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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.)

Forum Newbie; Recently Diagnosed w/Occipital Neuralgia

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Unread 10-09-2012, 01:10 PM   #1
amw5
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Question Forum Newbie; Recently Diagnosed w/Occipital Neuralgia

Good Day All. I'm so glad I found this forum, and it feels good to actually be able to interact with folks that have the same condition as myself.

I was in a car accident January 2012. My (occipital neuralgia) symptoms started appearing May 2012. When no pain killers helped, I knew it was time to make an appointment with my neurologist. I was diagnosed with occipital neuralgia August 2012 (don't know how I dealt with it that long). I took gabapentin for a little over two months (HATED the side effects - just made me feel so strange / weird / unlike me). I received my first nerve block injections yesterday. I was so relieved the neurologist put a numbing agent into it, and I happily welcomed the immediate relief. Well, the immediate relief wore off about an hour ago. I certainly hope the cortisone agent kicks in soon. To have the pain gone for nearly 26 hours and reappear has taken me by terrible surprise.

How did the FIRST nerve block injections work out for you?

How long did it last for you?

How did the nerve block injections go after that (assuming you had more)?

I hope my relief comes soon.

Sigh...

Thanks in advance.
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Unread 10-09-2012, 08:49 PM   #2
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Anyone?

. . .
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Unread 10-10-2012, 02:18 PM   #3
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I've had migraines for many years and when they were at their worst, I had those injections or something very similar with very little good results. I know it isn't exactly the same thing and it isn't very encouraging...my apologies. Hopefully, someone will have something better to report for you.

I am seeing the neuro tomorrow...my symptoms suggest Trigeminal Neuralgia.

I sympathize/empathize greatly with you having just been dx'd with ON.

I dread the idea of possibly being prescribed Neurontin. Were/are you on a high dosage of this? What other meds were discussed?

Wishing you well...hang in there!!!!
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Unread 10-10-2012, 08:17 PM   #4
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Thanks for your reply.

I'm currently taking 200mg of gabapentin at bedtime. This is the only medication my neurologist and I have discussed so far.
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Unread 10-12-2012, 08:16 PM   #5
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I've had about 9 sets of these, with multiple injections each time.
The effects varied. The anaesthetic used in the process soon wears off.

I found that I had an average of about 6 weeks benefit, variable though it was, from the injections. Sometimes there was very little gain.

You really need to get to the cause of the problem, and then see what can be done.

My big breakthrough came when I was found to have very tight neck and back muscles, which were applying a lot of pulling to my neck and head, hence the headaches.

Massage gave instant relief, though not long lasting. Still, I had them regularly for over a year.

Then I started taking magnesium chloride, mixed with water, and that quickly cured me. Best thing I've ever done!

Several years later I am getting a constant dull neck ache, and a bit too much use of my arms results in pains over my neck, shoulders and arms. I believe it is DDD.

I'll be going back to my physio next week to get some neck exercises to help.

With your injections, it may take another try at different locations. They have to target the exact spot.

You could always try a physiotherapist in the meantime and see what can be done physically. Your lifestyle (read computers etc) may be a large factor.
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Unread 10-13-2012, 07:36 PM   #6
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Quote:
Originally Posted by amw5 View Post
Thanks for your reply.

I'm currently taking 200mg of gabapentin at bedtime. This is the only medication my neurologist and I have discussed so far.
I'm sorry to hear that you have this. I've had many shots and I still undergo them regularly. I get immediate relief from the numbing agents and then I sometimes get extended relief from the steroids, however the time varies. More importantly for me, it helps break up the cycle so that in time, my headaches are lessened for awhile. They gradually build back up to what they were previously and then I go for more shots. My pain doc has talked to me about going for an implanted stimulator but I'm not ready to go there, yet. I've left it open for future discussion. I'd rather see more stats from successful people for this condition as right now there isn't enough to satisfy me. Have your docs discussed the cause of this with you? Sorry to welcome you here, but there is alot of good info in the forums and more from those who post. EE
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Unread 10-14-2012, 08:56 PM   #7
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I had to stop taking gabapentin because it caused a rash. I was given Lyrica to take, and several hours after taking the first one, I realized it wasn't the medication for me. After only one dose, Lyrica had me feeling strange, weird and feeling so unlike myself. It makes me wonder how anyone can deal with taking it.

