Use your Migraine.com account
Log in with Facebook
Log in with Google
Log in with Yahoo!
Expert Answer: What happens when all medication fails for Intractable Chronic Migraines?
January 11th, 2011 - Posted by Dr Marcus
Chronic Migraines
Finding the right migraine preventive medication
What to do when nothing is working
Expert Answer: Intractable Chronic Migraines
Botox Approval for Chronic Migraine
Nerve Stimulation for Chronic Migraine
Surgery for Chronic Migraine
Living with Chronic Migraines
Recommendations for Chronic Migraineurs
Chronic Migraine & Stigma
Chronic Migraine & Social Security Disability
Chronic Migraine & Child Custody
The Family Medical Leave Act & Migraine
Related Migraine Stories
My Story: Chronic Migraines & A New Life
Cindy’s Journey with chronic migraines
When people ask me what can be done for disabling frequent headaches that no longer respond to medications, they usually follow this up with a question about my views on neurostimulation. Neurostimulation has been used to treat select, intractable chronic pain complaints by using devices to provide electrical shocks to specific nerve regions to help reduce pain. These therapies are generally used after many other, usually more effective treatments have failed and are not expected to dramatically reduce pain severity.
Neurostimulation has also been tested for the treatment of intractable headaches. Researchers at the Headache Research Unit of Liège University in Belgium recently wrote a review article suggesting that neurostimulation might be an option for patients with intractable headaches of several types, including chronic migraine, although most studies have tested neurostimulation in patients with intractable cluster headache. Treatments have included stimulation of occipital or vagus nerves and even deep-brain stimulation. Researchers from Dallas recently published data for seven patients suggesting that combining stimulation of occipital and supraorbital nerves may be effective for intractable migraine.
So, should you start looking for someone to get you started with neurostimulation? Probably not—at least not until you have had your headache treatment history reviewed to make sure that more effective treatments with longer tract records of good use in migraine patients can’t be tried. In many cases, there are treatments your doctor doesn’t routinely use that might be effective. In other cases, the time you spent trying a medication wasn’t long enough to give it an adequate chance to work or the combination of drugs you might have been taking could have prevented good effectiveness. Seeking a second opinion of what else you might do for your migraines from a multispecialty treatment group can be a good way to make sure different treatments are considered. For example, if you are evaluated by a multidisciplinary pain management team, the doctor may suggest medications or injections, while the nurse may address your sleep, diet, and weight issues, a physical therapist may provide exercises and manipulative treatments, and a psychologist relaxation and cognitive behavioral therapy. It’s generally best to make certain your migraines really are intractable to a broad range of well established treatments before moving on the more experimental treatments like neurostimulation.
Did you enjoy this article?
Read more just like it! Subscribe to the Migraine.com weekly and receive the latest migraine news and headlines, right in your inbox.
Discuss
Comment using either your Migraine.com or Facebook account. Please select the appropriate tab:
"I had my first migraine when I was 12. I thought I was going blind, the spots in my vision all grouped together and everything went black. The pain was intense and felt like my head would crack open above my right eye." 
Do you have migraines or tension-type headaches 15 or more days a month? Get the information and tools you need.
Download the free Migraine.com app for your phone and access your journal, headlines and more.
I’m having the same kind of problems, but between trying to get all the bills paid, take care of the household stuff like food, laundry, walk the dog, and keep things somewhat organized (not very), and deal with all the migraines (4-5 a week at whatever level, and note down all the food I ate, symptoms, prodromes, auras, postdromes, and whatever else before the next one hits, I don’t have a lot of time left for researching the next best thing. I have good doctors around me, one is great in getting back to me, one, not so much, and I have been trying for the last 1 1/2 years to get all the info together to send to the new migraine specialist just to get an app’t to try and find some new ideas on my intractable migraines. And I am afraid after waiting 4 months for an app’t. all he is going to say is that I have intractable migraines, end of story. My pain doc is always open to suggestions which is very helpful, and up on new things, but now that I am on disability it becomes a question of cost, because most new things are not covered, and I cannot pay for these things myself, they just cost too much.
