When Peter looks back on his life so far, it is clearly divided into two parts and two states. The time before the stroke and after. And life without and with almost unbearable pain.
Peter suffered a stroke in 2006 at the age of 36. This was preceded by a “not too healthy lifestyle,” as he puts it himself – smoking, alcohol and long work shifts deep into the night. However, something else was responsible for the stroke: an oval, approximately two-franc-sized, undetected hole in one of his heart septums. He was wrongly diagnosed with asthma and allergies for years - but his heart defect was not discovered despite frequent medical checks. The hole in his heart causes a blood clot to form there and travel to the brain. “At that time I was the happiest I had ever been in my life. I was assistant manager at an Irish pub in Estavayer-le-Lac and in love with a new relationship,” says Peter. After a long work shift, he lies down to sleep next to his girlfriend. The next morning he wakes up with paralysis on the left side of his body, his left hand shows severe spastic cramps, and the left side of his face “hangs down”. It may have been more than six hours since the stroke - when every minute counts to avoid brain damage. Peter is taken to Payerne Hospital in an ambulance and then transferred to Lausanne University Hospital by helicopter. There the clot can be dissolved and Peter survives.
The martyrdom begins
Peter doesn't have to stay in the hospital long. And his paralysis is also subsiding again. For a short time he hopes to be able to get back to his usual life with the help of physiotherapy, occupational therapy and speech therapy. Unfortunately, this hope doesn't last long. About a month after his stroke, Peter felt burning pain in the fingertips of his left hand for the first time. “Like reaching onto a hot stove. “Just all the time,” is how he describes the feeling. A year later, this so-called peripheral neuralgic pain, accompanied by severe allodynia, has already “taken control” of his entire hand. Peter can't touch anything without almost screaming in pain. The clothes on the left side of his body burn like fire. Peter therefore got into the habit of wearing a loose robe that is reminiscent of traditional Arabic clothing. And he cuts off all the cuffs. Because anything that is directly on the skin hurts. For the first year and a half after the stroke, the pain continued to spread across his left half. Peter does occupational therapy and tries “rabbit fur therapy” or mirror therapy. All with the aim of reducing the pain. Nothing is of any use. Only strong pain medication gives him some relief.
Around a year after his stroke, the hole in Peter's heart was closed using minimally invasive surgery. “After a day I was out of the hospital again. What would I have been spared if it had been discovered?" he sometimes asks himself. However, the neuropathic pain remains and gets worse. Peter is prescribed increasingly stronger painkillers. He occasionally receives infusions of the painkillers ketamine and propofol intravenously, but these only give him relief for two to three days. Two years after the stroke, he took Oxycontin for the first time: It took effect after around half an hour. It is taken as a sustained-release medication, meaning the active ingredient is released gradually. This means the effect lasts for several hours. At the same time, he is prescribed the fast-acting, morphine-containing Sevredol. The combination of the two medications reduces Peter's pain burden. There's just one problem: Oxycontin is an opiate and quickly becomes addictive. Peter also has to constantly increase his medication dosage - up to 300 milligrams per dose. Overdose may cause respiratory arrest. In the USA, drugs containing the active ingredient oxycodone, which is contained in Oxycontin, are one of the causes of the currently spreading opiate crisis. This claims tens of thousands of lives every year. Despite the danger and high addictive potential, medications containing the active ingredient are also prescribed in this country - albeit under strict conditions.
The “wired” Peter
Since Peter's pain level is always very high, he was the first patient in Switzerland to have a motor cortex stimulator (MCS) implanted after a stroke during a seven-hour operation in 2010. Otherwise, this technique is used in Parkinson's patients. This uses electrodes that are implanted above the surface of the brain to specifically stimulate the brain regions that are responsible for the painful parts of the body. Peter's motor cortex stimulator runs - without him noticing it - for an hour at a time, then takes another hour off and it doesn't operate at night either. For a while, thanks to the stimulator, Peter feels around 35 percent less of the burning pain in his face and back. Five years later, another therapy is used on Peter. He receives a spinal cord stimulator (SCS) at the well-known paraplegic center in Nottwil. This is intended to stimulate the nerve pathways between the fourth and fifth cervical vertebrae and relieve Peter's pain. The operation is successful and the pain subsides for the time being. Unfortunately, Peter is so underweight due to taking opiates that the spinal cord stimulator works “inaccurately”. In this way, it not only stimulates the desired nerves, but also other nerve pathways. The result is painful bursitis on the knee, which requires further surgery. Peter has to limit the stimulation of the SCS to a minimum, so that the implant unfortunately cannot develop its full relieving effect.
