Any other sufferers with Occipital Neuralgia?

[OccipitalPain]

2.5 years and counting and still waiting for a referral to a neurologist. I'm in so much pain it's unbelievable. My head. My eyes.

Has anybody else had this and did anything help you?

I'm on a low dose of amitriptyline but it isn't working anymore 😔

I’m an acupuncturist and have successfully treated it
alongside other neuralgias.

I don't suppose you're in London are you?

Yes, 2 years in

The only thing which has helped me are nerve block injections - they don’t last long (about 9 weeks each time) but have been such a help

Ice packs can take the edge off temporarily when the pain is at its worst

I’m not In London @OccipitalPain but I can recommend based on where you live - either let me know on here or drop me a message.

I've also had a nerve block injection for this. I've only had one and it was in January and it has worked amazingly. I know it may not last but it's been great for the past 6 months.

How did you go about getting them please? If I'm remembering correctly I was told I'd have to wait to see a neurologist and that won't happen anytime soon by the looks of it.

I have a GP appointment on Monday I'm going to plead my case for an urgent referral to a pain clinic if that's even possible.

This is so encouraging thank you!

How did you go about getting the nerve block?

Also what were your O.N symptoms if you don't mind me asking, did you get the eye pain too?

Thanks so much I'm going to PM you

I had to push and push for a referral to a neurologist.

Mine was caused by nerve damage after skin cancer surgery - had months of being told it’d settle down. I had to constantly push to be seen as the pain was unbearable and as were ttc I didn’t want to take the medication suggested

When my pain is at its worst, it radiates to my eye. I went to the opticians a couple of times just to be certain there was nothing more going on.

I'm really pleased you got that referral, it's excruciating isn't it? It permeates every aspect of my life. My eyes are throbbing today.

10mg amitriptyline worked for a v short while then I missed one dose and it stopped working. I later upped to 20 and that worked beautifully for a couple of weeks until, again, I forgot to take one blooming dose. It doesn't work at all now which is incredibly frustrating.

How long approx were you waiting to see your neurologist?

Around 15 months wait, then as the cancer had been right on a main nerve, and based on the pain I was getting we went straight to a diagnostic nerve block, where it was only anaesthetic in the injection to confirm it was the occipital nerve causing it.

North West based, so I see a Dr at Salford Royal - although never actually met the main consultant face to face due to covid.

What are your triggers? I found certain things really made the pain worse, brushing my hair really triggered it, and tying up my hair was a no go, so had it cut a little shorter and it helped a lot. A fan / air con / strong wind hitting that side of my head is another huge trigger, but so is wearing a hat - so had to try and avoid certain situations to keep the pain at bay.

I got a cervical neck pillow too, which keeps my head in line with my neck when sleeping - another big help as having my head raised was painful.

Its bloody awful, and as you don’t look in pain people just don’t understand it which I find really frustrating.

Can you recommend anyone in Northern Ireland please?

You poor woman, what an ordeal you've gone through. How are you now? Doing much better I hope.

The only trigger I've been able to identify for certain is stress. If I'm having a stressful day / week then I can bet my house on it that I'll be in agony the next day / few days.

Stress aside every day is a waiting game to see whether the pain starts or not. It has been a consistent 5 days now. Pain free for an hour or so in the morning then it ramps up through the day.

Before I started on the amitriptyline I didn't have any pain free days for about 12 months. I would have flare ups where it worsened but there was always a baseline pain there in the background.

15 months wait oh wow that Is quite sobering 😔

I saw a thread on AIBU the other day from a lady who presented at A&E with a crippling headache which turned out to be hypotension and a nerve issue and she was given injections in the head. I wonder if that was a nerve block. I might go back and find the thread. I would have no problem sitting in A&E all night if it meant I could get some relief.

@OccipitalPain yeah I had eye pain. The treatment was through private healthcare I'm afraid. Through work I get private GP appointments as well, and they referred me to the neurologist who did the nerve block. He also works for the NHS and does nerve blocks there, but I my regular GP wasn't very helpful so when I changed jobs I went private.

Ahhh thanks. I'm really glad you could access the treetment you needed. I can't afford private health care in general but after some googling I did see that you can pay for a nerve block privately to the tune of £350 so I'm now considering taking out a small loan... Will see what my GP says on Monday. Fingers crossed.

I've been doing some targeted stretches I found online for ON and it just makes the pain worse, surely that's not right?

I don’t know if it’s the same kind but my dad had trigeminal neuralgia and it was horrendous. For years it was manageable with just the usual electric shocks down the side of his face. But his medication for it stopped working and he was put on stronger and stronger medication.

Eventually he reached a point where he could barely eat or speak for the pain in his face, but could also barely walk and lost all mobility as a result of the strong medication he was on. The NHS course of treatment said he had to go through each stage of the medication before he was eligible for surgery. His lack of mobility had a profound effect on him and my step mum’s quality of life - he was sleeping downstairs in a chair for a year and constantly collapsing trying to get to the commode they set up in the porch. My step mum could barely physically support him and was terrified every time he needed to get up. Even with a walker, his legs would give way and he’d fall.

Finally it was agreed he could have an MRI to determine the surgery needed - Botox injections or surgery round the back of his ear where they would insert a tefal coated material to block the trigeminal nerve. The surgery was a success and he was immediately pain free but it took several weeks to wean him off the extremely strong medication. His mobility returned slowly but it was a good four months before he was able to walk up the stairs and shower by himself - the first time in over 18 months.

