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Duration of trigeminal neuralgia symptoms after CyberKnife treatment

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Bean926
Bean926

There was a great thread posted here a couple years ago that has since been deactivated, so I want to start the conversation again.

I have suffered from trigeminal neuralgia for nearly 3 years now, and after trying several medications, finally saw some relief from oxcarbazepine.  However, my quality of life was still suffering, and the side effects were annoying, so I looked at other options.

I had a wonderful experience with the Cancer Center at Penrose hospital in Colorado Springs - the staff there is amazing.  My CyberKnife treatment was just one instance, and it only took 50 minutes to complete.

This was a month ago, and I have had better days in the last few weeks - some almost completely pain-free.  Unfortunately, there are still times when I trigger the symptoms (usually eating, sometimes washing my face or brushing my teeth) and I have that massive electric shock feeling - which then lingers with a throbbing sparkling pain pulse (running from my ear to under my lip) for about an hour... and then only subsides if I sit still, don't talk, and relax.

I am having a hard time coping with the idea that the CK treatment didn't work.  I am not sure how others manage to live a normal life with this diagnosis, because I am certainly not strong enough.  I only get by through various (destructive) coping mechanisms.  So, I wonder if someone can tell me there is hope.  Even if it's another CK treatment... I just want to be able to talk and eat and sing and kiss my babies again without pain. 

Thanks for taking the time to read this and reply with any experience you have with CK treatment for TN.

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1 Reply

  • Notrightnow
    Notrightnow Bean926

    Posted

    Thank you for letting us know that this treatment might not work.    I have only had trigeminal neuralgia since this spring.   I carry an ice pack and use it at night and sometimes even take it in the store.   At home, I have a huge mixing bowl of ice water that I put my face in during my episodes.    If it gets any less than freezing ice cold, it does not work.    I usually only have neuropathic itch so I can only offer support for that and not the pain that people talk about.    I have some health food store remedies that I just barely got that if they work, I will get back here and let you know.  I avoid sugar since I have the neuralgia that comes after shingles and the herpes zoster thrives on sugar.  I cut up ginger root, boil it for tea and keep the slices.   When I get those itching episodes, I sometimes hold the ginger up against the itch and this offers temporary relief.    I use Benadryl to help me sleep.

    I've been using oil of oregano sometimes during my episodes but it's caustic on your skin.    I also get oregano leaves and boil them for tea and think this helps but can't prove it.    

    I weaned off Gabapentin which did not help and I had problems with the side effects.   

    I get temporary relief from swimming and I'm trying to do long-distance swimming.   This evidently helps regulate your blood sugar level and I don't even think I want a temporary spike in blood glucose if this might aggravate the symptoms.   

    I will let you know if my other remedies end up helping.   

     

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