Positive gone Negative

I am so excited to be able to discuss my pain and problems with this mentally debilitating condition. I hurt constantly. The only relief I have is when the pain meds kick in and when I am sleeping. It’s ironic really. For the first few years, the pain in my ears woke me up if I was lying on them. Now, when I am asleep, I have no pain. Sometimes the pain is so bad that my body wants to fall asleep immediately. It’s like I pass out to keep from feeling the pain. My pain is mostly in both ears. Sometimes I have pain in my teeth and jaw. But it is mostly deep ear pain. I always describe one type of pain as if my brain is being pulled out of my left ear. I don’t know why but both ears hurt and sometimes they trade off. The funny thing about it is that nothing is consistent. I have learned that I cannot eat crunchy food. It definitely triggers sharper pains. I always hurt but the sharp pains come and go depending on the pain medicine timing. I read that one of you said you take a pain pill before you eat. I do the same. I know it’s coming on stronger when I’m done eating. Unfortunately, I can’t remember the name of the shot that I am scheduled to have next week. It is a mixture of a cortisone and pain medication. I am scared to have the shot. I do not like the idea of having to have my head under an x-ray every few months either. I was almost to the point of getting a second opinion but it seems as though we all are in the same boat. :frowning: I pray that God will take this pain away. My husband is my rock and without my family, I don’t know if I could handle this. I continue to work. If I didn’t I would be a basket-case. I know that I have to maintain @ work so, I enjoy being there. If any of you have ever had the shot, please give me some feedback. Thanks for listening folks!

Hey Denise,

Firstly welcome to the board, I'm really glad that you've found us, this is a hellish disease and being able to reach out to others in the same boat counts for so much.

I'm sorry you're suffering with it so much, but hopefully the nerve block will help, I asked about it and my pain specialist said she wouldn't even consider doing it, nor did she know of anyone who would here, so I really can't offer any advice from personal experience of it, but I have the lightening in both ears too, and I work full time so I understand exactly where you're comming from.

Theres folks on here who;ve had all manner of treatments, and variations on surgery so I'm hoping that someone will be able to answer your questions a little better than I can.

Much love and will hopefully speak to you soon.

Gracie x x x

Thanks Gracie. I am having the injection on the 30th and I am scared as hell. My neurologist diagnosed me with GPN but I am having an Occipital Nerve block done, by the pain management specialist she referred me to. It seems interesing because I do tend to have the headaches in the back of my head without the Neurontin that I take daily. I am supposed to be taking 900mg 3x a day. It doesn’t help with the stabbing ear pain. I usually take 900mg 2x a day. If 3x a day doesn’t help, why take so much medication. I am so happy to have you all to share this with. May God help us all.

God help us all is right Denise, it's a really difficult thing to contend with. So just to clarify here the shots you're having are purely for the ON, or are you having some for GPN too? I'm sorry the neurontin isn#t helping, I was on it for a while and for me, ironically enough it was giving me ATN/AFP symptoms which fairly muddied my diagnosis, not to mention that coming off it was the toughest thing I've ever done, I was totally suicidal, NOT a drug for me to ever try again, but I know it works well for some folk.

I'm glad you've found us too, and hope that you'll find the board helpful.xxx