Expert Answer: What happens when all medication fails for Intractable 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 track 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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (23)
  • chargedmomma
    6 years ago

    I have a chronic migraine 24/7 due to a mild traumatic brain injury (car accident). I too tried: chiropractic, acupuncture, occipital nerve injections, cryolysis of a nerve – stopped that procedure, a host of medications/injections, tried it all (MHNI, Mayo, to name a few). Thankfully I was introduced to neurostimulators (Houston/Dallas). I have THREE (the non-drug ones) covered by insurance. It allowed me to go back to college, finish my degree, and participate in life again. Went from pain level of 7-8-9 to 2-3-4. Headache initiated in 1995.

    [Moderator’s note: some content removed to respect site policies]

  • kays
    6 years ago

    Sorry for the typo! I HAD a neurostimulator implant in April.

  • kays
    6 years ago

    Having tried 67 meds, Botox, chiropractic, acupuncture, trigger point injections,and various surgical nerve blocks, I have a neurostimulator implant on April 13, 2012. My life is completely changed. I went from a 24/7 migraine to living again. I thought it was “too good to be true” when I went to the informational seminar, but it’s not. It’s living again! Mine is not just occipital though; the leads come across my forehead as well. Fortunately, I live in Dallas where Reed Migraine Center is located. If you’re interested, here’s their web site: http://www.reedmigraine.com
    There really is hope out there!

  • taralane
    7 years ago

    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.

  • Kristin Dieng
    7 years ago

    My frustration with this whole process is that it all costs money. I have done what the article recommends. Tried all of the medications. Tried chiropractors, tried acupuncture for 3+ months, Tried multiple forms of physical therapy (which WAS successful, but only if continued without stop, and multiple times per week, which meant the cost was astronomical AND insurance puts a limit on the number of PT visit a year). Tried Botox (of which the 20% copay had to be financed and which we could not afford. Even with very good medical insurance, pursuing all of these medical options has, in the end, bankrupted my family. Literally. So while yes, you want to save yourself, you want to find a way to end the severe pain of living with chronic migraines, you want to be functional… at the same time, when do you say STOP? When your drowning in bills? Once you’ve lost your house? When your kids can’t afford any activities because you’re too busy pursuing medical possibilities to reduce your pain? When you’ve tried everything and nothing has worked and you are STILL chronic and in intense, debilitating pain, do you STILL keep pursing medical seek when the medical help *costs money* that you simply do not have (with insurance copays and deductibles and astronomical medication costs like 3 months of Topamax costing $700 and 3 months of 18 Imitrex sprays costing $600)? I wonder where to drive the line between the interests of the patient and his/her sanity and physical needs and the needs of his/her family’s economic survival, put at risk by the sick family member’s medical needs.

  • Roberta Manion Yoffie
    7 years ago

    Kristin, I understand what you are saying. We have spent a lot of money on medications, doctors, therapy and now looking at taking our son to the Diamond Headache Clinic in Chicago. The one in Michigan our headache specialist first recommended does not take insurance for the professional fees. I am sure that inpatient visit would have cost us thousands of dollars. We have come to pick and choose because we can’t afford to try everything people suggest. Not to mention the psychiatrists told me we were “messing with his brain” by taking him to so many doctors and allowing them to try different medications (not different doctors at the same time). I feel so bad for you and still can’t believe this is happening to our son.

  • Jim Hagen
    7 years ago

    My treatment has been compicated by Serotonin Syndrome. I am now very sensitive to most meds in a bad way. But no conventional meds have helped me so far. I think I may not be able to metabolize SSRIs and opiates and now any neurotransmitter drug has weird effects. The only thing legal that calms it down is lorazapam and that is not something I can get prescribed for daily use or I would want to take daily. Like many people on this site mine are constant and can get into the “soul crushing” zone.

  • Roberta Manion Yoffie
    7 years ago

    Jiim, Thanks for your wise words of wisdom. I am a pretty intense person so I do ask lots of questions.

