Migraines, CDH, and long-term opioids?

i am glad that you get good results with aleve, I cannot take that due to severe gastro-intestinal problems!

Good luck!

-Megan

Megan,

Well, I try not to take it anymore because the Migraine Specialist suggested I not. Because of the MOH. (medication overuse headache). But, it's hard because I have arthrits in my neck, bursitis in my knees and shoulders. But, since I'm not taking them as much and I also stopped a few other meds, it's helping some. Today was a day without a migriane. For me that's good. I'm hoping for better days. I was told taking anything more than 2x a week, throws you into the possiblity of an MOH. So, I'm trying my best to get off of it. I still take it...........only if I "really" need it. And yes, it can be bad on your stomach. Midrin and the Aleive was killing my stomach. I was also on Depakote and stopped that too. I'm currently on Zanaflex, and Neurotin for my migrianes. It's helping some.

Good luck.

Denise

Hi I to have been haveing them for many years My doc put me on an every day thing topamax 200mg 2 times a day mobic 7.5 mg 2 times a day zoloft50mg 1aday nadolol80mg 1 a day and my gyno doc put me on yaz to help with my migraine becuse I get them a week before and a week after and sometimses inbetween I take theses every day. And some mounths Iget no migraines andsome I do But very stormy days I get really bad ones do any one out there get them.

I've had them at least 17 years or more. I'm 42. Some say it gets better as we age. For me, it didn't happen that way. I've been to 4 Neruorolgists. Different doctors. I'm seeing a specialist now, and I do have hope. I know I will always get them, but I know I can learn to not get as many. At least that's my goal. The least medication for me, the better, is what I'm striving for now. Find a specialist of migrianes in your area. That's whay I did.

Nothing but opioids work for you? You've tried the 100+ preventives listed on this site?

It is very difficult and costly for people to try 100+ medications. I understand that not everything works the same for everyone and there are so many combinations but being a guinea pig gets old. If something works, it works. I would rather have an addiction than to suffer every day of my life as I have. Quality of life would be better.

Melody,

Nobody is talking about addiction here. Have you read the article Transformed Migraine - Risk Increased by Some Medications? If not, please do. Opioids change the pain receptors and pathways in our brains. Use of opioids significantly increases our risk not only of medication overuse headache, but transformed Migraine. In that type of situation, taking opiods is like sentencing ourselves a headache or Migraine every day for the rest of our lives.

Dr. Krusz and I WERE talking about quality of life.

Teri

Teri,

Regardless of what you and Dr. Krusz WERE talking about, the lady asked a question & people responded & I gave my opinion. I WAS NOT speaking of opioids specifically and by no means "recommended" them as an end result for her. I simply stated that if something worked for someone..then it worked for them. Please re-read what I wrote for clarification.

Melody

Hi, as you can see the time window has been pretty long and yes it's from another migraine.  This time my hair has not only thinned but has lost 4" on it's own.  This is very freaky.  But I am still holding almost 30 lbs over regular wt. due to the the TPN.  HA's hemiplegic and ice pick being the dread du jour.  From 70lbs to 150 lbs, and labs are barely stable.  I sleep only ten minutes at a time unless I'm reeally medicated.  I have begged to be admitted, to give my husband a break, without being heard.

Last night for the first time ever, he blew up at me, said I wasn't trying to get better, and he has started doubting me about the headaches.  So after 18-19yrs, the boat is rocking.  I told him I am not going to do anything overt, however I can't keep living this way.  I don't know the person looking back at me in the mirror, my body is betraying me by not working, unable to walk, talk garbled speech.  I don't want anyone to see me, I don't want to go out and this is the first time I've posted since last May I guess.  I've decided if I have the recurring symptoms like before I'm just going to go out and save my husband alot of time and trouble.  I just hope he can understand.  I'm hoping there is someone out there that understands this and maybe can help him through, he's funny, wise, smart and I can't stand to look at what this is doing to him.  He said he was never going to marry anyway, so I've just made the last  18-19 yrs. a medical living hell for him.  This is by no means fair to him.  I hardly know what to say anymore.  Any suggestions???????????????????????????????????????

I know it's difficult and costly. It's also agonizing and miserable. Been there myself.

Hell, yeah. Opioids worked for me too, but then we discovered that I NEVER had a pain free day, and that was BECAUSE of the opiods. I was in a rebound cycle. I don't call that quality of life. Plus, I'd really rather not have the brain damage that's now being shown in migraine sufferers.

So, it wasn't until preventive medicine #68 that I found something that worked. BUT, that one helped, and when we added another medication, and eventually some CoQ10, I got down to right around one migraine a month.

