Refractory Chronic Persistent Migraine. (Refractory means it doesn't respond to treatments)
Started: Oct 17th, 2010
Stopped: Never.

tl;dr at the end (the help part)

Over 4 years of dealing with this migraine. I've come to terms with it. We coexist and I have accepted that it will never go away. I am doing less and less each month, as the cycle of "do nothing to make it worse" and "now it takes less to make it worse" spiral down.

I am currently on nothing for pain. Well, nothing prescribed. I take an obscene amount of advil, tylenol, and asprin each and every day. (Its a race to see which of my internal organs I can kill off first, sadly). I do this as they help to keep me out of the ER for the migraine and they also somewhat help with my other "side effects". The major one of these side effects is that I have developed fibromyalgia (pain everywhere, similar to how you feel with a really bad flu - fm is the only description available). I do not take anything else. In fact, non-pain related narcotics (and alcohol) make my head quite a bit worse so I avoid them like the plague.

My migraine is bad enough that I joyfully accepted brain surgery to remove a subarachnoid cyst - the only things anyone could find "wrong" with me. This is only the 2nd surgery I have ever had, my tonsils being taken out 35 years ago being the first. I do not ever recommend this surgery fyi.

My main issue:

Every doctor, clinic, specialist, nurse, everyone have seen over the past 4 years and 4 months has two things in common:

1) Each one of them believes another doctor / clinic should be dealing with my pain, workability, and general treatment. My neurologist only wants to see me once a year and says my Family Dr should be medicating me for the myalgia and doing workability reports. My Family Dr says a pain clinic should be treating me (they always point out that a pain clinic's function is pain management after all). The pain clinic says either my Neurologist or my Family Dr should be medicating me and doing paperwork, as all they do is injections and PT and neither has any effect on myalgic pain.

2) Each and every one of the people I have seen has given up on me. They have each said in no uncertain terms that they have nothing more to offer me. While this is true in terms of the migraine, (if you can think of it, I've probably tried it) this is not true of the side effects. I have been treated for these. The treatments have been moderately successful and yet each and every time, the person responsible for the treatment declines to continue it for "reasons" or instead turns and blames the treatment for the condition it is treating. I have never had relief for more than 4 months at a time from these - usually there is almost a year between breaks.

I live a little over an hour north of Minneapolis. Since I am not working, going to any clinic more than an hour away becomes a real hardship when they want to see me more than once a month. However, I have exhausted every pain clinic, within 80 minutes of my house. I have seen countless neurologists and cannot see any new ones as they flat out refuse to see me if I am "under the care of another neurologist". I have been to every major clinic in my area for family doctors at one point or another over the past 4 1/3rd years and have now run into the point where doctors are flat out refusing to see me after getting ahold of my medical records. This is a very special treat when you think you might have an ear infection but cannot get an appointment with a Dr because you have an untreatable migraine. To the urgent care!

I am not a drug seeker. In fact, I have taken myself off of many of the insanely addictive meds that I have been put on in the past due to the doctor prescribing said medication trying to shame me for taking it in the first place. I have gone months and months with 0 addictive prescriptions. I have never asked to have one refilled early. I have never failed any drug test I have been given. I have told doctors that I do not want certain meds prescribed ever again as they were WAY worse for my head (morphine was a big one). When asked what I would like to have prescribed by any doctor, I always leave the choice to them and I tell them I will try anything they feel will be effective if I haven't had it already with no positive effects.


What I need help with is this: (tl;dr for those who didn't want to read my ramblings above)

What in the holy heck do you do when there is no one left who will treat you? Especially when you are still fighting with SSDI and they want to see you going to a doctor on a regular basis for treatment?

What do you do when every doctor has absolved themselves of responsibility for you and it reflects in your medical records?

Example: I had one family doctor note in my file that the migraine is present every day. but he doesn't see any reason why I can't work, as I would only be unable to work when the migraine is affecting me. ... what?

Example 2: I have noticed memory issues since 2012. I have mentioned this on every visit to every doctor since then. Each time, the doctor blows it off as unimportant / related to the current meds / due to my pain, and so it has never appeared in my medical records.

What do you do when there are simply no other choices left to you in terms of treatment?

There are very few pain clinics, even in Minneapolis, and of all of them, I went to the only one that offers something other than injections and PT. I have also been to the one that specializes entirely in headaches. They ran out of ideas within 5 months and I cut our relationship short when they began pressuring me (such a nice way of putting it - they were trying to bully me) to try treatments that were not only ineffective in the past, but also had horrible side effects for me.

What do you do when it seems like the entire medical community has given up on you and you are just tired of hearing "learn to live with it"?

I am not looking for sympathy, or pity here. I really genuinely hope that someone out there has run into this and has overcome it and can help direct me.

Thank you for any and all answers.