Long term sumitriptan.: I've suffered... - National Migraine...

National Migraine Centre

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Long term sumitriptan.

joopers profile image
19 Replies

I've suffered from migraines for over 30 years and found sumitriptan about 5 years ago, which really works for me. I take around 18 tablets a month. I'm currently on day 10 of an unusually long run of attacks, Does anyone know if there are any significant risks in terms of blood pressure/ health problems with long-term use of sumitriptan? I'm 47 and otherwise fit and well.

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joopers profile image
joopers
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19 Replies
Juliapester3 profile image
Juliapester3

Hi jokers, I,ve had migraines for over 20 years but frequent fir the last 10. I started using triptans a month ago because I've always been too scared to take them. I used them for my menstral migraine a couple of weeks ago and instead of it lasting the usual 3/4 days it went n for a week! I felt like it was delaying the migraine instead if aborting it, that said I am going to try with them next time I get a biggie to see if it was just coincidence. When I saw my Dr he was insistent that I only take 8 tablets per month not just because of the rebound factor but also because they restrict the blood supply to your brain and vital organs by constricting the blood vessels,they can cause damage to them if used too often.This is new to me my Drs opinion but worth knowing for anyone using them. Hope this helps

joopers profile image
joopers in reply to Juliapester3

Thank you for your reply, I think I'll go back to the GP for a review. J

What a very wise question to ask. You do need to consider the risks & benefits of drugs you use to ensure you are making the right decision for your health & well being both now & in the future.

I also take Sumatriptan nasal spray & have done for at least a decade. I'm not sure how helpful this is but I do know that Tritans are not safe for everybody. I'm guessing certain medical conditions are contradictory to their use & probably some drugs as well. I don't know what these conditions or drugs might be.

I know there is a limit of how soon you use another & how many you should use in a row. I would seek advice from a doctor about the exact information if you cannot find your answer here. Good Luck.

Sybille profile image
Sybille

Hi. I have been suffering from migraines for 30 years and used triptans for 20 years but it is the only way I have to survive, so I can't afford to wonder about the risks. I tried a detox last summer but it didn't work, actually made it worse. However I have recently managed to reduce the amount of triptans I take since I am on Pregabalin (the very last treatment I had never tried). Pregabalin has no effect on menstrual migraines though and for me as well the migraines that start with my period can last for up to 12-14 days. It goes on and on, you feel it will never stop and suddenly it does. Then I get a couple of weeks break and I have my period again!

Now Joopers you have to find a way to reduce the amount of triptans you take, on 18 per month you are feeding the migraines.

Valelady profile image
Valelady in reply to Sybille

I was prescribed pregabalin for trigeminal neuralgia and I got to the point I would not take any more as I lost all my inhabitions and speaking my thoughts which I felt was not me it became embarrassing. Amitriptilene 50 mg keeps my pain away. pregabalin is now being abused by drug addicts and I'm not sure whether it is class a drug but I feel it should just my opinion

I have been suffering from migraine for over 60 years and since retirement the headaches have become much more frequent. I was prescribed sumatriptan for the first time about 12 years ago and last year ended up taking about 24 a month as I was getting a migraine attack almost every day. The tablets always stopped the migraine attack but the headaches were recurring at increasingly shorter intervals.

I visited the National Migraine Centre and I was told that to take 10 or more sumatriptans a month leads to rebound headaches, i.e. the excessive medication causes the headaches to recur more frequently.

I came off ALL medication for six weeks (horrendous!) but now I can limit my intake of sumatriptan to nine 50mg doses a month. There are some days when I just have to put up with an attack and do nothing about it but on the whole, I think I am getting fewer headaches, they are less intense and I feel generally better.

The moral of this story is: TAKE CARE!

Claire27 profile image
Claire27

It's an interesting question, and one I've discussed with my neurologist at length as I have a tendancy to take to many and slip into medication overuse. While he admit, and has data to show, that coming off triptans all together would be the best treatment and would (after a painful period) significantly reduce the number of migraine attacks, he also says that for some triptans are the only treatment. His view was that if you are going to use triptans then you should just take as many as you need, even if that is a lot. He said that the long term risks are not significant and it's worth thinking about your quality of life etc. he also told me about a patient who had been through all the preventative drugs to no avail, or at least not without unbearable side effects, so he had recommended daily triptan use.