It was a terrible ordeal for them both but they kept it from me. They’re in the north and I’m in London. I finally clocked what was happening and went up there for a week and helped my step mum access adult social care to help her - we were both worried she would be injured trying to help my dad - and keep pestering for the surgery. He’s like a completely new person now after being so unwell and I really feel for anyone with similar.

I don’t know if this helps at all but thought I would share!

Goodness me your poor dad (and step mum)

I've read about trigeminal neuralgia when researching occipital neuralgia, they call T.N the suicide disease apparently and with good reason as It sounds horrendous. It's heartbreaking that your dad had to wait so long for the treatment he needed.

I don't have any issues with my mobility thankfully and your dear dad sounds so much worse than I am, so I'm not actually sure how similar the two neuralgias are but I'm definitely not that bad.

One similarly though is how the medication which previously worked has just stopped working.

I've had botox in my massater muscles (jaw) for another issue I have and asked the practitioner if they could do my occipital area and she said it would be pointless as it wouldn't work there. V interested to read that it was a consideration for your dad.

I'm v pleased the op was a success for him and I hope he never has to deal with that awful bloody thing again.

I have TN and paid to see a neurologist privately for an initial diagnosis. I only went that route as he was the same dr who I would then see on the NHS and I was able to be then added on 5o his NHS clinic without the 6 month wait.

Amitriptyline is not the only drug worth trying for neuralgias so maybe talk to your gp about trying another. I had horrible side effects and limited pain relief from carbamazepine but really great results with gabapentin.

@OccipitalPain yeah it was really bad but he was stubborn and didn’t want me to know how bad it was. It was wholly the medication that caused his lack of mobility - but he was also in pain, so the medication causing the lack of mobility wasn’t even working. Very frustrating. I truly hope it is not the same kind of neuralgia- it’s a dreadful thing to have and I’m really sorry you’re suffering with it. I hope you find answers and a solution soon.

@DrMadelineMaxwell funny isn’t it, how people react differently. I’m pretty sure it was Gabapentin that my dad was on that caused his complete lack of mobility, and took months to come back after he was weaned off them.

I saw my GP at lunch time and he's done me a referral, surprisingly he was also able to book my appointment there and then so I'm seeing a neurologist in October. Much quicker than I anticipated.

In the mean time they've upped my prescription for noritryptiline and I'm to take 30mg for a week and see how I get on then likely increase again if no improvement.

I bought some cocodomol OTC on my way back to get me through today as its flaring badly hopefully it'll take the edge off.

Not sure if it’s the same treatment but I’ve been put on carbamazepine (sometimes called tegretol) for trigeminal neuralgia, I’m currently waiting for an MRI after my initial neurologist appt so that might be a drug to ask your gp about if the increased amitriptyline doesn’t work. Cocodamol did nothing for me, neither does paracetamol or ibuprofen. Good luck

The cocodomol isn't doing anything for me either unfortunately, aside making me feel slightly spaced out 🙄

Ibuprofen used to help ever so slightly a couple of years ago and I'd take lots of it but does nothing now, and I can't take it anymore anyway as it gave me gastritis

I'll definitely make a note of the carbamazepine and I'll mention it to my GP if the increased dose of nori doesn't help, thank you. How is the carbamazepine going for you? Is your pain reduced? Any side effects?

Cocodamol wont work on nerve pain. In fact, normal pain killers not working is a way to identify it as nerve pain. It can make you fuzzy and care a little less about the pain you are in but it wont dull the actual pain.

Carbamazepine was a disaster for me. So many side effects inc physically being unable to stay awake after taking a dose...no matter where I was or what I was doing. Nearly fell asleep at the wheel while driving my children home. And it gave me huge twitches, inc in my hands which meant writing and texting were impossible. Several cups of coffee spilt all over me. And it made me let go of the wheel when driving repeatedly too. So I had to go back to my gp and they switched my drug. I also had huge issues with memory and word finding on it.

My neurologist would have preferred I stayed on it longer to see if the side effects diminished but it was too limiting on my daily life. Other people cope on it just find and can't tolerate the one I've been on for 5 years with v little side effects. It is a strange thing.

If was the side effects of the drugs and getting onto the right ones, and finally having pain relief that kept me off work for 3 months.

OP theres a good book called Striking Back about facial pain..I cant recall whether ON is a chapter in there but can look when i get home from holiday.

It works, but the side effects make me feel pretty miserable to be honest. They make me very forgetful, not just forgetting things I was going to do or needed to get but words. Sometimes I know what the words are but I just can’t say them or grab them from my brain. And confusion, as an example, I’ll tell the kids the cream is on the side but really I mean the floor. Or put the milk in the oven when I mean in the fridge. Or finish your lunch when I mean breakfast. Etc etc. It makes me feel like an old demented woman.
But we’ve found a dose which manages the pain. I started on it last summer, got to a dose that managed the pain and everything was great. Then I decided I wanted to try reducing/coming off it so I weaned off very, slowly, reducing as I went. All was well, but then the pain came back, and unfortunately it now need a slightly higher dose to manage it. The neurologist has told me to stay on it, which obviously I was going to do because when I got pain it was completely debilitating. I’d just lie there on the sofa, almost like I was hoping if i didn’t move it couldn’t find me. So I put up with the side effects because I can’t live with the pain.
I think one of the reasons I hate the side effects so much is I was always a highly organised person, rarely forgot a thing, and now I need alarms to take medication, and sometimes even with that I can’t remember if I took it or not. I always set an alarm to collect the children from school, just in case. I’m actually hoping that when I get my MRI they find something operable and then I can come off them. People think my face being all wonky is the worst part (I developed it after I got Bell’s palsy and my face hasn’t recovered properly) but it isn’t, it the pain and this medication.