Insurance and Lyrica

Since it’s been longer than planned between updates I figured a little recap was called for.  Warning there is some adult language ahead, be on the lookout for possible F-Bombs. 

Due to the move from New York to South Carolina we had to change insurance providers.  Our new insurance company in their infinite wisdom decided that they wouldn’t approve Botox treatment even though Botox had been the one therapy that was helping and had been approved by our insurance company in New York.  They decided that they wouldn’t approve it until I jumped through hoops, did a little dance, and tried various other drugs. The bastards basically said “screw you”.  I guess to be fair to the insurance company Chiari headaches aren’t really migraines which is what Botox is approved for, they are more like atypical migraines with pain that can encompass the entire head and that never goes away.  If you’ve ever had a migraine imagine having one almost every single day of your life followed by bad headaches the other days and that’s sort of what it’s like living with Chiari.

 

So since Botox was out for now my new neurologist sent me home armed with headache journals, various medication samples that were to be used to try and break the rally bad headaches and a prescription for Lyrica.  Let me tell you right up front that the med’s we tried to break the headaches with did nothing.  We tried Isomethept, Relpax, and Diclofenac just to name the ones I can remember.

Back to Lyrica, yes the Lyrica you see on television that’s used for diabetic nerve pain and fibromyalgia, and where the voice over guy talks about a long list of side effects like “serious, even life threatening, allergic reactions”, “suicidal thoughts or actions”, and “weight gain”.  Before I started taking Lyrica every time the commercial came on it made my inner voice over guy say “may cause death or other serious side effects, but hey you won’t have any more nerve pain”.  For the record the only side effect I’ve experienced is a little weight gain.  There is however a side benefit to taking Lyrica, it calms involuntary limb movement.  Involuntary limb movement is one of the other gifts I have, my legs jump and move involuntarily when I lay down or even just relax on the couch, my arms like to get in on the act too.  The movement isn’t always perceptible like when the muscles are spamming but it is maddening.  This involuntary limb movement makes getting to sleep almost impossible not only for me but also for my poor wife.  Between the nightly “Chiari Shuffle” while trying to find a position that makes my head and neck comfortable and the crazy legs doing their thing and of course the apnea induced snoring once I am asleep I can’t believe my wife hasn’t moved into one of the other bedrooms so she can get some sleep.  Joyce, you are a saint!

You don’t just start out at a high dose of Lyrica you have to start low and work your way up; I started out at 50mg per day and worked my way up to 600mg per day.  Right from the start Lyrica calmed my crazy legs and I started getting much better sleep.  Once the dosage got up to around 450mg per day the headaches started getting much more bearable.  I was even able to build a foundation for our shed and didn’t have to go lay down to recover when I was finished,  usually that kind of physical activity would result in a long visit to our bed with the pillow over my head.  Things were going really good while I was on the Lyrica, I still had a headache 24/7 but the pain was less sever and it felt like I had my life back, then one day in mid-January 2016 my head exploded.  It didn’t explode in pain, it exploded when I went to pick up my Lyrica prescription and the pharmacy told me that it was going to be almost $500!!! That’s a freakin’ car payment!!!  My health insurance had once again screwed me over; they were no longer going to cover Lyrica.  They wanted me to try other therapies to see if something less expensive would work.  I wanted to call them and once I got a human operator say “Fuck You” and hang up.  So my doc switched me to Depakote which is normally used for treatment of epilepsy, but also helps people with migraines.  There are usually little to no side effects from Depakote but there is one side effect that hit me hard while on Depakote, sever muscle pain.  I could barely walk it hurt so much, as you can guess I stopped taking it.  I went back to taking fistfuls of Advil, and the crazy legs came back which meant less sleep which means worse headache pain.  So January through May was basically hell on earth for me and my family.  I’m not exactly fun to be around when the pain is really bad.   Then in June Dr. Boor tried to get Lyrica approved again, it was approved, but with our high deductible plan it’s still a car payment until I hit a certain amount out of pocket, blah blah blah, insurance bullshit, blah, blah, blah but at least I’m back on it and the severity of the headaches is going down.  And the crazy legs are no longer crazy.

In the meantime - thanks to the headache journals and my neurologists’ persistence - after more than a year our insurance has finally approved Botox, of course the insurance jerks only approved it through the end of this year.  I wonder what hoops I’ll have to jump through starting in January, I guess proof that I average 18 migraine days per month, sometimes more sometimes less, and a regular old pounding-throbbing headache the other 12 or so days of the month wasn’t enough to get it approved past this year, UGH! But back to the good news, I go to see Dr. Boor this Friday to start the Botox therapy, sure it’s 30 some-odd needles to various parts of my head, face and neck but I can’t wait to get started.  Plus I’ll have a nice wrinkle free forehead.  The hope is that between the Lyrica and Botox I can get down to maybe 5 migraine days per month, I can live with that, I just wish I could schedule which days they happen.