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Chronic Daily Migraines


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I'm at the end of my rope here, and I doubt anyone is going to know of anything to help me as my case is just too rare/individual (not rare for here, CrazyMeds), but I might as well ask.  I'm sorry this is so long.  Thank you for reading it.

I have chronic daily migraines.  They became daily about 3 months ago.  I experienced a two week long migraine, in which two trips to the ER did not help, and since that time, I have had a migraine every. single. day.  Previously, I got them about 4-5 times a week.  They also used to come on later at night, and now I usually wake up with them.  Most of my waking life is spent in constant pain.  My tolerance to narcotics has become too high, so, sans morphine, I don't have any painkillers.  I take Percocet, but I only allow myself to take it once every 8-10 days as I don't want an even greater tolerance.  It doesn't help with the pain, it just makes me high so I don't have to concentrate on the pain as much.  I enjoy telling doctors this.  Oh, and the abortives don't work for me.

I have tried all of the following for migraine prevention:  Topamax, Effexor XR, Verapamil, Nortriptyline and Wellbutrin.  I was on Depakote for 4 days but I couldn't tolerate the side effects.  (I was vomiting continuously, then I slept for over 26 hours and threw up in my sleep several times).  The Wellbutrin and Effexor were geared more towards my mental problems, as we're trying to treat two-in-one.  I also have severe depression.  (And OCD, but that's not my biggest worry right now)  The depression /is/ chemical, and was not originally due to my migraines, but now my life events have caused it to become situational as well. 

I have been getting migraines at this extent (4-5 times a week) for over a year.  Currently, I am literally in pain 24/7.  I've had to learn to tolerate a computer screen, as that's the only thing I can do anymore.  I can only spend a few minutes at a time on it, though.  I've had to /drop out/ of school (temporarily) because I couldn't be in class, nor could I keep up with the work.  I literally am not able to /live/.  I spend almost my entire day in bed.  I have no idea what I'd do if I had a job to keep up, or kids to feed. 

My neurologist is entirely useless.  I can only see him about once every two months, as he's too "busy" otherwise.  I saw him today, and we got into an argument.  I told him I didn't think he was doing anything to try to help me, as every time I come in he just hands me another medicine and says "See ya!" for two months.  And takes my money.  He hasn't tried to look for any physical causes at all.  I didn't even have an MRI performed until the two week migraine.  He told me there was nothing else diagnostically he could do, I told him there is /clearly/ a connection that we're missing, otherwise I would respond to the meds.  And it's his job to find it.  No, I don't know what tests you're supposed to do.  That's your job.  Yes, I realize it's not standard practice.  Well, he ended up just handing me a new med (Remeron), and a consultation with a biofeedback doc.

Is there /anyone/ who's had a similar experience?  Not responding to meds at all?  I can't take this anymore.  My depression is insanely bad, it was before the migraines started (well, they may have started around the same time, but the depression was severe before they became severe), and now it's about 100 times worse.  I literally can't do anything at all with my life.  "Normal" life activities like exercise and social events were taken away a long time ago, but I can't even function.  Please, I really need help.  I've been suicidal for so long; the main reason I haven't done it is because of my two closest friends.  I have bad relations with my family.  But putting depression aside, I just want to die because of the physical reasons.  I'm in so much pain constantly and no doctor seems to be able to do anything.  I have recently been diagnosed with TMJ, and I think there's a huge connection there (my neurologist doesn't), but the appliance my dentist gave me made my jaw hurt more, and my migraines more painful.  Because that's the way my body responds to things.  My jaw also hurts constantly.  It's getting so I can't even eat anymore.  Not that I have an appetite.

Thank you for any suggestions or advice at all.  And if anyone has been on Remeron with migraines (I know it's very off label), your experience would be much appreciated.

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I have chronic daily migraines.

me too

Oh, and the abortives don't work for me.

They work for me, but I take so many of them I end up paying up to 600 or 800 bucks a month out of pocket, because my insurance will only pay for so many. This In the last week I have gone through a 2 9 packs of Imitrex 100s and I'm on my 2nd pack of Imitrex 50s (a workaround with the insurance is to have multiple scripts for the triptans--but if they don't work for you...that's useless info)

I have tried all of the following for migraine prevention:  Topamax, Effexor XR, Verapamil, Nortriptyline and Wellbutrin.  I was on Depakote for 4 days but I couldn't tolerate the side effects.  (I was vomiting continuously, then I slept for over 26 hours and threw up in my sleep several times).
This is depressing to me, because my shrink was going to put me on depakote this week for migraine preventoin

I have been getting migraines at this extent (4-5 times a week) for over a year.
Same deal, since before triptans came out...