I don't think it's the ideal state to be in, and studies prove that the migraine would be better without using them, but it seems like if its what gets you through life...then stick with it.

joopers profile image
joopers in reply to Claire27

Thanks for your reply, there appears to be no easy answer. I do think I need to review my medication, but as you say, having some quality of life in between is also important.

nevergiveup profile image
nevergiveup

Hi joopers, I too have had migraines for 20 years and only tried sumatriptan 5 years ago. At first I was still only getting fortnightly migraines that lasted 3 days but after about 2 years they started weekly. The Triptans take the pain and nausea away within an hour, but 24 hours later it comes back, for 3 days usually. But just recently I had a 16 days straight spell and thought i was never going to have a clear head again! I am also concerned about how many triptans I take but if the alternative is going back to pain and nausea for 3 days every other week I just can't face it! My quality of life, playing sport, spending time with my family, has been 100% better since using Triptans so I'm sticking with them for now. I've also been using migraine support formula since about March and I did have a 4 week spell without one migraine which was amazing but then I started getting them frequently again so still not sure if that really is helping? It's so hard to workout why they keep coming, but maybe I am suffering from overuse medication too now?

joopers profile image
joopers in reply to nevergiveup

Hi nevergiveup, thanks for your reply. Can I ask what migraine support formula you have tried? I would like to investigate alternatives also. Thanks. J

nevergiveup profile image
nevergiveup in reply to joopers

Hi joopers, I came across it on the Internet when I was researching feverfew and white willow bark (as I'd heard that can help migraines) its called Migraine Support Formula and contains ingredients backed by numerous clinical trials. It's costing me approximately $48 aus dollars per month (depending on USA exchange rate) but for a while I was buying less Triptans so I didn't mind trying it. As I did have one good spell of four weeks I was and still am optimistic, but then we always want something to work eventually don't we! I will give it another few months and see how I feel. I'm up to day 5 without a migraine but as my last one did last 16 days that was my longest spell of taking Triptans. However I had stopped all caffeine intake and was wondering if this was a withdrawal migraine as I did this in January and same thing happened! Should never have started drinking coffee again, so hard to get off it!

joopers profile image
joopers in reply to nevergiveup

Thanks for that info - I will definitely try it.

Hi All,

I think that we are all in the same boat on this one. I have chronic daily migraine, have had this for the last 4 years. Last year I went off all of the triptans for about 6 months and it made NO difference. Talking to my neurologists, the best "migraine" doctor in the city, and him being apart of a number of clinical papers, he said, so far there is no indication of problems arising from taking too much. It was decided that in my case, taking 100mg tablets as many times as I need daily is ok (better than all the narcotics I was on before!!). I agree though, in the past I did feel that taking the tablets just delayed the attack, but that was many years ago, before I got into this current cycle. Do what you think is best for you, is the only answer I can give you. I currently take 1-2 per day, and that is the only way that I can survive. That is all any of us are trying to do... survive. Don't let anyone tell you what you are doing is wrong etc. If you are getting relief, then go ahead.

As an aside, if you do try to go off the triptans and they suggest Prednisone, a steroid commonly used to abort long-term attacks and rebound headaches, then please look the side effects of that. Some people get a small dose, others like me, were given week long doses. For me, it completely wiped out my immune system, making me horribly sick. AND it did nothing for my migraines. I don't want to dissuade you from this, I just want to make you aware of it. I am sure a lot of people have had good success from it.

Take care and best of luck!

xxx

joopers profile image
joopers in reply to

Thanks for your reply. Looks as if there's no long-term answer to migraine, seems that controlling it is an on-going quest!

PS - I have been a sufferer for the past 15 years :|

BobC1 profile image
BobC1

Yes, I took these for a couple of cluster headache sessions, and they worked perfectly, I thought I had found the answer, however after a few doses they had the opposite affect (call this rebound), made me worse, now even looking at an old packet or thinking of them makes me shiver.

joopers profile image
joopers in reply to BobC1

Thanks for your reply Bob - I think I'll ret to investigate the alternative route as well.

Fourelmsali profile image
Fourelmsali

Oh golly, what depressing reading this all is.

a chronic migraine sufferer, with medicine overuse thrown in. but what to do when on day 4 of sickness and the constant pain? im now on 2 monthly intervals of GON injections both sides...but fear i have to stop as i now have constant Occipital Nerve skull pain and im wanting to give up, crawl away somewhere and only emerge when this constant pain promises not to return.

I also have a TMS gadget, to use along side the GON injections to try and wean me off the triptans..or im going in for a week of IV treatment. Or be on waiting list for ONS operation. Last resort. Its a horrific nightmare. im not terminally ill and im so grateful for that, but this daily pain is so debilitating im at an all time low.

How to get through this? xx

Valelady profile image
Valelady

I have had migraines for 40 years I was taking zolmitriptan 2.5 mg taking 2 per day I feel I'm getting rebound headaches now, I have tried soluble aspirin or soluble disprin which has aspring in them I find it is keeping my migraine at bay which is good for me as I want off the zolmitripan hope this helps

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