A life in the opiate fog
Despite all efforts, therapies and the two implants, Peter's severe neuropathic pain remains. In addition, there is pain in the sacroiliac joint as well as osteoarthritis and a bad bursitis, because Peter can only lie on his non-painful right side to sleep. He has been taking opiates for 15 years. These “destroy” his body little by little, as he says. He is tormented by constipation, loses weight to 55 kilograms at 1.80 m and develops a medical tremor, a strong shaking of his hands. And Peter is no longer himself: taking medication changes his character. He is irritable, depressed and his emotions become dull. So much so that he can't even properly mourn his beloved mother when she dies at the age of 93 in the spring of 2023. “Inside it was almost tearing me apart. But nothing came out – not a single tear, not a sob, not a scream, not a single thing.” Peter decides: Things can't go on like this. He wants to get off his painkillers.
Get out of addiction – under anesthesia
Peter researches for a long time - and finally finds Opiostop. A way to undergo drug withdrawal under anesthesia. On June 24, 2023, he will be given the active ingredient naloxone under anesthesia - an “antidote” to the opiates he has been taking for years. Up to this point, nine hours of anesthesia was a record for the patients. For Peter it was 18 hours for the first time. A nurse later tells him that he was bucking and writhing under anesthesia. Then the “cold withdrawal” strikes: Peter is plagued by indescribable withdrawal pain and withdrawal symptoms for weeks. He is delirious for a day and a half, naked because he can't even bear the hospital shirt on his "burning" body. He has muscle cramps, stomach and intestinal cramps, is cold for over ten days and all foods taste terrible for days.
After the withdrawal the high
When the first hard time is over, Peter experiences a second youth. The body's own endorphins take effect. He listens to music from his teenage days, feels better and his relationship with his partner and his dog, 13-year-old Nahla, intensifies. He can finally mourn his mother. “I lived in a cocoon for 15 years, and now a butterfly is emerging,” he says. Instead of taking opiates, Peter smokes medical cannabis, which improves his mood.
Although the opiate withdrawal has improved Peter's mental life, the pain has increased. Even the sun and wind burn like hell on his skin. He prefers to go for a walk in the forest with his dog Nahla when it is overcast and there is no wind. He can relax there: he walks from bench to bench, takes a few puffs of cannabis and can suppress his pain for a few minutes. But most of the time Peter suffers. He rarely leaves the house anymore and lives in isolation - apart from his partner and a few remaining friends. “If you've been addicted to medication for as long as I have, you only have a few contacts left. Because the medication makes you live like you live under a constant veil. They lull you and make you passive. The only thing that kept me alive was my girlfriend and my dog Nahla," he says sadly.
A computer tomography with serious consequences
In 2024, Peter will have a routine computed tomography of his kidney. The contrast agent used further damages his already strained nerve pathways. Since then, Peter has been plagued by neuropathic pain not only on the surface of his skin, but also internally in his mouth, esophagus and stomach. Since then, Peter has only eaten liquid food and lactose-free protein drinks - solid food hurts him too much and swallowing becomes almost impossible. “I have stomach cramps, sweats and the internal nerve damage hurts enormously. “It’s like someone cutting open your stomach with a knife,” is how he describes his neuropathic pain. To take the drinks, he tilts his upper body to the right, non-painful side. He can only take three to four puffs of the pain-relieving cannabis at a time, then the pain in his mouth and throat becomes too severe. Peter may need a feeding tube in the future. “Not being able to drink or eat at all is a terrible idea for me. Especially since, thanks to my cannabis therapy, I've regained my appetite and even gained six kilograms," he says.
The fight with the health insurance company
Although Peter is officially considered exhausted and medical cannabis has very positive effects on his physical and mental constitution, the cost -making language for his health insurance for medical cannabis is dependent on prescription. The first application was rejected after only ten days, but Peter went into recourse. «It's so tedious. The harmful opiates were paid to me, but with medical cannabis I have to bear the considerable costs myself. In addition, I cannot simply get the medical cannabis in a pharmacy, but have to get it illegally. Although it can be proven to help me. Is that fair? »Asks Peter. During the so -called re -weighing application, he enclosed a pioneering federal court decision to his health insurance. In addition, he has attached the recipe of his neuro login - not before the general practitioner - to reaffirm the urgency. Peter does not give up hope that the assumption of costs will be approved this time. » Medcan keeps his fingers crossed and continues to work for the relieved access to medical cannabis - for people like Peter.
