It’s been seven weeks now and the headaches have not disappaited. On
a scale of one to ten they have been an average of ten.
I have been searching for answers and definitions. WEMD explains it as: The three genes linked with hemiplegic migraine are the CACNA1A, ATP1A2, and SCN1A genes. Defects, or mutations, in any of these three genes lead to a breakdown in the body's ability to make a certain protein. That protein is needed for clear communication among nerve cells. Without that protein, nerve cells have trouble releasing or taking up neurotransmitters -- the chemical messengers between nerve cells.
Most people with hemiplegic migraine have inherited the gene mutation from one parent who also had the condition.
A year ago I was diagnosed as having a stroke, the symptoms were similar: vision problems, loss of muscle control on my left side, left eye rolled back to the top of my head towards my nose, loss of use of left arm and leg, impaired speech, so I went into hiding. For two weeks I lived alone, dragging myself around, depending on the kindness of anyone who would bring me groceries. I pushed my body to work, to roll the wheelchair around. I meditated and focused and one day they were gone. I had recovered from what I thought was a stroke. I took the drugs the doctors prescribed and I went back to hiking and riding and working at my high stress computer job. I had had many physical challenges before and had overcome insurmountable challenges including brain cancer and a car accident that left my head a jigsaw puzzle, my mouth almost toothless and all my ribs and my hip broken but I had been put back together and now, pain free I went on with my life, content.
They came back six months later.I had been traveling two hours with my girl on my way to an eye exam. In the waiting room I began to get a headache. It became so severe I dropped my head in my hands and the rest had to be told to me because I blacked out.
Stephen sat in the chair with his head in his hands, “Headache?” I asked.”Her sit back and I will do some Pranic healing,” I said as I gently pressed his body back. His had started to tremble. “open your mouth and stick out your tongue,” I said calmly as my heart raced. He stuck out his tongue and it came out twisted to the side . He’s having a stroke I thought to myself, I had seen that on the medical tv drama “HOUSE”. I went to the receptionist and asked for an ambulance then ran back to Stephen, he lay slumped in the chair. “open your eyes, Stephen, you are having a stroke.” I lifted his lids and both eyes had rolled back in his head. I held him in place. I did what Pranic Healing I could. The ambulance came. He was taken away on a gurney to the hospital across the street. I was panic stricken and proud at my quick diagnosis and action.
Every test was run EEG, AKG, blood tests, nothing wrong, nothing new wrong, just damage from four past strokes and the brain cancer. They released him into a rehab center. He chose to be checked out after one day and we came home. The next day he could walk and though his arm was weak he felt better. Two days later we played racquetball together. He played poorly but we walked out happy. We spent the next two days walking and cooking and watching tv.
We went back to the gym, he on the reclining bicycle me at a game of racquetball. When we left a headache started coming on. We went to the doctor, and I rented a wheel chair and took him to the park across the street. We or rather I watched the ducks, felt the breeze , listened to the wind and as I was rolling him out of the park, the wheel caught on the cement and Stephen was thrown out. A passerby helped me get him back in the chair. Iwas a wreck, in tears unsure of what to do. Unskilled I carried on. He was stoic, never complained. His knee was bruised and his neck wrenched. We were treading water unsure of which direction to head.
He was crumbling and took valium to put himself in another place. He couldn’t move and slept on the floor downstairs. Again he recovered movement but the headaches persisted. A visit to another hospital and another rehab and another checking out without doctor’s permission.
Days passed, he worked, with one eye open the other blind eye closed. Then a total paralysis, eyes rolled back, I was afraid. “letme take you to a hospital, I can’t do this.” His answer was no. He was afraid. I couldn’t cope without information so he left on his own to UCLA.
He fell in the corridor of the hospital and broke his wrist for the seventh time in his life and fractured his patella. They did not cast it at his request.
Stephen saw every specialist on the planet, pain management doctors, eye doctors, had more tests. He started vomiting, chocking, not being able to breath.
