National Migraine Centre
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Medication overuse headache

Hi All,

I posted a while back about my daily headaches and got some useful advice. I'm now on Topirimate 25mg twice daily with no effect yet but have come to the conclusion myself after much research that I have been using pain killers every day for months now and this is likely what is making my migraines worse. I'm now day 3 with no pain relief and just wondered if anyone had any similar experiences? I feel really awful my head is just constantly sore with pretty much no breaks at all. I've had to get my baby looked after and I am genuinely really so miserable I don't know how much longer I can go on like this. Does anyone know how long it will be before I start to feel any relief if at all?

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I don't know. I feel for you so much because so many of us are completely helpless with the migraine curse. I suffered terribly when my daughter was an infant. To avoid giving her the medicine while nursing, I would consult with pharmacists about how long the medicine stayed in the bloodstream, and pump my milk out accordingly, staying up sometimes all night. It's really hard with a baby. I had a friend who would take care of my daughter when I got migraines, dragging myself over to her home to sleep.

Fortunately my child was easy going as an infant, and also oftentimes slept easily with me when I was suffering an attack. I tried to go cold turkey for six days once with no relief. I couldn't be out of a dark room, eat or function at all. Crawled to the toilet. I was desperate to stop Triptans to no avail. I gave up after six days.

I don't know how migraineurs deal with looking at a computer or cell phone screen when in the middle of migraine nightmare. I can't look at one, or any light at all, even wearing sun glasses.

Take care and don't give up hope. You are not alone. I hope someone on this site had helpful suggestions for you.

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Hello,

In the past when I was put on a 'Medication holiday" as they called it, it was for six weeks. Now I am on a very strict 6 painkiller days a month and have been for a few years now. To be honest because I have chronic migraine which ebbs and flows in its severity anyway I haven't actually noticed much improvement but at least I know that medication overuse is not a factor which also means the doctors will look at your case more seriously. The greatest help I found was Botox which unfortunately I haven't been able to have because of pregnancy and trying for a baby etc but they wouldn't give you that if you're taking too many painkillers they would want to rule that out first. Stick with it if you can because no one else can do it for you and my neurologist is adamant it is necessary, other people get 8 days a month of painkillers and she believes this is still too much. I have seen neurologists for my migraines for over 20 years and she is the only one who's opinion I trust because her knowledge is extensive. Also if your breastfeeding this wont be could for the baby which is an extra layer of stress! My daughter had colic and I had to go with nothing for as long as I was breastfeeding, they made me stop at 6 months to give me Botox because they were concerned how bad I got!

Sorry it is not as positive as I would like but everyone is different and at the end of the day it has to be done so well done for taking it on.

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Hi, I don't know if I can be any help to you but I feel moved to reply as I feel really sorry that you're struggling. I'm 60 and still haven't got it 100% right but have learnt a lot since I was young. We all find our own triggers and ways of coping but this is what I've found. Having tried preventive after preventive, I found none worked. I found Topiramate also caused a loss of libido. I have stopped all analgesia and use a triptan, which is not ideal but relieves the pain on days when I really need to be well. The rebound can be a problem if I take more than a couple a week so now and then I have to grasp the nettle and let the pain win. I find an antihistamine tablet helps me to sleep through some of that period of pain. I then have a good long period of feeling very well. You're being so brave at the moment by resisting medication but stick with it, you're doing really well. It's worth it. The most important thing for me is to look at the food I eat. Personally, food is the main culprit for me. I have felt so much better and can get on with having a good life if I keep a constant eye on what I eat. This will sound like an advert but the most helpful book I've found is by Josh Turknett, who is a migraine sufferer and a neurologist. It is called The Migraine Miracle and advocates omitting certain food types in order to reduce the inflammation. It's also a great way for anyone to eat, as it's very healthy, based on up to date research. He has a really helpful and supportive Facebook page which helps both physically and psychologially and let's you know you're not alone. I also hope you have a very understanding group of family and friends as I have found there is a lot of misunderstanding and pressure from some people when it comes to social events etc. There are many books around and I find there are a lot of common ideas. I would also add, not to eat large quantities of any single thing until you've worked out what you can 'get away ' with. Stress and lack of exercise and fresh air are also big triggers for me. Fortunately for me I don't have menstrual migraines any more. I can tell you that the more you read and understand about migraines the better life gets. It does take effort and strength of will though. You may be one of the lucky ones for whom this is a temporary condition. I really hope so. You need to enjoy your lovely baby. If not, it may be a condition which you have to accept as part of life. I accept there's no cure for me, but I live and deal with what I have in the best way I can and surround myself with understanding people. Life is great and it will be for you, too.

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Interesting about Josh as he was mentioned on the Migraine Summit. Will take a look at the book thanks.

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Yes, he did give a great presentation. I found the other speakers excellent too, although I didn't manage to catch them all.

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I made notes of what they said on this topic oh The Migraine Summit here if it helps: healthunlocked.com/migraine...

