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Migraines-I need some friends that are going through the same thing as me

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Posted 10/20/2007 9:35 AM (GMT 0)
I'm 18 years old and I've had Chronic Daily Migraines for about 4 years.  I think I've been on just about every medication there is for headaches, and my doctor agrees.  I've had several doctors tell me that I'm just going to have to "learn to live with them."  One thing that I've learned is that it's close to impossible to really "live" with chronic pain.  I am able to get shots of Demerol in the ER once every two weeks, other than that, all I can take is tylonal, which doesn't work in my case.  I've been told that it's "all in my head" so I've seen several psychiatrists and pyschologists and they have all told me that aside from the depression caused from the pain, I'm perfectly fine.  So, I've pretty much given up on finding any kind of permanent relief.  I would really like to talk to people going through similar things though, as it does help a bit with the depression to be able to talk to someone who actually knows how you feel.  So if anyone wants to talk, feel free to reply to this or send me an email or IM.  Thanks :)
Posted 10/21/2007 2:11 AM (GMT 0)
Hey, I'm 25 and have had migranes since I was 12 years old. Back when I first stated having migraines, they didn't have all the new drugs and preventatives that are out there now, so I was stuck with pain killers that didn't work....so I know how you feel. It seems like everytime I think I find a medicine that works, it backfires a few months later....its a difficult process. I've been put on frova recently, which is time released so it helps those who have "rebound migranies", and it has been doing pretty well for me with a combo of topamax as a preventative. It is our burden to bear, but we are strong!
Posted 10/21/2007 4:22 AM (GMT 0)
I take Keppra for preventative. But I still still get migraines. It took a while to find a preventative that works, only problem is I am still getting migraines, just less often. I do get tension headaches very often and just got steroid injections in my neck for that so I am crossing my fingers.
Few weeks back I got a migraine so bad the Zomig did not help or any other med I had on hand so I had to go to the er, I got IV benedryl and compazine and it did the trick. I was so happy! I told the ER doc, please do not give me any narcs, I get rebound headaches. so bad. Of course sometimes we have no choice and have to take them, but man I hate those rebound headaches!
Posted 10/21/2007 6:18 AM (GMT 0)
None of the preventatives I've tried has helped at all, my doc said that I just have to treat the symptoms of the headache when they become too intense. Luckily for me, I don't get rebound headaches from any of the narcotics. My problem with the meds is that my body becomes used to them very quickly, so they don't affect me as well as they should. I'm always given the maximun dose of meds because even that barely touches the headache :(
Posted 10/22/2007 1:06 AM (GMT 0)

I would be VERY careful taking over the counter medications such as tylenol, not that I am saying they are "dangerous" but for a while (when I first had migraines) I would take advil, tylenol etc and my migraines got worse. It was "rebound" aka medication overuse headaches. Since they were not strong enough, and did not last long enough to get rid of migraines I felt like I would take one or two and then have to take more later as they wore off.

Since educating myself and learning what will and won't work for MY migraines I have not had a regular tylenol or anything like it in YEARS. I take things that are specific to migraine pain and ONLY in the amounts that are prescribed and I have found that the migraine pain is less and less severe than "rebound" headaches.

Let me know if this makes sense

Posted 10/23/2007 5:34 AM (GMT 0)
It makes perfect sense to me, I used to take large amount of tylonal and if I took enough, I would get rebounds. But that was only if I took 8 at a time every 3 hours...I haven't done that in a long time now that I know how much that really does affect you. By taking the normal dose, or even double the normal dose (which I don't do often) I don't get rebounds because I don't take it often enough.
Posted 10/23/2007 3:14 PM (GMT 0)
A recent discovery found people with migranes was low in serotonium. You may want to request your doctor check your level...Some foods also cause the level to be low and you may need to take some supplements to build it up but it will solve the migrane problem.
Posted 10/23/2007 11:59 PM (GMT 0)

Hey Liz-hopeless,

First of all, welcome to the Migraine Board!  You say that you suffer from CHRONIC DAILY MIGRAINES.  What medication(s) do you take for these, and how often?  You may be suffering from both migraines and rebounds because of the medication.  Any kind of pain med, prescribed or OTC, can give you daily rebound headaches, which can be as painful and debilitating as full-blown migraines. 