I thought the steroid was in the nerve block, but it was just the numbing agent. I hope to get the next nerve block (including the steroid this time) soon.

I wonder how people deal with neuralgia after so much time. I've been dealing this this pain since May (diagnosed in August). This is the worse thing I've ever experienced, and I'm not sure how much more I can take. It makes me feel as if my body is going to do something strange that I can't control.


Quote:
Originally Posted by EE03 View Post
I'm sorry to hear that you have this. I've had many shots and I still undergo them regularly. I get immediate relief from the numbing agents and then I sometimes get extended relief from the steroids, however the time varies. More importantly for me, it helps break up the cycle so that in time, my headaches are lessened for awhile. They gradually build back up to what they were previously and then I go for more shots. My pain doc has talked to me about going for an implanted stimulator but I'm not ready to go there, yet. I've left it open for future discussion. I'd rather see more stats from successful people for this condition as right now there isn't enough to satisfy me. Have your docs discussed the cause of this with you? Sorry to welcome you here, but there is alot of good info in the forums and more from those who post. EE
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Unread 10-17-2012, 11:42 PM   #8
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I've been feeling much better since I received two nerve blocks a few days ago (and also a new medication - amitriptyline 10mg at bedtime). I'm keeping my fingers crossed that this continues helping.

I've been learning a lot by reading the many threads on this forum. It's nice to be able to communicate with everyone here.
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Unread 02-13-2013, 11:02 PM   #9
peteremond
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Default how are you doing now, AMW5?

Quote:
Originally Posted by amw5 View Post
I've been feeling much better since I received two nerve blocks a few days ago (and also a new medication - amitriptyline 10mg at bedtime). I'm keeping my fingers crossed that this continues helping.

I've been learning a lot by reading the many threads on this forum. It's nice to be able to communicate with everyone here.
AMW5,
I just joined NeuroTalk and saw your post. How are you doing now? My friend has Occipital Neuralgia (ON) and is about to go see Dr. Hae-Dong Jho in Pittsburgh for a consult and see if he is a candidate for his nerve decompression surgery for ON. Have you looked into this procedure? Or do you know of anyone who has gone to see Dr. Jho?

I look forward to hearing from you.

Warm regards,
Peter
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Unread 02-15-2013, 12:07 AM   #10
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@peteremond

Hi Peter,

I am doing SO MUCH better now. Thanks for asking.

After a whole lot more research, the actual root of my problem was FINALLY properly diagnosed. Although my symptoms were very similar to ON, my sternocleidomastoid muscle was the cause of those terrible God awful headaches. I get a massage weekly, and I was getting the sternocleidomastoid muscle concentrated on more, and it was a tremendous relief. When that muscle gets tight, it can cause some awful headaches, neck pain (which is where the muscle is located), shoulder pain, arm pain and other issues. If you Google it, you will find a ton of information on it. I haven't experienced any headaches in a while now (very, very thankful for that). I wish your friend the best of luck, and I hope he's able to get some relief. Please keep me posted. Take care.

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Originally Posted by peteremond View Post
AMW5,
I just joined NeuroTalk and saw your post. How are you doing now? My friend has Occipital Neuralgia (ON) and is about to go see Dr. Hae-Dong Jho in Pittsburgh for a consult and see if he is a candidate for his nerve decompression surgery for ON. Have you looked into this procedure? Or do you know of anyone who has gone to see Dr. Jho?

I look forward to hearing from you.

Warm regards,
Peter
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