Occipital nerve block: Hi I have been... - National Migraine...

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Occipital nerve block

Agilityaddict profile image
13 Replies

Hi I have been trying to find out information on occipital nerve blocks and wondered if anyone has had any experience with this? Does it work ? Can you come off your regular medication with this ? I am currently taking Gabapentin 300mgs at night and struggling to have a clear head to focus on my job in the day. I did take it more regularly but have had to reduce the dose. I am in a circle of almost daily headaches and rebound headaches from sumitriptan use which is getting me down. I would love to hear from anyone who has had some experience. I am due to go the the migraine centre in April for an appointment.

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Cat00 profile image
Cat00

Hello,

Sorry yo hear you're having a tough time, many of us here have been in the place as you. I had a GON injection two months ago unfortunately it had no effect on me, but it also didn't seem to do much harm. I would normally have Botox which i find much more effective. I don't know if you can take other meds with GON bc I was having a GON precisely bc I couldn't any other meds but I suspect you can. Goodluck with your appointment in April.

Xx

Agilityaddict profile image
Agilityaddict in reply toCat00

Can you tell me more about the Botox treatment. I have heard mixed reports about it?

Thanks

Cat00 profile image
Cat00 in reply toAgilityaddict

Botox was very good for me, I was averaging 18-20 migraines a month, I'd tried 13 different drugs and some of them more than once and in different combinations. I don't drink or smoke or have a social life. I'm 39 and had migraines since before I can remember which were getting gradually worse over the years. I'd been asking for Botox for years before NICE finally sanctioned it for use and I was able to have it.

The first time I had, it was about 30 odd injections which didn't hurt much but to be honest I was so desperate I didn't care anyway. Over the next three months it made me much worse though, It hurt my neck so much I had to give up on many things things like exercise and bending etc! When I went back I was really not sure it worth the reduction in migraines I was in so much pain but you have to have two sessions to really know if it is going to work and that is what the NHS offers. Because of the neck pain they spread the injection sites out more near my neck. This made a huge difference and my migraines halved with no neck pain. I'm only allowed 6 painkiller days a month which normally means I have to no pain relief for the majority of my migraines. The Botox meant I actually could take a Triptan for half of what remained.

The only downside is you cannot have it while you are pregnant or breastfeeding so I couldn't have it for a year and half when I had my daughter and I have been pregnant twice in the last year and had two miscarriages and because we are still trying I haven't been able to have it for over a year hence the GON injection. Unfortunately I miscarried three days after the injection and so had a 17 day straight block of migraines so it didn't stand that much of a chance with that kind of trauma involved. I can't wait until I can have Botox again!

Agilityaddict profile image
Agilityaddict in reply toCat00

Crikey you have been through so much bless you! Its awful having no life isnt it, I dont drink at all now why cause a headache willingly when you have so many on a day to day basis. I have also given up exercise as my migraines have been triggered by exercise sine I was in my 20's but just to get on with it and suffer the consequences. However now I am in my 40's and find the migraines are much worse and in the last few months have had more headache & migraine days than not. I have also tried various regular meds but find that I am constantly foggy headed and suffering side effects like depression on them. I am on Gabapentin but had to reduce my dose significantly to function on the day to day. I also take magnesium regularly but recently ran out and was taking a different one and this has coincided with the increase in headaches. Do you take any other supplements?

Cat00 profile image
Cat00

Yeah its not been a great year! I was on Gabapentin for years and Pregablin and both for a time. Both worked well but the doctors didn't like me being on both plus Pregablin made me put on so much weight I hated it. They are both nasty to come off though so slowly as you can!

I have Fibromyalgia also for which the only treatment is exercise so I don't have much choice on that front plus naturally I would have been a sporty person had I not had so many health issues. Overall I find routine exercise is worth it.

I don't take any supplements partly because its expensive but also because the data, particularly for magnesium, is not very good. I do a lot of research and I talk to my (now at last) brilliant neurologist and she agrees. I've had every type all alternative therapy going and found they don't make even the slightest difference to me. It is up to the individual though and I would try pretty much anything if I thought there was a chance it would work but I've pretty much given up on anything that isn't quite strong!

designer111 profile image
designer111 in reply toCat00

I am taking magnesium malate, can you please tell me your findings as to why you should not have it? Thanks

Cat00 profile image
Cat00 in reply todesigner111

Hello,

I don't know much about magnesium really, or about whether it is harmful or not although I am having to take iron at the moment and I know it could inhibit the absorption of that so I wouldn't take it now anyway.

I've actually just read the most recent assessment from The Migraine Trust about magnesium and they say the information that is out there is inconclusive and that more and bigger experiments would need to be done to reach any positive conclusion. I've talked to my neurologist and she agrees, normally I wouldn't hold much store in a neurologists opinion as their knowledge/interest in migraine in my experience has been pathetic but things have changed for me since finding this particular neurologist. She specialises in migraine and headache disorders and is extremely knowledgable.

My main hesitation is that when I first read about magnesium and migraines that was about ten years ago and it advocated a really high dose, my mother has osteoporosis and I have osteopenia (precursor to osteoporosis) and as a result I am extremely cautious about taking any large quantities of mineral supplement. It has been found that taking potassium and calcium in the wrong way can make your body leach calcium from your bones. I just don't feel I know enough about these things to take the gamble!

designer111 profile image
designer111 in reply toCat00

Wow thanks for that!

jackiesutton62 profile image
jackiesutton62

Hi I had 4 goes at occipital nerve blocks and got no relief. I too have been on many drugs including pregabalin and gabapentin. These didn't stop my migraines. Be careful coming off it's rough but worth it for a clearer mind.

I have had two lots of botox. 31 injections in forehead, scalp, neck and shoulders. I still have headaches but that's all they are. Aspirin takes most away. The number of clear days is amazing. The most being 11 days with no pain.

My nuerologist doesn't do the injections down the sides of the neck as they can cause neck problems. I'd really recommend giving it a try after after 38 yrs of chronic migraine it's a great relief. Good luck x

Agilityaddict profile image
Agilityaddict in reply tojackiesutton62

Thank you thats really helpful

designer111 profile image
designer111

I too want to try the injections as I have had enough and it seems the next best choice according to NMC. It seems a mixed the results below.

KateeB profile image
KateeB

I have had GON 3 times and each time I am completely pain free for 2 weeks which is bliss but the pain is then back to normal ( most days) I found it better than Botox and less painful. You can still take other meds after GON but it may help to reduce the amount you take which should help with rebound. Definitely worth a try x

Lacycat profile image
Lacycat

I've had occipital nerve blocks before. My neurologist will give them to me every single day when I have a migraine. I randomly will have migraines that last about 21 days about 3 times a year. I only get relief for about 12 hours and then we do it again the next day. I do not find them painful because I have a high pain tolerance but most people would. Do I think they work? No not in the way their intended to work. You are supposed to get long-term relief and I don't. But it is worth to me to get the 12-hour relief. My migraine pain is intolerable.

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