Finding effective treatments for migrainesis in itself a big headache.
Today in this blog, I am going to tell a real story of my friend John, Endless Migraine and few steps taken to end it.
My Endless Migraine and few steps to end it
John is very close to me. We have been friend for more than 20 years now. We have been sharing almost everything and are true to each other.
Let’s have a look at John’s Migraine problem and how he tried to end it.
My first feeling of the pain
I (John) was somewhere between my London’s office and the subway station when I first noticed the pain.
The left side of my head felt like I had been hit by a mallet – not the kind you could use in croquet, but a giant Thor-type wooden and iron hammer.
The small but sudden pain almost made me fall. Suddenly, the sweet summer day was suffocating.
My dress was sticking to me; my inner wear itched and irritated me; shoes started rubbing on the floor hardly.
I started to see fleeting spots that I would later learn as an aura, a signal that a headache was coming.
My first submission to the pain
I abandoned my lunch plans and reserved it at my apartment.
I lay down on my futon couch in the living room with a huge glass of water, a few handkerchiefs, Advil, Benadryl, and a replay of Law & Order.
But the pain has spread and the feeling has changed. The vocabulary to describe my symptoms would come later, when a series of neurologists would teach me the different words to describe a strain of pain: implode, explode, palpitate, stab, pulse and hurt.
I would be introduced to the pervasive pain scale: a series of emoji-like faces that start painlessly (level one) and move into twisted agony (level ten).
This is how it started 16 years ago, and in a way, this headache never stopped: my migraines usually last for days, sometimes weeks or months.
During a good stretch, it average about five times a week.
Migraine is a particularly cruel type of headache, and it is relatively common: in the United States, more than 38 million people suffer from it, and around 70% are women.
Some studies estimate that up to 2 million people suffer from chronic migraines, like me.
Migraine and my further steps
Migraines are incredibly different for each person, and victims like me often go through a list of drugs that prevent migraines, called preventives, or stop an attack.
In the past decade and so, I have seen 10 neurologists and tried many preventives, all of which have been prescribed off-label, which means that they are not specifically intended to treat migraines but have been proven to work for some people.
Pain makes your world very small and unpredictable.
Now I (John) am going to tell you about some of the medications I took to end the horrible situation of migraine.
These medications are totally as per my personal doctor and prescription. I suggest you to please take medicines as suggested by your doctor after proper consultation.
Currently, I’m taking Keppra, an anti-epileptic medication with the strange side effect of undifferentiated rage,
Namenda, used for dementia,
Lisinopril, a drug for high blood pressure; and
Zyprexa, an antipsychotic medication
often used to treat bipolar disorder.
I get Botox every three months as a series of around twenty small injections that numb the nerve endings in my head.
I have also tried several nerve blocks, a treatment where the main nerves in the head are injected with a numbing agent. These injections hurt so much that I sobbed the first few times I had them.
Right now, I’m exploring a procedure called radio frequency ablation, where doctors use electrical stimulation to try to reset the main painful nerves.
I have also tried a long list of unsuccessful abortions (attempts).
These mainly belong to a class of drugs called triptans, which were developed in the 1990s and are used exclusively to abort migraines.
Triptans are serotonin receptor agonists, so they work on the same brain chemicals as some antidepressants, and if you take both – which I have done and always do – you have to watch out for an unpleasant condition called a serotonin storm, the result of excessive activity in the brain.
Symptoms include restlessness, contractions, chills, and sweating.
Sometimes I get an ergotamine or DHE infusion from my neurologist.
The treatment of migraines in hospitals mainly consists of intravenous DHE every eight hours for four to seven days.
This is by no means a simple solution, but it has a special place in my heart after a week of intravenous therapy in a hospital helped partially alleviate a devastating eight month headache in 2016.
I left the hospital with a slightly better but still unbearable headache.
Desperate for a better solution – my current neurologist didn’t know what to do anymore – I went to see another doctor, who put me on an ergotamine pill, called methergine.
This headache started in May, just before my wedding. (I had to get a separate IV on the day of my bachelor party.)
This forced me to take medical leave from work, receive treatment for hospital patients, and postpone my honeymoon.
I finally improved – like I could leave my apartment – around December, but I didn’t really feel 100% until February 2018.
When you suffer from migraines, you try to dampen your enthusiasm when you hear about a new drug
But in the past year, there has been one major development: Aimovig.
This medication is a monthly injection you give at home and has virtually no side effects – just constipation and inflammation at the injection site.
Rather than spending days or weeks getting expensive injections in a hospital, Aimovig theoretically allows patients to control their preventive care.
Aimovig is considered a new treatment in that it has been developed specifically for the prevention of migraine.
It is the first drug approved by the FDA that blocks the peptide receptor linked to the calcitonin gene (CGRP-R). When the brain releases CGRP-R, it causes inflammation, which causes migraine pain.
Studies have shown that the drug can reduce the severity of migraines by 50%.
The drug seems fairly simple. What is not yet clear is how migraine sufferers are expected to pay for it. The cost of an injection is currently $ 575, and it is not certain that insurance companies will cover it. So far, only Express Scripts have said so.
The good side is that Aimovig will not be the only drug that acts on the CGRP-R receptors for a long time. Two similar drugs, Ajovy and Emgality, were approved by the FDA in September 2018 and are in the hands of patients.
The migraine world is incredibly excited about these drugs as they are the first developed specifically for migraine pain since triptans 20 years ago and due to the results of clinical trials.
Some offer and treatment
Companies manufacturing Aimovig are offering people two free doses. They also launched a program called Aimovig Ally which lowers the cost for those who are not covered or who have insurers who have refused coverage.
I signed up for two free doses of Aimovig and then joined the Ally program.
I took the medicine in September, October and November this year.
Unfortunately, Aimovig did not breach my migraine consistency. I am now in a six month headache that started in July 2018.
Once the other CRGP-R drugs are on the market, I plan to try them if I can get them for free or at a reduced price.
It is difficult not to be discouraged.
Situation during Treatment
I spend a lot of time lying in a dark or zoned room with the TV on if I can manage the noise. I read if I do not have the aura that is screwed with my vision.
Pain makes your world very small and unpredictable. I went from being a super reliable and knowledgeable person to someone who is constantly hitting things off and can barely work, let alone the basic tasks of life.
I have many days when my migraineis so severe that I cannot eat or sleep.
However, I have a neurologist who stubbornly continues to look for treatments that could help me, and I will continue to try every new treatment I can get my hands on.
Migraine or Headache pain is the one which can occur to anyone. In the vastly evolving world this problem has made its impact in the proportional possible way.
Take care of your self, mentally and socially. Once the migraine strikes as to my friend John, it is hard to deal with and live life again as energetic as previous one.