occipital neuralgia lightheadedness anyone?!

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I had bad head and neck pains and lightheaded/dizzy days for about 18 months. Would last a day or two then feel fine inbetween. Held down a super full time career and ran a home really well. Was succesfull etc. But since xmas when I had a major head ache/pain in the back lower part of one side of my head which started boxing day and went on and on I saw a neuro who thinks it is occipiral neuralgia. On gabapentin and awaiting some procedures in theatre to help (I hope!) Any one else have this out there?

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  • Posted

    I got exactly the same as what youve explained ive had it a year ive lost my job as i cant go out im 47 feeling 90 wish some1 would help first they said it was my ears then they told me it was my neck waited 9mths to see a neuro only to be told its my ears again now waiting to see an audiologist i feel for you its a hell of a thing .
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    • Posted

      I know ... it's awful. I am 49. Had to pay to see a neurologist privately as there was a 10 month wait on the NHS. It's taken 8 weeks to organise a CT scan having that in a couple of weeks as he thinks it might be neck problem aggravating the occipital nerve? Was being treated for migraines but nothing much helped. Feels like i ve been hit on the back of the head - dull ache pains on left side, tingling, throbbing pains sometimes, dizzy,unwell feeling generally. Makes me quite panicky too especially if I am out because I worry it will get worse. Been off work since jan - boss not happy but I am a primary school teacher and cant cope with 30 children in this condition! Have trouble driving as I feel so whoosy most of the time. The meds and pain killers space me out too.
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    • Posted

      I could have wrote that everything the same other than i was a carer for the elderly my life has fallen apart this past year im like a recluse i dont go out i dont drive ive paid to see a neuro and a homeopath and a healer and it hasnt helped at all they said it was my ears then they said it was my neck and now they are saying its my ears they havent got a clue .
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    • Posted

      Have you had a ct scan and are you on any meds that help at all? I wondered if it was my ear as I get ringing in my left ear but the gp thinks I get lightheaded rather than dizzy - there's a difference apparently. But who knows like the gp said he's not an expert either. I had 5 really good days week before last and was so happy as my head felt clearer then for no reason at all woke feeling awful again and it's been bad since. Tried everything - chiropractor, accupunture, massage, relaxation, changing my diet, dont drink any alcohol at all now etc. etc It's a nightmare. Feel sorry for my family who have to put up with it esp my son x
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    • Posted

      Yes i had 2 mri scans they showed nothing than general ware and tare in my neck i to have a 12 yr old daughter feel sorry for her to cos we have no quality of life at the mo i am taking nortriptilene and stemetil no good at all
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  • Posted

    I get bouts of occipital neuralgia and if it sets in I get a nerve block which is very effective. Since I stopped doing aknustrative work and spending hours on end at a computer, it has not been so frequent. I am also having treatment from a Cranio sacral physiotherapist and this has helped I think. Certainly neck muscles are much freer. But the Vestibular neuritis is causedby an inner ear virus I don't think the neuralgia and it are related. I am seeing my neuro ontologist again at the end of June and will ask her. I've had the occipital neuralgia for many years and never any dizziness or lightheadedness with it. Christine
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    • Posted

      Thanks for your reply. I think my neck muscle tension from working on the laptop for hours hasnt helped the occ neuralgia. I am awaiting nerve blocks so that should help. There are so many things that could be causing pain/dizziness in that area like migraines, vertigo, vestib neur etc - and it seems like these problems can be difficult to diagnose and treat. I find it frustrating that with the neuralgia I can feel okay one day and dreadful for no apparent reason the following day. It's so difficult to plan anything. Just want to feel "normal" again and get back to work! Lyn
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    • Posted

      Hi alum, I know what you mean about wanting to feel 'normal' again. My physio and neuro ontologist both Rolf me that this feeling of going 'backwards' as I call It after a few days of non lightheadedness is what happens as the brain compensates and builds new pathways. I now accept that. This past week have felt almost normal every day. Exception was after I did an aqua aerobic class in deep water and of course our balance is not at the same equilibrium in the water. Has settled overnight so all good. I am off to see the physio this morning for a review. BTW there are tests that my neuro ontogist does. All computer driven and she can tell that I list 80% of the balance neurons when I had the infection. Last test I had regained about 25%. End June when I go again hopefully more. Christine
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  • Posted

    I struggled at my job as a bank auditor, difficulty concentrating, annoyed with noise, ear and head pain, fatigued due to sleep deprivation, lost my friendly disposition and was generally grumpy and intolerant of anyone who aggravated me. That was four years ago, and eight mos. before I was finally diagnosed with occipital neuralgia. I have been on LTD ever since. I stopped all medication trials after 3 yrs, due to side effects and no real relief, nerve blocks after two trials, also with no relief. Dysport injections give me relief somewhat, but only in first week after shots. Right now I am just trying to get used to my new life of constant head pain - avoiding crowds and family and friend gatherings.
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    • Posted

      My wife has suffered the head pains on one side with associated ear pain as well as dizziness and occasional double vision for over a year, so bad at Xmas that she tried to overdose. Usual GP practice to eliminate cause was carried out, blood tests ecg, thyroid and finally a head scan - all negative. Just before Xmas I wrote a two pager   to senior GP in the practice, claiming that there had been a failure to diagnose as my wife was still in pain and no prognosis.We got an  appointment early in January and the senior GP diagnosed immediately Occipital Neuralgia and referred her to a pain consultant who has given her the injection which you mention. She has just had the second injection today and we expect the same effect as last time  - relief of all pain for 6 days returning albeit at a lower level. My research inform me that this injection is only diagnostic and confirms the problem as being the Occipital nerve and that longer term relief depends on Pulsated Radio Frequency which is not available in our local hospital but available in Bristol with Dr Krishna. We are going to ask our GP to refer my wife to Dr K. Hope this info is useful.
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  • Posted

    I think I’ve had the same condition as you for the past 4 months with endless doctors visits. It’s been driving me insane and I have lost all confidence. I’m now awaiting an MRI scan....I would be interested in how you have resolved your neck/nerve issues
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  • Posted

    Hoping Lyn and everyone is feeling better from this. I'm going through it myself sad

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