I have major back pain on a daily basis, in addition to frequent migraines, so balancing the back pain verses the rebound headaches are tricky.  Something hurts all the time.  The rebounds really keep me from doing anything constructive, as I'm just too miserable.  I can't take NSAIDS (aspirin, ibuprofen, motrin, etc...), so Tylenol and prescription pain meds are my only options.   By the way, taking too much Tylenol can do irreversible damage to your liver.  Thus the warnings to take as directed.

Let us know what your daily medicine regime is and we can probably better advise you.  Best of luck!

Leigh Ann cool

Posted 10/24/2007 3:11 AM (GMT 0)
Thank you for the welcome :)

Right now I take:

MigreLief 2X a day (it's 180mg Magnesium, 50mg Feverfew and 200mg Ribflavin)

200mg of Vitamin B6 in the morning

200mg of Elavil at night (soon to be 250mg)

800mg of Tylonal 2X a day PRN (usually 2X a week)

50mg of Phenergan PRN (usually 1-2X a week)

125mg of Demerol and 50mg of Phenergan IM, once every two weeks

 

Posted 10/24/2007 4:19 AM (GMT 0)
Liz--
What different antidepressants have you tried? I truly hope that your migraines are directly treatable, but sometimes if you can find something that improves your mood, it makes the pain just a little more bearable.

Oh, and who has seen you/where have you been treated for your headaches? Just give me a bunch of information :P I'm in a really similar situation, neurologists not sure what to do after 5 years of treatment.
Posted 10/24/2007 4:37 AM (GMT 0)
The anitdepressants I have tried are:

Prozac, Celexa, Paxil, Lexapro, Zoloft, Marplan, Nardil, Elavil, Pamelor, Sinequan, Surmontil, Remeron, Wellbutrin, Cymbalta, Serzone, and Effexor.

None of them have helped with my headaches, but Prozac and Wellbutrin helped with the depression a little.  I had to stop taking the Prozac because it made my insomnia worse and I had to stop taking the Welbutrin because it made me sleepwalk more.  Lol, it seems like everytime I find something that helps, it makes something worse.

Posted 10/24/2007 4:46 AM (GMT 0)
Well, you've tried some I haven't and vice-versa so I won't try to recommend anything. Interestingly enough, I have the same tolerance that you seem to have to medication. I take high doses of multiple drugs for insomnia, abortives that knock other people out don't even make me yawn, and when I was on a Lidocaine drip I went to a higher dosage than they had ever put anyone on without them experiencing hallucinations and/or pain relief.

What are the qualities of your headaches? Although you say chronic I think you mean constant, yes? Do you have particularly localized pain and/or aura?
Posted 10/24/2007 5:02 AM (GMT 0)
Yeah, I can be put on large amounts of meds without much effect. My Elavil dose (for my insomnia) is about to be increase to 250mg, which is a pretty high dose, my doc said he had never prescribed that high of a dose for it before. When I get 125mg of Demerol and 50mg of Phenergan, I don't get tired at all and it never takes the headache away completely.
In the past 4 years, I haven't gone a single day without a migraine below a 4 on a scale of 1-10. It's always behind my right eye. I don't get an aura because I don't have time without a headache.
What are the conditions of your headaches?
Posted 10/24/2007 5:14 AM (GMT 0)
It sounds like you've tried a lot, but I'll throw out some ideas anyway. When I tried Botox injections I was told that they're more often helpful for people who have pain behind their eyes. I assume you've tried nerve blocks. Have they done any good? Have you had injections to the temporal nerves and the superorbital nerves (former is front of your ears the latter is around the middle of the eyebrow). If these have helped at all (they decrease my pain a little personally, but not a lot) sometimes a nerve stimulator can help (I just finished two trial surgeries for two different placements).

