Migraine 411 Community Group
This is a place to post information about migraines as an adjunct to the main group. If you have venting or questions, please speak to the main Migraine group. This group is here as a resource so when you are in the middle of a cycle and do not want to have to search 25 pages back you do not have to.
I'm not sure what instructions your neurologist has given you, but I gained very little by following mine's instructions to the letter. I did everything she asked of me for almost three years, I took meds that caused my hair to fall out, I got the Botox, I avoided taking my meds more than twice a week even when it meant missing my classes and work. I lost my job, aged out of my father's insurance, and couldn't afford triptans anymore. I tried to explain that when I tried to conserve my pain meds (Fioricet and Fioricet with Codine) I ended up missing out on my life. She wanted to talk about how much medication I was taking rather than the fact that I was in pain almost every day that would not stay manageable without medication. Not very compassionate I would say. I'm looking for a new doctor right now.
So what I am doing now? Eating IB profin like candy, taking Excedrin like its going out of style, ingesting more caffeine in one day than a grown man should in a week, smoking a lot of weed...all just to keep the pain low enough to stay out of bed. I looked into a Pain Management doctor who might perhaps be willing to accept that I need medication, but I can't afford the co pay for one of their office visits.
Yes, I know what I am doing is unhealthy, I know that I am a "bad patient", I know that I need help...but if my neurologist had her way I would basically lay down and die. She became frustrated and angry with me because my migraines are intractable. She refused to accept the nitty gritty reality that I am in pain every single day and I don't care if I have rebound headaches-for heavens sake even taking the meds as she wanted I had a headache that would escalate every day! What do I care if it isn't healtyy to take that much medication!? It isn't healthy to miss out on my life and fall into a depression either! All I care about is living my life...
But I digress. I want to be very, very clear that mine is a cautionary tale. I am not advocating going against your doctor's wishes, I am advocating being honest with them about how well you are coping. I am advocating frank discussions about what is realistic. I am advocating being honest about your financial situation and the kinds of meds you have access to and the realities of living with chronic migraines. Also, ask for samples of your more expensive med, they often have some in the office.
I hope you put your life back together in a way that works for you and that you are experiencing less financial hardship very soon.
I have seen people in the migraine headache support group so miserable because their neuro just doesn't know what to do with them anymore, and the patient is left hopeless and in terrible pain. Please, the best think you can do is find a HEADACHE SPECIALIST. You can go on the internet and find them that way, look up headache clinics and the like, and you will find specialist. They are the ones who will really make a difference in your life. Please do look into that.