Gabapentin

[Mary1959]

I've been taking gabapentin for 2 weeks but it hasn't helped my migranes. I'm on lowest dose 100mg twice daily, I'm just wondering if I need to contact doctor to increase the dose, or do they take longer to work than 2 weeks?

[Onthemove1971]

Just curious do you have other health issues?I have heard that long term use of this medication can lead to dementia.

I was on this medication on the highest dose and they were worried about long term effects.

Is this the only preventative you take?

What do you take when the pain gets bad?

[Mary1959 in reply to Onthemove1971]

Hi thanks for you're reply, I take propanolol and amitriptyline also, though nothing works. I take cocodamol and triptans when I get a migrane, which do work, thankfully. I'm waiting for headache specialist appointment at the hospital but so far I've been waiting 6 months.

[Cat00 in reply to Mary1959]

You need to give it at 3 weeks minimum but more like 6 weeks. I've been on all three of those drugs, propranolol and Amitriptyline for migraine and Gabapentin for fibromyalgia. Gabapentin is not a drug I associate with migraines tbh. I was on 900 mg a day, so much higher dose. Watch out for weight gain is all I'd say. Unusual for you to be on 3 preventatives at once? Are they planning to reduce the others?

[Mary1959 in reply to Cat00]

My g.p is useless and all I ever get are phone appointments, I can't wait to see a specialist who understands. They just leave other drugs as they are and just add others on. I wouldn't mind, but I'm still suffering loads of migranes. Thanks for your reply

[Cat00 in reply to Mary1959]

I always found doctors would take turns, one would pile the drugs on and then the next would take me all off all of them again. I would like to say it is more organized when with a specialist and in some senses it definitely is but you encounter slightly different problems also.

[Mary1959 in reply to Cat00]

The only thing I'm worried about with specialist, is if they take me off triptans, as they are the only thing that gives me any quality of life. The preventatives don't work so I wouldn't mind coming off them in favour of something else. Thanks for you're reply and hope you're migranes are soon better x

[Cat00 in reply to Mary1959]

If you are not taking more than 8 in a month they shouldn't take them off you, but then a GP should be doing the same thing anyway. If you are taking more than that a month they won't be able to tell if your migraines are Medication Overuse Migraine or actually chronic. I would be irresponsible to put you on potentially damaging drugs that you didn't need to be on. If you are taking more than that your GP should have already intervened anyway.

[Mary1959 in reply to Cat00]

Thanks for you're reply, I am taking more than 8 but my g.p says to take one as soon as migran e starts so they work better. Just be glad when I see specialist as g.ps aren't clued up on migrane.

[Cat00 in reply to Mary1959]

That rule only applies if you are taking less than 8 a month.

[Badknee in reply to Mary1959]

I had headaches for decades at least 35+ years. My brother in law, a doctor, told me about Candesartan… it’s a blood pressure medicine, but I don’t have BP problems. Started taking it January 14, 2014. It was a lifesaver. I’ve had two bad headaches where I vomited since then. My headaches are just a thing of the past. The Diamond Headache Clinic in Chicago, oldest private headache clinic now uses it. The DHC is WONDERFUL!!! Your gp can prescribe it. Good luck to you. 👍🏻

[Mary1959 in reply to Badknee]

Ooh thankyou so much, I will definitely look into that x

[Monroecuts]

I don’t know why a Dr would put you on Gabapentin, it is no longer a recommended drug for Migraine by NICE, it would not count as having tried a preventative medicine for the CGRP treatment. I was put on them before I knew this and it didn’t help at all and the side effects are awful. I would challenge this approach if I was you.

[mklc in reply to Monroecuts]

I agree. What are you taking now?

[Mary1959 in reply to mklc]

I'm taking 75mg amitriptyline, 80mg propanolol, 200mg gabapentin, plus naratriptan. and and cocodamol

[Mary1959 in reply to Monroecuts]

Thankyou for your reply, I will question it with my g.p if I ever can get an appointment!

[Monroecuts]

I came off Gabapentin and tried Topirimate which didn’t work for me. I’m now on Aimovig (Erenumab) and it has been amazing.

[Mary1959 in reply to Monroecuts]

I've also tried topiramate but had bad side effects. I've never tried Aimovig but it's like getting blood out of a stone, trying to get different medication from my g.p. I've been waiting since March for my hospital appointment but they said it will be November and my g.p says I've got to wait and see what they say. Thanks for your reply

[Monroecuts in reply to Mary1959]

It sounds like you have your three preventatives with Amitriptyline, Propranolol and Topirimate so that should be enough to be able to be prescribed an Anti CGRP drug. Like you say it is just a long wait. I chose to go private and had proved it worked when I got to the NHS neurology team and luckily they agreed to put me on it.

[Mary1959 in reply to Monroecuts]

Glad you've got the drug to try, hope it works for you. Thanks for you're reply.