At the age of 32, there was just no freakin way I was going to live the rest of my life having to take opioids every single day or be down with a headache or migraine.

Yes, I have found the forms and recently took them to my specialist.  So know we have worked out a plan, if I have to go to the ER, we will try a few things before resorting to the opioids, but if they fail, he has authorized the use of opioids to get me threw.  I have maybe 2 visits per month to the ER, trying to get that under control, I am also on a list of new medications, as you can see from me reply below.  As for the over 100 preventative medications being out there, that is way to many in my eyes.  It takes to long to determine if they are going to work, also some have some horrible side effects, and its really not cost effective, especially for those without insurance.  I just believe that this disease has to many mixed reviews.  When something works that not in the box, its like you are an alien for asking for that treatment.  But until I find someone who can understand where I am coming from, I will continue to try there 100 medications, doing therapies, and all the other components that come along with the disease.

I just want to say thanks for sharing with me!  It is very warming to know certain people are understanding what I am going threw.

-Megan

I hear what you are saying.  I am glad to hear that you have something to turn to in your time of need.  Me unfortunatly, I have to turn to the ER.  I have worked out somethings with my specialist that when I get to the ER, we have a specific treatment plan.  But just going to the ER sucks!  Waiting in line, then waiting for the physician, then waiting for your medicine....I am lucky if I get out of there within 4-5 hours at the earliest, and my most recent episode, landed me a week in the hospital.  So I hope there comes a day when I can control this illness and it doesn't control me!

Thanks for sharing!

-Megan

Thanks so much for sharing.  I am still in the process of trying what they want me to.  Yesterday went for a nerve block, it helped, but they told me flat out that it won't last forever!  And yes, my little one is my greatest concern.  She is the only part of life I have left!  When I cannot take care of her it tears my heart out!  I just thank god that I have support to help with her or i don't know what I would do!  I am now on a new round of about 7 different  medications including zonegran, baclofen, relafen, thorazine, axert, reglan, and lidocaine nasal spray.  Hoping maybe something will work.  But it so hard for me to be optimistic anymore, and as for the experts saying there are over 100 combinations of drugs to be tried, that is nothing to be happy about.  Maybe they have to many ineffective so called treatments, maybe they should hoan in on the most effective ones instead of trying to tell people there are over 100 meds out there, that is not a very exciting thing to hear about.  As for the opioids, that is what works for me when I have a screaming migraine, one that would make me go to the ER.  I can't help it, but that is what works.  And until they can give me something that works that well, I will continue to suffer through all of there 100 different combinations, side effects, and daily disabling conditions.

I do thank you for sharing with me and being honest, its reassuring to know that I am not the only one out there!

-Megan

If the nerve blocked helped, ask your doctors about the nerve decompression surgeries  ---- which are long term effective. 

Or consider Botox injection where they did the nerve block this can give 3-4 months of relief.

As for the botox, I just cannot afford the $500-$600 every 3-4 months and there is no payment plan at my hospital for that, they consider it cosmetic.  The surgeries I am not to sure about either.  I would definatly have to speak to my specialist.  They are just beginning to do an MRA and MRV, maybe that will show something.

Hi, Megan,

I DO hear what you're saying about us trying to encourage you by telling you how many medications can be tried for prevention. You and I don't really know each other, but I hope you know that I talk to you not just from the perspective of a medical writer, but also from the heart of a Migraineur. There have been times when Migraine disease seemed to rule my life too. Sometimes, it helps people know where "I'm coming from" when they know a bit more about me. If you're interested, you can take a look at Excerpt 2 - Living Well With Migraine Disease and Headaches: Teri's Story.

OK, back to the topic of preventive medication. You're right. Our choices stink. Not a single one of those medications was actually developed for Migraine prevention. They're hand-me-down medications originally developed for other conditions, then found to also work for some people for Migraine prevention. We deserve better, and that IS being worked on. It's long and involved, but the main problem is that the National Institutes of Health doesn't allocate enough research funding for Migraine and other headache disorders. That's why I've joined a group of people who have now been to Washington twice for an event called Headache on the Hill to lobby Congress to fix this funding problem. BUT, even though we need better options, I do find it comforting that we have as many options as we have, even if they're not as good as they should be. 20 years ago, we were just out of luck because doctors didn't even know that those 100 medications were possibilities for us.

We didn't take your question lightly when you asked why you couldn't just use what works for you. It worries us that there are people who haven't found effective preventives, and that the only things they've found so far that work for them have potentially harmful long-term implications. As a mom of two and grandmother of nine, I personally feel your anguish about being there for your daughter.

