Has anyone been taking gabapentin for migraines and have you noticed any side effects when taking it long term?

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My husband has been suffering with unbearable headaches for 15 years. Over the last few months they have become so much worse to the point that he is in a ball, crying in pain, he can't see, can't walk, he was ranting during one attack that he was going to take all of the tablets he could find. He has no memory of saying these things when the headache has eased. He tells me the headache is there constantly but gets worse really quickly. He usually wakes up with the headache although they sometimes come on during the day. They are usually at the sides of his head above his eyes but swaps sides and sometimes goes down his neck. He gets them everyday for a week then has a few days to a week then they start again. He has had a number of GPs all of which have said he doesn't need to be referred to a specialist it is migraines as if it was anything 'serious' we'd have known by now ie nOt a brain tumour. He has had many preventative medicines but none have helped. His latest GP has prescribed gabapentin which was prior to his last and worst attack so far. When we explained what happened she merely raised the dosage and gave imigran for pain relief. I just wondered if anyone has been prescribed gabapentin long term for migranes and if there are any long term side effects as I've heard there are a number namely vitamin B 12 deficiency, pulmonary problems, long and short term memory loss. I just wondered what people's experiences are?

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  • Posted

    Hi there ;-)

    I've been suffering from migraine since I was a teenager then(in short) I was diagnosed with cfs/me and sever short term memory loss. During this time I was also diagnosed with "Cluster Migraine". Initially for my migraine I was prescibed "Amytriptyline" and then later for my cfs/me they gave me Gabapentin, I take 8 a day plus 3 amy's and Imgran nasal spray.

    I know exactly how your husband feels, its the worst kind of pain there is and there have been times when I could happily smash my head against the wall. I've had this for many years (I'm 51) and never seem to be able to catch it at right time. At the moment with all the meds I take I feel like I'm eating sweeties (I also take Serraline and Tramadol and co-dydramol :-)))-Oh! happy days.Well thats me, now for your husband;

    A cool pillow sometimes help, you can get them from ebay and also an eye mask which you place in the fridge, again from the same place. I do find that the nasal spray usually stops me vomiting-which is great because if I am sick, then its really, really bad, oh! and some water with ice cubes in, and of course a darkened room and virtually no noise . I think that everyone who suffers from this would agree that its a real B***!!!!! Try those things it might help a little, my thought are definatley with him (and you) :-))))

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    • Posted

      Ditto since the age of ten 4 to 5 Migraines etc in any 24 hour period. I am self employed which was good initally but being an entertainer I am having to take time off . The world health authority class Migraines worse than blindness so I have applied for disablment benefit . My Nuro Surgean is suggested I have an emplant so if initial test on nerves show I am a candidate this his proceedure I can push a button and block the pain to some degree . Hope this helps as just writing this the screen on laptop is causing irritatiation and sweating like a pig with th pain . Goodluck to you all.

      Chris

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  • Posted

    Hi, I tried Gabapentin for a couple of months a few years back. Torrid side effects almost worse than tge headaches they failed to stop. I recall tiredness, fuzziness so I was unfit to drive etc. There are lots of otgers out tgere, but insist on seeing a neurologist that specialises in headaches! Go private if necessary an initial appt is gen less than £300 could be money well spent to get a consultant rec on meds
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  • Posted

    No sorry I have not tried Gabapentin. What I have found is that for me 500mg of Magnesium Chelate (twice daily) ; 100mg of Vitamin B2 ( twice daily) ; 500mcg Folic acid - totally prevents my migraines from occurring.. first thing to properly work in over 20 years. My wife always suffers and this also works for her so -hope that helps as feedback...
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    • Posted

      Thanks for the suggestion.  How long did it take for your supplements to work to decrease migraines
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  • Posted

    Thanks Rob, the US WebMD site lists both magnesium and B2 as "possibly effective" for migraine and your folic acid dose is normal for women anyway. May explain why I crave marmite when I cannot eat anything else, good B2 source! I'll raise it with my neurologist next month. In the middle of a Botox treatment and don't want to skew the results.
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  • Posted

    Yes - good thinking.

    If you eventually discuss, I think it is the folic acid into the mix which is new here - perhaps its ability to reduce higher than normal homocystein enzyme levels is the missing link, or perhaps taking folic with b2 increases the rate of B2 absorption....

    No worries and best of luck with your botox...

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  • Posted

    Hi there, can't believe that your husband is suffering the same as me. I was referred by my GP, to be told it was just migraine, although I didn't want it to be anything else, it doesn't help because I was just put back onto noritripeline which I had tried before. I took it for a month, but again it didn't help. So this week I went back the GP and have been put onto Gabapentin. I am interested to know how your husband has got on with it. I have now been on it for five days and it's making me feel very light headed and quite strange. I can't see it working to be honest. Would like some feedback.
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  • Posted

    Your poor husband! I used to suffer horrible migraines when I was younger and I know what it's like to seriously wish for death rather than suffer the pain any longer. sad

    Through trial and error, I found a combination of ways to reduce the frequency and severity of my migraines:

    1. Stop eating artificial sweeteners. The ones you most want to avoid are aspartame and sucralose. Be sure to read the ingredients to everything! Often, products don't mention that they contain artificial sweeteners anywhere BUT the ingredients list. If you see a label that reads 'Contains a source of phenylalanine', best to avoid it. Don't forget to check the ingredients on your medications as well!

