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| photo: Neeta Lind |
She did not look at me. She stared at her hands and mumbled into her voice recorder about brain tumors. She reviewed my Radiology results from Cinco de Mayo; I had my second MRIs completed on May 5th. My first brain MRIs were on April Fools' Day. Brain abnormalities! Ha! Wait. Not fooling? Sad trombone sounds.
She said to take an aspirin a day. Seriously. An aspirin. The aspirin was for the chronic transient ischemic attacks. Epilepsy, brain tumors AND mini-strokes? Awesome. An aspirin?
She stared at the top of her own scuffed brown leather shoes while shaking my hand goodbye. "I wish I could give you a magic bullet but I can't."
I smiled. I felt bad for her. She looked sad in her greying labcoat. I wondered if she did her own laundry. Why not send the labcoat to a dry cleaner? Her greying labcoat bothered me.
I wanted to cry but instead I found a new obsession to occupy my time. I spent the following weeks in dark and silence. I read thousands of medical journal articles and dozens of Neurology books. How could I save myself?
Brain surgery? Sure, I could rock a mohawk and a gnarly scar.
Other pharmaceutical drugs? Sure. I was willing to try a fourth (or was it fifth?) new anti-seizure medication.
The new medication my Neurologist prescribed, Topamax, helped at first. It masked the pain of migraines. I did not feel great but I was alive. I continued averaging a dozen seizures per day.
I filled out the paperwork that would allow my body to be donated to Science. It was a grim but comforting action.
My romantic relationship fell apart. I moved back into my own home. Fuck.
On May 26th I smoked medical marijuana for the first time. It was my mother's idea, truth be told. I did not expect it to help me. I expected it to exacerbate my seizures. It was worth trying once though, right?
Within fifteen minutes of smoking medical marijuana every symptom I had disappeared. For the first time in years I felt normal. Hell, I felt great.
These are my shorthand notes from that first day:
5/26/2014 MM1
+ Results. Migraine completely halted in 8 minutes. Muscular rigidity ceased. @15 min: Mental blocks ceased. Paresthesia ceased.
I cried before I went to sleep that night.
I added marijuana to my daily medical regimen. I began smoking once a day at bedtime. I read everything I could find about Epilepsy and medical marijuana.
I had one additional seizure cluster in late May. I had two seizures total in June. All seizures coincided with my known seizure triggers. I was NOT having random seizures. This was a major breakthrough for me, this was progress.
I stopped taking Klonopin nightly. I slept peacefully without it.
Severe side effects from Topamax hijacked my body soon after I began taking the drug. At first it was loss of appetite and taste perversion. Taste perversion is not as sexy as it sounds. Everything tastes terrible, especially everything carbonated. There is Science which explains why carbonic anhydrase inhibitors such as Topamax make things taste terrible but I won't get into that. I lost 20 pounds in May and I could no longer drink beer. It was a small price to pay for migraine relief.
The side effects increased in July. My gums eroded and bled constantly. Anhidrosis kicked in - my body lost the ability to perspire! My body temperature became dangerously high unless I remained in an air conditioned room. Anhidrosis made me claustrophobic; I felt as though my body was vacuum sealed in plastic and I was slowly suffocating.
Breathe.
My Neurologist quit in July without warning. Her voice mail coldly informed me to call elsewhere for care. I booked the next available appointment with a new Neurologist: September 4th.
I began tapering off of Topamax on July 19th. Potential withdrawal effects: seizures and death. Three times a day I smoked a miniscule amount of medical marijuana, just enough to calm my brain.
Three days later a 21 year old actress named Skye McCole Bartusiak died from Epilepsy related complications. Sudden Unexpected Death in Epilepsy (SUDEP) is reality. SUDEP is the number one cause of epilepsy related death in people with pharmaco-resistant epilepsy.
My Epilepsy is pharmaco-resistant. Every time a seizure is triggered in my brain a game of Russian Roulette is played.
Topamax withdrawals are Hell: shooting electrical pains body wide, Alice in Wonderland visual illusions and a torso covered in hives. It took two weeks for the withdrawal symptoms to fade away. My mouth stopped bleeding. My body regained the ability to perspire. Food and drinks tasted normal again.