I spend almost my entire day in bed.  I have no idea what I'd do if I had a job to keep up, or kids to feed.
That's how I used to be, sometimes I'll still get one like that if I don't have a triptan. And then it's a 3 day ordeal. Can't even stop puking or move enough to get to the ER. It truly is a ring of hell.

Don't know about Remeron...how close are you to the NIH? You may qualify for a protocol there. Check out their website.

I am beyond hoping with the migraines. In fact, I seldom visit this board because I know there is nothing that can be done. I'm thankful the triptans work, yet I live in constant fear because I'm spending down my savings buying these freaking pills that cost 10 times more than crack or heroin or something that would at least be fun.

Opiates never, ever worked for me. In fact, opiates increase my migraine pain, which makes it kind of hard to enjoy the buzz.

I think diet and exercise and rebound syndrome are the three keys for me, but I'm too depressed to do anything about the headaches. My list of system failures has a few other items before migraine. Especially since I've had them for 33 years now.

Not much hope from me, but I can relate.

One more thing though, I get infuriated when a doc says, "you shouldn't be having so many migraines!" As if it's my fault! No shit sherlock that's why I'm here!

Good luck.

Suze

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Personally, I would see another neurologist/pain specialist.  Some things that can be done diagnostically, other than the MRI, include a CT scan and a lumbar puncture to check cerebrospinal fluid pressures.  I'm not sure what else they could do, but those are two that you haven't mentioned being done that would seem reasonable. 

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First I wanted to extend a hug out to you.  I have chronic migraines (2-3/week).  I too have tried all that you have and more and can't take any of the triptans because of an allergic reaction to all of them..  In fact, my neuro (a migraine specialist) has mentioned Botox.  But I just can't afford $800 every 3 months and insurance does not cover it.  I have been out of work since August because I just couldn't work anymore because of the migraines.

I can't believe that your neuro waited so long to have a MRI done.  I agree, find a new neuro.  Having a healthy and great relationship can make all the difference.  If he isn't going to listen to you, then take you business and money elsewhere.

My neuro has me now on Lyrica.  It isn't working for me, but it may for you.  It's a new anti-convulsant that has only been out maybe 5 months.

Please keep posting and let us know what is going on.

-Jen

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In fact, my neuro (a migraine specialist) has mentioned Botox.  But I just can't afford $800 every 3 months and insurance does not cover it.

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I just wanted to mention, too, that my neurologist has said Botox should be approved for use for migraines by this summer or fall (2006).  That means if you have insurance, they will have to pay for it as an approved service.  At least that's what he's telling me......

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What my neuro told me was that BCBS of SC and VA do cover it now, but NC will not.  So here's to crossing my fingers!

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I get pretty nasty and long, 9+ hour long, dailies with distorted visuals and all. I started out over 38 years ago in my early teens, thinking I was hallucinating, and getting them just a few times a year, which progressed to a few times a month in my 30s, to twice a week in my 40s, then after a neck injury two years ago, became the dreaded daily migraine. I've had X-rays and CAT scans and MRIs. I've been in and out of ER and Neurology till they're sick of seeing me, I'm sure. I've been on handfuls of NSAIDs which probably bored holes in my stomach lining and definitely gave me rebound headaches, and take-home prescription pain meds like Vicodin and Darvocet and Percocet, which barely touched the pain but at least made me not care as much about it, and in ER on morphine, though you get looked at like a common junkie if you come in once too often for relief. I've been through a whole gamut of meds, preventatives and abortives alike, trying to find the magic bullet, but nothing ever worked well or at all.

Till a few weeks ago, that is. I was prescribed Lioresal, Relafen and Phenergan. That, on top of the Topamax, Inderal, Wellbutrin, Neurontin, and Robaxin I'm already taking. I was pretty out of it for the first four or five days, but no daily migraines, finally! I continued on the three new meds for another week, though I had two small and short migraines the second week, then on the advice of my neuro, stopped them, and was told to resume them only if my migraines started kicking into high gear once again.

I thought I was home free. Wishful thinking. For about five days, I was. But I've now had killer migraines for the past two days, so I've resumed taking the three meds. I'm hoping I get relief as fast as I did the first time. I'm due to go on prednisolone for some nerve damage tomorrow, and I hope that doesn't mess with anything, plus I go on Soma and Darvocet after that. Man, I take a whole lot of crap. Anyway, I'll let you know how it all turns out if you're interested in hearing more.

Anyway, that's what's giving me some hope for the moment. I hope things turn out okay for you. Keep looking. You're bound to find something that will work, if at least for a while. Sometimes, that's all you can ask for in this crazy world.

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I'm due to go on prednisolone for some nerve damage tomorrow, and I hope that doesn't mess with anything, plus I go on Soma and Darvocet after that. Man, I take a whole lot of crap.

