I have chronic migraine,lupus,hughes syndrome,ray... - LUPUS UK

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I have chronic migraine,lupus,hughes syndrome,raynauds,sjogrens etc,and I have just been diagnosed witn occipitial neuralgia

charlie007 profile image
10 Replies

I am using lignocaine patches.Does anyone know, do you use these patches long term, or has anyone had an operation to sort out the compressed nerve? My GP is away at the moment and would just like advise!

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charlie007
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misty14 profile image
misty14

Hi Mary oSullivan

I use the Lidocaine patches, have done for a year now. I ought to ask about long- term use but don't get side effects. Your problem sounds a very painful one! Hope I've helped?x

charlie007 profile image
charlie007 in reply to misty14

Hi misty14

Thanks for your reply,do you have any problems with the patches staying on?I

misty14 profile image
misty14 in reply to charlie007

Hi MaryOSullivan

I can have problems with the patches staying on but realised you can replace them within the 12 hour slot you use them in. I'm sorry your compressed nerve is in your neck, must cause migraines! and be excruciatingly painful! Hope that helps.x

farmerfester profile image
farmerfester

Hi Mary O'Sullivan

Where is your compressed nerve I have nerve damage and compression in my spine take nerve blocker witch helps a bit going to pain clinic next month reumi tells me patches are one off the options

charlie007 profile image
charlie007 in reply to farmerfester

Hi farmerfester

My compressed nerve is in my neck,at times the pain can be so severe that I begin to think it must be something more serious,but I have been reassured it's not,this has taken years to diagnose.I have had the nerve block also and it has helped.I feel this triggers my migraine and vomiting.Thanks for your reply

Hi Mary, just googled occipitial neuralgia. Sorry I can't advise on patch, but I was wondering if you were first told that vasculitus was the cause of your eye pain. I have this eye pain at the moment, and I do suffer with it regularly. It is very painful at the moment as it's now affecting my teeth. Years ago I went to A&E eye hospital, but they only diagnosed, inflammation of the blood vessels.( it was a Dermo who said vasculitus). I usually up the steroids when this strikes, but am wondering if I can do more. I do have eye drops as I have sjorgrens, but as you know, this pain is so debilitating. I have arthritis in my neck, but cannot say that I have pain there at the same time as my eyes. My eyesight is awful now and I wear glasses that react to bright light. I thought this was my cure as I've not had an attack since October, but it's back with a vengeance. Just wondered if you can advise. Take care.

Purpletop profile image
Purpletop in reply to

If your eye pain responds to steroids then it is more likely to be vasculitis/autoimmune inflammation. Occipital neuralgia doesn't tend to be responsive to much.

charlie007 profile image
charlie007 in reply to

Hi 6161,I was diagosed with vasculitis years ago,its so complex,but I would agree with purpletop.I just wish ed for a quick fix ,but I should know by now it does not exist.I hope you get sorted too!

in reply to charlie007

Thanks for getting back to me, I wish you well x

Thanks Ptop, didn't want another ailment on my list. X

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