My medication holiday...

BTW, I don't think it's quite fair to say all natural approaches are bad. Many people here have found good relief from various types of vitamins and supplements, chiropracty, even acupuncture. And the prescription drug route has been both a mine field and ineffective for many. And I certainly did not start out with this predisposition towards natural approaches. I've just learned the hard way.

That said, the one thing I have learned is to be careful of what you are taking. Read the labels and educate yourself on the side effects and how the treatment works in your body. Read the research on how effective it is, if there is any. There certainly are snake oil salesmen out there. We've seen a few post here. Many things on offer seem to be placebos at best, untested hype, and possibly harmful. If someone is making money selling you something, that is a good reason to look double hard at it. But we have to balance that with being unwilling to try anything new. Unless we keep trying, we will never get better, and that is not acceptable.

one thing I have learned is to be careful of what you are taking. Read the labels and educate yourself on the side effects and how the treatment works in your body. Read the research on how effective it is, if there is any. ....Many things on offer seem to be placebos at best, untested hype, and possibly harmful. If someone is making money....that is a good reason to look double hard at it. But we have to balance that with being unwilling to try anything new. Unless we keep trying, we will never get better, and that is not acceptable. .Migrainegirl

Wise words, Migrainegirl. I totally agree.
I think we know by now, that there is no one route solution for migraine. We all need to find our own way od dealing with it, and this can be only done by trial and error. Plus a large dose of common sense.

I like to keep an open mind, but some solutions scream trouble (like snake oil type of thing, or overprescribed heavy duty combinations of painkillers, taken in large doses, and over very long period of time) so we need to be aware of that.

Even if it does not bring expected results, taking medicine holiday can be an excellent way of re-ajdusting and giving our body a rest.
- I am so sorry Migrainegirl, that this was a disapointment in your case, but at least you have tried, you have given yourself a chance and now you can try some other options. One of them might work for you. This is what we need to do if we want better quality of life, even if it is only some of the time.

I am tickled to death for Jayme, but it also shows us how different we all are. Like you, Migrainegirl, a four month drug holiday did nothing for me. BUT, I think it's very important for people to try to see if that may, in fact, be a factor.

I applaud her bravery. We all know what a demon these are and not bowing to the pain is so difficult. I think I had it easier when I did my holiday. I did it out of fear.

I had had some severe horrendous side effects to a preventative for quite awhile. Once everything was out if my system I was scared to death to take anything.

But, even though it was not a successful holiday for me, the outcome was significant. The Drs were able to rule out MOH, for me. And now that I'm also having chronic back problems that also require pain meds knowing I don't have MOH is very important for me to know. It would be so frustrating to be sitting here wondering if I was in a Catch-22 taking care of my back and yet hurting my head.

It was only when I was given certain pain meds for my back that I was able to function day to day with my head. After so long of searching I finally, by accident, found a solution that keeps me at work. So yes, by trial and error and sometimes accident we hopefully, eventually, find our way.

I'm finally getting up my nerve to look at preventatives again, strictly using pain management has its pit falls also. But in the mean time I found a way to get through the day. But, I KNOW my neuro wouldn't have done it if the MOH hadn't been ruled out.

lentils wrote:I thought the article Jamie linked was a good one.
from article:
A possible explanation of why migraine becomes chronic is that a yo-yo effect of repeated migrainous pain processes, followed by repeated medication, results in structural changes. These propagate central sensitization with a lowered threshold for activation of all of the central processing of head pain.

This set of disturbances may occur due to undertreatment of migraine pain. With inadequate pain control, headaches recur, and the process repeats until damage occurs. Evidence for this is seen in up-regulation of excitatory serotonin receptors when analgesics are repetitively given to laboratory animals.23

I realize that this is only a theory-but it is not wonder that we get into trouble- with inadequate pain control headaches recur, but take too much medication and headaches recur. It's almost a no win situation and I walk a fine line between too many migraines and too much medication.

I often wonder if this is what has happened to me. When I've tried to cut back on my meds -(I would love to do a med holiday, but when I've tried I end up so sick that it just seems impossible. Vomiting, pain like no one would believe - except most of you here- etc.) But I don't feel that I was ever adequately treated once they became daily which was 26 years ago during my pregnancy. I have never had a pain free day since with only one notable exception. But every doctor I see now seems to feel that I take too much pain medication and/or triptans and that is what is causing this nightmare.

