Triptans How many are you allowed?

It seems the guidance on these things is different, not just from country to country, but from neuro to neuro and GP to GP.
Makes a bit of a mockery of the...not more than 6.....not more than 10.

How many are you all allowed please?
Is it enough?
Do you take them all every month, and could use more?

What are the warnings of taking too many. Rebound, or something else?

I just find the whole thing confusing and unhelpful.

P

well, pen, you already know this (and are perhaps jealous of me); that i get 48 per month. i've stuck with my general practitioner for 10 years, or rather, he's stuck with me, and not dropped me as a patient, which two specialists have done.

believe me, being dumped makes a person feel AWFUL. but i have no qualms against dumping unhelpful docs, and have done that many times. of course, not in a "formal" way; i just did not return to them.

knowing my history and all the drugs tried, he has no qualms about prescribing this huge amount of triptans. nothing else works at all for me, not even a little bit.

i don't know if changing doctors is an option for you, but if you could somehow make it clear that you would certainly try not to use them all, it would make you feel more secure if you had the triptans in your possession just in case........dianne

Hi Dianne,

Yes I did know you got a lot. Not sure I knew it was that many though.
I get enough for my needs right now.
I am allowed 18 a month.
Told not to take more than 12 unless desperate.
I did once take 13......BIG guilt trip.

I find you just never get the same info twice.
I am on Migard/Frova. They work.
They are a bit slow and the efficacy varies, but I would be lost without them.
Today I wasn't sure if it was migraine or not, and I only had a Migard 3 days ago.
But with the humidity I was really hurting. So I took one at 12.30pm.
Having waited 3 hours. It has helped quite a bit in 2 hours...

I could easily take one every other day, but dont. Even now I have enough.
Because of all the "warings", but "they" cant decide how many is too many.
If it might be a per person thing. And exactly what horrors may befall us.

Someone on my FB group has been trying to get more than 6, but been refused.
This is what made me ask the question.
I was going to encourage her to go and push for more, but wasnt sure.

Dianne have you ever taken the whole 48???
Did you die???

I am only allowed 8 and my neuro frowns if I take more than 4. He's made some case about some sort of "rebound" issue if you take more than 4 in a month.

My life is h e l l. I would love to take one every day but reserve them for days I absolutely have to function and just suck it up most of the time. Today I may have to give in - tempting to go find a garbage truck to lay in front of....

Becky why does he give you 8 and complain if you take more than 4?
I dont want to get involved in more rebound discussion, it seems a point of controversy, but my neuro says although it can occur,
It is unusual and you need to be taking 15 or more for over 3 months....Out migraine action say the same. They say 10 or under, and I quote..."Will not hurt you for sure".

You must be going nuts with having 8 there, an needing more.,...
So sorry.

Why does he do this - no flipping clue. He seems to have his own set of theories but he also doesn't really believe in pain meds. Anna's Mom saw a doctor in the same clinic with Anna and they wouldn't give her any pain meds either. The only things I have for pain are naproxen and gabapentin and neither of which really work. Maybe I should drag out the Fioricet and really p*ss him off. He thinks that stuff is pure evil but he doesn't have to live inside my head.

I have a feeling that I may get to Diane's state eventually. None of the preventatives have any effect or they make me sicker. I'm ready to throw in the towel on the whole mess. I know the neuro is running out of ideas. Not sure if it's worth it to see another doctor in the same clinic or not - right now I just want a decent quality of life. Days like today - it's nothing. I feel so incredibly awful and know that the worst of it isn't here yet (watching the weather). Not worth it to really do anything about it - not going anywhere.

It's also tempting to try to file disability and completely give up. Not something I want to do, but every day gets harder and harder for me... I should go take something and see if I feel a bit better. Sorry for the rant - not one of my better days.

You rant Becky, we all understand. I do think from personal experience that I am willing to risk the Triptans over the migraines.
This is one of Linda's things as well.

Have you tried Butterbur.....another current thread....

I do not know where I would be without Migard.
Which one are you one BTW?
I have found this one better than all the rest and it does last longer.

You are so young, I feel really bad for you....
My youngest is your age, she doesnt get migraines.....
I wish you didnt have them....

I'd much rather have a decent quality of life...if taking triptans as I need to shortens it - then so be it. Or it gets tempting to move to a state where medical marijuana is legal - at least I could leave the pain behind for a while.

I haven't done butterbur but I've been on so much other crap that I've been afraid to. My neuro likes to mix meds and I have a reaction half the time to it. If he runs out of ideas, then I just might. Probably couldn't make things any worse. Speaking of which - I'm scrapping the other preventative. I'm sick of all this and am tempted to cancel all my neuro appointments...

