About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (8)

Sep 6, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

Lee-Just happened to be able to quickly respond…you’re welcome! Sounds to me like you have had a very difficult and confusing time of it. I mean not knowing when these events would hit you–blindsightedly.

My occurrences were very different than yours…14 yrs ago (6 mos after car accident) I started Neurontin, then got the nerve blocks. After a few months added Tegretol and did more nerve blocks. Then Dilantin started and more nerve blocks…all over a 1 1/2 yr period. Over that time there was a waxing and waning of painful episodes. Then was able to STOP all meds/treatments.
I don’t recall any warnings/nerve blips, etc.

In mid-August I had severe and unrelenting pain–right sided throbbing, stabbing and mostly facial-temple, mandible and maxillary regions. I tried Hydrocodone but it only took the edge off the pain, up to 2 tabs every 4 hrs, and was making my stomach ill. Was able to stop the Hydrocodone entirely after the nerve blocks and starting the 2 meds.
email: kobleurjs@aetna.com

Sep 6, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

Hey Lee–so let me answer your questions (to the best of my ability!) Seems you have had this pain constantly over 12yrs, and my pain is since mid-August after being pain-free for 14yrs. So, the meds I am on now have not been increased. I don’t like taking meds if I don’t have to but these meds are REQUIRED! Again, I am on Neurontin (Gabapentin) 600mg 3 x day and Epitol (Tegretol) 200mg 3 x day. When I feel spasms, it is likely that a dose is due. Otherwise I take some Advil/Aleve/Ibuprofen and it helps some. Personally I recommend the meds–the pain was unbearable! The surgery you describe seems drastic and I am not going under the knife any time soon! I have looked up info about such surg on WebMD and recommend you search there as well. Don’t take just one doctor’s opinion into consideration, please!!

Aug 28, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

Yours is a unique situation Lee, I can only say that….it doesn’t appear to me to be ‘all in your head’ or that you are imagining pain. Pain is a real condition! In addition to neurology, there are pain management doctors out there. Not sure if one is close to you or not but you might seek assistance from them. Neurologist–well you could see another and make sure you tell all the details of your situation. Mayo might help–I have never been there but have heard only good things!
I am currently taking Gabapentin 600mg and Epitol (Tegretol) 200mg each of them three times per day.
I would make sure you tell your MD that you are reducing the dose.

Aug 27, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

Hi Lee, happy to meet you! My name is Jen and I live in metro Atlanta (GA). My doctor is in Decatur GA–Dr Weiss.

Aug 27, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

Hi…just to follow up…the nerve blocks are tender, directly into the occipital nerve. Though it sounds painful it really REALLY is effective! Do not stop those meds either, they are specifically for trigeminal neuritis. I don’t want any surgery if possible. My pain started about 6 mos after a car accident. Initially I was treated for about 1 1/2 yrs with periodic nerve blocks and continued the meds as well. Eventually the pain resolved. I also have some scoliosis and have sought pain relief from massage therapists and chiropractors–they really help as well. As far as waiting for appointments–I got lucky and there was a cancellation 5 days after the initial onset of pain this time…I also spoke with the office manager impressing on her the severity of pain I was in…another thought: DO NOT SETTLE FOR A WAIT AND SEE NEUROLOGY OFFICE! Shop around and find someone that can see you in the next couple of days if you are in pain!!

Aug 24, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

So I had this pain 14 yrs ago, now having a recurrence and the same treatment is given. You may be under the impression that it is obsolete, but it is very effective. Injections into a nerve sound very painful, but luckily they are not.
There are some fancy-do-dah surgical procedures that actually remove part of the nerve…that would be the next treatment I have read about. I don’t think I’d go there–heard of the outcomes and I am not ready for that drastic measure.

Aug 24, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

No, I was not treated at Mayo. I have been to my local neurologist and he treated with nerve blocks into my occipital nerve, about 5 Kenalog injections. Started and still on Gabapentin (Neurontin) and Epitol (Tegretol).

Aug 19, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

I wanted to share my experience with this condition…
Severe but treatable pain in the face and head.