Daily Triptans

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Daily Triptans

Post  larasmom on Thu Jun 20, 2013 4:43 pm

I am a 40 year migrainer - (age 57) who has tried everything to prevent/stop/control my migraines.   I eventually started taking daily triptans (naratriptan) which allowed me to function at a semi normal pace.   This has kept my quality of life fairly even for several years.  Currently, with limited triptans covered by insurance, the pharmacy folks having a stroke when you try to fill a prescription for daily triptans, the seemingly escalating hassle, I decided that I would like to discontinue the daily triptans and see where my headaches are without them - or with fewer of them.
 
 I started working with my neurologist to discontinue the triptans and found that I am unable to stop taking them ...

 My neurologist started with a round of Botox, and a month of prednisone - with the plan to decrease the naratriptan daily (cut small amounts off the pill daily) and decrease the amount of prednisone.  

Any attempt to fully discontinue the daily naratriptan results in my head blowing up.   I can't find literature or any kind of documentation about this.   This is a first for the neurologist I am working with.  I looked at the archives on this site - and the most pertinent information was written @ 2010.

 Does anyone have any information on this topic?    Has anyone else gone  through this, and if so, what helped? 

Thanks very much!

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Re: Daily Triptans

Post  dcook60 on Thu Jun 20, 2013 5:32 pm

my head pain has lasted 44 years, and i'm sure will go on until i croak.  (i'm now 73).  there are no answers besides daily triptans for me, either.  i suppose i've done the daily thing for about 12 years now, and since imitrex was invented, i have taken waaaaaaaay too many (according to most docs). 

the literature is equivocal as far as harm to the patient.  sure, some people do have heart symptoms and this would be a huge contraindication for triptans. 

believe me, and i'm sure you do, when i say that i've tried nearly everything out there through the years.  nothing helps even a little.  the only advantage to my being older than you is that i have a medicare drug plan.  since i am poor (but still working part-time) i have a low-income drug plan with very low copays.

my current doctor doesn't give me any hassles, but of course, many neurologists along the way have had fits about the number of triptans i take.  their fixes failed to fix anything, so i do what i have to do to get through life.  the only advice i have for you is to get your heart checked out thoroughly.  mine seems fine, and i'm very grateful i have SOMETHING.

as you know, there are many causes for migraine.  my causes are multiple and non-specific, as yours may be, also. 

i alternate two of the 7 triptans (8 if you count treximet, which is imitrex with naproxen and something else added; i forget what).  they do NOT take away the pain, but dampen it down so i don't have to think about it at all times.  the other triptans don't help me at all.  i'm still alive, and seem to have no health issues other than head pain, thankfully.  find an understanding doctor; preferably one with migraines in his/her family.  take this for what it's worth, and good luck to you, dianne
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Re: Daily Triptans

Post  tortoisegirl on Thu Jun 20, 2013 10:18 pm

Sorry you are struggling to cut back on them.  I think the plan of tapering the dose with some adjunct meds is a good idea.  Do you think this is just the regular pain level returning (that you are now unaccustomed to), or does it feel actually higher?  I don't have any information on this though.

I just wanted to say I'm in a similar boat...I've resorted to daily opiate pain medication to function with my constant headache.  None of the meds significantly consistently helped.  Many I also couldn't tolerate.

I'm curious if your insurance will let you fill a single Triptan more than once a month, or will let you fill different Triptans in the same month.  I recently found mine lets me do this, to my surprise.  I've been taking more Triptans now that I found they are helpful for certain types of headache exacerbations.  This cuts down on the amount of as needed pain meds I take (although I've continued the daily med, methadone).

Do you require a full dose?  Some folks can get a higher dose pill and get away with taking 1/2 or 1/4.  I however have always needed the higher of the doses, sometimes two of those.  Certain Triptans also come in large quantity in a standard fill...for example, 4 Relpax vs. 9 Sumatriptan for me (at $20 vs. $5 !).  Its a no brainer I try to save the Relpax, even though the Sumatriptan causes more side effects.  If you can figure out where the pharmacy hiccup is happening, it might not be too tough to solve.

I comment you for even trying this!  I agree its good to get a baseline, although getting there may be tough.  I haven't got off the opiates since I started on them daily a few years ago.  Once I cut down significantly (a doctor required that before considering a nerve stim trial).

I got frustrated with the thought of being without them for months while waiting on insurance to approve the trial, then waiting to schedule it.  Thankfully I found my current pain doc will do the trial without me coming off of my meds.  He saw no reason to, since I would be able to easily tell if it worked on my pain (the meds only take away 50% of my pain on a good day).

Have you seen a pain specialist?  You might consider discussing daily pain meds vs. daily triptans.  Not sure which is better?  Opiate pain meds probably have less health/heart risk, but come with their own side effects and issues like tolerance.  If you haven't seen one though, a (good) pain doc might have some different ideas.  Good luck and best wishes.