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The prednisolone should help your migraines, if anything. Last time I had a really bad one, my doctor prescribed methylprednisolone along with vicodin and valium and an anti-nausea med.

dianeb

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I started getting migraines 4 to 5 times a week when I was about 11 or 12.  Sometimes I get the steady ones that last up to 3 weeks with no relief.  Narcotics don't work for me; I don't even get a buzz (you guys are lucky!).  Sometimes the Imitrex injections will work, sometimes the nasal spray, but the Imitrex pills do absolutely nothing.

I've tried all the wacky preventative meds everyone else has mentioned (including the remeron) but they don't do anything either (except give me bad nightmares, twitches, weight gain, drooling and a score of other nasty side-effects).  The one med that I have tried that DID WORK was an MAOI.  I didn't get a migraine for 4 solid months!  But the wierd thing was I actually missed getting my migraines.  I stopped taking the MAOI because I just couldn't function WITHOUT my migraines, as strange as that seems; I didn't have anything to "push against."

I've tried many non-medication remedies: acupuncture, chiropractor, massage, energy healers, past-life therapy (no, I'm not kidding), hypnosis, self-hypnosis, bio-feedback, and even homeopathy (talk about a waste of money).  Self-hypnosis and bio-feedback are pretty helpful for bringing the pain level down to a manageable throb (though it doesn't seem to do much for the sensitivities).  Sunglasses, ear plugs and sign language are my best friends.

The only things that I haven't tried that other people have mentioned are the prednisolone and Botox.

I've had a CT scan and MRI and few other things I don't recall the names of.  I've been to many neurologists in 3 different countries.  Not one of them has been able to find any cause for my migriains.  Apperently, there are people who are "just born that way."  I don't know if you are one of those people or not, but your neurologist sounds like a butt-head and I think it would be worth going to see someone else.  It's your money, your health, your misery.  Find someone that will at least LISTEN and sympathize with you, and maybe even help relieve some (most? all?) of your suffering.

ETA:  If you have a monitor that lets you turn down the brightness and turn down the contrast, that might help.  I turn my brightness down to zero and my contrast to 25%.  It makes computer time much more manageable.

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I personally don't have any migraine experience, but my brother sometimes gets them. He gets kind of, quasi-psychotic with bad motor skills. Picture the bouncer at your favorite club making strange squealing noises and stumbling. Anyway, when that happens, they apparently put him on pure oxygen at the hospital, which apparently works for him. Thought I'd throw that out there.

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I went through something very similar.  MONTHS of daily migraines that left me suicidal.  I saw doctor after doctor, including neurologist who had the nerve to suggest they were just "stress" when I had been in a severe car accident involving a head injury, knocked UNCONSCIOUS and had never had even normal headaches prior to this.  I had 4 incidences after the accidence where I passed out and when I mentioned this to one of the several neuros I saw the answer I got was "anxiety".  I can't tell you how many times I left doctors offices in tears feeling like a head case.  Please don't give up hope.  It was 4 months after the accident before an MRI of my brain was even done. 

To make this short, I will just say that painkillers never worked well for me because the pain was caused by nerve damage and I discovered that the painkillers were actually making matters worse because they were causing rebound headaches.  When I stopped using all painkillers things started getting better. 

I found a family doctor who was so caring and willing to listen (a rarity I know).  When I finally found him, I was sleeping a total of 12-14 hours a WEEK, I had lost 60 pounds in 4 months, my hair was falling out, I was having nocturnal partial complex seizures, daily migraines and limited movement in my neck. 

He started me on Topamax.  I had run the gamut with abortives (Imitrex caused me to have a seizure 4 minutes after it was administered in Urgent Care on night).  He also started me on Zanaflex because my upper back and cervical muscles he could literally see spasming as I sat in his office.  I was also put on Lexapro for depression (because well duh, by this point I was) and Remeron to help me sleep at night (1/2 of a 7.5mg pill as needed).  He also gave me Baclofen for during the day for my spasms.  Oh, and Feldene.

I am still having some bad days, but they are so much better than they were.  It took some time to get to this place, but I am so glad I didn't give up hope.  I am so glad I keep trying to find a doctor who would listen.  Don't give up!  You deserve answers! 

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^ Sounds like you have a wonderful doc, dumbfox.  That is indeed a rarity as I am learning.  Glad that Topa is working for you.  Be careful of the weight loss factor that it can have as you have lost a substantial amount of weight so far.

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So far so good with him firedancer...I haven't let my guard down yet though.  LOL  I had some really bad nausea with the Topamax at first and then every time I upped the dose, but it did subside.  The first 20 pounds I could have afforded to lose, but after that was not so good.  It does still affect my appetite and so I'm drinking Ensure 2x a day now just to keep from losing anymore.  Ultimately, I probably need to gain back 15 pounds, but I'd like it be muscle.  (Never thought I'd be whining about needing to gain weight.  LOL)

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Good thing drinking Ensure.  I lived off of those until I got my appetite back (around 75mg - 100mg).