[Onthemove1971]

Has anyone talked to you about Magnesium? Studies have shown that people who have migraines need extra Magnisium. It takes at least 3 months to really make a difference. Start slow and add doses. I would not recommend starting with Magnisium Ociate. There are 5-6 different types.

I take 3 tablets a day am, lunch and pm. It helps so much.

I would also recommend you see how high the dose of your Triptan is. You may need to increase the dose. The goal is to catch the pain right as it starts and never have a migraine long at all.

Good luck

[Mary1959 in reply to Onthemove1971]

Thankyou for your reply. I've taken magnesium in the last but only one daily so will give it another go. I take naratryptan but always had same dose, so will ask g.p about that. Thanks for your advice and hope you're migrane s Get better x

[Blearyeyed]

Garbapentin can take up to six weeks to have a significant effect.If you haven't had any side effects with it you can request the GP to increase the dose after a few weeks.

I took Garbapentin initially for Fibromyalgia but changed to Pregabalin because , although they are similar, it is more effective at a lower dose and has less effect on your stomach .

I didn't find either of them helped my Migraines. I don't think they are that efficient as a Migraine Preventative unless the headaches are linked to, or triggered by, another general neurological pain issue.

I was tried on Propanolol but it did nothing for my head pain .

Amitriptyline also made my Migraines worse and more frequent because it made me feel tense and made my insomnia worse.

I know some people actually take it to help them sleep but for some people it can have the opposite effect to the one you want.

My daughter takes Candesartan and that seems to be helping her Migraines a lot.

I can't take it because it does the opposite to my heart medications , but getting my heart rate managed actually helped reduce the Migraines and level of pain for me.

I didn't find Sumatriptan worked on my Migraines but it does help my Cluster Headaches.

I also received a Vagus Nerve Stimulator from Neurology which has helped with reducing the amount of Migraines I have as well as reducing the pain during an episode.

I know a number of Migraine sufferers whom stopped using Codiene based medications altogether, like Cocodamol, because it is known to cause Rebound Pain as the dose drops and actually causes a new headache or migraine to begin. This is called , The Codiene Cycle" and part of the reason that drug can become addictive.

I get supplemental oxygen for my Cluster Headaches as a treatment and preventative but the daily oxygen has also reduced the Migraine events.

To be honest if you try a treatment for 6-8 weeks , try a dose increase but still feel no or a significant change in your symptoms it is unlikely to be right for you and rather than a just continuing on it , it's better to taper off it and try something else.

People like myself do take combinations of treatments both as prevention and treatment but you only take the medications in combination that have made some level of difference. Taking drugs that aren't really helping is pointless and can actually add to the problem by causing side effects that trigger the pain instead of curing it.

Have you seen a Neurologist, Headache or Pain Specialist?

If you are getting these prescriptions just from the GP with no other specialists input I would suggest that you request for your GP to chase up the appointment to the Pain Clinic or Neurology for assessment because if you don't get to the root triggers of your headaches it can make finding the right medication much harder .

Your GP does seem to be a bit out of their depth . You need proper tests to rule out other causes and to help get better recommendations for the GP about which treatments to try.

I also have Ehlers Danlos, Fibro and Chronic Dysautonomia ( autonomic nervous system dysfunction).

Hope things improve soon.

[Mary1959 in reply to Blearyeyed]

Thankyou so much for you're reply. I'll stick another few weeks with gabapentin but haven't much faith in it. My g.p has given me amitriptyline for the last 20+ years and same of propanolol but they don't do anything for my migranes. I was taking a lot of cocodamol but since last Christmas, I've really cut them down as I can't go to the loo if I take a lot. I'm now just taking paracetamol to help my neck and shoulder pain. My friends say, I've got a lot of the symptoms of fibromyalgia so I'm going to mention it to g.p. My g.p hasn't even sent me for blood tests to give any answers. I'm going to phone hospital tomorrow to see if I'm near top of list yet. I've been waiting 6 months but they say it will probably be November :(. I also suffer from anxiety and depression, mainly through the pain of migranes. Luckily, my triptans do get rid of them but everyone keeps going on about rebound headaches but I went 3 weeks of agony going without tablets and it didn't make any difference. I think we have to consider our mental health versus taking more tablets than we should and I care for my dad and grandchildren so I need to be ok. Good luck with your migrane s and hope you soon get relief x

[Blearyeyed in reply to Mary1959]

If you do also have toilet issues from the Codiene it may be worth asking your GP if you can change to Pregabalin now as Garbapentin does increase constipation too.If you have Fibro the Pregabalin or Garbapentin can help with those but it can take a while to get the dose right.

I take a combination of three lower dose medications for my Fibro which seem to work better than just the one high dose medication. I take Pregabalin, Duloxetine and Paracetamol for it. Each works to help the pain by different neuro pathways.

I take Indomethacin before doing exercise or a physical activity because I also get activity onset Migraine partly because of the P.O.T.S part of my Dysautonomia.

You could find that if you have Fibro it is part of the trigger for the Migraines.

