Can't live without triptans? - National Migraine...

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Can't live without triptans?

sozzy42 profile image
22 Replies

Please can someone help me? I have had migraines for about ten years and it has basically done its best to ruin my life. I have struggled like most to hold done jobs and struggled to act as normal as possible with my children and husband. I have tried all preventatives with no luck and have seen countless professionals. My consultant has put me in the waiting list for Botox and a gone? Injection and will try both. However the waiting list is long but in the meantime She has also advised my doctor to only allow me to have 6 Zolmitripans a month instead of 12. My consultant has told me that I am having too many triptans and this is causing rebound migraines but this is where I need advise I can't live without them. I can stand the pain and so I don't know how to cut down on them whilst trying to live a life. Does anyone know what I can do?

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22 Replies
Cally01 profile image
Cally01

Hey there , I think we've all had rebound headache at somepoint in our migraine journey. The max triptan i take is 8 in a month, no more than 2 a week.

I was the same way back but i had to bite the bullet and get them down, to do that i removed them completely for 4wks. I have daily migraines so it wasn't easy, wrapped my head/neck in ice all day everyday.

It's definitely worth doing.

I took b12, b complex, zinc, 1500 vit c, 400 magnesium citrate ( all adviced by a herbal doc ).

I now take very little triptans and still take the suppliments.

Now i don't have so many migraines but live in a world of fog, which i hope gets better.

You'll get lots of help here, hang in there.

😣

sozzy42 profile image
sozzy42 in reply to Cally01

Thank you for replying.

I'm currently taking between 3 to 5 triptans a week every week. I work full time and just can't function at all with migraine. I will look into the supplements you have recommended and see how that goes.

Thanks again for you advice and I'm sorry your a sufferer too 😞

Cally01 profile image
Cally01 in reply to sozzy42

It's a horrible illness. I recently gave up work, when i have this under control I'll return.

I take all the supplements in the morning after a bit of toast. The magnesium 30 mins before bed, natural muscle relaxant.

Had 40yrs of these migraines but hemacrania continua for 4yrs now.

Accountant, just couldn't concentrate with the daily pain.

If you have a herbal doc near you give it a try. I've had all prevention meds, botox, gon blocks, bought a cefaly, tens machine, accupunture, physio, chiropractic specialists, DHE treatment. ...the list goes on.

Hang in there 😆

Mia51 profile image
Mia51 in reply to sozzy42

I have been having the same problem as you.I cant do without the triptans as I'm demented with pain.I gave the magnesium citrate a go but it burned my stomach as its citric acid.Infact Ive just wasted b complex as well,they didn't work for me.Nothing I have tried has worked,so wish you well and hope you find relief

sozzy42 profile image
sozzy42 in reply to Mia51

Thank you for your reply, I hope you find some relief soon also

fatbadger profile image
fatbadger in reply to sozzy42

same as me. I get prescribed 12 100mg a month. I can't function without them.

sozzy42 profile image
sozzy42

We sound very similar, I have tried all the preventatives too , Darth piercing, acupuncture and Tens machine etc etc. This is all so frustrating as you always start very positive and I kept stuffing the pills never wanting to give up just in case this was going to be my cure.

So I will definitely get the supplements tomorrow no harm in trying. 👍

Margauxjean profile image
Margauxjean in reply to sozzy42

I've taken one to two triptan a day for over ten years now. I am down to only one per day the last year with no serious side effects. There is lots of helpful info online that comes from patients like us, and some doctors, stating the scare tactics about "too many triptan" are indeed put out by drug companies. They want to keep the price up. I am in the US where many of us have to pay out of pocket for meds. Insurance companies put limits on drugs as well and override doctors.

I think my headaches have gotten a bit better because I abstain from all sugar and read all labels. No Mayo or ketchup, vinegar or anything with sugar. Very limuted amounts of honey or maple syrup, which have lower glycemic index than sugar or high fructose corn syrup. I eat no gluten: wheat, oats, barley or rye. I drink no alcohol at all. No food additives like MSG, Sodium Nitrate, etc. it is tricky but not impossible to eat outside home, because almost all restaurants use sugar in so many dishes-/ especially Asian places.

I avoid direct sunlight wear dark glasses even in fog, a sun hat too when sunny. I live in San Francisco, so lots of fog!!

