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Problems getting treatment for chronic daily headache

Hi all,

I've had chronic daily headache/migraine for 10 years now, and migraine since I was a small child.

I am frustrated because I can't seem to find a specialist who can see me more than twice a year, at most. I would like to try more medications, but I would like to know there is someone I can talk to about side effects, etc. and feel supported but since I can't get in to see my Dr. more than once every eight months this is difficult. I try something for three months, it doesn't work or the medication is intolerable and then I wait for the next appointment. I usually suggest the next medication to try because I've researched quite a bit (hooray for pub med), which is also frustrating because I don't feel like I'm doing anything with this doctor except getting pills, there is no overall treatment plan. My GP has said he doesn't feel that he can treat my migraine condition. I have looked and I can't find any other specialist that is in my insurance network (which is small) or who is a good Dr. (I've had a couple of bad ones, including one who "fired" me as "untreatable"). I don't know if I can afford out of network care, but I'm starting to think about paying out of pocket because I feel desperate.

I just had an appointment with the neurologist's assistant cancelled, and the next appointment available is in March. I actually started crying on the phone with the appointment schedule person because I was so frustrated.

Is it unreasonable to expect to be able to see a specialist more than once ever eight months? (Maybe it is, I don't know at this point) Does anyone have suggestions for finding a new specialist?

Thanks. I'm really at the end of my rope and its nice to have somewhere to case a message in a bottle, so to speak.

  1. Atickner,

    I have been a patient with the Michigan Head Pain and Neurological Institute (MHNI) for a decade and a half. The frequency of appointments depends on the treatment plan and what changes might be made in medications. For instance, I last saw my neurologist a week ago and I am scheduled to see him again in three weeks to check on how the med changes have helped/or not helped with the migraines. I think the most I have had appointments stretched out, when things were going better for me, was three months.

    I think the key is finding someone who specializes in treating migraines and chronic headache. There are clinics and providers around the country. I happen to live in Michigan so MHNI was a natural choice for me.

    I hope you find the right provider that can bring you relief! I believe that this site has some lists of clinics. I would not be surprised if one of the moderators posts a link to that list!

    Take Care,

    1. Atickner,
      Yes, you should be able to see your neurologist more than every 8 months. With the limitations in your insurance, maybe you can ask your doctor's office if you can see a resident or a nurse practioner more often and then schedule big appointments with the main neuro less frequently. Usually a resident or nurse are easier to get a hold of.

      As Monkeybrew said, there are a number of headache clinics and Specialists around the country. This link will tell you all of the neurologists in the US who have a designation as a Headache specialist. Again, they might be hard to get an appt with, but once you're in you tend to get better care.

      Jefferson Headache Center in Philly, Michigan Head Pain and Neurological Institute and the Diamond Center in Chicago are the 3 main headache centers in the US- but you may have to travel and pay out of pocket. So you may want to try a Specialist closer to you first.

      I hope this helps!
      -Katie Moderator

      1. Atickner - What you are describing is "patient abandonment." Its illegal. Canceling an appointment for November and refusing to see a patient until March is essentially refusing care, assuming this isn't your first appointment with this clinic. I'm not suggesting you sue, but understanding that you have the legal highground here might give you a better way to be assertive with these folks. At the very least, knowing the correct phrase, "abandonment," is likely to get their attention and get you better treatment.

        1. Dear Atickner ~
          Your doctor should not only be able to see you more frequently than every 8 months, he should be able to get you in on an emergency basis if you have an over-the-top migraine and need abortive treatment such as a nerve block. I'm in agreement with Schmee about the patient abandonment. However, I think I'd try to find a different specialist if at all possible. The apparent inability to fit you in gives me a bad feeling about their level of compassion (or lack thereof). My migraine specialists through the years usually saw me every 3-4 months on average. Sometimes I'd go for 6 months between visits, sometimes for only 3-4 weeks, depending on how I was doing.
          I had a doctor refuse to continue treating me once too. He had put me on Xanax and wouldn't believe me when I told him I thought I'd become physically addicted at my prescribed dose (this was back in 1983 when it was a new drug and they had no idea how addictive it was). I thought I might be pregnant and wanted to discontinue the drug, and when I called him about my horrendous withdrawal symptoms, he "fired" me. I went through 4 months of withdrawal on my own.
          I've had chronic daily headache along with migraine since I was 11 (I'm 56 now). The name of the game has always been drug-of-the-day. They just keep throwing meds at you and wait to see which one works. It was like that when Dr Diamond opened the 1st headache clinic back in the 1970's, and it's still like that today. It can get to be depressing after awhile. My current local neurologist had me on the very 1st med I was put on back in 1975, plus 2 other meds that I'd already been on with no improvement. He just kept raising the doses for almost a year, until I was pretty much a zombie with a migraine every day, dizziness, vertigo, falling spells,brain fog, acid reflux and visual symptoms. I finally went to Jefferson Clinic in Philly and experienced tremendous improvement. They got me off all of the meds I was on (and all of those symptoms disappeared) and put me on a med I'd never tried before, which seems to be working. My local doc is now working with the doc at Jefferson.
          I've had to pay out-of-pocket at times when I had no insurance, and admittedly it can be daunting financially. Many doctors are willing to put you on a payment plan if you need one. As long as you're paying something every month they're usually okay with it. If you decide to look for a new doctor, definitely see a headache specialist. Ask what their policies are about emergency visits as well as anything else which you can think of.
          Wishing you the best of luck!

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