I have had an intractable migraine since October of 2017. Before that, I would get 3-5 a month, and I was getting Botox shots since middle 2016. Something happened and it became permanent.
I stopped Botox a year ago at the end of 2018, and since then I tried six months of Amovic, and four months of Emgality after that.
I was also on Topamax for about a year before the headache became permanent. I stopped it early 2018 because it wasn’t stopping the pain.
I tried cortisone nerve blocks, and I also tried nerve blocks with lidocaine and dibucaine. I have tried a whole host of other pills.
Pamelor, Neurontin, Elavil, Venlefaxine, Propranolol, Memantine, Indomethacin, and most recently Candesartan.
I have tried imitrex in the pill form, but it stopped working as soon as it became intractable. I have tried maxalt and migranal. Migranal only helps a smidge. But nothing to write home about.
I received some imitrex pens, but they make me very sick and it does not break it.
I have tried chiropractic care. I bought a jaw guard for $700 in 2016 before it became intractable. The orthodontist told me that I had TMJ and so I got it made for my mouth. It never helped with the migraines when they were a few a month and it certainly does nothing now.
I saw another TMJ specialist in April of this year at the University of Michigan Clinic and he told me that he thinks my migraine is neurological related. Not TMJ. And he said he could not recommend me to get another mouth guard. That was a dead end.
I tried checking pulmonology because I have been having mild breathing problems. My pulmonologist ruled that my breathing issues are just asthma and not connected to my severe migraine.
I had an MRA in May of this year that came up normal. I also had a brain MRI in January of this year that was normal aside from a 4mm pineal cyst.
I am planning to go down to see a doctor in South Carolina to get his opinion that the cyst is truly harmless.
I just had my eyes checked. My glasses are three steps too strong. My eye doctor thinks that it could be a partial factor but not the whole problem. I have to wait for November 9th before they can process my new glasses with my insurance.
The only things that I have not tried are craniosacral therapy and getting tested for gluten.
I am considering doing the craniosacral therapy soon. But I confess that I do not have high hopes.
I was on norco when it started. And I got off it a year ago only to see no improvement.
I saw a headache specialist at UOM from January of this year to September.
On July 16th, 17th, and 18th, I did a three day regimen of six hours a day outpatient infusion therapy at UOM. They fed me a lot of meds and I only got mild relief on day three.
Even so. It was the most relief I got all year. My daily headache dropped from an eight to a 4 for two whole days. And then it spiked to a nine for about ten days. And then dropped down to a steady eight after that.
I did the same therapy protocol for three more days at UOM in September, from the 17th-19th. This time I got no relief at all.
My UOM headache doctor basically told me he has no other ideas and he wants me to go to the Jefferson Headache Center in Philadelphia for inpatient treatment.
I am trying to get them to call me back right now to figure out how to get my insurance to approve my stay.
I am going to be brutally honest. I am losing hope. I sit in a dark room all day, everyday, for two years now. I cannot talk to anyone. I cannot list to music. I cannot watch tv. I can’t outside. I can’t be around lights.
My college aspirations have vanished in the wake of this living torment. And my relationships with people are vanishing.
I don’t know how I am still in a relationship with my girlfriend. But I feel as if I have no reason for being anymore.
My eyes water from the pain for months on end and I can hear this buzzing that never goes away. I feel like someone is crushing my skull in a steel vice in an attempt to slowly murder me.
The back of my head often feels like a rotted melon. I feel like my brain is spilling out when anyone or anything touches it.
Is there anyone out there that can report success with the Jefferson Inpatient Program?
I am in desperate need of hope. I cannot do this. I just can’t. I feel like I’m dying slowly. I don’t want to spend everyday of my life like this. I am scared that this is the new me.
Both my regular neurologist and my headache specialist have told me that they are out of ideas. And now I am stuck with no plan. Other than dealing with it.
I have read about people who’ve had their status migrainosus broken by infusion therapy.
My headache specialist thinks it has been going on for so long that I need a really aggressive inpatient stay.
I am really hoping that Jefferson can help me. Because I just cannot do this much longer.
My life is gone. I wasn’t able to leave the house for one day all summer. Everything I used to love. Video games. Watching a show. Going on a hike. A bike ride. All gone.
I can’t even go out to eat with people because the sound vibrations make me feel even sicker.
If this is the rest of my life. I’ll be honest once more. I would rather die young than do this for the rest of my life.
I am sorry for the depressing rant but no one is giving me hope. And I don’t think my doctors or anyone around me understands.
This is no way to live. This has consumed my life and everything that used to be me. And I need it to end soon.