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Anything I haven't tried?

  • By AFFoster

    I’m a 25 year old female, and I’ve had migraines since I was 6. Two years ago I was diagnosed with chronic daily migraine syndrome. Over the years, I’ve been seen by general practitioners, internists, neurologists, migraine specialists, pain management specialists. I’ve tried so many medications, both preventative and abortive, that if I were to list them all out I’d fill up several notebook pages. I also have a long list of allergies, including triptan medications, Toradol, Zofran, Compazine, and Reglan. I’ve had every diagnostic test imaginable, and have had no success with several types of nerve blocks, acupuncture, chiropractic treatment, Botox, you name it I’ve tried it. After all this trial and error, it’s getting hard to find things I haven’t tried yet. My doctors have all but given up on me finding anything successful. I’ve lost two jobs in two years because of my migraines, and I’m just about to the point of being housebound. Is there anything new out there I’m missing?

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  • By Nancy Harris Bonk Moderator

    Hi aff2116,

    I’m sorry to hear you are feeling so poorly, let me see what information I can give you that may help.

    It’s frustrating, exhausting and isolating when we are in daily chronic pain. I’m sure it feels like you have tried every medication and see every doctor, but that may not be true. Don’t lose hope as there are over 100 different medications that can be used to treat migraine and if we add up all the combinations that number goes up dramatically. It would also take 25 years or so to try all these medications taken in the proper way and at the correct dose. Let me share that information with you; https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/.

    I don’t know if doctors spend enough time on this with us, but when we start a new medication, it can take up to three months before we see a reduction in our migraine frequency and severity. During this time as our body adjusts to the medication, potential side effects may lessen. If we stop taking medications too soon, we’ll never know which one would have been the one that worked. Does that make sense?

    Let’s talk about migraine specialists. Many doctor may claim they are migraine/headache specialists because they treat so many patients with migraine/headache disorders, but that may not be the case. True migraine/headache experts are doctors who are board certified in headache medicine and there are only about 500 or so in the country. Even though we may have seen an expert, that doesn’t mean it was the ‘right’ one for us – not every doctor works for every patient. Here is information about what makes these doctor special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

    There are a few things coming down the road, but won’t be available for a bit. A new nasal spray is in the works and you can read more about new treatments here; https://migraine.com/blog/promising-new-migraine-drugs-target-cgrp/.

    I hope this is helpful,

    Nancy

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  • By picklestheyorkie

    Hi aff2116,
    I am sorry to hear about your struggles – I wanted to post because my wife has gone through a lot of what you have gone through and we found an answer. My wife is 34 and has had bilateral migraines (not always both sides at the same time) since she was 5 (they ran in her family, but none of her relatives’ pain was like hers). They got progressively worse and nothing worked – she couldn’t take Triptans, and for the past 6 or 7 years, the only thing that would break the headaches was ER visits for IV narcotics. She tried preventatives and everything else in the book. Eventually she went for peripheral nerve decompression and sinus surgery with Dr. Guyuron in Ohio. This did not work either (the sinus surgery did) – after eight surgeries, she had enough. About 6 months ago, I looked into other kinds of facial pain and the possibility of a misdiagnosis. I considered that perhaps it was some kind of Type II, or Atypical Trigeminal neuralgia (no shocks, just pain).

    I was going to bring her to Johns Hopkins, but noticed that most people that went there who had Atypical Neurgalia (or “really tough cases”) were referred to Dr. Jefferey Brown in Long Island, NY. We went to see him in the early springtime with no expectations. My wife had a “Thin-slice MRI” before seeing Dr. Brown. This newer technology is usually used on Trigegminal Neuralgia patients to determine if there is internal compression of nerves in the brain. He diagnosed her with chronic bilateral intractable cluster migraines. Sure enough, the scan located two arteries (one on each side) that appeared to wrap around her Intermediate Nerve. Dr. Brown indicated that two microvascular decompression (MVD) surgeries (performed separately at least six weeks apart as long as the first one was working) would be the next step. She had the first one in June (left side), followed up with Dr. Brown two weeks later (pain-free on the left) and her second one in August. In both cases Dr. Brown located and moved the offending artery off the nerve and put teflon between the two. My wife has not had debilitating pain in at least eight weeks. She gets a “regular” migraine about once a week – she says they tend to hang around a level 3 (out of 10) and one or two Fioricets knock it out within hours. Her life has changed dramatically and she has been fully functional (even exercising) since the end of her recovery.
    It’s not an easy surgery by any means – it’s brain surgery and the recovery for the first 10 days (3-4 of which are in the hospital) or so is difficult. But, if you are truly where you say you are, the least I can suggest is to go see Dr. Brown and have the MRI. He is a kind man who has performed a miracle in our lives, and, as an added bonus, everything was fully covered by our insurance company (unlike the peripheral nerve surgeries, which is hit and miss). He has arrangements for out-of-town patients, and I would see him regardless of where you live. My wife’s neurologist is now going to be sending some of his more difficult patients to see him. I do hope this is somewhat helpful and you find some answers.

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  • By Monkeybrew

    Hello to the group!

    I too know the weight daily migraines can bring down on a person. I have, over the years, hit times when I felt as though I had tried everything and that there was no hope whatsoever. Thankfully I have a very supportive wife who, when she sees me starting down that path, steps in front of me to remind me that there is always hope because there definitely are treatments and therapies out there that I have not tried.

    Case in point, I am waiting for my insurance to authorize radiofrequency nerve ablation (c2). I had three bilateral blocks and each time I had completely pain free time ranging from two to one days. Since my migraines are daily (literally every day) having migraine-free days after the blocks definitely put me on the list for ablation. Now we just have to get my insurance to approve the procedure.

    I am very positive about the outcome of this procedure. Having said that, I also know that, in the event the ablation is not successful, there are always other treatments and medications.

    The key is to remain hopeful. I do this by working with the great team at the Michigan Head Pain and Neurological Institute in Ann Arbor Michigan and continually researching on the Internet for information about migraine treatments.

    Never lose hope and remember you have a great group of people here at Migraine.com for support and encouragement!

    MB

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