Someone wrote on a different thread something about wishing never to wake up. I read about people dying at my age or younger (recently Teena Marie died at the age of 54- I'm 55 now) and all I could feel was envy. But I also won't do the deed as I couldn't leave my son- he has no other family and even if he did, he would be devastated. So here I am.

Thanks for listening.

I am very happy for you Jayme. You have clearly made the right decision to stop the merry go round of pain meds.

Have to be quick. Costing big bucks here....I can (before this awful past couple of months) go 8 days with no med. So cant decide if I would have to manage longer....(would involve windows and jumping). Or I am just not in the same situation as Jayme (pleased for you Jayme).
Been told for now to take all the medication as the pain control is m ore important than worrying about medication.....I guess as that is their advice for me, I have to take it....well I dont have any choice until it abates at least some.
See you all soon, miss you.
P

Anna,
I really sympathize with you, especially if you are supporting yourself and your son. Can talk to your doctors about something that would give you some relief while you stop the drugs, like botox or the nerve block injections? Maybe a hospital admission? Something needs to change, especially if you are continually this depressed.

How is your break from meds ??

Yes, How is the drug holiday going? I am so impressed and pleased with your results. It didn't work that well for me... but like someone else said, we are all different. I imagine things affect us all differently. And thank you for the article. I always appreciate your articles and your scientific take on things

hoping it is going well,

Mary Anne

My medication holiday is still going really well. I am waiting for 30 days and then I will post the results comparing my headaches for the 30 days prior and the 30 days after following stopping medication. It's a little thought experiment.

Thank you, Mary Anne, for your very kind words.

Hi Jwar,

I am glad your medication holiday is such a success. A friend of mine went to a German migraine clinic to take a 4 week in-patient medication holiday. This clinic specializes in weaning migrainers off their medication. She was completely hooked on ergotamine for her migraines and felt so much better after her stint at the clinic.

I tried the "at home" approach once too, but unfortunately it did nothing for me.
At some point I just gave up, because I couldn't deal with the pain any longer.

I keep my fingers crossed for you.

Love

P.

So far in the 17 days since I started the medication break I have had 4 completely headache free days. I hadn't had a single headache free day prior to this since July 2010. I have had 2 severe migraine days, which were in a row. It was really difficult to get through without medication. On the second day I woke up crying and extremely distressed about how I was going to get through the pain without medication for a second day.

I spent most of that day in bed sobbing in the dark with ice on my head and drinking a lot of chamomile tea. Time passed very slowly, but the migraine did eventually go away.

I have had a number of days with a couple hours here and there of a mild headache. I personally would not actually count these as headache days because it's so short-lived and minor; however, my neurologist considers any day where I have even a small headache to be a headache day.

Getting off of medication was the best thing I have done for myself to date. I feel so much better and am starting to feel like myself again, and not just a person that exists with chronic pain. I am deeply hoping that this break has reverted me back to episodic migraines instead of chronic. Still shitty way to live, but definitely an improvement.

I have read a lot of the literature concerning MOH and have decided to attempt 60 days without taking meds. From what I've seen, this seems to be the time it takes to really undo what has been done. I hope I can make it through.

I cant do it either Petzi. Until December, I could often go 8 days with no medication and almost always 4 days off before the monster hit again. Since then it is constant, but it didnt come from more medication. The more medication came of necessity.
The advice I got was "take the Triptans, deal with the pain."

I guess it depends on each individual. I know of many from my FB page who have got off everything and not got anything out of it except more pain. Some, like Jayme have found a big difference....

I wonder if it has any bearing on what medications we are using and the frequency....

P

I, too, was told to just take whatever meds I needed to get through the day. I think it is vicious cycle of needed more meds because of an increase in migraine frequency and then an increase in migraine frequency due to the need of more meds.

Everything I've read seems to agree that if you exceed more than 2 days a week taking meds that you are putting yourself at risk, and that pretty much every migraine medication out there can be a culprit (triptans, opiods, analgesics, barbiturates, etc). It's a very grim situation for people with migraine disease.

Jwar, I am very imprssed by your determination and I think you are doing the right thing.
It is hard thing to do, it requires great determination and strenth of character so it is not for the weak at heart - but you are quite right, you owe it to yourself to give yourself this chance, to clean your body in order to see what you are dealing with. This is a battle for a better quality of life, even if it is only on some days not always, this means you are in charge.


I know that the idea of MOH is not verypopualr with some people, but not many people are prepared to be as determined as you are so they give up too soon to know for sure, if it would work for them.
There is a reason why there is so much written about it, in neurological journals.