I'm on Imitrex injections. I hate the needles but get relief in 1/2 hour so it's worth it for me. Sad thing is it only lasts about 3 hours. If I take it with naproxen then it lasts 7. Not enough for a whole day but if I have to function it's worth it.

I wish I didn't have all of this either or that they would just vanish the way they came...

I get scared too Becky. I have had all of the side effects an no benefits. So I quit preventatives. i think Linda has done the same.
But Buterbur and Q10, Magnesium, all non drug, if side effects, not like drug ones....
Might be worth a try. I am going to .

Also Imigran.....I moved on from it because the "hit" was fast, but didnt last.
Migard//Frova, can take a bit longer, but they last 24 hours for me....YUP 24 hours...and can be longer.

Maybe it is time to try another Triptan, how many have you tried? Imigran is the most "primitive" now...
It still works best for some, but I think most have at least tried the others. It made me feel lousy.
Almost no side effects with Frova for me.

Not trying to do any more than offer some suggestions Becky, You have to do these things...its you that swallows the pill or whatever....
But it sound like something needs to improve...

When I was getting them, I recieved 6 Zomig-zmt 2.5 mg / month. My perscription ran out over 1 year ago, and is not refillable. I have 2 or 3 left to last me for the rest of my life.

It's on my discuss list. I used to take Maxalt - didn't work real well. Then went to this one. It works, it just doesn't last real long. I mentioned it lasted only a few hours and I was told to take naproxen with it. Well it doubles the length but it doesn't knock it out.

I think I'm taking a preventative holiday. Frankly I'm tired of them and I wasn't this bad before we started messing with this stuff. If the neuros office doesn't like it, they can fire me.

I almost wish I had never gone to him. He came highly recommended but it's just made everything worse. Just wish I knew how to go about seeing someone else who is competent.

I get 18 Maxalt and 9 Imitrex. Some months I use them all, when I don't I hoard them for the other months so I have a stash for bad months. My insurance dictates how many I get. My doctor doesn't care how many I take.

I find the Maxalt works better, but in some cases neither will work at all.

That what I was thinking when I started the thread.
We have from 6 to 48 allowed here.

So why does it very so much?
I know it is from dr to dr of course.
I got 6 for ages, then the neuro increased them to 12.
Then one of the GPs decided that I would be less anxious about managing them if I had more.
So she upped it to 18 a year ago.
My norm intake is about 10 a month, but its great to have the spares.

Why do they keep us wanting more?
How can it be ok for Dianne to have 48 and take the lot if she wants.
For Becky to be berated it she takes more than 4.

If they cause rebounds, then clearly some of the doctors dont subscribe to it, or dont care....
Who knows. I wonder if Dr Robbins had a view on this diverse prescribing?

So Dianne you get the most and probably take the most....you dont seem to be doing too bad on them.
At least they give you some life quality.

you got it, pen, i do have life quality that i would definitely not have if i didn't take my precious triptans.

i get enough so that i can alternate the two.....maxalt and amerge. so theoretically, i could take maxalt 15 days per month (and since they have a shorter half-life, i often need two in a day. sometimes even three.)

and then i take amerge on the alternate days, but usually i do NOT need two of those. they take longer to start working, but not much, and make me feel better much longer than maxalt.

i determined years ago to not take any one triptan daily, as i was petrified it would quit on me, as imitrex did after 4 years, and then what would i do?? so far, i'm good on this regimen. i have had zero side effects, which is a true miracle in my case, because i usually have terrible effects from every drug tried.

i have a few left at the end of every month, and as all of us who take them do, i hoard them like a crazy person.

and obviously, i am not DEAD, am 70 years old, and working 30 hours/week or more. i feel rotten a lot, but i'm normally able to get out of bed with my triptans. i've done the daily-or-almost-daily thing for oh, about 7-8 years now. dianne

Dianne, I am so glad this works for you.
I dread the day I turn 65 because Triptans may be withdrawn from me here in the UK.
I have just had to take an extra one in the hopes it will help for whatever is giving me a dreadful pain in my neck.
I do get pain in my neck, and it is under the occipital too. I hope it works, its driving me nuts, hence trying...
Unusually for me the side effects have hit fast and hard and before I cant see the screen, I am off....

Diane,

Glad this all works for you. What are possible side effects? I know what happens when I take one but long term - what are they afraid of?

Pen,

Why would they pull them from you when you hit 65? Is it something to do with age and heart issues or are there other things?

Got another ripper today and it sucks. Worse today than yesterday and I'm afraid it's going to get worse. But saving the triptans for when they come on and I have to function or I'm about to completely lose it.

Becky, I dont know how easy it is for you, but I really think you need to find a more reasonable doctor.
Your situation is ridiculous. Triptans don't work for many people, but to have something that does and not be allowed it is just cruel.