“leave me, I have fings to do,” he rasped, he had lost his voice, his speech was slurred. I laugh at the “fings” he thought he was going to do. When he returned home with no more answers than before we started “googling” migraines and at a friend’s suggestion, hemiplegic migraines. We eliminated citrus foods, everything was cooked fresh without preservatives. I served him a grilled cheese sandwich with a homemade soup and the headaches escaled.
Aged cheeses were on the do not eat list and we chalked it up to that, it took two days before the 10 migraine crawled it’s way to a 10. We found some medical marijuana and it went down to a two. He smiled, we were grateful, we made love, we went to a new doctor and a new medication was given. We researched the medication and were appalled . at the side effects but he took them and we went to pick up items at work.
In the car he had a seizure. I pulled over, lay the seat back and started in with my Pranic Healing. He was quiet. Out like a light. I believed it would pass so with one hand on his weak pulse and one on the steering wheel, I kept driving. He had another seizure. I pulled over.
“Stephen, Stephen,” I called to him
“Hospital,” he mouthed, he had lost his voice, he passed out.
Another hospital, more test, new medication, a transfer to a new hospital, more tests, no diagnosis, nothing wrong and he was released a day later.
Stephen paid the $4000 to have the DNA test that confirmed he had the genetic and paralyzing pains of a hemiplegic migraine.
Because he had overcome 3 broken backs and other debilitating physical problems with his mind, his will and his Raiki healing, he continued those. I suggested he tell hisbody that even though the pain was intolerable, there was no need to experience the paralysis. He overcame the left arm and leg paralysis and with a custom made leg brace was able to get around. Stephen repaired things around the house, did laundry, folded, worked in the garden all with headaches between 7 and 9. He did his work on the IPAD and recovering his voice he did business on the phone.
Six weeks had passed and medical marijuana was only bringing the pain down to an 8.
I was away when he seized again. He called a taci and had aseizure in the cab. The cab driver, called and ambulance helped himself to all of Stephen’s money and saw him and his wheelchair leave in an ambulance. UCLA medical center would not admit him, there was nothing they could do. He left to a motel, found mmj and the headache stayed at a throbbing 8.
Starbucks was his hangout because he could use the WIFI connection and work. He texted.
“Cannot sleep. I am exhausted, long busy day. Must find a solution.”
When I read , “just about reedy to let ggo of dtails and gve upp.Thee heedache wnns toddy. No mre ennrgy to fghht.” I knew he was in trouble but he refused to tell me where he was. He did not want to burden me.
Once again he went to the hospital and there a friend of his from work went to see him. He was angry.
He now had all the symptoms of the disease.
Symptoms of hemiplegic migraine include:
• Severe, throbbing pain, often on one side of your head
• A pins-and-needles feeling, often moving from your hand up your arm
• Numbness on one side of your body, which can include your arm, leg, and/or one side of your face
• Weakness or paralysis on one side of your body
• Loss of balance and coordination
• Visual aura, such as seeing zigzag lines, double vision, or blind spots
• Language difficulties, such as mixing words or trouble remembering a word
• Slurred speech
• Dizziness or vertigo
• Nausea and vomiting
• Extreme sensitivity to light, sound, and smell
• Decreased consciousness or coma
I began reading everything the internet had to offer, every story, every drug, every good food. I learned about potential triggers, the list was endless: light, noise, citric foods, aged foods, some said chocolate, other articles asaid chocolate was good, some said no coffee others said coffee was good. I became an expert on nothing and there was no solution. Medicines that worked for some people had adverse effects on others. I was frazzled breaking down. That’s when someone came into the picture and took him to yet another hospital, a famous one with state of the art machines and more doctors.
What do you do when there is nothing that can be done. I read the hemiplegic migraine sufferers
‘s blogs. Many had had pain for years at a time.I shared the information with Stephen. He is still inpain and still looking for answers.