Medication Overuse

Hi everyone, long time since I've posted on here as life has been ticking over the same and therefore not a lot to say about my migraines, although I try to read your posts as often as I can.

Anyway, in September my GP decided to refer me to a neurologist (at last!). I've been a migraineur for 40 years and the last 10 have been particularly difficult. I need to work and to enable this I medicate, giving myself weekends medication free. As a consequence my quality of life is shite!

At the point of referral, 15th September, I decided to give up all meds. It was bloody hard, lots of time off work but I felt this was what the neurologist would ask me to do and I wanted to be past that stage by the time of my appointment. I've made the stopping sound easy, but as you can imagine it was very, very hard.

Within a month I had less migraines and since then I've reduced the frequency of 16 per month by half. The neurologist was very pleased with this and stated it's always beneficial to give this a try albeit a very scary thing to do. He tells me no more than 3 triptans per month and no more than 1 triptan and 1 otc per week. I'm not sure about this because with unbearable pain how can you suffer so much?

Many years ago I took propanolol, they did help, and he's put me back on them. He believes if I can stay on low doses of meds then my situation should carry on improving.

So, everything is crossed for the future.

I know my migraines are not as bad as a lot of you on here, so I hope I don't sound too flippant about reducing meds.

Ella

My neurologist told me I could take something no more than three days per week. I have stayed with this rule, but honestly, it did not make a difference in my headache frequency. I just spent more days miserable.

That said, some people on here report a benefit from taking breaks from medication, and some people do not. It seems to be an individual thing.

ella and migrainegirl, you both did a very brave thing. i really admire you for having the courage.

i don't have it; not when i must work at the age of 72 and MUST be able to function with my daily migraines (therefore, daily or almost-daily triptans).

a year or two ago, an extremely arrogant neuro made up his mind about my story after listening to me for about 30 seconds. he left the room and came back with a paper on "MOH", and he was absolutely sure that i would have to give up all drugs or there was no hope for me. triptans are the only thing i take, other than sleep aids (for me, better sleep equals less pain).

"yes, but" (i wanted to say) "what about the first 25 years of killer pain, when i took not so much as one ASPIRIN?" i will never again darken the door of another neurologist, unless one moves in next door and i can chat with them in a home setting!

for those brave souls who can do the no-drug thing, i surely do admire you. life is too short for me to consider being even more miserable. my triptans keep me functional, but do NOT take away all pain, by any means.

my heart has been checked out and is fine, even with the giant amount i use. i realize i'm taking a big chance for my future, but feel i haven't any other choices. each case is so individual, and most neuros do not seem to get this at all. where is their compassion and empathy, i wonder? if they ever had even one migraine, perhaps there would be a whole different attitude.....?
dianne

Diane, I agree with you. Take what you need to in order to be functional. I think that is all we an hope for at this point.

Hi there everyone. It's a very long time since I posted on here too. I looked in this evening and seeing this thread, thought I'd come on in case it helps anyone.

Like Ella, I've had migraines for over 40 years but over the last couple of years things deteriorated and for the last year or so, I've been taking a triptan almost every day. It meant I missed less work and actually got to family weddings etc but as time went on the migraines never really cleared and I invariably felt lousy much of the time. Occasionally, another full-blown migraine would start in the evening and I would take yet another triptan. Prior to visiting the Neurologist, again like Ella I tried to cut down the medication myself but failed miserably - I really admire you Ella for your self-discipline. I did it on my own under the recommendation of my GP a couple of years ago, but things weren't as bad then but I didn't go cold-turkey for long enough.

Anyway the Neurologist recommended a 10 day stay in hospital to wean off the triptans and although I was terrified, I knew I had to do it. I went in in September and they put me on steroids, which took off the very worst of pain at first. It definitely wasn't a ball and things weren't great when I came out of hospital but . . . . . gradually things started to improve and now even though I still often wake with a headache, they actually go away instead of turning into a full-blown migraine. I've taken about 5 or 6 triptans in over 2 months, compared to over 60.

It certainly isn't for everyone and everyone is different and what works for one, doesn't work for another. It was just something I instinctively knew I had to do. It may all go pear-shaped in a while and who knows what's round the corner but for now, things have greatly improved.

Dianne, I'm sorry you're still getting so many migraines and I understand your feelings entirely. While taking the daily triptans I (and my husband) looked on it as balancing the quality of life. However, when it got to the stage I was feeling awful most of the time, I knew something had to be done. Even then though it took me a long time to act. All the best to you.

Liz

hi everyone

something interesting I've noticed about using triptans recently. I set myself an experiment which has not been easy to do but I wanted to see once and for all if there is anything behind this rebound headache theory.

I take triptans when I'm in pain, which is a lot .....but lately the triptans have not been working as well as they used to. They don't abort the headache completely anymore it usually comes back within 8-48 hours so I am then faced with taking another triptan again.