Yes it is an age thing, they have not been approved for people over 65.....not tested I guess.
But Dianne is a good barometer that nothing terrible happens.

as far as i know, the main thing to watch out for when taking triptans is heart issues. my ticker has been thoroughly checked, with several invasive and non-invasive tests, when my PFO was discovered a few years ago.

it was determined to leave the PFO alone, as it was tiny, and the cure might be worse than having the little hole in my heart. if people recall, the PFO-thing got a lot of press on here and elsewhere, but the fact is that the people who were cured of migraine by having the surgery nearly always had aura. i have never had one.

i realize i am very fortunate to have something that works, and to have an adequate supply.....if one can be called "fortunate" who has daily migraines! dianne

I get 24 Axert a month which I very rarely use because the Migranol is so successful. I use the Axert as a preventative if I cannot afford a migraine such as an important event. Has worked every time so far that I know of. My doctor doesn't seem to care how much of anything I have. I have an unlimited supply of Migranol but the insurance only allows 8 vials a month. I usually don't need a whole vial though so they usually last me. If I was to run out, I have my supply of Axert. I think that is the reason my migraines aren't out of control. I think the more you can't prevent them from becoming full blown, the more you are going to be prone to them.

I had to take a triptan for my neck pain today Linda. it seemed to work, but it is back 5 hours later....
So it wasnt migraine..... then why work for a few hours....unheard of for me.....if it isnt migraine, what on earth is it?
It isnt an injury or anything....
All I know is I am in horrible pain and cant shift it, and if the Triptan wont fix it....which for me it usually does, at least to the point of improvement....I just dont know.

P

Pen -any head pain with the neck pain? If not, I wouldn't think it is a migraine. But what do I know. It could have been the start of one.

I thought it was the start of one, or the rest of yesterdays. Yes some head pain in my "usual" places, but pain much worse in neck than in head. I am baffled and annoyed for "wasting" a Triptan. Sorry I think I am a bit down right now,....bad couple of weeks.

I'm just reading this thread now. I think Anna gets 9 Imitrex per month, but she so rarely gets a migraine (one that Imitrex would help). Probably not even one migraine per month.

HeelerLady mentioned in this thread we went to the HA clinic she goes to. We did do that earlier this month at the request of Anna's neurosurgeon. We saw the head neuro of the clinic, and she spent two hours going over Anna's history. This HA clinic won't prescribe pain meds at all, but we weren't going there for that reason. It was for an evaluation, and no meds were prescribed.

What the neuro did say amongst other things, is that Anna is never going to respond to migraine treatment. She said Anna doesn't have migraine disease--it is more complicated than that. Thus the list of failed preventatives in ten years--a total failure.

It was pretty sobering to hear that from someone who truly is a great headache specialist. She put together a video on treating HA/migraine, and it was very good.

But I'm sure they are VERY conservative, when it comes to abortives. Probably the most conservative of any place we ever went to. And if you're in the 50% or so of people who aren't going to be helped by preventatives, it would be very frustrating!

Cheryl

Anna's Mom wrote:HeelerLady mentioned in this thread we went to the HA clinic she goes to. We did do that earlier this month at the request of Anna's neurosurgeon. We saw the head neuro of the clinic, and she spent two hours going over Anna's history. This HA clinic won't prescribe pain meds at all, but we weren't going there for that reason. It was for an evaluation, and no meds were prescribed.

But I'm sure they are VERY conservative, when it comes to abortives. Probably the most conservative of any place we ever went to. And if you're in the 50% or so of people who aren't going to be helped by preventatives, it would be very frustrating!

Cheryl

That pretty much nails it. And it's very frustrating. Not going to even go into what the neuro told me last week when I was having a drug interaction. Made me want to plot a painful demise for him.

Cheryl, thanks for the observation. I couldn't figure out why I was getting zero support in the pain realm. I've stopped all preventatives - they don't work for me. This seems to be what they push more than anything and I didn't realize that only 50% of folks respond to it. I'm pulling the plug. I've had it - no more preventatives. If he's got another non-drug idea to stop this, I'm all ears otherwise he better start forking out the pain meds. Or refer me to someone else cause I've reached the end of my rope.

Heelerlady - I feel the same about preventatives. The amount they prescribe and the side effects and who knows what else they are probably bad for, is, in my opinion, is almost criminal. And how many people on this forum are really helped. Some are helped "somewhat" and maybe a hand full have had some very good results. For the most part, considering how much people take, it makes you wonder what the reasoning is behind it other than money. After my Topamax nightmare, I swore off any preventatives and deal with the migraines as they come with abortives and pain killers (which I am very successful with).