The world over doctors are confirming that medicines we take for pain, instead of getting rid of it, and are actually causing more pain. MOH is now the most frequent cause of chronic pain.

It takes guts to remain focused and positive, as you have done, specially on your bad days, but at least you will know that you can regain some control over your life, and over your pain.

Whatever happens next - and I hope we will hear more good news from you - you have already achieved a lot. Congratulations.

I think four months was quite long enough for my neurologists (yes, plural) and myself to determine that I did not have MOH. But then there are folks out there who think migraines really don't exist, that we are just weak willed and lack determination to get through the day.

At this point we should realize that we are all very different and are on this site because we have migraines that are difficult to treat.

Jayme, I wish you continued success.

I think as migraineurs we are all susceptible to it, and I daresay that perhaps we should all try a similar break to see if things improve. Unfortunately, as for people like Charlotte, it is not going to solve everyone's problems.

Charlotte, I am very impressed with your 4 months, especially as you did not find relief. I am sad that you didn't find relief, though.

It was important for me to know, Jayme, as was it for the neurologists.

I highly doubt I would have been put on the pain management regime that I have had success with, had MOH not been ruled out.

Jayme, maybe you can explain, does the "kindling" theory have anything to do with MOH or is it more of a sensitivity issue?

Mini,

Not everybody has the luxury to go on an open ended medication holiday to prove their strength of character and determination.

Some of us have to function on a daily basis, because they have the small nuisance of making a living to deal with. I run my own business and simply cannot to be "off sick" for weeks on end. Others have jobs they can't afford to lose and family to look after.

To put it in the words of Depeche Mode: “Try walking in my shows. You’ll stumble in my footsteps.”

P.

I was responding to Jayme and yes, I do admire her determination since I know that this is difficult thing to do.
I also know, that not all migraine pain is caused by frequent use of medicines.

BUt there is only one way to find out for sure, and this means going thorugh the whole painful process - and this is what Jayme is doing.
Yes, we all make certain choices and I am absolutely certain that it is not easy thing to do for anyone because Petzi, everybody has commitements, jobs, family etc.
It is also true that the good result is not guranteed, but any improvemnt following that decision is great.

This is why I am so thrillled that someone is getting such great outcome in fighting back against this resisitant condition that we all suffer from. This is very encouraging and so I am very pleased for Jayme.

We all make many personal decisions concerning dealing with migraine, not everyone wants to take such risk as Jayme did, but it is definitely each person right to make their own choice.
But to say that MOH does not exsit is simply not correct.
IT does exist, an dealing with it works very well for many people.

Charlotte,

What kind of thing does your pain management cover please?
I am just starting one but not very confident it is going to help.
However, I travel hopefully, it is all I have....

Pen

Mini wrote: But to say that MOH does not exsit is simply not correct.

Mini,

When did I say MOH doen’t exist?

As the case of my friend proves it does work for some, but not for everyone.

But I do take exception with your rhetoric because it insinuates that it is up to the migraine sufferer’s strength of character or determination to get better.

I took a at home medication holiday for 4 weeks. It was the worst time of my life and my head was permanently attached to a bucket. It did absolutely nothing for my migraines. When is enough enough to prove ones strength of character and determination? There is always going to be someone out there who thinks you might not have tried hard enough.

Frankly if anybody has migraines at the same pain level I have them when not taking any medication I could never blame them for not even trying. It is inhuman to subject anybody to this sort of pain without any kind of medical intervention.

Even in the German migraine clinic they pump you full with all sorts of other drugs (valium being one of them) to be able to get through your 4 week medication withdrawal.

I agree, everybody should give it a go, but don’t beat yourself up if it doesn’t work … and it definitely has no bearing on your character.

What about your regimen Mini? Did you ever go on a medication hol.? What do you take in what quantities? What do you do with life’s obligations when you reached the limit of medications you are allowed/supposed to take. I would be interested to hear how you are dealing with this?

P.

Pen,

From what I read on the forum, my pain management regime wouldn't be available to you in the UK as it is primarily daily narcotics. I take both long acting and short acting.

For many many years I was told that narcotics are evil for migraines so took them very sparingly and suffered through many different "preventatives" that I had terrible side effects to.

Then I hurt my back. And was given narcotics. And realized one day that I hadn't missed a day of work in two weeks because of my head. So much for the evil narcotics making it worse.

This was after I had done my drug holiday.

Two people on this forum gave me wonderful advice, one told me to find a neurologist who was also certified in pain management and the other was kind enough to guide me to one close enough that I can get there and back in a days drive. Hubby is kind enough to use one of his few days to drive me.

