Occipital Nerve Block for Migraines

[caroash]

Hi everyone my 19 year old daughter stuffers with chronic migraines and has had 2 lots of occipital Nerve Block injections,the first one was last October then the 2nd was this January.Thwy did seem to help for a few weeks,but wears off quickly.Tbey said next time she could have one with a steroid as this can make it work better.Has anyone had experience of them with or without steroid.t. Thanks.

[Cat00]

I've had both, I had to have them when I was pregnant bc they stopped all my other treatments. I'm afraid they made no difference to my migraines.

[caroash in reply to Cat00]

Hi sorry they didn't help you,has anything else helped you?

[Cat00 in reply to caroash]

Yes Botox helped and I'm now on a CGRP self injector which has been amazing. I went from 18 days of migraine out of 30 to 4 days of migraine out of 30.

[caroash in reply to Cat00]

That's amazing.my daughter has had the same seems often line more days suffering than without.Neurologust put her onCandisatan which helped a bit at first for say 3 months,but I think they are making her very fatigued She's got a consultation soon so will ask about CGRP , thankyou

[Cat00 in reply to caroash]

I was on Candisatan too but it made my blood pressure too low. I tried 13 different drugs until NICE finally let Botox be given on the NHS and I finally got some relief. To qualify for Botox or CGRP you have to have 15 days plus migraines a month and have had tried 3 different preventatives. Is your daughter keeping a you keeping a headache diary?

[caroash in reply to Cat00]

Yes I think they are worse mid cycle,ore period they've only tried candisatan and the GPnput her on various tryptans, Naproxen and the 2 nerve blocks.I hope he will let her have the CGRP ,I've read how effective it can be.Are their any side effects from it?

[Cat00 in reply to caroash]

Menstrual migraines are always the worst! The only thing I've noticed side effects wise is that my migraines are really different/weird than they used to be, I get really drowsy and I feel wired too. So I have a lot less pain in my head but the rest of me feels weird, but thats still better than before.

[caroash in reply to Cat00]

Ahh that's reassuring,so glad it's helped you.After migraines she's always so exhausted for a long time,don't know if it's to do with her having CFS or the migraines themselves,but thanks for all you advise So appreciate it😊

[Cat00 in reply to caroash]

I have fibromyalgia too which is often put in the same bracket as CFS and involves a lot of fatigue, so I know how she feels! The "Postdrome" part of the migraine can go on for days and make you tired. The trouble with people like your daughter and me is we have so many migraines the "Postdrome" merges into the "Prodrome" phase of the next migraine which also can make you tired. The pain part of the migraine is in the middle of these two phases and is the only phase that is really visible to everyone else. It may be if she can reduce her migraine frequency that her CFS also reduces.

[caroash in reply to Cat00]

Yes that makes sense it seems you can be in a vicious cycle. We've just started b12 Injections too ,looked at CFS/ME doctor Sarah Myhill and she advises for anyone with fatigue issues to have b12 injections.Shes only had one so early days.shes going to have 2 a week for a month.Apparently b12 is low in spinal fluid of people with CFS and homocysteine is high and high homeocystein can cause headaches and pain.So if you increase your b12 levels you can lower Homeocystein.So will see if this helps Also b12 helps immune system . It's so hard as she's trying to study for an Access course ,but is too tired to study,so trying anything which might help.

[Cat00 in reply to caroash]

Yes I took 6 years to do a 4 year course at uni bc I kept getting too ill. I was 5 and half stone when I graduated. Ive never been offered b12 injections but I assume someone checked my b12 levels at some point, I hope at least!

[caroash in reply to Cat00]

Well done you for graduating,I know how difficult it is.I went on the pernicious anaemia site and they have loads of info on b12 levels, apparently for good health they're supposed to be in upper two thirds of ref range around 600 ,but GPs say fine if between 200-900 I think it is. I'll try and find some links for b12 but looknon health unlocked pernicious anaemia,I ordered my own from Germany as GPS won't do them unless below certain range.Its common for people with M.E CFS and auto immune conditions to be low and blood tests aren't reliable ,I think on their they talk if b12 saliva and urine tests being more accurate for b12. . Fatigue is a big sign apparently that body is lowx

[Cat00 in reply to caroash]

Oh is that what Pernicious Anemia is a B12 deficiency! I'd heard of it but didn't know what it was. My friend used to have B12 injections she said similar stuff to you.