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Re: Daily Triptans

Post  Seaine on Thu Jun 20, 2013 11:33 pm

I am in the same boat as you.  I take Imitriex about 25-31 days per month - the only exceptions are the few days per month when I'm taking a lot of Ibuprofen for some other pain and it ends up preventing the migraine for that day.  Occasionally I'll also go a day without a migraine when I drink a lot of caffeine.

I fill the 100mg of Imitrex and I cut the pills in 1/4.  Most days I only need one of the 1/4s, some days I need 1/2 a pill.  I found that this vastly reduced the side effects I used to get (extreme tiredness).  I was very surprised when I first tried this and actually found that 1/4 of a pill works BETTER than a whole one, most of the time.  My only theory for this is that there's less rebound headache effect since I'm taking less.  Also I did experience withdrawal effects for about 2 and a half weeks after reducing the dose, which involved being very irritable and depressed.

Before I tried cutting the pills, I'd fill the Imitrex several times per month.  I didn't bother trying to get insurance to cover it since it's only $15 per box of 9 pills.  When I used to take Frova, I fought with the insurance company so much to get them to fill one box every 20 days instead of 30 days.  They can make it really hard for you but it is possible, with a doctor's help, to get them to cover more.

I have gotten used to neurologists freaking out about how many triptans I take, and yet none of their preventatives have helped.  Like others have said, I've tried just about all of them.  I guess it makes sense, anyways - none of these drugs were invented for migraines, and none of them help migraines.  The triptans are the only ones invented specifically for migraines.  Even strong pain medications such as narcotics barely help with my migraines.

What I recommend you try is cutting out certain things in your diet which could be making your migraines more painful.  Artificial food colorings were the culprit for me - red #40, blue #1, "color added," "artificial color" etc.  Others say MSG, sodium nitrites in preserved meats, or sulfates in foods.  After I cut out food colorings, the pain of my migraines was reduced by at least 70% and my triptans worked so much better.
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re: daily triptans - medicare coverage?

Post  Eileen on Sat Jul 06, 2013 10:46 am

dcook60 wrote:

the only advantage to my being older than you is that i have a medicare drug plan.  since i am poor (but still working part-time) i have a low-income drug plan with very low copays.

hi dcook -

i wonder if you have any advice regarding how you got medicare to be so generous with the imitrex. i have medicare, am also on a very low income. but medicare will cover only 9 pills a month and my copay is $90.
thanks, eileen

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eileen

Post  dcook60 on Sat Jul 06, 2013 11:52 am

i'm not saying it's easy; it remains a constant fight to get an adequate number of triptans.  if you have a good doc who will write the scripts, that's your first step.

unlike another poster, i can't get by with cutting pills in half or otherwise; i need the full dose, and then some (second doses, often).

if you call 1-800-medicare, you will find that the real people on the end of the phone line will actually help you find a suitable plan, according to the drugs you need.  there are so many, with vastly different rules, that you absolutely need someone to figure it out for you.

since i qualilfy for state assistance ONLY BY PAYING MY $100 MEDICARE PREMIUM, mind you, i think this puts me in a different category for EXTRA HELP in drug-costs.  your state may not have this; i'm in WA.  it requires an enormous amount of paperwork, phone work, and makes one crazy, but when you qualify, it's worth it in the end.  survival, after all!!

(but when i make too much money, some months, they dump me off both plans and i have to reapply when i'm poorer again. i do home care, so the nature of that business is that it's highly variable hours).

go to your state public assistance office/not called welfare anymore, is it?  and see if you can speak with a knowledgeable someone about getting that medicare premium paid.  they should also know which office you can go to, which is the social security system, in order to get applications for the reduced-fee drug plans.

i'm probably getting it mixed up; it's been made very complex purposely, i'm sure; they want us to give up and go away........but i'm not going away.  one has to re-apply every year; in my case just the most awful time of year, before christmas.  it's a huge hassle, but i'm not on poverty row since i have this assistance.  

after all this, then you have to get an "exception" through the drug plan to get more than the pitiful 9 pill allotment.  i get 18 naratriptan (amerge) and now i'm getting maxalt FREE from the drug company.  this also requires much paperwork through me and my doctor.  it's a wonder all doctors don't quit, with all the hoops they have to jump through.  

write me a PM if you like; maybe i can be more coherent if you ask me specific q's.  dianne
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Re: Daily Triptans

Post  Platypus on Sun Jul 07, 2013 11:20 pm

There was a study years ago of Amerge as a preventative and it was very effective. The biggest hurdle is the cost, w/ insurance typically covering only 9 pills/month, and even an exception still leaving you a long way from 30/month.
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