I also had bad side effects with Topiramate , I basically came off it within 48 hours my heart rate spiked I was hyper alert and didn't sleep for 5 days , and it gave me the worst Migraine pain I've ever had!

Are you on any medications for your Anxiety and Depression?

If you are , and you don't mind me asking , which is it?

I only ask because some Migraine sufferers get a good response to antidepressants and serotonin reuptake meds. They are often used now to treat chronic pain.

If you take a antidepressant you could find a change in dose for that would also help.

Mention the fact that you are struggling with Anxiety and Depression because of the Migraine pain when you call the hospital too and that your GP has discussed Fibro with you. You may get further if you ask to be put through to the Department itself rather than appointments.

If you think you could manage to get to the hospital on short notice also tell them you would be willing to take a cancellation and could you go on the call up list for cancelled appointments.

I did that for a couple of problems and actually got called back within a couple of weeks.

Make sure you mention your body pain and any other symptoms you are getting and discuss Fibro at the appointment, the doctor you see may be a Headache Specialist but they will have some knowledge about Fibro too , and you can actually ask them to refer you across to Neurology and wait less time for that appointment if it's done within the hospital rather than via the G.P.

Good luck , let us know how you get on, Bee

[Mary1959 in reply to Blearyeyed]

Thanks Bee, for all your help, you've given me some really good advice. I was on setraline for a while for depression, then after a year's gap, I was on fluoxitine, both worked ok for a while, but the doctor took me off them and replaced with topiramate, which have me awful vertigo and pounding head, I feel such a nuisance, with the doctor, but they just text me now, because I'm not Ill enough for a face to face appointment! I would change doctors but want to wait for hospital appointment first. I will try and hurry my appointment up if I can. I'll let you know how I get on. Sorry you're suffering so much x

[Blearyeyed in reply to Mary1959]

You are certainly ill enough for an appointment if you have symptoms that are effecting your quality of life and mental health.You are not a nuisance , you only need to keep asking for help because they haven't done their job and treated you properly yet.

When the Topiramate didn't work they should have put you back on to one of the ones that you had previously to help until they had decided on another drug option or sent you to get a Mental Health assessment and recommendations from a specialist.

You can request a face to face appointment and explain that you are not satisfied with your current treatment and need to discuss things with a GP which makes it easier for you to explain your symptoms and to get properly examined.

I agree with you , you may find it better to change GP surgery but it does help if you can wait until your hospital appointment . I planned to do that as I had 12 years of misdiagnosis and delays until I started to learn more from support groups like this one.

Turned out just as I was about to move a new GP came in and sorted out some diagnosis and the referrals I needed that both the surgery and hospital had been dithering about.

Don't give up hope , you'll get there , take care , Bee

[Mary1959 in reply to Blearyeyed]

Thanks Bee, I've found this group really helpful (especially you) it lets you know you're not on your own.I've emailed a long email to g.p explaining everything and asking for a face to face appointment, thanks again, take care Mary x

[Hidden]

Gabapentin is very over-prescribed. I’ve just been given it for migraines. Not only has it had no effect, the side effects are ghastly. I’m trying to get in touch with my GP to get me off it. It was never intended for migraines.

[Mary1959 in reply to Hidden]

I found it useless too. I've just had blood tests done and it showed I'm anaemic and question Mark over diabetic result. I've got to take iron tablets and have further blood tests. I'm holding on to the hope that my headaches may be worse, because of the findings. I'm still waiting for specialist appointment, 6 months now and still waiting. 😔

[Hidden in reply to Mary1959]

Hi Mary. Are you thinking that the Gabapentin may have caused these other conditions?

[Mary1959 in reply to Hidden]

Hi don't think so, as I was only on gabapentin for 6 weeks, because they caused my migrane S to get worse. I had routine bloods done at g.ps and the problems were picked up then. I've been taking magnesium which seems to be helping but now I've got to stop, as they can stop iron tablets working so well. It's just swapping one misery for another.

[Cetkat in reply to Mary1959]

If the magnesium helps, I'd fight for it. You can alter the timing and dose. The trick is consistency. As an example: Lithium dose is affected by salt intake and caffeine. Many assume that means you can't have coffee. In reality, you can - you just have to take the same amount each day to keep the lithium in range. If magnesium blocks iron absorption, you simply take more iron & monitor with monthly blood tests.

[Mary1959 in reply to Cetkat]

Thankyou for your reply, my iron deficiency is ok now, so I'm taking the magnesium and also have started aimovig injeections.

[Cetkat in reply to Mary1959]

That's great news. I'm glad that solved itself. I've been on Aimovig for over a year.. I've found it helpful. I found better coverage on the higher dose. I decided to increase it after about 7 months to see what happened. I was worried about increasing the GI effects, but it seems to be the same. Bonus is having the magnesium.. counteracts the constipation.

[Mary1959 in reply to Cetkat]

Thankyou for your reply, I hope the aimovig works for you. Take care x