If you take nothing else away from this, I hope you'll remember two things:

• You're NOT alone.
• There IS hope.

with a gentle hug,

Thanks Teri, and it is nice to meet you!  I am learning day by day how to deal with this illness, its just that in the recent 1 1/2 yrs, my condition has gotten totally out of control and of course making me feel as though I have no control over it.  But I have found a new doctor at my hospital, he is a "specialist", coming from Michigan.  So I have hope that we will find a good plan for me, he is also looking into a couple of different things that may be causing me to have this horrible spell, so I am hopeful.  And this website has given me lots of information and hope, and I  do appreciate your answer to my question!  Sorry it caused such havoc!

-Megan

I am now seeing a specialist that has come to my hospital from Michigan.  He specializes only in migraines.  I am keep a diary, and have giving him a list of all the failed meds. I have been on.  He now has me on Zonegran 50mg a day, Baclofen 10mg, Relafen, Axert, Reglan, Lidocaine Nasal Spray and Thorzine as a rescue medication, however, I haven't tried that yet.  So when it comes to trying new meds. I am doing it.  It can be so confusing, and when I am having a migraine, I forget what to take with what....it can really be insane.  But he says I need choices, I guess he gave them to me.  He also has me going to opthomology for a check up, having MRA and MRV of the brain, and I had a nerve block done this past week, seems to help some, but the pain doctor told me it won't last.  I guess I just have to hang in there!

This is a hot topic because for the people with severe problems with headaches ---THEY ARE NOT NOT NOT A CHOICE.  For those that have occasional headaches, or those that have not had frequent headaches very long, the person can have a lot of control over the headaches.  It wasn't until I had 2 surgeries that I know feel I have control over the headaches, I continue to do my biofeedback, yoga, watch what I eat, get regular sleep, eat regularly, exercise, carve out quiet time and by doing all these things I now have control.  I have swallowed over 15 years, I calculate 13-15,000 pills, and still suffered unbearably.  I took them as prescribed and I stuck with them, putting up with side effects and the costs yet still had the headaches.  Again, HEADACHES FOR THOSE OF US WHO ARE LIKELY TO READ THIS FORUM ARE NOT A CHOICE.  Many of us can't afford the meds, or the trips to headachc clinics  --- but somehow we still do it ---- because we are willing to try and do anything for relief.

Before these surgeries, all these things were important for relief, but I still could barely work and be a Mom.  

Megan, 

Your comments show you have a big heart.  They also show you have your act together, you are brave, smart and beautiful.  Try not to lose hope.  Turn to your faith.  Ask for help from those around you.  Be thankful for everything.  Spend time everyday, being thankful for your child, clean water, nice weather, good food, friends and family.  Make a list of all the things to be thankful for  --- and put everything on it even such silly things as dirt for the flowers to grow in.  Place a big sheet of paper on your bathroom mirror that says  "I am healing. I can and will get better."  Keep practicing your biofeedback even if it doesn't seem to do anything.  

These migraines have taught me some huge life lessons.  They have taught me to appreciate everything.  I am stronger, smarter and closer to God.  I am blessed beyond measure.  There have been millions of lessons along the way.  Lessons I never knew, but at times something from the past crops up and I realize there was a reason for what I have been through.  

Teri and Dr. Krusz missed just on thing in their reply to you.  What they missed is what I am sure they know in their hearts.  They missed the fact that FAITH THAT YOU CAN GET BETTER IS ABSOLUTELY ESSENTIAL it is just as essential as following your doctor's advice.  And yes, although it may seem contradictory, the headaches are not a choice.   

Put the note on your mirror, and maybe a few other places.

I wish I could hug you.  Hang in there.

Thanks so much for the positive reinforcement!  I am living day to day, and believe me, I am very thankful for a lot of things.  Especially for the family that cares for me when I suffer and are there for me when I am doing well to talk about things.  I am very thankful for my little girl, she is the light of my life, and to watch her grow and bloom is such a blessing in it self!  Its nice when I can focus on other things than migraines, when I can get my mind off it. Thats when I seem to be at my best.  I didn't realize that my question to the clinicians would create such havoc!  I was just seeking some advice.  Makes me think twice about that now!  Anyhow, thanks for your words of wisdom, I will keep it in  mind....take care,

-Megan

Megan,

Some topics engender lots of discussion, and some of it gets heated. Please don't let that stop you from asking any questions you may have or turning to this site for support?

Teri