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Oh, and the abortives don't work for me.

This is depressing to me, because my shrink was going to put me on depakote this week for migraine preventoin

how close are you to the NIH? You may qualify for a protocol there. Check out their website.

Especially since I've had them for 33 years now.

Suze

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Well, I guess it works really well for some people, so good luck.  But it seems you're in the same boat as me as far as response to medication.

Hm...it's in Maryland, I think.  Not too far I suppose, I'm in New York, but on the western side.  Yes, I will check out their site.

Seriously, how the fuck do you live like that?  I've only been going at it for a year and a half, and I can't take it anymore.  I suppose my depression has a lot to do with it.  Your willpower must be fantastic.

Have you considered consulting with another neurologist?

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Yes, actually, just recently.  I had been trying to get in to see this apparently really great neuro, but I had to wait three months and then my appointment got pushed back two months.  However, I know her daughter.  So I talked to her and begged for her to get me an appointment.  She was happy to oblige.  I liked the doc, but she hasn't done anything to help me yet.  Just put me on ANSAID, daily, and all that's done is make me more nauseous.  She doesn't want to treat me until I see a psychiatrist, which is smart, really.  She's going to work together with him.  I see him soon.

Acupuncture.

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Phobia of needles.  No, not pain, the needles themselves.  I'm willing to try it, I just don't know if I'll freak out.

My neuro has me now on Lyrica.  It isn't working for me, but it may for you.  It's a new anti-convulsant that has only been out maybe 5 months.

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I too have had Botox suggested to me, but I don't know if my insurance covers it, and I need to learn more about it's results in clinical trials before I go at it.  Thanks for the info, I'll bring it up to my docs.

Till a few weeks ago, that is. I was prescribed Lioresal, Relafen and Phenergan. That, on top of the Topamax, Inderal, Wellbutrin, Neurontin, and Robaxin I'm already taking.

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Awesome!  I hope they go away the second time.  My neuro was never willing to try cocktails, but my docs probably will be now.

I didn't get a migraine for 4 solid months!  But the wierd thing was I actually missed getting my migraines. 

Sunglasses, ear plugs and sign language are my best friends

ETA:  If you have a monitor that lets you turn down the brightness and turn down the contrast, that might help.  I turn my brightness down to zero and my contrast to 25%.  It makes computer time much more manageable.

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That's awesome that you found something, even if your mind couldn't handle having no migraines.  I'm very reluctant to try an MAOI, though I will if a doc suggests it.  Heh, mine are face masks, ear plugs, ice packs, and the ability of my closest friends to understand me even when I'm speaking in screwed up syntax and only getting half my words through my mumbling. Yeah, I do turn down my brightness and contrast, but sometimes it makes me strain my eyes, which certainly isn't helping the headache.

Anyway, when that happens, they apparently put him on pure oxygen at the hospital, which apparently works for him.

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I've heard of that as well, but forgot about it last time I was in the hospital.  If I ever go back there, I will suggest it.  Thanks.

who had the nerve to suggest they were just "stress"

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Yes, I've had MANY people, and a few docs suggest that to me as well.  Doctors also had the audacity to tell me that my (undiagnosed at the time) SVT was caused by stress.  Which is why I didn't go back there, spent two years suffering without telling my parents, until I had an event in school and was forced to the ER.  I'm glad you've found something that helps, though.

  Be careful of the weight loss factor that it can have as you have lost a substantial amount of weight so far.

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Yes, I was on Topamax and Wellbutrin at the same time for a while, I also had daily nausea because of my migraines, and there's also the fact that I lost my desire to eat back in the beginning of my depression.  So, knowing that starving myself to death would be very painful, I ate food.  But only food that tasted good, since my stomach had major issues with it and I didn't want to eat it anyway.  I gained some weight, but luckily I'm rather thin so it wasn't too bad.

I did not start taking the Remeron, I waited until I saw the new neuro, who also told me to wait until I see a psychiatrist.  I have also tried a new appliance for my TMJ, I suggested it myself; the NTI.  It's apparently designed specifically for migraine patients.  Well, been wearing it for two weeks, my migraines got worse the first week, and now I think I'm just adjusting to the additional level of pain. 

Edit:  By "worse", I just mean more painful.  They can't get any more frequent.

I don't understand why it's not working for me, because based on the mechanics of it, it should as long as everything is placed the way it's supposed to be.  It's not a matter of brain chemicals, which are much more complicated and unpredictable.  Thanks for all the advice and support, I'll post back after I see my psychiatrist.

Edit:  Damn, that took me forever, once I figured out I couldn't use the BBCode on the reply page to do quotes.  If I replied to different parts of your message, sorry, but I couldn't split them up.  It took me far too long.

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