I'm not currently working (because of migraine) and my children are now grown up I decided for the first time in 10 years to not take another triptan if the first one doesn't work. It was hell, because for a long time I've avoided getting into full blown migraine state by using triptans but I persisted with it. The past 2 migraines I've had I did this....and each migraine lasted an agonising 5 days until it subsided but something interesting happened....I noticed that if I let the migraine run its natural course which is 5 days for me from start to finish, then I don't get another for a couple of weeks. I've been migraine free for 15 days now.

This is very unusual for me. I've had mild headache but nothing that needed even OTC medication.

I understand that not everyone is in a postion to do this if you have a job or children to look after and thats where triptans are a godsend, I don't think anyone should feel guilty or worry about taking them in those cases I used to take 12 a month at one time when my kids were small.

I just thought I'd share this, I don't really believe in rebound headaches as my migraines can stop for periods of time suddenly with no warning and I no longer need medication but I am beginning to wonder if triptans somehow supress a migraine temporarily therefore increasing the duration of it so it seems like the migraine is never ending, does that make sense?

Jul

Yes, Jul the way you explained it all this makes perfect sense.

I have been wandering lately about triptans, since it is definitely not as effective as it use to be. I have been having a rather bad spell of M recently, and so it was interesting to read your posts. I am not sure how I feel about triptans, I think we need to be aware that rebounds do exist.

But I might try something else to stop the cycle like another steroid/lidocaine injection which helped me a lot in the past by reducing frequency of M. But at the moment I am not feeling well with Fibromylgia flare up and I really,really do not feel like a trip to London (where I have my injection). I also I think that my bad head lately might be caused by all this inflammation due to Fibromaylgia flare. IT is always complex picture when it comes to M.

I am very impressed by the way you and Ellen made such a difficult decision and stopped triptan, this is really brave thing to do, especially without any help. I am especially pleased that it worked so well for you. Great!

However, I just thought that I will also mention that there is more easy way to do that, by going to hospital and getting DHE45 injection under supervision, and this can help with pain reduction, when you try to break the cycle of taking triptan, or anything else. Or like Liz, doing it with the help of steroids (again under supervion).

BTW Liz, did you get the steroid injections, or taken them orally?

Of course, as you said, not everyone is able to that, due to work or family commitements, but it is much easier and you save yourself some pain.
Each person here is doing their best to tackle this condition, we do what we can, under the circumstances.Diane your way is also good, as long as it works for you. You are the best judge of what is best for you.

It is good to share our experinces here becasue it can get terribly lonely dealing with this complicated condition, otherwise.

It's tough to stop taking pain medicine for migraines. Most sufferers hurt so much, they'll sacrifice that small amount of relief instead of thinking about the rebound headaches that can come from to much pain reliever.

A nurse told me one time that the headache doctor was taking all of one patients medicines away from her because he had given her to much, and was it was making her head worst. My wife was at one time rebounding from to much pain medicine. One of her pain management doctors said that they could not help her until she stopped taking the pain medicine her "doctors had prescribed".

What we've found out in our 15 year battle (she had occasional migraines for years) with migraines, (10 years with a 24/7 headache), is that most doctors just give the same medicines for migraines. Most have the same methods of treatment, and most doctors should be just treating mild to moderate headaches.

I stayed so ticked off, I ended up building a web site for migraineurs. It may not be the best, but with over two hundred and fifty pages, there's something there that gives good advice for migraine and headache sufferers.

Some headache sufferers think that if their head hurts, and they go to a neurologist, they are headache doctors. Although all will treat headaches, they are NOT headache specialist. But headache specialist are also neurologist, but all they specialize in are headaches. They know much more about headaches and migraines.

There are headache specialist, and then there are GOOD headache specialist. If your headaches are bothering you almost everyday, then research good headache specialist, and go. (We finally found one after 15 years)If not, and one doesn't manage their migraines, one is in for a long time of suffering. Remember, 95% of headache sufferers can find relief by managing their headaches or migraines. Some type of trigger, whether it be a food, beverage (alcohol, stress, to much caffeine, bad sleep patterns, missing meals, anger, the list is long when it comes to raising your threshold to a migraine level.

But about 5 to 10% of migraine sufferers aren't helped by pills. Those are the ones that need help.

No one mentioned herbs, vitamins for treatment, and even a deficiency of magnesium in some people will cause headaches. We know because we have friends that have migraines. Some have mild, to others with severe. We get e-mails from all over the world, and we hear about the darnest things that trigger their migraines. (Red peppers, aged cheese, alcohol, cologne, aspartame, Splenda, and much more) Some doctors recommend feverfew, or butterbur for migraines. My wife wouldn't take feverfew because it looked yucky. Go figure.

Don't leave a stone upturned when it comes to your migraine relief. I know, this is a long page but we do want all to think about other options for headache relief. As one doctor told my wife, the better you take care of you, the more efficient ones medicines will be. He was right on that one. And some methods of treatments may cost nothing. You can read about migraines for sometime on our site. Who knows, you may think of something, that will help the headaches.

All the best with those headaches.Migraine help

An excellent post. Thanks for the perrspective and the link!