I started yoga about 3 1/2 years ago-/ very gentle but enlivening form--then became a yoga teacher. Staying physically active definitely helps and engaging in my studio-- I am a ceramic artist-/ helps too. Maybe it's the positive energy circulating and lack of cognitive fear of a migraine attack.

I sit in the rear of movie theaters brcause middle seats bring on migraine. I am 65 and my first headache was age 5,,on the first day of Kindergsrten. My mother, sister. two of her girls, both Grsndmothers had migraine. Mine worsened with menopause-- some women lose them then!!

I still pray to see the day when they disappear. I do not like taking meds but am completely immobilized without triptans. And even with all the preventative actions, I still get one or two a month that are diabolical and refuse to respond to two or three triptans. No idea why these happen, unless it's a freak sugar mistake in a restaurant.

Best wishes and prayers on the journey we are cursed with. This group is a true support to us all.

sozzy42 profile image
sozzy42 in reply to Margauxjean

Thank you for making me feel that I am not alone. I was worried that I would have some long term effect from these triptans but like you dread a world without them.

Good luck to you xx

fatbadger profile image
fatbadger in reply to sozzy42

I think some folk get 'rebound' headaches from them. I try to have a 4 day break a week but it's not always possible. I can't not work as i'd starve and lose my home.....

flannerygrace profile image
flannerygrace in reply to sozzy42

What you've mentioned is not 'all' the preventatives in fact the ones you mention aren't really proven preventatives. I was having several severe migraines a week and finally began a calcium channel blocker, the one I use is Verapamil, and it works! It takes a few months to build up to the 240 mg morning and night that is recommended to get to the point where the migraines diminish in frequency and intensity but after about year at that level I've found I've been able to cut it back to 180 mg morning and night and get the same results.

I went from several severe migraines a week to maybe 4 not to severe migraines a month.

I'd also look at what kind of triptan, some kinds do not work for some people and some give more rebounds than others. Imitrex works for me, but a few others I had real rebounds with.

Help is out there and I hope you'll find some soon.

Karen16 profile image
Karen16

Join Migraine Sufferers Who Want To Be Cured 😊 Angela Stanton

RobinC21 profile image
RobinC21

Hi. When I came off triptans, I was advised to take Naproxen 375mg 3 x a day for about 4-6 weeks. I found this really helped reduce both the frequency and severity of my headaches and migraines. I also took some time off work so that I didn't have the pressure of needing to be ok all the time. This combined with ice packs and support from my family got me through it.

I now find that I am so sensitive to triptans that if I take more than about 1 per month I start running into trouble. It's almost like an addiction. They are so effective in making you feel better that you reach for them every time you feel the start of anything. In my experience, the more you take them the worse and more frequent your migraines get.

If you can find a way to manage without them I promise you will feel better in the long run. It will be hard for a couple of weeks but just get yourself prepared for it and you can do it.

sozzy42 profile image
sozzy42 in reply to RobinC21

Thank you for your reply, I'm so glad that you have managed to control your triptans intake. I know I have to be braver and do the same it's just that I have tried before and never follow it through as the pain gets too bad.

I will speak to the dr about the naproxen, I have taken this before but maybe worth a try again.

Good luck to you xx

Claire27 profile image
Claire27

I'm in a similar position to you. I've tried most of the drug preventatives and have been getting botox for the last year (only a small improvement), the GON block was fantastic but only lasted a few weeks for me. I'm totally totally reliant on Triptans.

I recently took 3 months off work on sick leave to complete detox from Triptans, and have done similar a few times in the past . I was prescribed Naproxen to take three times a day to get through it - and actually after the first week of hell, it was surprisingly easy and I was able to work a bit from home and do a lot of my usual activities. I had an immediate noticeable improvement in my headaches, but it's been difficult not to slide back into taking too many. I try my best to limit my intake to 10/month, but I have the kind of job that isn't easy to take random sick days, so I often take more than I'm supposed to. I buy them online to supplement the number the GP gives me! I saw a private neurologist a few years ago who said that he has the odd patient that just doesn't respond to any of the preventative but gets an excellent result from Triptans, and in these cases he recommends taking them daily. As far as I know there aren't any long term negative effects other than perpetuating your migraines.

babs1234 profile image
babs1234

I have been told to come off all Tristan's, and painkillers including paracetamol. I went to hell and back for about three weeks. You have to ride through it. I'm waiting for the multiple nerve block, 2nd march. Still get daily headaches but not as severe as they were. It cruel, I know but rebounds are terrible and you do need to break through them

