Chronic Migraine (10/22 - 12/8 and counting) Any other nonstop Migrainers?

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Chronic Migraine (10/22 - 12/8 and counting) Any other nonstop Migrainers?

Post  ALittleLoopy on Sat Dec 08, 2012 9:03 pm

Hi all, I'm a chronic migrainer myself (40+ years now) so I've been through what I would have said was everything a migrainer can go through (including ending up permanently disabled), but now my 16 year old daughter is suffering from her second long-term migraine. She too started with childhood migraines when she was 8, and we worked through those. Then, last year she was hit the day after her 15th b-day 9/16/11 with a migraine, hospitalized for testing and attempted treatments. She went through ALL of the approved migraine abortive protocals, then the doctors moved to all of the narcotics they could throw at it. She went through the MRI, CAT scan, spinal tap, (then a spinal leak, which lead to them having to do a spinal patch), and finally after two grueling weeks, they sent her home with "we tried EVERYTHING, and there's nothing we can do. You'll just have to rest and wait for it to break. Finally, in the beginning of March 2012, the pain lessened and broke, after only 25 weeks in pure hell.

One again, she was slammed this year with what started as a virus and intermittent headaches, that by October 22 grew into a full fledged constant migraine. The trigger we figured out was the flu vaccine (I got very sick with 101 temp, full body aches, etc for a few days), but her whole life was put on hold while she moved into migraine hell.

We have Kaiser Permanente HMO medical insurance, and are located in the SF Bay Area, CA. If anyone has any specialists in the area, I would LOVE to have a name. As the team of Pediatric Neurologists simply gave up on her last year, we do have good odds of having an outside referral approved. In the meantime, I do have an approval for an excellent Bio-feedback specialist, but with a migraine this entrenched, biofeedback isn't likely to provide a full breakthrough in the pain.

I would deeply appreciate any help for my little girl,

Posts : 13
Join date : 2011-10-15
Location : San Francisco Bay Area

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Re: Chronic Migraine (10/22 - 12/8 and counting) Any other nonstop Migrainers?

Post  Brenda L. on Fri Dec 14, 2012 10:30 pm

I have been in constant and severe migraine pain 24/7 for the last 2 years. Two solid years---not a minute's break from the pain. I'm sorry to hear that you and your daughter are going through this, too.

My migraines began about 20 years ago. Over the years, my migraines began lasting longer and longer. At first they would last for a day or two, then 3 days, then 5 days, 7 days, 10 days.

A few years down the road, my migraines no longer lasted for "days"; they lasted for "weeks". One week, two weeks, three weeks, 4 weeks. Eventually I had to start measuring my migraines in months instead of weeks. One month, 2 months, 3 months, 4 solid months!

I'd never even known that months-long migraines were even possible, but I'm living proof of it! A lot of doctors don't know that migraines can last for weeks or months, either. (I was treated badly a few times at the E.R.) Several times when I sought help from neurologists they would just throw a bunch of meds at me, basically telling me that I'd already tried everything there is to try and that there was nothing more they could do for me. I even went into the hospital and did IV DHE and Depacon---you name it. NOTHING broke my migraines.

After 20 years of intermittent migraines, my migraines finally went CONSTANT 2 years ago. It's a living hell, truly. The only positive thing I can say is that at least now I finally am seeing a pain management doctor, so I'm not needlessly suffering like I used to for all those years. And I never have to go to the E.R. anymore. I'd do anything to be pain-free even for just a month or so. I really miss the "breaks" from migraine that I used to get. Now I can't really go out and take vacations or anything. I can't work.

I really hope that things improve for you and your daughter. I too get so frustrated by CONSTANT migraine. I feel like I'm the only person in the world who has constant severe migraine. I know a few other people have it, but I also know that it is rare. I usually post in chronic pain forums because my pain is constant.

When migraines are non-stop, there really is no such thing as trying to guess the "triggers" or trying to see what might "prevent" a migraine. Yes, I've tried dozens of preventatives, but now I'm in CONSTANT pain. I still avoid what used to be "trigger" foods, but there's really not much point in it. No matter what I do or don't do this migraine never stops.

Also, most people just don't understand this kind of constant migraine pain. You have no choice but to learn how to "live with" a constant migraine. No matter how sick you feel, you still have to do the grocery shopping, clean the house, drive to the doctor, you name it. A million things that you never thought you could do with a migraine you learn how to do out of necessity.

Know that you're not the only one out there with long-lasting or constant migraine. I never thought my migraines would ever go constant, but now I have no choice but to deal with constant severe migraine. NOTHING has ever worked for me, and I really have tried it all. I hope you have better luck than I ever did.

Best Wishes,

Brenda L.

Posts : 64
Join date : 2012-12-14

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Re: Chronic Migraine (10/22 - 12/8 and counting) Any other nonstop Migrainers?

