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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Comments

View Comments (5)
  • chrissybrenner
    1 year ago

    Hi. I am glad to finally find someone who can relate. My ON started suddenly about three years ago. I have had migraine for nearly thirty years, and this is much worse. It is a non stop never ending pain and soreness in my head. Even wearing my eyeglasses hurt. I am contemplating eye surgery if I can afford it. I have a new neurologist who is sending me to a pain specialist for consult for ON block. I am terrified of needles. Any info you would be willing to share on the treatments is greatly appreciated. At this point I would rather let them cut me open and kill the nerve than be awake for them to put more needles in me.

  • LAnzivino
    2 years ago

    Shaun, I have the same problem with the occipital nerve pain. I thought it was a migraine because that is what I had for years. But when my Imatrex did not seem to take the pain away like it always does I realized this must be something else. Found out it was the occipital nerve stemming from my neck. I went to a pain dr. and he said I needed a ablation of the nerve,it is not the same as a nerve block. I had the procedure done and it worked great. It takes weeks to kill the nerve but every day was better. I have had it done twice now in a year and a half. The best feeling in the world to get rid of that stabbing pain.So if you haven’t tried that I would consider trying to have that done.
    Hope you can find answers. Hope this was helpful.

  • shaundhumphreys author
    2 years ago

    Thankyou so much. This was very helpful. My next procedure was supposed to be pulsed radiofrequency to the occipital nerves. After your comment here I will push my GP who I see again on monday and then the hospital in september to give me ablation of the occipital nerves. I can push the case because I’ve had 3 suicide attempts in just 2 months. Valium, pregabalin and tapentadol plus a sleeping pill and dosulepin an trcyclic antidepressant are barely keeping me above suicidal level with regular breakthrough pain. My mental health consultant is speaking to my gp on monday to get me on some kind of morphine patch and stronger sleeping pills, as I had 5 days of zero sleep, went delirious and nearly stroked. I know I need my next treatment to work, because each suicide attempt is like practice, you get better at it. First time 8g of paracetamol next time 12 g, you know. I just hope I won’t have another 8 hour plus period of uncontrolled pain, which normally happens when I run out of one of the medications and can’t get to the pharmacy or gp as housebound with pain and light senstivity. I get the stabbing pain, plus a sort of pulse down the centre of the back of the head, where the head meets the neck, and that radiates down back to the arms so I can’t use my arms. The light senstivity is insane. Its like being a vampire. Im definitely pushing for ablation of the nerve now. I knew of this procedure, but did not have it in my mind to push it as next step. Thankyou, will take this advice. I take it ablation is burning the nerve destroying it completely?

  • Joanna Bodner moderator
    2 years ago

    Dear shaundhumphreys,
    Thank you greatly for your willingness to share your long painful journey living with occipital neuralgia. Please know you are not alone. We understand just how debilitating and isolating this condition is. We are so happy that you reached out with the hopes of connecting with others who may be experiencing the same. Support is imperative! If you’d like to, feel free to explore our forums section as well https://migraine.com/forums/.

    Additionally, while it sounds your GP is aware of your possible suicide risk, if you are ever in immediate need of support or considering harming yourself, NEVER hesitate to contact the National Suicide Prevention Lifeline 24/7 1-800-273-8255 and they also have live chat available as well – http://chat.suicidepreventionlifeline.org/GetHelp/LifelineChat.aspx. Lastly, here is an article which discusses creating a suicide safety plan.

    Please know we are always here for support and to lend an ear…reach out anytime! We love hearing from you.

    Wishing you a gentle day.
    Joanna (Migraine.com Team)

  • shaundhumphreys author
    2 years ago

    thankyou x

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