, then maybe this would be short-lived. I spent the rest of the night plunging in and out of fever dreams, shaking as violently as I had with the chills. In the morning, it subsided. I was spent, exhausted, traumatised, but I thought it was over. I was able to continue work that week. Besides being a little unnerved, weak and tired, I was able to get on with life. However, the chill/sweats cycle happened again a few weeks later… and a few weeks later. I finally went to my doctor. When this is happening, I told her, I feel like I’m dying. I know that sounds melodramatic, but, honestly, when I’m in the grips of it, it feels like there is absolutely no way I could manage going to work that week ~ maybe even month. It feels like I should be hospitalised. I asked her to test me for malaria because that was the only thing I could find in my research that had such debilitating, but cyclical symptoms.

As the end of the year approached, I got worse. I was pushing myself very hard at work, trying to wrap everything up so that I could take vacation days when my Mom visited. The episodes were occurring more frequently and leaving me progressively more sick and weak. I started working some days from home, dragging myself to the computer for 8 hours, over the course of the entire day, crawling into bed periodically when I couldn’t be upright anymore. Two days after Christmas, I was told the malaria test was positive, but they wanted to retest because I hadn’t traveled to a malaria country in over 7 years. My Mother arrived on December 30th. I was doing okay, I picked her up at the airport. That night, as we were sitting at the dining table eating soup, I was hit out of the blue with incredible vertigo. It was like being on a tilt-a-whirl, I gripped the edge of the table and looked at my husband, wide-eyed. Oh shit shit shit, WHAT IS GOING ON? Never, before or after, have I felt the room spinning so violently. I went straight to bed. I don’t really remember the next 5 days. I remembering waking up, hearing my Mother and husband downstairs watching the ball drop in Times Square. I lay in bed, nauseous, dizzy, chilled and sweating. I couldn’t eat, I clung to the walls walking to the bathroom, I just kept thinking, I don’t want to die. In the past, I had had food poisoning that could have killed me, gone into anaphylactic shock that should have killed me, passed out and had vital signs so low the EMTs’ field notes say they couldn’t get a blood pressure reading, but nothing made me feel like I was truly going to die like this did. I wrote goodbye letters to my family. I wrote down all of our passwords and account information for my husband, I wrote instructions for my funeral. I did all this with a pencil, lying on my side, under the covers, sure I didn’t have much time. At some point, in the middle of some night, my husband took me to the hospital to get my blood drawn because parasites are more evident in the middle an episode. But, from the beginning of the chills to the time they actually got around to taking my blood, 6 hours had passed, so I knew it was a wasted trip.
This took me a month to write. Stay tuned for Part 2.