My migraine journey need advice.

[Elise_001]

Hello,
        this is my first post on this forum, I am looking for advice and some support. This is my story bear with me for being so long. I started having migraines when I was young, around 11 or 12 years of age I never seeked treatment till I was 21 due to lack or insurance and as the years passed by them seemed to get worse and worse. I was sent to see a neurologist and explained to him that I wake up every single day in excruciating pain, I might have one day every 3 or 4 months where I am not to the point of wanting to lay in bed all day and not move. He gave me fioricet and imitrex to try, neither helped, I continued a cycle of visiting the doctor every three months and trying new meds to see if they worked, I had a sinus ct, a brain MRI , and a back and neck MRI all came back normal. I went to a second neurologist praying to find relief and went through the same cycle of new meds and also had some sort of nerve block injections into my head which still offered no relief, my neurologist finally diagnosed me with occipital neuralgia caused by two very bad accidents in which both I got severe whiplash, he said my MRI looks normal because the nerve is healed since they happened a long time ago but it isnt working properly, he put me on a oxycodone and lyrica for pain, the combination of the medications seemed to help I feel like I have lost a big chunk of my life due to pain, it had dictated every aspect of my life and often causes me to be depressed because I have missed out on so much, nothing makes me feel more terrible than my three year old daughter wanting me to play and I cant get off the couch cause I am in excruciating pain. My doctor ended up putting me on the narcotics because we had a long meeting and realized I have been through every single FDA approved migraine med as well as a bunch of off label drugs with no improvement what so ever. My doctor is about to refer to me a neurosurgeon to see about getting a stimulator device put into my neck. Now the frustrating part.. I went to my appointment about a week ago and my doctor informed me he has had some recent bad experiences with some patients regarding their narcotics so he had decided he will not prescribe them to ANYONE from now on and will be tapering all his patients off. I wanted to break down and cry. I dont abuse my medications and for the first time in years I have had a glimmer of hope back in my life, the pain medication helps just enough that I can tolerate the never ending throbbing and now just because some people abused there meds or did whatever it was I am left to suffer. Its just not fair. I have an appt this week with a new primary care doctor and hope she will be willing to help me and take over the care of my medications but I feel very weird asking for narcotics especially since what just happened with my doctor. I dont know what else to do Im very upset and feel like I am out of options. I dont know what else to try. I am willing to do anything to make the pain stop it is the worst feeling in the world I am only 27 and feel like I am being robbed of life :(

[sara12345]

Eddie's idea above is a good one.  Also have you tried Botox injections which are meant for people who have at least 15 migraines a month?  Mine were every day and it helped me a lot when none of the medications helped me at all, except for an herbal Petadolex which you take every day.  You can find it on-line.

The narcotics are a last resort which in your case seems to be the right choice.  But the consequences are that it keeps you with rebound migraines forever.

Also you could try another neurologist.  Just state your position very clearly as you did in your comment above.

Good luck.

[Eddie1994]

I'm sorry to read about your terrible journey.  My wife has migraine pain that requires treatment not narcotics however. Here is what I would suggest and why.

A Neurologist may be antsy to treat pain long term with narcotics simple because of the riggerous inquiries by drug enforcement agencies.  I get really angry with all the abusers who sell prescriptions illegally.  Their actions are having a very serious impact on legitimate patients for whom this type of drug is necessary.

I would recommend that you have your Neurologist refer you to a reputable pain management specialist ASAP.  These specialist have the necessary protocols in place to ensure that legitimate patients are taking the right drug at the right dose and having the patient periodically tested to make sure the levels are at the prescribed dosage.  I've been down this road and I agree with taking these precautions.