I hope your daughter manages her degree. I did 2 years and then dropped out and took a year off and then went back, did 2 years and then took and extra year to complete the final year. Unfortunately I've never been able to work so it was kind of pointless in the end but I was determined to finish at least.

[caroash in reply to Cat00]

Well you obviously have great determination to achieve what you have ,you should be really proud of yourself. How long have you had Fibromyalgia? My daughter became ill at 15 after Epstein Barr Virus.Could write a book of all the things we've tried.Have you tried Hyperbaric Oxygen Therapy,it's very good for fibromyalgia and has really helped my daughter , especially with her immune system.

[Cat00 in reply to caroash]

Thank you for saying that, that's very kind.

I was always sensitive and had my first migraine when I was 5, but things really kicked off when I was 12. My parents moved to Saudi Arabia and I was sent to boarding school. I didn't cope at all, I was a chronic insomniac and in a dormitory with 26 beds full of noisey girls. I gradually got more and more ill and was frequently punished for basically being unable to cope and was seen as lazy and rebellious. I was only diagnosed with fibro in my twenties and it was only then I got treatment for my, by then, chronic migraines. This was when my parents moved back to England, I didn't have enough fight in me to deal with all the crap doctors on my own. That's why I know you sound like a great mother, to have someone fighting for you is so important.

I am SO interested in the hyperbaric therapy, I scuba dive so it's like a mini hyperbaric treatment I guess. I only get to do it every couple of years bc of money and my health, I would dive all the time if I could! Where did you get the treatment? I presume it's expensive, I know some people with MS qualify for it on the NHS, but I doubt I would.

[caroash in reply to Cat00]

It sounds like you've had a really difficult time,that must have been so difficult feeling so ill at boarding school with little sympathy or support.When you suffer as a child it's common that they label you as either attention seeking or a hypochondriac. They don't do this as much with adults,I don't know why they think a child would lie. Had problems with doctors too even though had a diagnosis by a paediatrician. Was told had tension headaches for over 2 years,until changed GP. I found an MS centre in Manchester that let some other people use it when they were less busy non a Wed evening and was only £17.00. We also went to a paediatric one in Morecambe only £10.00. You do need a course for real benefit say 4-5 a week for a couple of weeks. We met a woman at the Morecambe one who came from Norway with her son who was born with brain damage,they came every year for 2 weeks and before he had it he couldn't pick up a pen or pencil,but after 2 weeks he started to draw and paint. It really helps to alkalise the body and works on a cellular level. We go to a private one now its£36.00 Google HBOT in your area there are quite a few in this country and some paediatric centres will let you use them.

[caroash in reply to caroash]

The diving sounds fun would love to do that😍

[Cat00 in reply to caroash]

Diving one of the only things that really make me glad to be alive tbh! I have to lie through my teeth to do it half the time and pretend to be well or they won't let you do it.

I just looked up HBOT near me no idea so many people have them. I don't have that kind of money unfortunately. We're taking out another mortgage to get an extension which will more less clean us out. I'm paying an osteopath, only my second session, but that costs £50 and I don't earn any money....still in the future it might be worth revisiting it. Ironically we put money aside each week to save up for diving trips which is another reason I couldnt afford it, still im lucky my husband earns money bc if it wasnt for him id never get to go!

[caroash in reply to Cat00]

Yes it is an expense, especially when you need a few together to start with, we're at the stage where have one every month or so. They will give concessions for health conditions and some football clubs let other people use theirs.Its great you have a passion for diving though, having something to work towards is really important. You sound like you have a really positive attitude to life despite your health struggles.Money does seem to limit us , especially when you have a health condition that can't really be treated by mainstream medicine.Its a shame oxygen therapy and other complimentary therapies can't be funded.Maybe with long Covid being a problem now they'll take more notice of other post viral or auto immune illnesses. I hope your health improves ,you deserve all that you hope for x

[Cat00 in reply to caroash]

I have lots of good things in my life but not having a career is the thing I mourn for the most, I so wish I could earn money!! In part so I could pay for some complimentary therapies.

