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-   -   Help! (https://www.neurotalk.org/trigeminal-neuralgia/150971-help.html)

ckenny 05-27-2011 01:56 PM

Help!
 
I just found this site and have had an ongoing bout of facial pain for two months (on my left side) and need to find some answers. Been to the dentist and doctors and have been told it could be TMJ, sinusitis and had my wisdom tooth pulled yesterday, but nothing seems to be helping the pain. (Pain killers only dull the pain) I am sitting here in tears, wishing I could get some answers.

My pain started about two months ago at the same time when I had a bout of throwing up and cold symptoms. Since then I have this horrible throbbing pain every day for about 4 hours on the left side of my face. I wake up relatively pain free and then within a few hours am in tears from the throbbing. It gradually subsides after about 4 hours, until by evening I feel almost normal.

My dentist said it couldn't be trigeminal neuralgia because when I touch my face the pain doesn't send me through the roof. It's hard to describe exactly where the pain is. It seems like my upper jaw area is the worst, although my lower jaw and the gland underneath throb as well. It doesn't seem to go right over to my ear area, though.

Not sure what to try next. We are currently without a family Dr, so have to go to the emergency room when I feel like I can't deal with the pain anymore. Any advice would be appreciated.

zecorvus 05-27-2011 04:38 PM

Quote:

Originally Posted by ckenny (Post 774169)
I just found this site and have had an ongoing bout of facial pain for two months (on my left side) and need to find some answers. Been to the dentist and doctors and have been told it could be TMJ, sinusitis and had my wisdom tooth pulled yesterday, but nothing seems to be helping the pain. (Pain killers only dull the pain) I am sitting here in tears, wishing I could get some answers.

My pain started about two months ago at the same time when I had a bout of throwing up and cold symptoms. Since then I have this horrible throbbing pain every day for about 4 hours on the left side of my face. I wake up relatively pain free and then within a few hours am in tears from the throbbing. It gradually subsides after about 4 hours, until by evening I feel almost normal.

My dentist said it couldn't be trigeminal neuralgia because when I touch my face the pain doesn't send me through the roof. It's hard to describe exactly where the pain is. It seems like my upper jaw area is the worst, although my lower jaw and the gland underneath throb as well. It doesn't seem to go right over to my ear area, though.

Not sure what to try next. We are currently without a family Dr, so have to go to the emergency room when I feel like I can't deal with the pain anymore. Any advice would be appreciated.

I have had the exact same experience. Even the tooth pulled. I took topamax for about a month and the side effects were horrible so I tried neurontin and it got less severe until after a while it was gone. It has been gone from 2006 until February of this year and I just visited a neurosurgeon today and he has me back on it. I do not know what to do either. I hope it goes away for both of us.:hug:

sadie324 05-28-2011 11:35 AM

Quote:

Originally Posted by ckenny (Post 774169)
I just found this site and have had an ongoing bout of facial pain for two months (on my left side) and need to find some answers. Been to the dentist and doctors and have been told it could be TMJ, sinusitis and had my wisdom tooth pulled yesterday, but nothing seems to be helping the pain. (Pain killers only dull the pain) I am sitting here in tears, wishing I could get some answers.

My pain started about two months ago at the same time when I had a bout of throwing up and cold symptoms. Since then I have this horrible throbbing pain every day for about 4 hours on the left side of my face. I wake up relatively pain free and then within a few hours am in tears from the throbbing. It gradually subsides after about 4 hours, until by evening I feel almost normal.

My dentist said it couldn't be trigeminal neuralgia because when I touch my face the pain doesn't send me through the roof. It's hard to describe exactly where the pain is. It seems like my upper jaw area is the worst, although my lower jaw and the gland underneath throb as well. It doesn't seem to go right over to my ear area, though.

Not sure what to try next. We are currently without a family Dr, so have to go to the emergency room when I feel like I can't deal with the pain anymore. Any advice would be appreciated.

You really should be seen by a neurologist. My story is very similar to yours and I was at all the same doctors/dentists and I had no help/relief until I was seen by a neurologist. If you are diagnosed with TN (typical or atypical) you will be put on some kind of anti seizure medication (I'm assuming because everyone I have talked to with TN gets the medicine for the first steps). It may take a while to find the right medicine to work for you .. it took me three different ones until I could finally tolerate gabapentin. After three months of trying medicine I was not getting much relief and finally was sent to a neurosurgeon. The neurosurgeon is usually last resort because they dont want to do surgery on you with out trying the medicine first. In the end I got a MVD. I have been so so pain free with some pain coming back now 5 months post op.

Just breathe, there is help out there you just have to take charge & be strong. Where are you located? (just asking to see if i can recommend a neurologist).

ckenny 05-28-2011 07:24 PM

Quote:

Just breathe, there is help out there you just have to take charge & be strong. Where are you located? (just asking to see if i can recommend a neurologist).


Just above the ID border in Canada, so we are not very close to any major medical centers.

sadie324 06-01-2011 09:19 PM

Quote:

Originally Posted by ckenny (Post 774513)
Just above the ID border in Canada, so we are not very close to any major medical centers.

I highly recommend going to see a neurosurgeon who is now located in Erie, PA Dr. Raymond Sekula. He now works for UPMC up there and honestly gave me my life back. I'm not sure if you have to see a neurologist first or not but I suggest him for sure.


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