Does Anyone Else have Constant and Severe Migraine?

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Does Anyone Else have Constant and Severe Migraine?

Post  Brenda L. on Fri Aug 16, 2013 8:26 pm

I've suffered from migraines for nearly 25 years. I've tried and failed dozens of abortives, preventatives, DHE, triptans---you name it. DHE, depakote, morphine, steroids---NOTHING ever ends my migraines except for time. Unfortunately, time doesn't seem to work anymore, either. I've been in status migrainosus for almost 3 years.

My pain is both constant and severe. My pain level never really changes. When I am in migraine, my pain level is constant and excruciatingly severe. It really is the worst pain that I can imagine. I've been seeing a pain management doctor for the past few years. Opiates have helped me a great deal. I'm still in constant pain, but the meds dull the pain to the point where I can at least function at a basic level.

Over the past 25 years, my migraines progressively lasted longer and longer. First they lasted for days, then a week, then 2 weeks, 3 weeks, one month, 2 months, 3 months, 4 months. Each migraine would always last longer than the previous one, like there was an internal clock or my migraine was trying to break its own record.

I've been to countless neuros and headache specialists, but no one could ever help me. I've never responded to any of the ergots or any of the triptans, but there is no doubt that it IS migraine. I have a strong family history of migraine, although no one in my family ever had migraines like I do. My CT scan and MRI are clear.

The neuros would always tell me that I am "a very unusual case", which makes me feel like I'm almost the only person who suffers with this migraine pattern. I just wanted to ask if anyone else experiences this? I know that migraines that last for 2 or 3 solid MONTHS have got to be really rare. Even the headache specialists that I've seen have never really seen a case like mine. The doctors tell me that status migraines usually don't last longer than a month, but I'm just a really unusual case.

I used to have wonderful months-long breaks from migraine. I'd suffer through a 4-month bout of severe status migraine, just about ready to lose my mind from the pain. Then one magical day I'd wake up in the morning and the pain would be gone! From a 10 to a ZERO. At worst, I'd have a tiny bit of minor residual pain for a day or two, then I'd be totally pain-free. And I would STAY pain-free for the next 6-8 months. Totally pain-free: no migraine or any sort of headache for up to a full year.

But after 6 or 8 pain-free months, SOMETHING would always trigger a migraine, no matter how careful I was about diet and sleep and no matter which preventatives I was on. And for me, once a migraine starts it always lasts for at least 2 to 3 solid months. But since I've had my current severe migraine for 2 and a half years, I've pretty much lost hope that this migraine is ever going to end. I've been to countless neuros and headache specialists and no one can help me. Nothing ever seems to work for me. The best I can do is pain management.

I wish more than anything that this migraine would just END, but it doesn't look like that's going to happen. I never thought I'd have to live every single day of my life in constant severe migraine pain. It really is torture to have to go through life like this. I'm never free of pain. I have to take meds for pain and nausea on a daily basis.

I just wanted to ask if anyone else here has a migraine pattern similar to mine?

Thanks,
Brenda

Brenda L.

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Re: Does Anyone Else have Constant and Severe Migraine?

Post  Platypus on Sat Aug 17, 2013 3:10 am

Hi Brenda,

I'm really sorry you're suffering so much pain. There's a diagnosis for 24/7 headache, it's called New Daily Persistent Headache (NDPH). There is a forum for it here
http://www.mdjunction.com/forums/ndph-support-forums
So you are most certainly not alone. Treatment is similar to chronic migraine but there are a few differences. Sibelium is one drug that seems to work well (it's not available in the US but you can get it from Canada) and some people use long-acting opiates like the Butrans Patch and Methadone. Then there are surgical treatments and neuro stimulators. So there are some options out there for you to try.

Good luck,

-Platy
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Re: Does Anyone Else have Constant and Severe Migraine?

Post  sailingmuffin on Sat Aug 17, 2013 10:45 am

Hi,

Yes, I have had chronic intractable migraine/New daily persistent headache since age 17, now 32. So you are not alone. The only things that have helped me are an implanted occipital nerve stimulator, pain management, and an IV of Depakan when the pain gets too bad.

The mdjunction group is good. But I have also gotten a lot of support and great ideas here. Hope this helps.

Pain free days,
sailingm
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Re: Does Anyone Else have Constant and Severe Migraine?