Cat00 profile image
Cat00

Hi,

I had to come off everything too , I'm only allowed 6 pain killer days a Month. I can't have triptans or any other kind of painkillers. This meant I couldn't have anything when I broke my ankle or when I had both of my miscarriages. This is just the reality for people like us im afraid, so many of us were in a similar position, a downward spiral with triptans and the migraines becoming daily or almost daily. It will get worse and then hopefully start to improve. To be honest with overuse ever things stops working anyway you just become resistant. Good luck and hang in there xx

KrisaDance profile image
KrisaDance

Hi there. I feel for u it feels like an impossible cycle to get out of. I was absolutely the same! Rebounds most every day. Trying to crawl through family life feeling v unwell. Desperation creates determination though. U will need it because it's hard for a few weeks coming off triptans but stick in there, it'll be worth it. U will be sick. I had 2 severe migraines coming off. Each lasting 3 days with much committing but hey once u r through u r through! I can not recommend highly enough giving up sugar & following a ketogenic diet for 3 months. I hav had no migraines for a whole month so far. Eating mainly healthy fats, stacks if veggies & some protein. No hunger but it's tough at first again needs-must so big incentive to stock with it. Plus before starting I started taking supplement Migrelief, high magnesium, high B2 & feverfew...really helps lessen severity & cut them back to a few a month. But I found going keto cracked it for me...loads of stuff online, check out Leanne Vogal's Healthful Pursuit website, sound keto advise, loads of helpful tips! Don't despair, you can do this, take magnesium citrate & vit B2 tho it will help coming off triptans. Get as much family support to help with child care etc over the detox 3 weeks coming off triptans, but then u will start to feel better than ever! Good luck with it all, u r not alone, many are taking this path & are out the other side feeling well again! Hold this focus. X

Cally01 profile image
Cally01 in reply to KrisaDance

I find a keto diet helps too. No sugar or sugar supplement defo makes a diff 👍

Jo54321 profile image
Jo54321 in reply to KrisaDance

Hi. So helpful to read this. Did you just stop with the Triptans full stop. I still have some so it is so hard not to go and get one, my will power is awful when my head hurts and life is busy. Today I have tried breaking one in half as a means of ‘weaning myself’ down but I have the other half calling to me.

And I read about MigreLief and wondered what that was like. But I’m terrible for buying things and spending a fortune on supplements but still taking the triptans.

I’d be interested to know how you are doing now as I see this was from 8 months ago. I do hope you are doing well

KateeB profile image
KateeB

I understand how you feel. I have had severe chronic migraine for 30 years. I was on daily triptans ( nasal spray or injection) for around 10 years. Now I am down to about 10 times per month which is a big improvement. Luckily my GP never restricted my prescription so I always knew I could take a triptans if needed. I know that if I didn't have them to fall back on I would be a lot worse. The pain is unbearable and triptans are the only things that help. I have managed to reduce by having daith piercing , candesartan and GON block. By the way you can have Botox and GON done privately at national migraine centre with no wait. Worth trying if u can afford it !

Good luck x

troy04 profile image
troy04

sozzy42 I have migraines for over 20 years ! I have tried all medicines - nothing worked. I have tried Amitriptyline , Nortriptyline , Naproxen , Topiramate , Beta blockers - nothing will stop my headache. I am not sure why Naproxen would work better than any other NSAID but it is often advised - but at the end of the day - it is just a pain killer, so no permanent solution.

To answer your question - I would try to take 400mg Riboflavin (Vitamin B2) every day and after 50 to 60 days, you should see headache is eased - although there is no guarantee. Please remember, the daily dose has to be 400mg and you usually cannot purchase this from pharmacy. If your GP does not prescribe, you may purchase it from Amazon (Bio-tech, 1 capsule) or you may purchase from Holland & Barrett but they only have 100mg tablet, so you need to swallow 4 each day.

Some people advise to take random muti-vitamin and minerals but there is no evidence that it would work, however for Riboflavin - there was a clinical research in 1998 - ncbi.nlm.nih.gov/pubmed/948...

I started to take Riboflavin recently and after 60 days, I can say the headache's intensity has been reduced. I occasionally take Rizatriptan but not as much as I used to.

I am also taking homeopathic treatment at the same time - this may have reduced headache as well - not sure. You may consult an experienced homeopathic practitioner - it may work.

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