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Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)

Just Diagnosed With ON

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Unread 06-14-2009, 10:13 PM   #1
kalimae7371
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I was just diagnosed with ON and had my first nerve block on Wednesday (6/10/09).

My history is cushings disease, pituitary surgery with 4 CSF leaks. Then a bilateral adrenalectomy which left me with addison's disease.

Since all of this, which took place in 2006, I have been left with dibalitating headaches that up until now the neurologist had diagnosed as migraines. Finally after describing to him the shocking sensations I have been experiencing on the back left side of my head he figured out it was ON. He was good enough to have me come straight in for the nerve block shot.

I must say that it did not hurt at all but then again I was was in so much pain that he could have given it to me in my eye and I wouldn't have cared . . . . . I just wanted to stop being shocked!!

Since having the block I have only experienced the shock a few times and nothing like the severity it was before.

Also the numbness of the block had worn off within a few hours after having it done. I wondered if that was normal?

Guess that's about it for me. Now we'll see how long it works for. Hopefully it will work forever . . . . Isn't that what we all want?

Amy
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Unread 06-16-2009, 02:17 PM   #2
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I forgot to mention in the above that I have pretty bad osteoarthritis in my spine - complete spine: cervical, thoracic, & lumbar. Just wondering if that might be the cause of my ON?

Also since having the nerve block last Wednesday (one week ago) I'm now having pain behind my left eye. Not the shocking type pain that I was having in the back left side of my head but just wondering if this is related?

I have an appointment with a neurological opthlamologist (sp?) next week. Do they deal with ON?

Sorry for all the questions. I just can't find a lot about this on the net . . . . mostly I can't seem to find others that are dealing with this.

Thanks
Amy
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Unread 06-16-2009, 07:37 PM   #3
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Amy,

I get the eye pain behind the eye and I've read that ON can cause that. Bear in mind that I'm not a doctor, etc.... I responded to you on the other forum as well. In my case, my pain doctor felt that issues with my cervicals were causing the neck muscles to spasm and inflaming the occipital nerves so it seems like any type of spine issues can cause or influence it. I don't know anything about neuro opthamologists so I can't help you there. Hopefully some of the others will pop in and share their thoughts and knowledge.

As for the blocks, I've stayed numb through the day, but I imagine it depends on what sort of anesthetic the doctor uses. My doctor also injected steroids and it took awhile for them to kick in. I had the best relief after having two blocks with added steroids. I think they were two or three weeks apart, if memory serves me right.

Ellena
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Unread 06-16-2009, 10:37 PM   #4
kalimae7371
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Thank you so much for responding!! I've learned that the best info comes from others who have had the experience. When dealing with cushings I found a VERY good forum and depended on it a LOT for comfort, advice, etc. I understand that we are not doctors but just patients who sometimes know more than the docs do just from our experiences. LOL

Thanks again for sharing with me, both here and on the other forum!

I'll post about what the opto nueor says after my appt. Who knows, maybe she will have some advice.

The shot my neurologist gave me did have some steroid in it. I asked because that is important to me since my history is cushings disease. Now that I am "cured" of the cushings I am always weary of getting any type of injection that contains steroids. He assured me that it contained a minimal amount. I was hurting so bad that I honestly didn't care at that point. Just wanted/needed some relief!!

Also, I think I remember him saying that he could only give me these shots ever 6 months? ? ? Maybe I'm remembering wrong. My husband was there with me and he said something about a different type of shot ? ? Again, I was ready for some relief and anxious about the shot so probably missed something important.

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Amy
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Unread 06-17-2009, 07:15 AM   #5
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Amy,

I'm always glad to share what I know and don't know. I had my shots two to three weeks apart and the relief lasted for better than a month if I'm remembering correctly. My doctor did say that it was a minimal amount of steroids but he also tracks all my injections and the amounts so he knows when he can repeat them. He has been doing a lot of work on me and he is a blessing. I'd be up the creek without him.

I've been in a really bad flare with this for the last week and if it keeps up, I may need to schedule another appointment sooner than expected. I'll be curious to hear what the neuro opthamologist has to say.

Take care and low pain wishes
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