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Medications & Prescription Treatment

Finally found a solution, after 30 years of migraines!

  • By SimoneH

    I joined this forum solely to share this. Because to us, it’s nothing short of a miracle (actually, we still both fear the magic might end any moment, but so far it’s been almost a month headache free….) – and who knows, it might help others out there. I can not not share it.

    I am the wife of someone who suffers from chronic daily migraine. It wasn’t always this bad, but has progressively been getting worse. The last 5 or so years, our family life has been ruined by it. Just ruined.

    My husband has tried every preventative known to mankind, from Feverfew to Topomax, Vitamin B, Cephaly, Botox and other nerve injections – everything. Nothing made a difference. (except for oral steroids, which took the headache away but turned him into an agressive, scary monster, and he gained 60 pounds in two weeks)

    Over the counter drugs never helped, the only thing that got him a few hours of relief were Triptans or Migainal. Cannabis (he spent a fortune to have Charlotte’s Web extract shipped to him) helped sometimes, but only for a little while. And it still made him feel weird and paranoid, so he hated it.

    So here’s his everyday life: My husband would usually wake at 2:00 or 3:00 am with a migraine, treat for it, try to get some more sleep. By mid-morning, the migraine would be back, and he would have to take another Triptan. All sluggish from that stuff, and basically useless, he’d somehow soldier on through his day. By late afternoon the migraine would be back with a vengenance, and then he’d have to inject himself with yet another Triptan and go to bed. Yes, that is a lot of Triptans. Yes, his neurologist was on board.

    The only alternative, which actually occasionally gave him a full 12-24 hours of relief was Migrainal. But the side effects were just not worth the trade. Now he couldn’t breathe anymore, and his stomach was in absolute agony. He couldn’t venture more than twenty feet from the bathroom.

    I don’t want to bore anyone with our full story, I just wanted to lay out that this was not a once or twice a month migraine sort of situation. This was chronic, daily, relentless, life-trashing.

    Two months ago, my husband went on disability because of his situation. Then a doctor prescribed something entirely new, which his neurologist had never even mentioned: Buprenorphin-Naloxin. Apparently, this is a very serious, last resort kind of drug for chronic pain, related to morphine, but supposedly non-addictive.

    The first pill knocked my husband out for two days straight. (he is 6’4″ and 260 pounds, so not exactly a light-weight.) But the headache was gone. We couldn’t believe it. It was just GONE. He now takes one of these things in the late afternoon, sleeps till about 11, and then is a NORMAL, happy person the rest of the day. Works on his truck. Helps around the house. Talks of taking the kids for surf lessons.

    Now, note that it still knocks him out till 11. This is not for anyone who still works. But he was beyond that anyway. So who cares, if he’s snoozing till noon! The rest of the day, I get my spouse back! And he gets his life back! It is just so utterly amazing to both of us.

    So, keep your fingers crossed for us that the magic continues… and if you are in a similarly desperate situation – maybe go ask your doc about it.

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  • By reiki.traci

    Please can you tell me who this doctor is. My daughter has had migraines for 8 years straight. For the last few years, sumatriptan and botox have worked. However, starting in May, her migraines took an aggressive turn for the worse and have not been relieved with any medicines – she has never been prescribed, nor tried, any narcotics because I guess that is unethical? She has been absolutely bed-ridden. She is so sick, and the present doctors will not give her anything at all to take this brain ache away. Please if you could tell me the name of this doctor, I’ll travel the world to get her some relief. If she only needs one of these Buprenorphin-Naloxins a day, what can that hurt? Presently like today, she took 2.5mg frova, 200 mg sumatriptan, and 2 injections of sumatriptan. Here is the list of what she has tried and all has failed: frova, sumatriptan including injections, reglan, neurontin, topamax, flexeril, skelaxing, indomethicin, compazine, massages, chiropractic, cannabis, magnesium, Vitamin B2, cymbalta, abilify, steroid dose packs, tramadols, toradol, flonase, aspirin, aleve, etc . . . no narcotics though. There could be more, and I am not sure if I left anything out, but presently we are all affected, and we can hardly stand to see her suffer this badly. Thank you for listening.

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  • By Nancy Harris Bonk Moderator

    Hi SimoneH,

    Welcome to the Migraine.com discussion forum and sharing your story with us.

    Buprenorphin-Naloxin or Suboxone, is an opioid usually given to treat opioid addiction. I’m sorry to say it is rarely used to treat migraine, as are other opioids. I completely understand as I took methadone and then oxycontin for a number of years. They did not stop the migraine process, rather dulled the pain.