Post  tortoisegirl on Sat Aug 17, 2013 3:16 pm

I can relate some as my headache has been constant for over seven years. They are calling mine NDPH. I've started getting migraines now too. I have heard of some others with very long periods of headache/migraine with breaks in between.

The fact that over time the periods of pain became longer and the periods pain free became shorter, plus how long you have had this episode, shows that like NDPH, this will be very tough to break. Sibelium is a good med suggestion...that is next on my list. It should be given a very long trial (6-12 months) with very small dose increases.

My pain doctor first wants me to consult with another pain doctor though as he is worried the methadone I'm on has caused opiate-induced hyperalgesia. I sure hope not, as that would mean detox would be required. Methadone has been the only thing to help me. I've been on it probably four years now, and with it, I can get up to 50% relief and continue to have a life, work outside the home, etc.

I seem to remember you also are on daily pain meds? Do you also have a big issue with tolerance? I mostly have a tough time finding anything that will work as a breakthrough med for acute pain (short acting).

I just did a nerve stim trial. That is a good option. I would suggest however seeing a doctor that does the Reed or Omega procedure (occipital + supraorbital leads). That seems to have the highest success rate, plus doctors who do those see a lot of headache patients. I've been told that getting the nerve stim to work for headache is tougher than any other pain.

Dr. Reed is based in Houston, but he has other doctors around the country now that at least do the trial, if not the surgery. The Omega procedure is done by Migraine Treatment Centers of America, which has numerous locations, but appears to also be based in Texas. Both also have free seminars for more info. The Omega procedure appears to have webinars. There seems to be more personal accounts of the Reed procedure though.

Eventually I might do that, but I'm just not ready for the hassle and expense of the travel, plus right now I don't have any out of network coverage, so its not really a financial option either.

The main reason I did the trial was because my own pain doc offered it and it should be no out of pocket cost. Our only option was to do C1/C2 cervical epidural placement though, which had a low chance of success to start with for headache.

We were only able to get stim into my arms and side of my neck, and it was very positional dependent. Not a good trial at all since having it on irritated my neck too much, and the stim only worked when I moved my neck around, not when I was in one place. Glad I tried it though, as there won't be that "what if". Hope you find some relief soon! Best wishes.

tortoisegirl

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Brenda....you have the exact same migraines I do. I feel so bad for you.

Post  4everdoll on Mon Aug 19, 2013 8:48 pm

I couldn't believe what I was reading, as if I didn't know better, I would have thought I had written it about myself and my migraines. I have pain 24/7 with no letup in sight, and this has been going on for 44 years. I have been to all of the doctors, tried all preventatives, and nothing really works. The doctors say that I have very complicated migraines with no known cause. I use pain meds, but they don't work well at all. I go to bed in pain and wake up in pain. Most days it keeps me down more than I would like, and I too, right now, are at the end of my rope with these horrible migraines. I have tried everything you have mentioned trying and with the same results....no results about 99% of the time. I do go into emergency and get a Demerol shot when I am totally at the end of my rope and my pills haven't cut the pain one bit. Sometimes the shots help, but most of the time, they do not. My head hurts so bad all the time that it feels like it is going to blow up...and I wish it would blow up as the pain from that can't even be as bad as the pain I have all day every day. The migraines have affected every part of my life, and I really have to life. I can't plan anything, or go anywhere, as I am in constant pain all the time. If I try to push myself to do something, it never works out for me, and I end up back on an ice pak in bed or on the sofa. The older I get, the worse they get, and I think the reason for that is that my poor body is so tired of trying to put up with this nonending pain ALL the time. I wish I had some answers for you, and me, but I don't. Just wanted to let you know that my migraines are exactly like yours and you are not alone with how bad they make you feel all the time. Take care and I pray that both of us will find some relief from these horrible migraines, but am not too hopeful that we will at this point with both of us suffering for 44 years.

4everdoll

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Re: Does Anyone Else have Constant and Severe Migraine?

Post  Kate on Thu Aug 22, 2013 7:57 am

There was a time when it was severe pain going on for months without a break. I couldn't even sleep it was so bad. Even laying my head on a pillow hurt. I've never had months with no migraine. When I do get breaks, it is only because the pain level has lessoned or for a couple of days no pain at all. The only thing I take is Advil and coffee to take the edge off and that doesn't always work.

Ever since I begin having them, they have mostly been non-stop. I have a good size one that has been going on for while now and I'm sick of it...

Kate

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