At one point I was taking 1200 mg of indocin a day and 1500 mg of mexilitine (apparently the highest they've tried in the US). I used to take 50 mg benedryl, 50 mg phenergan, an ambien and 3 mg of klonapin to just make me sleepy. But my headaches are generally from my upper forehead to the middle of my head, sometimes stronger on one side than the other and sometimes some tightness behind the eyes. When I take narcotic painkillers I get down to about a 4/10 (maybe a little less, but that'd be the lowest I've been in five years). Without them I don't get below a 6, usually around a 7.
Posted 10/24/2007 5:27 AM (GMT 0)

I tried Botox, it wasn't helpful.  I've had several nerve blocks before, some in the back of my neck, but most were superorbital.  One of the superorbital ones helped a little bit for about 4 hours, but when I had a semi-permanent nerve block done in the same spot, it didn't help.  The neurologist said that it was probably just the numbing agent that helped, he said it must have hit a certain nerve just right. 

I have a friend that I met in a hospital that has headaches like yours.  Hers were caused from a seizure disorder she didn't know she had.  I assume that you have been tested for seizures though, especially after 5 years. 

Your pain levels sound pretty close to mine.  After I get the demerol and phergan my pain level goes to a 4 or 5.  A day or two after that I'm back up to a 6 or 7.  Within a week I'm at a constant 9, which soon turns into a 10.  And of course, stress makes the pain increase quicker.

Posted 10/31/2007 6:05 AM (GMT 0)
I was involved in a car accident on 12-23-05. I have had a migraine every day since then. I have damage to my 7 of my discs. In this time I have gone thru extensive physical therapy, steroid epidural shots, etc. to try and find relief. I finally found some help when I went to see a pain management specialist who put me on Topamax. I had to go to the ER for pain shots of demerol, I even have demerol pills at home, but it seems like regular pain killers cause rebounds headaches to be worse. There are a couple of meds you can try that you may not have I will list them just in case you want to ask your doctor about them. Fiorinal, Fioricet, Cafegort, these are for "migraines" also something like robaxin for muscle spasms has seems to help if you have any feeling like a mix of a migraine and tension headache. I also recommend ice paks, ear plugs, a good pillow, a sleeping mask. When I am at my wits end I lay down with my head covered with an ice pak, my eyes covered, my ears plugged to its completely dark and quiet. Sometimes thats the ONLY thing that keeps me from losing it. Also caffine, drink esspresso, consuming caffine which if pretty much what a good part of most "migraine" pills helps to ease the pain. I buy Starbucks double shots in the little cans for emergencys (away from home or something). They are a little expensive but anything that can help when your in that much pain is a godsend. Good luck.
Posted 10/31/2007 5:51 PM (GMT 0)
FYI sassy,
Unfortunately, Fiorocet/Fioronal is one of the worst rebound causing drugs available. It's more likely to cause rebounds that opioid painkillers. Cafergot has the same risk and all three of them also carry risk of dependence/addiction.

Also, while I feel that caffeine does help my headaches occasionally, many/most headache specialists recommend that a migraine sufferer consume little or no caffeine for similar reasons.
Posted 11/14/2007 8:34 AM (GMT 0)

Liz,

Have you tried any tricyclic antidepressants, such as Nortriptylene?  I found that it was helpful for ~2 years, and then it wasn't anymore.  Also, has your dr. tried you on Topamax?  I didn't find it helpful, but many of my friends who also suffer from migraines do find it helpful...at least for a while.

Currently, I've found the medications that have had the most impact on my daily headaches/migraines are: Lyrica (a nerve pain med), Verapamil (a channel blocker), and Migrelief (the supplement you are already taking).

I also have a very high tolerance to medications and feel your pain.  I hope you can find something to help you. 

Posted 11/15/2007 10:10 AM (GMT 0)
hi I have suffered with Migranes since i was ten and have found over recent years that any and all medication over time stops working I have had the injection been for scans and basically been told learn to live with it however the latest thing from my conultant is that Because i am sligtly over weight that is why i get them more often. the pnly medication that i found stops them in there trax is Maxalt wafers. But they have to be taken early and you are only allowed six in a month and if like me you suffer alot with them then you are u the creek without a paddle. I did try altyernatives but they donot really work. Unfortunatley all i can say is find your triggers and try and avoid at all costs my main trigger is caffine! and dairy. My wife suffers with them as well and we have found her trigger of chocolate.
Posted 11/16/2007 5:35 AM (GMT 0)
Hello everyone :)

Sassy, the three meds you mentioned all make me jittery and none really helped with the migraines, but thank you for the suggestions :)  Caffiene is something I really have to avoid because of my insomnia and I don't want to have to deal with caffiene withdrawls or rebounds.

