tried all the preventatives. now live... - National Migraine...
tried all the preventatives. now live on triptans. seems most of us end up in a similar situation. What about a drug for migraine ?
cut out the triptans!! you could be causing more headaches!
Rosianna. Thank you. But you are joking aren't you ?
I did say I have tried all the preventatives.
How would you suggest I stay alive please?
Triptans are prescribed by my neuro. Filled by the gp.
Why would you think they are giving me migraines please?
They have nothing else to offer.
I don't want to take any drugs. But I was hoping to last a few more years
Without them I have nothing.
It seems triptans are renown for causing re-bound headaches. But if you are only taking a couple of doses a month as recommended by the makers it shouldn't be a problem.
There does seem to be quite a few of us that have no luck with the drug treatments that are offered. I guess it's that realisation and becoming chronic with vertigo that forced me to try the migraine diet, supplements etc.
Are you a chronic migraine sufferer? If you've tried everything to no avail you might be a candidate for GON injections?
I have them 10/12 a month yes. I haven't heard of GON
What is that please?
Could you explain how one would know their triptans rebound please?
I have good and bad months. I know of many who take about 24 a month sometimes. But then go right down to 6 or 8.
I don't know anyone who recognises a problem with them.
When I asked MA they said you would need to be taking 15/18 a month consistently to rebound on triptans.
Who does one,trust and believe?
I'm guessing you mean 10/12 triptan tablets a month? As I understand, it is commonly known that triptans cause rebound headache, that is why if migraines develop in frequency to chronic (15 or more migraines a month) many doctors will want to try you on preventatives.
Quite often the migraine returns after taking triptans. I take them, but rarely as they don't always work for me, and I often notice that if they do get rid of the pain it comes back within hours.
Signs of rebound headache? That you have a headache all of the time could be one. Overuse of these medications can themselves give you a constant headache. There is extensive information on rebound/overuse headaches online based on respected studies and evidence.
But triptans are not alone, most painkillers (paracetemol, ibuprofen etc)cause rebound headaches if taken frequently enough. If you are a chronic migraine/daily headache sufferer the general guidance is that you do not take over the counter pain killers on more than 2 days a week. So even if you take one dose on day 1, that counts as one of your 2 days a week pain killer allowance.
I am only recommended to take 2 Maxalt Melts, in two treatments a month, maybe that advice varies from country to country, specialist to specialist, I don't know. I am only telling you from my personal experience.
If you have already tried all the anti-depressents, and the newer drugs which are anti-epilepsy drugs now being used on chronic migraineurs then Greater Occipital Nerve blocks or botox might be an option if a specialist felt they were appropriate for you. It also depends on whether they are available to you through your health care provider. Again, I'm a chronic migraineur, not a specialist and am just sharing information.
Have you tried the migraine diet to see if you are one of the percentage of migraineurs whose migraines might be linked to food/drink triggers?
Also have you been to the NMC/migraine/headache specialist rather than a neurologist?
very clearly explained saffronbread! in the states they take far in excess the safety dose of triptans and suprise suprise all the those patients have daily headaches!!
There is a really good book written by a Neurologist that I highly recommend called Heal your Headache. It is excellent and discusses the over use of medication and the impact of rebound headache but also discusses diet, importance of regular routine etc. I am a daily migraine sufferer myself and have tried every route from medication to no medication and am back on preventatives which I have had much success with however, I still follow many of the principles in this book. Amazon carries it. I hope you find something that works for you.
Here's a link to the International Headache Society on Triptan overuse headache. This may help you identify whether you meet the criteria:
I've had medication overuse headache on triptans and now ration to two uses a month and only use them if there is something i really need to be pain free for. The intensity of the headaches has been reduced by preventatives suggested by the NMC and I have learnt to meditate. I managed to hold down a busy job through this but would recommend some time off (and support) when you stop them if possible.
Try Mark Williams and Danny Pearlman's Mindfulness a key to finding peace in a frantic world. You need to practice regularly for a few weeks before you get the benefits though.
I was on a pain course last year. Mindfulness taught but only one of the 12 of us got it. Shame.
I don't know how old anyone is here. But I just wanted to share since menopause. Now turned 60. Can't just leave the pain. Of course I have tried. Neuro told me not too. Important to stop it.
I can't find any specifics for MOH. But I don't have daily headaches. And o ce I take a frova the migraine is gone for at least 18 hours depending on how it is going.
Please don't take this wrong. I am new here. But not new to migraines. Been over 20 years. I am so sick of drs contradicting each other..changing the profile. And it all comes back on us. The poor patient.
We are told stress is our enemy. So stop stressing us.
MOH exists. Ok. But not every person with sever migraine has it. And I my experience on my forum most don't.
Thanks so much for your comments. This is a good place. Glad to find it.
Xx
You probably need to meditate daily for a good 4 -8 weeks before you know if you've got it or not. And it won't make the headache better while you are doing it. It's a way of accepting things as they are and going forwards from there so it doesn't suit everyone.
All I know on the MOH front is that if I use a triptan I expect a stonker 2-3 days later so I'll only use one if the benefits of kicking the headache at the time are worth toughing ou a rebound a few days later. It took a headache diary for me to work that out and I was pretty surprised at the time - but I've got it down from 16 tablets last August to a couple a month.
Doctors don't have the answers - to be honest these days you can read the same guidelines and protocols they use online. I was saved from topirimate and sodium valproate by being able to access the research and work out the side effect to improvement ratio was not good. But you can create a partnership with a doctor you trust - I have received great support from my long suffering GP and taking a leap of faith and trying what was suggested at the NMC despite being dubious has benefitted me greatly.
Thank you all. I did mean 12/15 triptans a month on 3 consecutive months.