    2. Keep away from foods heavy in nitrates. Cured meats or heavily processed (usually inexpensive) meats can trigger migraines. If you can't go without bacon or sausage (Lord knows I can't) then buy good quality and eat in moderation.

    3. Be careful with red wine, aged cheese, chocolate, or activated yeast. Some or all of these may trigger headaches... everyone is different. To see if a specific food is a trigger for you, either keep a headache/food journal and look for patterns, or try each item by itself a few times (the same way you introduce foods to infants to check for allergies).

    4. Be aware that caffeine withdrawal can mimic the feeling of a migraine. This is why so many migraine medications contain caffeine. Consider switching to decaffeinated coffees or teas.

    5. Try Botox. Sometimes what starts off as a tension headache can snowball into a migraine. I tried Botox in my forehead several years ago and within three days went from being affected over 20 days a month to no migraines for five months. Some doctors specialize in Botox for migraines but I've always gone to regular dermatologists and had the Botox injections where I notice I start to tense up when a migraine is developing.

    6. Be careful with your environment. Smoke, perfumes, air fresheners, and bright lights can be a trigger. Try unscented laundry detergent, unscented hygiene products, and you might want to try letting someone else take the wheel when you have to drive at night. For me, the lights of other cars flashing off mirrors and through trees can trigger a headache.

    7. Control your nausea. If I feel a headache coming on, sometimes I can keep it from turning into a migraine by controlling the feeling of nausea that usually accompanies the pain. If you can make yourself vomit, do it. It's unpleasant but I find it usually helps. Then, take an anti-emetic like meclizine and a pain reliever. Try Sumatriptan or a prescription migraine pain reliever like Fioricet.

    8. Try a low dose anti-depressant. Often, this will help with the pain even if it doesn't stop the migraines completely.

    9. Try alternative therapies. Acupuncture, acupressure, massage, meditation, biofeedback, or even cold packs on the back of the neck work for some people. Everyone has different triggers and different therapies will work better than others.

    DON'T GIVE UP! Find what works for you! Also, don't let a doctor bully you into accepting less than optimal care. If a treatment isn't working then it's their responsibility to work with you until you find one that does! Your individual treatment plan may take some time to fine tune but the frequency of pain and quality of life you're describing is unacceptable.

    Good luck, my thoughts and prayers are with you!

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    • Posted

      Hi.

      Botox is not cost effective to NHS and has limited value 20 in one 100 success  rate but has to be administered every 12 weeks . Please see my reply to Polly62

      Chris

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    • Posted

      I did smile when reading the above list as I have finally fullfilled the check list and having PENS and now the Doc is applying for the money for a perminate inplant to control the pain as he feels it will help to some degree.
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    • Posted

      I'm going on Botox next month. I have taken too much Imitrex and all I'm really doing is knocking out the pain. I have no idea what to expect with Botox but I am feeling hopeful to finally start living without taking pills. Did you experience any side affects? I was told I may experience neck pain to which I already have a lot of so is the neck pain temporary? 
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    • Posted

      Botox may take a few treatments to work. This is common. I've suffered horrid intractible ("tough to treat" chronic) for years and some cluster (worst). When it works, it definely makes a real and substantial difference in frequency and intensity and ability to treat (Botox, that is). It is not a pleasant experience, but not bad and quick. Few side effects save the occasional sore neck, which most MG sufferers will handle as nothing. Please don't discount trying Botox for migraine injections (but seriously only by a qualified neuro or knowledgable headache specialty provider if possible!). And my neurologist has gotten approval for me to get them every 10 weeks now (mine wear off around 7 ;().  I still get many but they are lessened and respond better to Topomax and triptans and other treatments. Also, watching triggers is key as well documented above and exercise daily-even mild cardio- is a proven help. Pain mangement trainings ( which many will snear at at first, I did), can have some benefit in managing during and between pain. Again, very experienced medical providers may make the difference in value here. Wear sunglasses, even indoors.
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  • Posted

    Hi I've suffered the same symptoms and experiences as your husband is! I have been on neurontin 300 mg for approx 3 months now though they are taking the edge off I still need my back up of zomig , I feel without zomig I wouldn't be here today as it's the only thing that I feel gets rid of the pain !! I have felt at times for someone to cut my head off and I would be quite happy for that to happen when the pain is so intense!! My GP has mentioned b12 , I have looked this up and wellanything that helps get rid of the pain and let me live a normal life I'm willing to try.. I am in process of going for a blood test to check if it could be a b defiency , I'm trying to look at options that are not medicated , more natural remedies because I feel like I walking drug store ! I know of foods that help such as almonds banana spinach but ive only just started looking ito his as my migraines / headaches have only just started to get very intense over last year to the point where I cannot work as I never know when  im going to have an good day!  

     I have also been told about sweetners , avoid like the plague etc I wish you well and hope that you find what works best for yur husband soon 

    i overload myself with vitamins and do yoga seems to relax my body so helps when I'm able to do this .. Maybe will work for others I donknow 

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