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“out of options???”

Hello, my name is Melody. I have been a chronic migraine sufferer since the age of 5. I am now 33. Five years ago I was diagnosed with Intractable Atypical Headache. So, it is not really considered to be a migraine. My MRI is normal. This is going to be LONG, but, I would like to tell you all of the meds I’ve tried with NO success. Maybe someone out there will notice if there is something missing from my list, as my Neurologist told me I am “out of options.” She is ready to put me on pain medication. Is that what I need? I’m not currently suffering from rebounds, as I have not taken any medication in 6 months. here is my list, bare with me:
1. Amerge (naratriptan) 2. Maxalt 3. Imitrex (nasal and oral) 4. DHE (nasal,oral,IV,suppository) 5. Zomig 6. Depakote 7. Neurontin (gabapentin) 8. Topamax 9. Zonisamide 10. Mysoline 11. Paxil 12. Effexor 13. Elavil 14. Remeron (mirtazapine) 15. Imipramine 16. Doxepin 17. Seroquel 18. Vistaril 19. Buspar 20. Lexapro 21. Cymbalta 22. Tenex 23. Clonidine 24. Propranolol 25. Verapamil 26. Axert 27. Feuroset 28. Tramadol 29. Toradol 30. Diclofenac 31. Naproxen 32. Ibuprofen 33. Excedrine 34. Magnesium 35. Celebrex 36. Acupuncture 37. Chiropractor 38. TENS macine 39. Calcium channel blockers 40. Bio feedback. have tried all beta blockers, tricyclics, triptans, and CCB. oh, and muscle relaxers.
SO, WHAT ELSE IS THERE?? this has been going on for 28 years. Should I try the pain medicine? Will the doctor even give it to me?

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Comments

  • ylnx4n
    4 years ago

    Hi Melody, I have had migraines for 35 yrs and just this last two yrs found some relief with my new Drs! I do use topamax and Botox injections but I also use two great drugs that are for breakthrough migraines one is a triptan called frova and another is a fairly new drug formulated just for migraines. It’s a power you mix with water it’s called cambia and it’s fast working and can be used alone or with another drug. I use it with the frova a lot of times because I get killer strong migraines as a side effect from infusions I get twice a month that have nothing to do with migraines. I hope these help you, I have tried a lot of the drugs you mentioned over the years and none of them helped me either! But I have been so happy with my new dr. And also with the Botox, topamax and back up frova and cambia. It really stinks to have to take all these drugs but the depression and losing all your friends and watching life go by from inside of your windows is no way to live. Good luck to you!

  • Katie M. Golden moderator
    4 years ago

    Melody,
    Our lists are very similar. I have a few ideas, but I’m not a doctor so you should definitely consult before changing anything. Also as Jenn and Kaci said you may need to change doctors and make sure you’re seeing a Headache Specialist.

    I don’t see Botox listed. I’ve been doing it for 4 years. It helped more when I first started it, but it still does give me relief for several weeks in between injections. If you’re afraid of needles, just ask for a topical anesthetic so you don’t feel it. I wrote this article about what to expect from your first Botox injections. http://migraine.com/blog/botox-basics/

    In a similar vein, have you had a nerve block? These don’t last as long as Botox (usually 2-3 weeks), but they can numb the nerve endings that are signaling pain almost immediately.

    There is a medication called Namenda that is being used more frequently that you may want to ask about. It’s actually a drug for Alzheimer’s patients, but is being used off-label for Migraines. This drug targets a peptide called CGRP that is thought to be also be an issue for Migraine patients.
    http://migraine.com/blog/what-is-calcitonin-gene-related-peptide-cgrp/

    Lastly, like Kaci said, have you ever had a DHE infusion either in your doctor’s office, ER or inpatient? When a bad Migraine cycle hits, an infusion through an IV is used to try to break the cycle. If those don’t work, I’ve been to a Headache Center in Philly and have done inpatient infusions of lidocaine and ketamine. This is definitely a last resort option. Ask about DHE infusions first.

    I hope that gave you some ideas and treatments to research. In the end it’s all about what you are comfortable with. Let us know if you have any questions.
    -Katie

  • Jenn Lebowitz
    4 years ago

    Hi Melody,

    Thank you so much for sharing your story, and for being part of our community. We are so sorry you have been through so much.

    To Kaci’s point in her recent comment, if you’re interested in looking for new doctor or headache specialist, we thought these articles may be useful: http://migraine.com/migraine-headaches-doctors/ and http://migraine.com/blog/how-are-migraine-specialists-different/, as well as this one: http://migraine.com/blog/healthcare-providers-turn-to-for-help/. We hope this yields results for you and that you are able to get more options for treatment.

    Please know you are not alone in how you’re feeling. Please also feel free to post in our forums as well! If you’d like to do so, the forums can be accessed here: http://migraine.com/forums/.

    We are thinking of you! Please feel free to keep us posted on how you’re doing.

    Best,

    Jenn (Community Manager, Migraine.com)

  • KaciMo
    4 years ago

    Melody,

    I’ve been written off by doctors and know how frustrating it can be. I’d say it’s time for a new doctor. Have you ever seen a headache specialist? If you haven’t, I would highly suggest it. I know there are a couple of tools on this website to help you find one. My list was longer than yours, and I thought I had tried everything there was when I started seeing my current headache specialist. But I’ve been with him for a couple of years now, and he still hasn’t run out of ideas. He’s also much more rigorous with treating my migraine than any other doctor I’ve been with. Mine is also refractory. Have I gotten any relief yet? With the exception of a couple of months that must have been an anomaly, no. But he’s determined to help and all he studies is headaches, so he’s always got options.

    The only suggestion I have for treatment is maybe finding someone willing to do infusions if you’ve never done that. I haven’t had any luck with them thus far, but many people do, particularly with intractable or refractory headaches. I’ve had infusions with DHE and Lidocaine, and am thinking about doing one with Ketamine soon. Katie Golden (I think) recently did a series on Ketamine on this site. You may want to read her articles and do some research into it if you haven’t. The research on Ketamine and pain management is quite interesting.

    Hope that helps. You’re not alone, friend! I hope you get some relief soon!

    –Kaci

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