Chronic head pain

Posted by sun711 @sun711, Aug 16, 2011

I have been diagnosed with occipital neuralgia. After going through every medication,pt exercise, acupuncture and nerve block injections. Nothing has helped. Now my pain specialist is advising a neru stimulator implant in my head. I’m wondering if anyone has had this treatment and how they feel about it.

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I Have bi-lateral supra-orbital neuralgia. I have had a trial with a neuro-stimulator. Even though my pain is double-sided, the trial was only for one side. Yes…..it helped. I have been through what you have and more. However..it wasnt a dream come true. I havent had the permanent yet, but the trial did help. It helped because it took away the pain that was “taking me over the edge”, it made my pain “liveable.” I dont know if that makes sense. My name is supraorbital on this site if we want to be friends. I am sure our pain is very similar. I have been in pain for over three years.

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My husband had this and received two nerve blocks. This got rid of his pain in his neck, but not the body pain which nobody can diagnose.

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I had nerve extraction surgery in August at Georgetown University Hospital. i developed occipital neuralgia after brain surgery in 2010. I exhausted all treatments like meds, nerve blocks, ablations…then I saw a doctor on tv who was doing this new procedure where he either goes in and makes space around the nerve to alleviate pain or he extracts the nerve. Because my greater and two lesser occipital nerves were severed during surgery, I was a candidate for the extraction. It was outpatient surgery. As supraorbital said, it made my pain livable on most days. I have to take each day hour by hour with different degrees of pain, but reduced a lot from before the extraction. The doctor’s name is Dr. Ducic. if you want to know any more about it, I’d be happy to share.

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@supraorbital

I Have bi-lateral supra-orbital neuralgia. I have had a trial with a neuro-stimulator. Even though my pain is double-sided, the trial was only for one side. Yes…..it helped. I have been through what you have and more. However..it wasnt a dream come true. I havent had the permanent yet, but the trial did help. It helped because it took away the pain that was “taking me over the edge”, it made my pain “liveable.” I dont know if that makes sense. My name is supraorbital on this site if we want to be friends. I am sure our pain is very similar. I have been in pain for over three years.

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I have occipital neuralgia on both sides . Have also had every non-surgical treatment. So far, I've had one series of Botox injections. Will have 2 more rounds, and then there's only surgery. I'm considering occipital release. Have you ruled that out for some reason? Did you take morphine prior to your neuro stimulator? How much? Thanks.

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@authorchris

I have occipital neuralgia on both sides . Have also had every non-surgical treatment. So far, I've had one series of Botox injections. Will have 2 more rounds, and then there's only surgery. I'm considering occipital release. Have you ruled that out for some reason? Did you take morphine prior to your neuro stimulator? How much? Thanks.

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Hi Chris, welcome to Mayo Clinic Connect. I see that you made your first post to an older discussion. I think you might appreciate joining this active discussion
– Occipital Neuralgia https://connect.mayoclinic.org/discussion/occipital-neuralgia/

Can you tell me more about occipital release? Are the botox injections helping you?

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That’s a new one for me! I suffer from severe Headaches! Been on all the medications! Nothing worked!

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@jimmy370

That’s a new one for me! I suffer from severe Headaches! Been on all the medications! Nothing worked!

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Hi @jimmy370 I dread the day for the awful headaches. Mine is due to the AVM. It occurred in my cerebellum. At first I was getting the headaches 2-3 times per week but now have decreased to 1-2 times per month. I had tried coffee for the caffeine as my neurologist had suggested. He alao prescribed a pain medication but I refused. Instead I tried Tylenol but that didn’t work either. For a while I used a bag of ice on my head which decreased the intensity enough for me to be able to sleep. I later discovered an herbal tea(no caffeine) which helped me tremendously to the point where I no longer needed the ice. It was suggested by a Mayo Connect member. The tea is available through Amazon. For me it either takes the headache completely away or decreases the intensity to make it bearable. I believe the trick is to drink the tea when the headache starts to come on.

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I have internal vibrations through my nerves running through my body. It never shuts off, it is going through my back, stomach, legs, feet.. lower and upper extremities as well as my face, . I do not sleep well don’t know what to do!

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@mctim

I have internal vibrations through my nerves running through my body. It never shuts off, it is going through my back, stomach, legs, feet.. lower and upper extremities as well as my face, . I do not sleep well don’t know what to do!

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Hello @mctim and welcome to Mayo Clinic Connect. There is a specific discussion on Internal Vibrations you may wish to join to connect with members who are experiencing the same.

Please join the discussion here if you wish: https://connect.mayoclinic.org/discussion/internal-viberations/

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@avmcbellar

Hi @jimmy370 I dread the day for the awful headaches. Mine is due to the AVM. It occurred in my cerebellum. At first I was getting the headaches 2-3 times per week but now have decreased to 1-2 times per month. I had tried coffee for the caffeine as my neurologist had suggested. He alao prescribed a pain medication but I refused. Instead I tried Tylenol but that didn’t work either. For a while I used a bag of ice on my head which decreased the intensity enough for me to be able to sleep. I later discovered an herbal tea(no caffeine) which helped me tremendously to the point where I no longer needed the ice. It was suggested by a Mayo Connect member. The tea is available through Amazon. For me it either takes the headache completely away or decreases the intensity to make it bearable. I believe the trick is to drink the tea when the headache starts to come on.

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May I have the name of the tea?

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@authorchris

May I have the name of the tea?

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@authorchris the name of the tea is Shifa Tea. Good luck!

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