occipital neuralgia

2010, started having horrific migraines every 3 months. Previously happened once a year. Hospital everytime. They were stroke effect migraine-not loss of limb movement, but rather aphasia of speech, and couldn’t understand even what the word ‘the’ in the newspaper meant. That was my migraine aura equivalent. Then the nausea, then horrific one sided pain so intense. Took 3-4 days to recover after hospital at home. Once I discovered the miraculous triptans-sumitriptan, zolmitriptan, especially nasal spray, I was on the road to getting them under control. I eliminated every trigger-got 10 hours sleep a night which helped them, stopped work, stopped early mornings, stopped tube commutes. Had to split my meals into 10 tiny toddler dishes a day. My gp insisted on signing me off. I was stubbornly continuing to work, as I didn’t want to go on benefits and have like no money. These were replaced with occipital neuralgia. It came on suddenly. Couldn’t put my head on a pillow. So basically can’t sleep. Stabbing pains in the occipitals, a sort of electric pulse in the tender spot where the head and neck meet in the centre. The pain radiates over the head, often including teeth pain. Extreme light and noise intolerance. Profuse, sweating. Nausea. Continuous. If left to get to max threshold, it radiates down my arms,rendering my right hand unusable for typing/writing. The worst thing is I have the rare type of occipital neuralgia-continual 24-7. I’ve had a private pain consultant, and an nhs hospital one. I’m currently on the best meds I’ve ever had, and I don’t think the medications can be improved, so Tapentadol is my main pain killer up to 12 x 50mg tablets a day, pregabalin to calm the nervous system, dosulepin for sleep, metaproclamide for pain and nausea, valium, and I finish off that cocktail with 1gram of soluble paracetamol. I need that every 4 hours.I was tried on oromorph but it stopped working. I really think tapentadol is the best pain killer in existence. Its designed for long term use so you don’t build tolerance. There’s no point taking morphine, hydrocodone e.ct. I’ve had one suicide attempt so far. All I can do is watch tv. I have no social life, Getting out to have a coffee is the best I can do, and that I can only do occasionally. The illness has isolated me. I have no one to confide in. After years of this, you realise that you know longer relate to anyone, and they don’t relate to you. I think occipital neuralgia people need other occipital neuralgia friends instead. But its a rare disorder so that’s dificult. Mostly I can just watch tv that’s it. As soon as I exert myself, pain breaksthrough the medication. Then I’m stuck for 3 hours until the next dose. Had unsuccessful nerve blocks, but they didn’t do the greater occipital, only the lesser ones. I don’t know why. I want all the occipitals, greater, lesser and third blocked. And I’m gonna ask for pulsed radiofrequency recommended by my private pain consultant, but I will do on nhs, because I have no more money for private, all used up. I had to defer university as couldn’t study or get to classes. It’s been years like this. I’m now thirty. Half of my 20s has been written off. I had to end a relationship because I didn’t have the energy to put into it and I was just consumed by the pain and all the neurological package of occipital neuralgia. So it seems migraines can turn into O.N. Similar pathways. Anyone else had migraines then O.N? The problem I have is because its continual pain, and coz I can’t sleep as can’t touch my head on anything (I only sleep when I’m knocked out due to exhaustion and sleep in a wierd position in centre of bed on stomach with head on duvet, and head closer to foot of bed than where the pillows are. I do dread bed time. Actually I’ve developed a nocturnal sleep pattern like crocodiles and red pandas, sleeping during day from 6am-9am, then waking up after sunset. Sometimes I don’t see the sun for weeks. And only see the night. I go months without speaking to a single human being. I’m amazed I haven’t gone mad. Im ironically often too sick to make hospital appointments and barely manage my 2 weekly gp appointments. I get them due to my suicide risk. I do want to die. It would be a mercy. Im just not very good at committing suicide apparently. It’s harder than it looks. 9g of paracetamol was not enough! Also I want to live. I want to leave the city, be in the sea surfing and swimming with dolphins and turtles. But this life is not humane. I see most O.N sufferers have the on and off version of it, rather than continual. Trigeminal has the same two types I’ve heard. How unlucky that I got this continual type. It’s thousand times worse than even my horrific migraines. I’m thankfor for these medications I’m on, and an awesome gp who gives me 1 hour appointments to go through everything physical and mental. If my tolerance stays the same to tapentadol and I keep my gp appointments and as long as I don’t run out of medicine and end up stuck at home unable to collect repeat prescriptions, then I might survive. I need to connect to other people with this, with the continual version, and severe. IF you have it, but you still able to work and have a life, well good for you, but I don’t want to connect with anyone like that, as I can’t relate, and they won’t relate to me. I can’t relate to anyone else. Also I have much to give in experience and empathy having had this for so long and developed advanced coping mechanisms.

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