But the doctors told me I shouldn't have kids and we waited much longer than most. We were hoping I might get better but as the years went on I just got worse, so in the end I had my first child at 38 and my 2nd at 41. It is hard being disabled and having lively young children but I have no regrets. And I just passed my grade 6th kung fu last night so you can do things with chronic illness, family is so important for us lot.

[caroash in reply to Cat00]

Ahh that's wonderful you've got children,you'll never be lonely and having 2 means they can entertain each other That must be very difficult not being able to work Bringing up children is a full time job in itself, especially with a disability. Well done for passing the Kung Fu, that's amazing . . I've always thought complimentary therapies should be subsidised for people with Chronic illnesses mI do reflexology and have found it helps people with chronic conditions. as well as massage Do you take Magnesium Magnesium bbiglycinate is very good for Fibromyalgia. Aldo I have a mix of camomile, lavender and marjoram for muscle pain so soothing.x

[Cat00 in reply to caroash]

Yes who would have thought id have to homeschool them for a year!!

I haven't tried magnesium, although it's supposed to be good for migraines too, because every supplement I take seems to upset my bladder. I have Bladder Pain Syndrome or Interstitial Cystitus depending on what name you prefer and I haven't been able to tolerate any previously recommended supplements. I also have IBS and the same thing seems happen.

[caroash in reply to Cat00]

With magnesium you need to start with just one a day then build up.I get Magnesium Bbiglycinate from Nutri they are very good quality.You may be okay with them.Tbey really alkalise the blood and so good for pain.Just In process if going from 2 a day to 3.

[caroash in reply to caroash]

These are the ones

[caroash in reply to Cat00]

Or their may be a soluble form that won't upset your system.At Nutri they have nutritionists who can advise.as they have magnesium in the form of melts too.

[Cat00 in reply to caroash]

I'll look it up, I'm more likely to take it in pill form, there is something about soluble stuff that makes me queasy!

[caroash in reply to Cat00]

Also their is a woman called Brandon Bays ,she healed herself from cancer and wrote a book called The journey. She does a 21 day healing programme that is now free to do on You Tube ,it's about 15 minutes a day,such an amazing woman.

[Cat00 in reply to caroash]

My husband had cancer when he was 30 so we've been on that journey to!

[Francesca21 in reply to caroash]

Where do u live? I believe in usa the get cgrp inhibitors on insurance , in ireland its being trialled so its free on nhs. Im in england and had to pay. £300 per one injection a month and u have toHave 3. Didnt help me at all. Neuther has botox at a cost of 1 k

For 31 injections. But best of luck does help

Some people.

[caroash in reply to Francesca21]

Hi I live in the UK North West,is it £300 to have it privately or on NHS? Also does the National Migraine Trust give it people.Ive just got a homeopathic be remedy called Bella Donna to try her on that.Its worth a try.Neurologust says he's reluctant to try anything else, partly by due to her not tolerating drugs well.

[Francesca21 in reply to caroash]

Its £300 to have done privately throu neurologist he said not avail on nhsU must agree to have 3 injections. Before hel rule it out as not working. They offered me a deal of 224£ per injection if id agree to 3.

It can have some nasty effects but for me it was as if id been injected with water. A home care delivery company deliver it to your house. U have to inject yourself or get a friend to do it.

I then moved on to 31 botox injections,

At £200’to be consented, £270 for him to administer the injections and £420 to the nuffield hospital for the drug. That hasnt touched it either. Next lot is 30.4.21

Cefaly machine works well for lot of people. That is £363 and u get £280 back if after 60 days you feel it isnt for you. However , the first 3 weeks of using that is very torturous but you do get used to it. Good luck.

[caroash in reply to Francesca21]

Sorry it didn't work for you,it's so hard isn't it trying to get relief from this horrible pain.

[Francesca21 in reply to caroash]

How old is your daughter ? My next line of enquiry is to ask for an endocrinologist referral. Hormones.

Have cut out booze sugar and now dairy. Starting keto diet monday.

Asking because my acute episodic migraines wer rife as very young woman and menopausal woman.