Tikitana, I did try Pamelor, which is nortriptyline I believe.  It wasn't helpful for me.  I have been on lyrica before, I took it for about 8 months, it didn't help my migraines, but I didn't have any side affects from it so my doctor didn't see any harm in continuing it.  Verapamil and Topomax didn't touch my migraines either.  Having a high medication tolerance makes treating headaches difficult, I am glad that you have been able to find something that helps you :)

Lightsabr, I know how you feel.  Whenever I find something that helps slightly, given time, it stops working.  I have been told that I'll just have to learn to live with my migraines as well.  I used to be overweight, but using a lot of will power I was able to make myself exercise more, despite the increase in the severity of my headache, and was able to lose 40 pounds.  I'm now at the weight that I should be, but I haven't seen a difference in the pain.  I can't take things like Maxalt because I have a migraine of some level all day, everyday, so I can't ever catch it before it gets bad.  Heat and strenuous exercise makes my headaches worse, they don't trigger them, but I tend to stay away from them anyway.

Thank you all for your posts, I wish you all the best of luck!

Posted 11/17/2007 4:04 AM (GMT 0)
Liz, i thought I was reading my own story. I started having migraines in middle school. I see the top neuro's in my area, seen the specialist etc, and they all say I've tried every medication known to treat migraines, then some. The only preventative that helped me was Topamax, but it caused me to have kidney stones, and major cognitive effects. I too have been told 'its all in your head', had many a doctor litterally give up on me and not see me anymore, one dx'ed me with Bi-Polar, which I DO NOT have and most agree.
I've had doctors yell at me, compare me to Nicole Smith, call me a drug seeker, and on and on.
I've finally realized doctors aren't going to do me any good, so I took things into my own hands(see energy med and psych-k below)
I too have imsomnia really bad, and i wonder if that plays a BIG role is our headaces. But, when I was on Ambien, it really made my h/a's worse.
I also noticed that when I got off my depression med, Prozac, after a few weeks they decreased in freqency. I AM NOT SAYING TO STOP MEDS. Getting off my meds took years and I suggest doing it with the help of a doctor, even though my doctors think i'm crazy for getting off meds.
Have you ever tried anything like Stadol NS or Fentanyl suckers? They do wonders and limit the ER visits. You may see if a Pain mang. doctor will help you. a neuro isn't going to prescibe anything for pain. I don't understand why they would rather you go to the ER every two weeks instead of giving you something for pain to take at home.
I do something called Energy Medicine (there is a facilitator in my town). There is a book by Donna Eden that has really helped me.
Since doing energy medicine and something called Psych-k, I'm down to about 1 'i need a shot' migraine a month aposse to the 1 a week before. I am off my anti-depressant and anxiety medications, and I'm slowly getting my tolerance level to meds back down. I'm like you, I can get 4 of Diladid in my port and walk out in a straight line. I can drive after a stadol shot(well the first 30 minutes). For example when they put in my port, they just give you meds to make you go to sleep, not anastheia. I had benadryl, fentanyl, phenergan, diladid, ativan, and something else like a muscle relaxer and didn't fall asleep untill it was all over (not fun may I mention). I can take an ambien and be up all night. So I understand the frustration.
I really do suggest looking into the energy medicine. Its facinating and has done wonders for me. Some people think i'm crazy, but it works.
I know this post has been random and not of much help, but know your not alone and we are all here to support you.
Best to you,
Ang
Posted 11/19/2007 12:25 AM (GMT 0)

Hey AngMichelle,

When you were taking Stadol NS, how was it prescribed for you, and how long did a bottle last?  It is the only thing that will abort one of my migraines, but doesn't really help if I don't get it onboard just as the migraine is beginning.  This happens frequently, as I wake up with a migraine several days a month (usually when a weather front comes thru during the night).  I was also taking a low dose of Lortab (5/500) for acute chronic back pain.  My PCP was only giving me 30 a week, which meant I was only getting some relief 8 hours a day.  Every week I had to jump through the hoops to get it refilled.  He wanted me to stretch out my Stadol NS for a whole month.  That was pretty assinine if you ask me.  How are you supposed to decide which migraine should get treated and which should you have to suffer thru.  DUH!!! eyes

