Pain Is Real, but Life Is Good.
I have written my story before, telling how I have had migraines since becoming an adult. And suffering until finally ending up on SSD or disability, due to both migraines, and also to a bad back, from both breaking it in a car accident at the age of 20, and a life spent doing manual labor in a steel melt shop. And for the most part, if you look at half of the rest of us here, you will see my story.
Seraching for a treatment
I have done everything to find a treatment plan that works, including all the neurologists in my area, then branching out to other areas. Headache clinics, Michigan State University medical center, for their opinion, and an MRA, which is basically an MRI with dye contrast, that took about 2 hours or so. Then several clinical studies, for new drug treatments, always getting the placebo.
Things that have brought relief
Frustrations in the ER
Of course, many of the doctors in an ER didn't want to use narcotics for migraine, just due to not liking that as a cure, and also not liking to use narcotics in the ER because of so much drug-seeking behavior, even before the drug crisis. So going to an ER or even a Medi-center was always a crapshoot. I even had doctors in the ER start an IV, and load me up with several drugs that did not even touch my migraine, such as a steroid, Benadryl, Phenergan, and sometimes Vistril.
Getting through the first line of defense drugs
I now have a neurologist who is young, and very smart. He tried me on Aimovig, and I didn't have a good experience with it. It caused a few side effects, the worst of which was extreme constipation. Of course, those who have been suffering migraines for long, know about side effects of drugs, and how as you get through the first line of defense drugs, and start in with less used ones, such as Seroquel, a bipolar drug, some of the less well known anti-depression drugs, and some of the less well-known anticonvulsants.
As the title of this goes, the pain is very real, and I am now on Ajovy, which I am tolerating, and have started on my second month. I can't say it is working yet, but I also can't say it won't work. My doctor said that sometimes these drugs take a while to work, from a couple of months to up to 6 months.
While I am always hopeful, and my doctor has said that he won't give up, and will try something else if this doesn't work, I am no worse off than I was when I didn't have any hope at all.
The part of my story that I feel is most important is the life is good part. I say that because, through all of the suffering, I have had someone in my life who has always understood my pain, and has never made me feel bad about having migraines, or about having to cancel at the last minute when I had one hit. And who never was angry at me for losing a job that I worked at for over 35 years, basically due to migraines. I know that they can't fire you for migraines, and I was covered by the FMLA, but being realistic, when a company wants to get rid of you, they will find a way to make it happen. Without going into a lot of detail, I will just say that fired me for a false positive on a drug and alcohol test, saying that I had alcohol in my system when I didn't even drink and had been at work for over 7 hours.
Spousal support, my soulmate
Not only did my wife support me through all this, but we are even closer than ever. And since I lost that job, which I had since I graduated high school, she got breast cancer. She beat it, since she was diagnosed early, and had a very good cancer center here in our small city. I was able to be here for her, to drive her to all of her appointments, and to get her anything she needed, when her chemo made her sick and needing something to eat or drink.
She had a port put in for the chemo, and it got blocked, and she had a different one put in. That one got infected, with MRSA bacteria, and she was in the hospital for a week. When she was released, she came home, but had an IV, and needed to be infused with an antibiotic twice a day. Again, since I was retired on disability, I was able to both put the IV on the line, and take it off when done, twice a day, but also able to help keep her spirits up, as this was something that had gotten her down.
Chemo sometimes gives people what is called "brain fog" when the person can get sort of like they are dizzy and out of it. She got up, to go to the bathroom, and got dizzy, and fell. She fell on her tailbone and broke a bone in her back, a compression fracture. She was able to have a procedure done in which they insert a balloon into the broken vertebra, and inflate it, and then place a sort of cement there, to hold it in the place where it belongs. So her doctor fixed her back up as if it had not happened.
Perserverance and tenacity
In all of the things that could have happened that could have taken her life, she has prevailed, due to both the skill of the doctors, her tenacity, and God's grace. This is my 2nd marriage. We have been together 27 plus years now. I was married to my first wife 11 years. She was my high school sweetheart, and I thought we were going to be together forever. I used to believe in the old idea of there being a soulmate for everyone. This was when I was a young man, that didn't really understand what it takes to make a marriage. And now, I realize just what a soulmate is all about.
I don't think that there is a soulmate for everyone. I think that, just like with my present wife, there are two people that love each other and decide to work at becoming there for each other, while trying to make the other person the best that they can be. So my wife now has always not only sought to make me better, but she has also at times forced me to confront things that I maybe didn't want to confront about myself, in order to help me to grow and to become more of the person that I am becoming even now. And in like manner, I have also been there to help her to grow, to encourage her when she needed it, and to check her if she needed it, as well. And so, a soulmate is someone who commits within themselves, to work to be there for the other person, and that person also determines to be there for their mate. And by doing that, they both are each other's soulmates. In much the way that we could say that a hero is not born, they are made, soulmates are not born, they are made, one action at a time.
So when I go to a store or a gas station, and the cashier asks me, " how are you", I always answer, " FANTASTIC", and mean it. No matter how bad I might feel physically, I am alive, I have a wife that I am crazy about and who just thinks I am crazy, and we always have a roof over our head, food to eat, all of our kids, all 5 of them, of which 3 were from my first marriage, and 2 were our adopted by us, are doing great. We are debt-free, and while by no means are we rich, we pay our bills and don't dread getting the mail, in fear of a shocking bill coming.
A message to the many who suffer
I know that there are many who suffer, often worse than I, and for them,I can only tell you that I know how you feel, and believe me, if I could, I would take your pain away. And I also know what it is like to feel like there is no joy left in life, and it is just taking forever. I can only tell you to try to not give up, but keep on seeking help. With the anti-CGRP drugs that are now out, we migraine patients have, for the first time, a drug actually invented strictly for the treatment of migraines. It was not invented for blood pressure, and then used off label for migraines, not invented for depression, or seizures, or some other use, and taken off label for migraine prevention. You could say that the Triptans were for migraine treatment, but they are for after you already have a migraine, not for prevention. And while they don't work for all people, they work for enough people that it has to give hope to other people who they don't work for, since the doctors tend to learn a lot, even when the drug only works for some of the patients. So it is just a matter of time before the next generation of preventative drugs follows.
Have you checked out the new Community Hub yet?