Post  Kate on Sat Dec 15, 2012 8:00 am

I get migraines that can last a month. In the past I got non-stop for months. They were so bad that I couldn't even sleep. The way they are now I get a break, but it doesn't last long. I still get them for a couple of weeks to three at least. Speaking of vacations, they have become pointless for me now. What is the point in going when you are severe m pain ever time. I can only push through it for so long.

My m pain has becoming more intense again. It lasts for several days. I was thinking that it could be pre-menopause but who knows with these things.


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Join date : 2010-01-06

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Re: Chronic Migraine (10/22 - 12/8 and counting) Any other nonstop Migrainers?

Post  Angela0611 on Mon Jan 07, 2013 9:31 pm

Hi I've had migraines since I was 26 years old I am 36 now. I too have had every test under the sky. I have had 3 spinal taps and all 3 spinal taps I've had spinal leaks that needed blood patches all 3 leaks needed 2 each and on one of those the docs thought they could treat it with pain meds which they over dosed me and i coded, i had no pulse, was not breathing white as a ghost and they brought me back! Some of these docs are idiots! But anyways I feel your pain. I am currently doing bio-feedback in Woodland hills kaiser-honestly it has not helped me much with the pain or my migraines, it is relaxing though! Topomax seems to help but i get stuck on stupid and i had a hysterectomy a year ago which seems to have made my migraines worse!!! I don't take hrt cuz my neuro said that can make migraines worse but i am getting horrible hot flashes and dont know if that is contributing to migraines! I get warnings when im getting a migraine like i crave sweets which i never eat or my stomach hurts or i get a runny nose or my ears start ringing and sure enough the following day or next i have a migraine. The pain is so intense , I want to drill at my temples, I pull my hair and I use ice packs that helps. Also my fam practice doc prescribed ambiem so I will just take one n i will pass out for the day or night so I dont feel the pain! Beats having to go to urgent care for drugs! They just think you are a drug addict!


Posts : 33
Join date : 2013-01-07

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Continuous migraine new treatment works

Post  DebbiC on Wed Jan 09, 2013 3:38 am

I often have migraines that last a week or too, but recently had one that went for 4 months, I was taking 6 Imigran a day for 4 months. I finally went to a ' migraine ' specialist. He put me straight in hospital and I had sub cutaneous infusion with small 'butterfly needles' moved every couples of days placed in my stomach. The infusion went for 7 days and I had to rest. But by half way through the week my migraine went away and I'm back to 1 or 2 a week for which I use Imigran and usually it goes. I would recommend this treatment to anyone with a continuous migraine as it may help you too. You must be hospitalized for this treatment.


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Join date : 2013-01-09

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Re: Chronic Migraine (10/22 - 12/8 and counting) Any other nonstop Migrainers?

Post  lowbrainpower on Tue Mar 19, 2013 10:46 pm

My chronic continuous migraine has been for the past year (severe) with near constant migraine (90% of the time) for the previous 3 years.

The migraine ranges in severity, but I can say that my life has completely stopped. When I am not lying in bed in pain/stupor I am in the bathroom at the toilet, and when I am not lying in bed or at the toilet I am either passed out or trying to find help online.

The worst part isn't the pain, it's the confusion and loss of reality that comes with it. It has gotten so bad that I am living with my parents because I am unable to pay my bills, work, or help myself. If it wasn't for my parents I'd be rotting away in the streets and probably wouldn't be alive at the moment.

I have gotten no answers. I have been hospitalized and given IV treatment with no relief. Nothing has helped, except fasting (no food no drink) for 48 hours and high doses of Ibuprofin, which only last for an hour or so.

I have lived with this for so long I often forget there is a problem and think I am going insane. Rather than analyze my history and try to figure out what is causing my problem, most doctors are unwilling to help due to the time required of them. God forbid those in charge of our health take the time to do it right, rather than think of the health industry as a business and work in patients like an assembly line.

The only thing that I have found to be of help is opiates (Tramadol, Hydrocodone, etc.) for short term 'I don't care about this pain' type of relief, as well as Dexedrine (an amphetamine). Dexedrine seems to get rid of the pain/pressure on occasion (due to vasoconstriction?) but is mostly used to give me that aggressive attitude needed to laugh at the pain and do things like force myself out of bed and call more Drs. to run more tests.

I can honestly say that because I am bed-bound 90% of my life, I would have gotten nowhere if it hasn't been for this magical pill (Dexedrine), because without it, all I want to do is curl up and sleep until the pain subsides (which it never does).

See if you can acquire some of this medication. It's not as stimulating (peripherally) as Adderall, coffee, or Ritalin, as it only affects the Central Nervous System, so it shouldn't make you more sick than you already are. What is does, is gives you the energy, motivation, and aggression to make you do the things you would otherwise have to suffer through.

Granted, a migraine is a migraine, which still sucks even while on Dexedrine, but taking it has by far made my ability to fight for myself easier, since it takes the 'I'll fight tomorrow when I feel better' mindset away, and gives me the 'NO we're doing this now' mentality, since I know damn well this problem isn't going to fix itself unless I continue to take a stand and demand help from the health industry.

Best of luck to you.


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