I've been averaging having to get a pain shot about once a week.  Usually 10mg Nubain/50mg Phenergan, which usually works, but doesn't knock me out all the time.  I've been having monthly follow-up appointments with my PCP for the past several months.  This past week, he decided that the amount of narcotic medication I was taking was far too much!!!  I am scheduled to see a pain management specialist at the University of VA Medical Center on Tuesday (over an hour from where I live).  I've been there before but didn't get any help with my migraines.  The gave me a round of occipital nerve blocks which did not help.  My PCP decided to throw my entire pain management issues on them and let them manage my pain.  He said he wouldn't be prescribing pain medication for me anymore.  The Pain Management Center is strongly opposed to using any narcotic medication for anything.  I guess they might make exceptions for people with terminal cancer, but who knows.  I've just taken my last Lortab, and I'm at a loss as to how I'm supposed to have any quality of life without the only medications that give me any relief. confused   Guess it just sucks to be me. sad

Anyone know of a good doctor or pain specialist on the east coast who isn't afraid to treat chronic pain issues with narcotics?  I'd go just about anywhere to get decent treatment.  I have a right to a decent quality of life, but I haven't found a doctor yet willing to work with me for years.  Can we say "hot potato"?  Geez...I feel like the baby being thrown out with the bathwater.

Leigh Ann cool

Posted 11/20/2007 5:51 PM (GMT 0)
Ang,

My doctor tells me it's too easy to overdose on Stadol NS or things like that, he says he'd prefer I was in a safe place to get a safe amount of drugs.  I looked up the Psych-k.  I'm glad it works for you, that's really great :)  However, I find that I am just not a positve person anymore, positive re-enforcement is out of the question because, no matter what, I just can't make myself believe it.

Leigh Ann,

I know just how you feel.  My doctor told me he wasn't going to give me anymore narcotics because "they don't seem to help you very much anyways."  I couldn't get him to understand that even a little relief in the migraine was a huge relief to me, he kept saying that it didn't make sense, which it wouldn't if you've never experienced a migraine.  One of my other doctors gave in yesterday when I had a complete breakdown in front of him because I haven't been able to go to work or complete my school work, which are the only things I really do anymore.  He gave me 20 Tylonal#3 and said I could get it refilled in 30 days or more.  Even though that wont provide me with much relief, I am so looking forward to it.

Best wishes to both of you,

Liz

Posted 12/7/2007 8:38 PM (GMT 0)

Liz- I'm so sorry to hear you are in so much pain.  I can't relate to the high drug tolerance levels, but I can relate to what I also call chronic migraines (daily, never ending migraines). I was in bed for a year and a half with what literally was a daily, never ending migraine (the pain level never dropped below a 5 on a scale of 1-10). I saw someone ask earlier what doctors you are currently seeing, but didn't see the answer.  If you're not already, I would really advise you to seek out a neurologist who specializes in migraines.  Usually these neurolgoists don't see any patients except migraine/headache related cases.  I went through a slew of doctors who thought I was exagerating the pain level and occurences of my migraines, doctors who just guessed and threw numerous different drugs at me (telling me to try this for a while, and come back in a few months for a follow-up), etc.  When I went to a neurologist who specialized in migraines it was the first time a doctor really listened, had some answers, and set up a logical/feasible treatment plan with me.

Wishing you a peaceful day!

http://www.myspace.com/nomoremigraine

Posted 12/12/2007 6:37 AM (GMT 0)
I suffered for over 23 yrs. with deblitating migraines, moved from my house and the migraines went from every day of every week of every month to once to twice a week, the house had a toxic mold growing under the house that invaded my body. This is something I never knew about, had never ever had it mentioned. I suffered needlessly for 23 years now the damage is done even though I have left the house and spent many thousands to get the home repaired so no one would ever have to go through the agony i felt and still feel just not as much thank goodness. Wonder if anyone else has ever had mold or fungus cause them migraines. God bless you all and know that I pray for every migraine sufferer, I can most definately relate,
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