    If your husband has not seen a “true” migraine expert, I would encourage him to do so. These expert doctors are board certified in headache medicine which is different than being certified in neurology. You may want to take a look at this information about how these doctors are special and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Best of luck
    Nancy

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    • By SimoneH

      Hi Nancy,
      thanks for the link to the Migraine Specialists. My husband’s neurologist, Dr. Jack Shim, is right there on that list. In fact, I think that is how they found each other, through a migraine study. They went from black hair to grey together, that’s how long my hubby has been seeing him. Something like 15 or 20 years. Yet, there was in the end no solution found.

      Dr. Shim is a great guy, and he tried absolutely everything with him. Some preventatives (Topamax) worked for a little while, only to fail the second time around. Some things (Botox injections, wearing the Cephaly) worked a little, but not nearly enough. In the end, my husband had to use Triptans usually three times a day, each day, just to get a couple of hours of relief. He was so sluggish from that stuff, we could not go anywhere or do anything. Yet, Dr. Shim flat out refuses the idea of narcotics. I do not understand what the harm is.

      As it is, my husband’s quality of life was zero, and the migraines were only getting worse, year after year. Now, he sleeps a lot, but the rest of the time he is perfectly fine. He does not act goofy or high. And supposedly this drug is not addictive. It is not the same as Methadone. I could only see somebody getting “addicted” to not having constant pain. I’m not certain what the side effects are, but it couldn’t be worse than the cocktail of meds he was previously taking. This one drug replaced for him the following: Botox, Triptan tablets, Triptan nasal sprays, Triptan injections, Zecuity Triptan patch, Migrainal (and all the drugs he’d need to relieve the side effects – like decogenstant spray and Immodium), Tizanidine, and Aleeve. That’s probably not even the full list.

      If the miracle holds for him, I will eventually inform Dr. Shim. Since he has treated my husband for so long, dealing with such a frustratingly stubborn disease, I think this might change his opinion on narcotics for hard cases such as this.

      Again, I am not advocating this for everybody. I get migraines too, maybe once a month or so. I treat it with a Triptan tablet and I’m good to go. I would not consider taking this stuff. But for my husband, this has been a life changer. I just hope, hope, hope, it keeps working.

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    • By Nancy Harris Bonk Moderator

      Hi SimoneH,

      That’s for getting back to me. I did want to let you know I truly understand. At one point in my treatment I was taking methadone for 3.5 years and then oxycontin for almost 2 years. I get it and glad to hear you have your husband back.

      Nancy

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    • By Living with Hell-o

      Hi, my name is Jessica . First of all I am sorry that you are guys are dealing with this and of course the pain. I have had migraines since I was 14 . I was diagnosed with a brain tumor in 2012 that I just basically have to live with all the symptoms , there is nothing that can be done.. it’s not cancerous.. but it only has so much room to grow and then it will take my life.. but good for me it hasent grown much… but the symptoms of this wicked mass is so awful! Migraines to where you can’t stand, see or talk! Seizures that are caused by the trauma in my head from the migraine.. so it isn’t to much fun 🙁 but I do want to tell you I have tried many medications.. for the migraines… all the triptans… immitrex.. relax, migranal, etc… I even tried the route of blood pressure meds .. that was awful! I tried all medical massage and chiropractor services. I went threw a time where I was having sezuires every day from the head pain and having to be rushed by life squad to the ER… it became so bad they ended up contacting my doctor and putting me on a prescription of Dilotted 4mg 3 times a day in order to stop the pain and hopefully stop the sezuires. Which is what they were using at the ER and it was helping me everytime. So we did that for 1 year and I never had another migraine or sezuire ! So I got bad news when I went to my check up one day that my doctor was no longer practing around here and I had to see another doctor.

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  • By Nancy Harris Bonk Moderator

    Hi reiki.traci

    I’m so very sorry to hear about your daughter. There isn’t anything much worse than seeing our children in pain.

    If your daughter has not seen a “true” migraine expert, I would encourage her to do so. These expert doctors are board certified in headache medicine which is different than being certified in neurology. You may want to take a look at this information about how these doctors are special and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Good luck,
    Nancy

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    • By Living with Hell-o

      Hi I didn’t get to finish… but to make a long story short after finding a new doctor… and trying phentenol patches, methadone, … I was finally put on a extended release dose of morphine 60 mg daily and I have my life back! This is a drug they use a lot for migraines! So please please don’t settle for a doctor who won’t help you or just put you on something that don’t really help . Take your life back from this pain and stand up to this horrible illness we are fighting… not only for ourselves, but for our families and friends!

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  • By J Bel

    Hi Nancy (or anyone else). I posted some questions in this forum on July 12, Frustrated with doctor and lack of treatment, and haven’t heard from anyone yet. If anyone has any answers or advice, I would really appreciate it!

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