It is not the route I ever would have chosen. All drugs have side effects. But this is the route that is most tolerable for me and allows me to live any semblance of my former life.

When the new neuro was going through my inches thick medical file one of the things he commented on was that I had already done a holiday. It was documented by my old neuro so I am grateful I didn't have to do it again.

I'll be happy to tell you the specifics of what I take and how much in a PM if you would like.

Please, folks, if you can't do a drug holiday, don't consider yourself weak. Due to other circumstances I did mine out of pure fear, which we all know is a real driving force. But, it is helpful in the long run if you can get one documented so the Drs can't throw up MOH when they get frustrated.

And on the other side of the coin, wouldn't it be lovely if it WAS determined to be MOH? I was very disappointed that mine wasn't.

I think every single one of us that continues to remain alive despite the crippling pain we go through has tremendous strength of character and determination. Especially those of us on this forum, who deep down have not given up hope. We wouldn't be here if we had - we are all still searching for something that will help us and reaching out to others like us that are doing the same. Let's please stop arguing with each other about the best course of action and accept others' struggles as unique experiences.

I think we all know MOH is a real phenomenon that migraineurs are susceptible to. I was thinking about taking a med holiday for a long time, and waited to start it until I was out of lab for Christmas break. I basically forfeited having a vacation to do it. As was said above, I primarily did this also out of fear and also desperation. I am still getting migraines that are extremely difficult to tolerate without meds. I have one right now.

I have had a few near-breaking points. What has helped me struggle through them is the confidence that the episode will end. As I said, I hadn't had an end - of even a few hours really - to a migraine episode since July. It was one continuous headache, punctuated by severe flare-ups. I am sure you all understand.

Since starting the drug holiday I have been reminded of what a true migraine feels like. My headaches had morphed into something unbearable and odd, which I can look back and now see was MOH. MOH feels different than a migraine, like a migraine but with something MORE. But I never would have realized this without taking a break from meds and being able to look back to what was going on a month ago.

I dunno, hard to explain. I will try to describe if you want.

Hey everyone,

Just wanted to give you all an update, as it has now been 40 days since I took medication (except for my preventative, Lamictal). Below are my headache stats.

During the 40 days preceding my medication holiday, I had the following headaches:

27 days out of 40 were moderate migraines. I define these as 5-6 on the pain scale and long lasting.
6 days out of 40 were severe migraines. I define these as being bedridden, crying and very long lasting. 7-10 on the pain scale.
7 days out of 40 were mild migraines. I define these as a 2-3 level headache.

It is important to note that I didn't have a single non-headache day during this time period - I always had a low level mild migraine if I wasn't experiencing a more painful attack.

During the 40 days since beginning my medication holiday, I have had the following headaches:

11 out of 40 days were moderate migraines. I define these as 5-6 on the pain scale.
4 out of 40 days were severe migraines. I define these as 7-10 on the pain scale and long lasting.
15 out of 40 days were mild migraines. I define these as 1-3 level headache.
10 days were completely headache free.

I wanted to write what I defined the headaches as before and during the medication holiday. I still consider the "pain levels" to be the same numerically, but I only define a severe headache as long lasting now. My moderate and mild headaches reliably go away within a 1-3 hours now - something that I never really thought was possible.

So I went from having severe migraine days during 15% of the time down to 10% of the time. Moderate migraine days 67.5% of the time down to 27.5% of the time. Mild headache days from 17.5% of the time up to 37.5% of the time. But importantly noting that before the holiday my mild headaches lasted continuously and now they last at most a few hours.

The severe days that I have had since starting the holiday were all during the first two weeks of stopping medication. They were extremely difficult to get through, but it's been about 30 days since I had to get through one.

Overall, it is truly amazing to me what a difference this has made in my life. I am so much more productive and happy and can get through the attacks of pain more and more easily using relaxation and acceptance, whereas before I would have just popped some pills and prolonged the attack. Additionally, I no longer have the despair of wondering if/when a migraine attack would end, since I now know there will be a definite end in sight.

This is the best thing I've ever done for my health. In fact, I have chosen not to try Botox for the time being even though it is currently an option to me.

I haven't yet emptied my purse of the 10lbs of medication that I carry around with me everywhere, but I no longer feel that I am defined by being a migraine sufferer. Originally my goal was to go 30 days without medication. I have now gone 40. I no longer have a defined "goal" of how long I should stay off of medication - I basically just intend to stay off of it indefinitely. It has become a lifestyle decision.