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Hi I found the book and ordered it I agree with you that food can trigger migraines and medicine can most definitely causes rebound headaches. I feel like I'm in the rebound stage they are horrible nothing that I take helps. I just ordered Josh's book and I join the Facebook page I got Botox shots about three weeks ago but The doctor said the first round you may not tell too much of a difference that it would be into the second round before you really tell a difference. Is there anything you can help me with about the eating I haven't got my book yet but I've stop taken so much medicine and been struggling with it. I use Essential oils. Any help would be appreciated. If you would like to email me that would be great ruhis2013@yahoo.com are you a member of the Facebook page of his. I joined it and I also join the program he had for $14 a month but if you can help me in anyway I would so much appreciate it.

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Hi, It seems as though you're doing well. I don't feel it would be right for me to say more than I already have about the things I find helpful. We're all so different which is why doctors struggle to get it right for us. Hope you find the book etc as helpful as I have. Good luck.

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I too was diagnosed with Medication Overdose Headaches several years ago. The constant headaches caused by it and how it makes you feel is something that only someone who has been there can truly understand. I really feel for you. I had to stop all painkillers for 6 weeks and did survive! I used a Wheat bag heated in the microwave to put around my neck where the pain was bad. You can also use it cold if you put it in the freezer. I also had a massage or two on my neck and shoulders. I was put on Amitriptyline 10 mg daily 3 hours before bedtime and this dose was, after the 6 weeks, increased very slowly up to 50 mg daily which really helped my migraines. Some people can slip back into medication headaches, a bit like with any addiction, but I managed not to and 5 years on have very slowly come off the Amitriptyline and to my amazement have been migraine free for 8 months! My greatest help came from an appointment at The National Migraine Centre. They are specialists in migraines and not many GPs are. I have tried many treatments over the years and there are new ones now so keep looking for the right one for you. Good luck.

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It takes at least three weeks of hell before the withdrawal symptoms stop. You should start to feel better after that x

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Ask your Doc if you can be put on the Gammacore trial

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I really feel for you. I apparently had medication overuse/ migraine for about 10 years( had chronic migraine for 30) I was constantly told to go cold turkey and take no pain relief for several weeks. I knew I couldn't do it as the pain was unbearable without triptans. Docs didn't understand the severity and made it sound easy!! Finally my break through came when I had a GON injection and started candesartan. This seemed to help break the cycle. Now finally I am down to around 10 days a month pain relief which apparently is fine. I certainly would not contemplate life without being able to have pain relief if needed. Maybe see if you can try Botox or GON if possible

Good luck xx

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The more medication you take lowers your pain threshold, I use to take medication as so as a headache started. After a few months of leaving it until a headache was unbearable my pain threshold was a lot higher which helped with my migraine's. I've suffered with migraine's for 48 years and now I feel more capable to deal and live with them. I still get some nasty ones but I can deal with them. I read a report in a magazine by an English doctor on a plane coming home from a holiday, saying the more painkillers you take the lower you pain threshold will be. I tried his advice as found out he was right.

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Hi please be VERY AWARE OF THE POSSIBLE SIDE EFFECTS OF THIS MEDICINE. I had the same prescription and had pins and needles in my hands and feet, dreadful nausea ,spacial awareness issues, word finding difficulties and general cognitive impairment such as sequencing and memory,I had to stop driving some days and am still experiencing side effects 4 weeks after withdrawal. I was only on this drug for approximately 6 weeks and feel it has altered the chemistry in my brain. I'm 5 weeks free and still having word finding issues and memory problems. Good luck.

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I really feel for you and hope topiramate helps. I have chronic migraine too and tried topiramate but got extremely upsetting nightmares with it - traumatic - so if you get them (I really hope you don't) then don't despair because you could try gabapentin as an alternative (same type of drug) which has worked really well for me for combined with aspirin. Some use amitriptylin with gabapentin both at night. Don't give up - some combination will work even if it takes years - it will be worth it.

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Thank you all for replying apologies for the late reply I've been feeling really rough these past few weeks. I'm still not feeling great now but have seen the neurologist now who has had upped my dose of topirimate and said I just need to ride things out without the pain killers. It's so tough I just hope things improve soon. Thank you all for taking the time to reply xx

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Hi Rose I went up to 50mg topiramate twice daily and Infometacin three times a day and was headache free since February just taking those and no other painkillers at all In June I have reduce to 25mg Topiramate twice daily but sadly I have had the odd migraine so waiting to see if I have to go up a dose the only side effect is I am a little wobbly when walking which is a common side effect apparently

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Hi Julie thanks for your reply. Do you remember how long after you went up to 50mg twice daily did the headaches stop? I've only been on that dose for 3 days but still feel really awful starting to think nothing will ever help :(

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Hi Rose 3 weeks at 50mg twice daily and 25mg Indonetacin 3times a day and was migraine free good luck

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