  • Roberta Manion Yoffie
    7 years ago

    Our 17 year old son has had migraines since 6th grade and he has been diagnosed with chronic intractable migraines. No oral meds or nasal sprays work as preventative and the abortative meds are not the way to live a life with any quality. We have an appointment with a multispecialty team on 1/18/12. I pray they get an opening before then because he is in bed in pain more than he is in school. His senior year has been miserable and his headache is a #8 pain level right now with Stadol on board. Help!

  • Jim Hagen
    7 years ago

    Human touch is also important for healing. If they just kind of probe him and measure him with a tape measure and that is the only touching then the only thing that has happened is that you have been probed.

  • Jim Hagen
    7 years ago

    Have you tried a good chiropractor or someone off the beaten path? I’m not saying that is the total answer or that it will work for your son but I have found that all of these self lauded pain programs to be pretty useless for intense chronic pain. Most of those programs are for people who have pain that is in the more tolerable range of chronic pain. Things to look for and to talk to your son about after an appointment: Were the doctors there to Serve him or was your son there to serve the doctors and their institution? Do they brag about their success rate? If they say that they have a 63% success of treatment rate you might want to ask them what happend to the 37 people out of a hundred that didn’t get better under their care. Another thing I look at is this: do they design their treatment areas with the patient in mind, or the doctors and other staff? At the Cleveland Clinic the rooms get progressively smaller as you are guided through the area of the building they are in and it has security similar to a mental health unit. Do the doctors get their noses bent out of shape when you ask them challenging questions? What I have learned to do: I look them in the eye and I calmly tell them my point of view. I’m interviewing them for a job. Also: if they don’t do their job they don’t get paid. Because alot of what they do is a rip off. I apply the same standard to anyone else who I hire for services. Do your job conscienciously or get to the back of the very long line of my medical bills. Respect their Potential for healing but don’t let them intimidate you. Your son works hard living with pain. They can bust their butts more to help him. God Bless.

  • Deborah Van Der Harst
    7 years ago

    How does one find a Multispecialty team? Thank you very much.

  • Rebecca Atchison
    7 years ago

    I’d like to know about this too, Tara. That almost sounds like a TENS unit…geez, I’d stick those suckers to my EYEBALLS if it gave any relief, lol.

  • taralane
    7 years ago

    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.

  • Tara Lane
    7 years ago

    Can someone tell me what an Occipital Nerve Neurostimulator is? I have heard of some kinds of these things where you put vinyl attachments with some kind of jelly on to your head with wires connected to a box and then ramp up the electricity for a certain period of time to get headache relief. Is this the same thing? In the 70’s I was part of the first medical trial for these things, but they were called something else, and were much more primitive, and, had absolutely no effect on my migraines at the time, but that does not mean that today’s models would not work now. Would someone tell me something more about them?

  • Mitzi Sereno
    7 years ago

    Seem to be more effective with chronic cluster headaches.

  • Julie Rodecker Holly
    7 years ago

    Tara…I think what you’re referring to is a TENS unit. The ONS is implanted in your body. There are leads in the back of your head that are attached to a unit that they like to implant in the chest wall, though I have heard of several other locations. You can regulate the settings depending on how much stimulation you need or turn it off all together if you don’t need it. Surgeons do a trial for about a week before doing the implant to see if it works for you. I’ve had NDPH and Chronic Migraine for almost 4 1/2 years. I’ve tried everything out there and am now going to do an ONS trial, hopefully this summer.

  • Charles Andrew Lininger
    7 years ago

    A second opinion may also include acupuncture and chiropractic. I have seen rapid relief in migraine lasting for more than ten days. This is not an unusual response as it is repeated in many acute migraine presentations, both before and after medication.

  • Marcy Sirrub
    7 years ago

    I crank up my Occipital Nerve Neurostimulator. I take whatever meds I have, then I lie down and pack my head in ice packs and hope that there;s a break in the pain.

  • Pamela Curtis
    7 years ago

    I had an ONS device too! What level do you use yours at?

  • Elaine Gross
    8 years ago

    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.

  • Dr Marcus author
    8 years ago

    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.

  • Ellen Schnakenberg
    8 years ago

    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?

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