Despite going through painful drug withdrawals I had zero seizures in July. Zero.
It is August. Zero seizures. I will be alive when my grandson is born next month.
Have I found my magic bullet?
She said to take an aspirin a day. Seriously. An aspirin. The aspirin was for the chronic transient ischemic attacks. Epilepsy, brain tumors AND mini-strokes? Awesome. An aspirin?
She stared at the top of her own scuffed brown leather shoes while shaking my hand goodbye. "I wish I could give you a magic bullet but I can't."
I smiled. I felt bad for her. She looked sad in her greying labcoat. I wondered if she did her own laundry. Why not send the labcoat to a dry cleaner? Her greying labcoat bothered me.
I wanted to cry but instead I found a new obsession to occupy my time. I spent the following weeks in dark and silence. I read thousands of medical journal articles and dozens of Neurology books. How could I save myself?
Brain surgery? Sure, I could rock a mohawk and a gnarly scar.
Other pharmaceutical drugs? Sure. I was willing to try a fourth (or was it fifth?) new anti-seizure medication.
The new medication my Neurologist prescribed, Topamax, helped at first. It masked the pain of migraines. I did not feel great but I was alive. I continued averaging a dozen seizures per day.
I filled out the paperwork that would allow my body to be donated to Science. It was a grim but comforting action.
My romantic relationship fell apart. I moved back into my own home. Fuck.
On May 26th I smoked medical marijuana for the first time. It was my mother's idea, truth be told. I did not expect it to help me. I expected it to exacerbate my seizures. It was worth trying once though, right?
Within fifteen minutes of smoking medical marijuana every symptom I had disappeared. For the first time in years I felt normal. Hell, I felt great.
These are my shorthand notes from that first day:
5/26/2014 MM1
+ Results. Migraine completely halted in 8 minutes. Muscular rigidity ceased. @15 min: Mental blocks ceased. Paresthesia ceased.
I cried before I went to sleep that night.
I added marijuana to my daily medical regimen. I began smoking once a day at bedtime. I read everything I could find about Epilepsy and medical marijuana.
I had one additional seizure cluster in late May. I had two seizures total in June. All seizures coincided with my known seizure triggers. I was NOT having random seizures. This was a major breakthrough for me, this was progress.
I stopped taking Klonopin nightly. I slept peacefully without it.
Severe side effects from Topamax hijacked my body soon after I began taking the drug. At first it was loss of appetite and taste perversion. Taste perversion is not as sexy as it sounds. Everything tastes terrible, especially everything carbonated. There is Science which explains why carbonic anhydrase inhibitors such as Topamax make things taste terrible but I won't get into that. I lost 20 pounds in May and I could no longer drink beer. It was a small price to pay for migraine relief.
The side effects increased in July. My gums eroded and bled constantly. Anhidrosis kicked in - my body lost the ability to perspire! My body temperature became dangerously high unless I remained in an air conditioned room. Anhidrosis made me claustrophobic; I felt as though my body was vacuum sealed in plastic and I was slowly suffocating.
Breathe.
My Neurologist quit in July without warning. Her voice mail coldly informed me to call elsewhere for care. I booked the next available appointment with a new Neurologist: September 4th.
I began tapering off of Topamax on July 19th. Potential withdrawal effects: seizures and death. Three times a day I smoked a miniscule amount of medical marijuana, just enough to calm my brain.
Three days later a 21 year old actress named Skye McCole Bartusiak died from Epilepsy related complications. Sudden Unexpected Death in Epilepsy (SUDEP) is reality. SUDEP is the number one cause of epilepsy related death in people with pharmaco-resistant epilepsy.
My Epilepsy is pharmaco-resistant. Every time a seizure is triggered in my brain a game of Russian Roulette is played.
Topamax withdrawals are Hell: shooting electrical pains body wide, Alice in Wonderland visual illusions and a torso covered in hives. It took two weeks for the withdrawal symptoms to fade away. My mouth stopped bleeding. My body regained the ability to perspire. Food and drinks tasted normal again.
Despite going through painful drug withdrawals I had zero seizures in July. Zero.
It is August. Zero seizures. I will be alive when my grandson is born next month.
Have I found my magic bullet?
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