Am now 59 , and have this permanent chronic one.tingling pins and needles in face indicating the trigeminal nerve is unhappy. Feels like il never be pain free again. But , so many people are worse than I am. We must all keep searching for what works for us.

[caroash in reply to Francesca21]

Hi she's 19 nearly 20,she has good clean diet very little caffeine,no sugar or dairy.Just started doing b12 self injections so see if that helps.Maybe with the tingling sensations the b12 might help you.Yes I think hormones are definitely at play,but she does get them other times so not sure. I really think doctors are so clueless regarding chronic headaches/ sometimes a bit of caffeine does help ,but not too much.I saw a documentary about fasting too for chronic pain if all kinds,but needs to be done under supervision.

[caroash in reply to caroash]

Looked into try hormone balancing naturally with Agnus Castus adaptogenic herb. She was tried on the pill once ,but made them worse.She ran out of the Pharmepa restore fish oils and they got worse,so these do help quite a bit

[caroash in reply to Francesca21]

It could be drop in Oestrogens in Menapause.I don't suffer with migraines,but a friend does and hers were better when on bioidentical hormones,I'm on them Oestrogel with utogesterone.

[caroash in reply to Francesca21]

Hi have you seen my new post reg Belladonna.its really helping a lot.Check out the headache homeopathy chart I put after the post.It might be another remedy that helps you.Its important to get the right one.

[Chleo11]

Hi Caroash. I'm sorry to hear that your daughter is having chronic migraines at such a young age. Occipital injections seem to be a very complex issue. Some people with obvious occipital pain caused or not by migraines, have had no relief with them, which from an anatomical point of view doesn't make any sense. I've had no relief with them at all (it felt like it was water only being injected, not even any numbness afterwards) and because of this, they refuse to try again. I've had a private consultant telling me that if the injections didn't work it is most likely because they were not properly injected, because I should have felt at least some effect from the anesthesic they mix with the product.

Maybe have a look in the past posts and threads and you may find more answers.

All the best to you and your daughter.

[caroash in reply to Chleo11]

Hi thanks for replying,I'm sorry they didn't work for you.I think the first one she had worked for a few weeks,but then second one not so good.Just read about magnesium in higher doses so going to try that as only on 300mg per day.Shes just had first b12 injection too as this may be something that helps .She has CFS and the b12 can help with energy and pain generally. She did feel numb for a few hours after nerve block,but I think the first doctor was very skilled at getting the right points,where as the second time had different doctor that struggled with it.Shes going to try one more with steroid and hopefully will be first doctor again.🤞

[Poppycat1234]

I've suffered with chronic migraines for years and last year was offered a nerve block with steroid but unfortunately didnt get any relief from it. My experience was similar to Chloe11's, as I didn't even feel numb immediately after it so I wonder if it was administered correctly. If your daughter did get some relief from just the anaesthetic nerve block then it may well be worth trying one with steroid as they are meant to have longer lasting results.

I've just started Candesartan myself but not had any relief yet from it but it's still early days.

Hope you and your daughter find something that works.

[caroash in reply to Poppycat1234]

Hi sorry the nerve block didn't work for you,it does seem like anaesthetic which is so temporary and I imagine will wear off faster on some people. My daughter was put on 8mg by neurologist,but GP said it's usually a dose of 16 mg so upped it to that. It took about 3 weeks to work,but she had to have a blood test after a week on it to check for potassium levels. I hope it helps it did help my daughter but after 7 months I think her body has got used to it and it's stopped working so well.

[Poppycat1234 in reply to caroash]

Thanks for the info. Yes my GP put me straight on the 16mg, but have only been on it a week so far and they did also mention having a blood test soon. I'm concerned about side effects so Candesartan seemed worth trying as did the nerve blocks. Wishing you the best.

[babs1234]

I had nerve block injections. Apart from the day I had it where my head was numb ( yeyyy no pain). It don’t last yet the woman in the waiting room with me swore by them

[caroash in reply to babs1234]

It seems people are having varied experiences with this.The acupuncturist we've been to doesn't agree with them. I suppose it's not getting to the root of the problem and us a very temporary fix.