And I am still allowed more than that. They have told me I have no symptoms of MOH. And to take triptans rather than OTC. I was told. And it is confirmed on line. About 1% of the adult propulation show symptoms of rebound. Rising to 2% in migraineurs.
It was confirmed to me by a top neuro. Many people get off the meds and they still have the pain. He said. Clearly, something else is going on here.
Now none of this means I am not mindful of the rebound effect. BUT there seem to be no answers other than to take the drugs.
I would love to get the hang of mindfulness. But after 8 weeks of 3 hour practice with a mentor. And finding myself feeling even more pain in the effort. I failed dismally.
I have no doubt it would help me if I could only do it. 
here is a good link that saffronbread posted on another post.
migraine.com/blog/news/new-...
Mindfulness doesn't suit everyone - it's probably most suited for people like me who run around flat out trying to get everything done in the least possible time and lost in a haze of working out how to do more stuff. :). So don't think of it as a fail but something you tried and didn't suit you.
Although it was hard I eventually had to accept that the headaches were part of my life and that I had to learn how to live with them. That there wasn't going to be a wonder cure, but that I could learn to use the energy I had to do things that really mattered. So I've cut a day at work, hired a cleaner and given up tiring trips and extra studying, but spend more time in my garden and looking after my pets.
My new mantra - I have the right to do less than is humanly possible.
Sounds good Paula.
I don't rush around anywhere. I have fms as well. I go from my bed to the couch. Seldom leave the house except for dr apts.
I have no life quality. Turned 60. I guess that's it.
I appreciate you saying its not for everyone. Thank you.
Bit less beating myself up. Thanks
Merril I have read all this thread through - may i offer the following thoughts.
I agree with everyone esle about medication overuse headache- having been there myself more than once, been in denial about it, more than once and find i have to periodicaly take a good look at what I'm using.
I'm not the expert on migraine just a lifelong sufferer who has tried everything i can, bar things I can't cos of a heart issue, and I found the NMC guidance on management of migraines -through diet, timing of eating as well as timing of what mediaction to take in what order really useful. No it hasn't got rid of them but I'm less focussed on them.
What I do know about, as a CBT therapist is Mindfulness. I use it myself regularly to help me deal with multiple health problems
including pain. Mark Williams is one of the British CBT academics that brought it to the UK as a prophylaxis for depression - which of course is strongly associated with migraine. If you look for the original books by Jon Kabat-Zinn from the US, you will find he developed it to cope with pain and stress initially. The books with CD's are great -and yes you need to do it daily for 6 to 8 weeks for it to become part of your 'being'.
One more thing -I know you say you have tried all the preventatives -but a standard SSRI antidepressant might help both the migraines and if your lack of quality of life and isolation might have caused some mild depression. I hope you don't feel offended by my suggestion. -
Have you read 'how to be sick' by Toni Bernhard? It's a wonderful book - she is a law professor before she got post viral CFS, she's a grandmother as well which is why I thought of it.
Sorry for delay, yes I am on her FB group as well. But I havent found it helps with pain though.
No me either. My migraine and lack of concentration from fibro makes reading very difficult.
merrill, there is an excellent article on medication overuse headache in todays times newspaper in the body and soul section.
it is entitled' could painkillers be causing your headache?'
well worth a read.
Medication Overuse is one of the biggest problems we come across here at the clinic so it is important to always be aware of this. However we appreciate it is difficult if not near impossible for some to go cold turkey. For those who do, the rewards at the end can be fantastic, but it is a tough road to get there. We recommend a course of naproxen when patients come off drugs, and we support them every step of the way as we know how tough it is. Occipital Nerve block injections (GON) and Botox are two treatments we do, that don't involve medication and can be a way around the problem for chronic sufferers.
I wish you all the best 'Merrill' and others in the same situation.
As an nb to this. I thought I should let you all know. I have been cleared to have Botox. I meet the criteria easily. The neuro says. Had 3 anti depressants. 2 beta blockers calcium channel. The list goes on.
Migraines 3/4 a week. And no MOH.
Now I have to decide if I am brave enough.
What would you all do ?
Btw I was tried on naproxen a year ago. It doesn't touch my migraines.
I'm new so I don't know if replying will bump this to the top of the forum -
but when it comes to quality of life - who cares if it's a MOH if you can keep it away with a triptan every day or two?
It's mind boggling that patients will end up on 4 kinds of preventatives (plus botox) including some that can damage the liver, cause kidney stones, eye trouble, depression, obesity, hair loss - and they Don't even fully WORK - they just Might be Reducing the suffering from 12 days a month of excruciating vomiting, and complete incapacitation - to 6 or 7 days (yup - still can't hold a job with that). The episodes are physically damaging too! I have spent a year now on my "Triptan Vacay" because it took 3 months for the resulting headaches to subside from every week (and they last 3 days mind you - so that was HALF of my life in AGONY. After 3 months still convinced I couldn't ever take a triptan again - and on a new preventative every month - yeah it's down to half that. Half of hell.
So - back to quality of life.
On the triptans constantly, the years before this one? I functioned. I had a job - I was not thinking suicide - etc. I could pretty much fake it though life without anyone even knowing I was a migraineur. Now even my social life is contracting because I rarely accept invitations, or if I do I'm such a frequent no show.
So again - yeah - my need for triptans will increase from every week to every day or two if I don't force myself to ration them. (And right now, as of yet, I haven't even taken them again - for a year). I acknowledge they cause the need for more. That must be a MOH. I overused them for many many years (because they worked).
By I'm at the point of saying - so what - bring on the MOH's as long as the triptans still work for me. Some people evidently take one a day, every night? What if that worked for me?
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