I also don’t want to spend my whole life being defined by my migraines, in bed, and doing nothing but staring at 4 walls. If I get any bright ideas I will post them, but at the moment I think it is up to the patients to share the multidisciplinary approach. The doctors are spread too thin over too many patients, and don’t have time to look into alternative treatments or make those other connections. That’s why they get the big bucks.
Ellen – I am also one of those chronic patients no one wants to see in their office. I don’t want to see myself either. I make suggestions to my doctors, and sometimes I hear back from them about it and sometimes I don’t. My best information has come from other people with chronic problems – not friends trying to help with the “I read an article in the New York Times on Sunday” or the “I know an acupressure point on your hand that will cure your migraines for good” thing. (I got that one last week after coming out of 3 weeks of migraines – 5 days on, 2 days off – and was in one of the “on” periods and she wanted to help but I could not talk to her, even though she is a neighbor and meant well.
I do not always use the information -sometimes it is more expensive than I can afford, but I do keep it on file, and get the free e-mail newsletters that are interesting information so if, one day, I can afford it, I know where to go.
I find other chronically ill patients are my best source for information because they are doing the same thing I am. Trying to live with a disease no one else understands, and it does not have to be the same thing. We ought to start a clearing house for all this information from patients for patients. Doctors just don’t have the time.
I’m also a chronic migraineur. In addition I have neck issues, possibly like you. I go to Jefferson Headache Center and was in the hospital for a week for IV infusions which was very helpful. I did get Botox injections. They did stop the head pain. They did not stop the migraine. I still experienced the other symptoms of migraine. But it was wonderful while it lasted, but it only lasts two months. I also have Occipital Neuralgia, and I may also have Dystonia (affecting my neck which is treated with Botox). Good luck to you.
My friend Teri Robert, who you’ll also find on this site, would tell you to be your own best advocate — and it sounds like you are! At our center, physical therapy, occupational therapy, psychology, nursing, interventional speicalists, etc. are all housed in the same facility and patients get consultations with several team members as part of their initial evaluation. A number of pain programs handle pain like this, which helps facilitate communication, etc. When that’s not possible, you’re often left with having one doc as your “general contractor” so to speak to manage what’s happening with the other therapists, etc. Keeping good records of what’s been tried, what helped and didn’t, and what your headache pattern is are important so you can be proactive, even when you have a doc who’s successfully “running the show.” Most of us doc have our “favorite flavors” of treatments and often forget that, while we may usually like to serve chocolate, some people prefer vanilla and there are some patients for whom we have to dip into the often unused pistachio and bubblegum flavors. The best thing for you to do is stay informed, keep your provider informed, and don’t get discouraged. I’ve yet to find someone who has truly tried everything — and new treatments are being developed everyday.
Dr. Marcus – I’m so glad you’ve addressed this. I’m one of those chronic patients nobody likes to see walk into their office.
I was told an occipital stimulator was the only thing left to me. That said, Botox wasn’t tried, physical therapy wasn’t tried, as well as a few other things I knew about at the time but couldn’t convince anyone to look into. I was very frustrating to my pain management specialist because I told him I didn’t want neurostimulation – yet. To me, this was the treatment of last resort.
Being told there was nothing left to help me did do one important thing for me: it got my neurologist to agree to look outside the box for me and my Migraine and other health issues. This resulted in finding malabsorption problems and several fairly serious vitamin deficiencies which seemed to have been contributors, as well as a second look at my autoimmune issues and some fairly icky back problems.
It’s been difficult as I have essentially been left to be my own “general contractor” for my health issues. My doctors are not good at all about talking between each other, nor all that interested looking outside the box ie- typical Migraine and headache triggers, treatments etc. I find myself being left to ask them if “this” or “that” might be contributing, and “what can we do to help those things?”
Do you have any suggestions to patients like me who need that multi-disciplinary approach but are having great difficulties finding it?