We are patients living with Trigeminal Neuralgia, here for your support.

Who's TN has gotten worse over time?

I know there is a similar post to this question already, but I would love for as many of you as possible to give me and Im sure others your feedback to these questions:

1. Has you TN got worse over time?

2. Have you had to increase your meds to control the pain?

thankyou in advance!

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Permalink Reply by John Mcnally on February 7, 2012 at 2:30pm

Hello, Rachael,

My pain went from moderate to out of control in 90 days time. At one point in time the pain meds could not keep up with the ever escalating pain. Yes, I had to steadily increase my meds as time went on, up until I has surgery. At one point I went to ER, the pain was massive, it was the worst night of my life. I was admitted and had a MRI. I was lucky enough to find an excellent, well-experienced nurosurgeon in Central Illinois, he diagnosed the problem, then did a day surgery procedure. I have been fine since. I still have a certain amout of numbness on one side of my face, but that is to be expected. The numbess may be there for an extended period of time but I am dealing with it...I was off all pain meds after 2 days. On my follow-up visit my surgeon carefully explained how he found the source of my pain, what the MRI showed, and how he could remedy the problem. Hats off to him, I feel great!

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Permalink Reply by Lee Ann on February 7, 2012 at 9:04pm

Hi John,

So happy for you. The last 24 hours have been a nightmare after a week of tolerable pain. Seeing pain Management tomorrow. The dr. has mentioned a nerve block...is that what you had? However, my MRI and MRA showed nothing. Of course, 3 specialists supposedly reviewed them and no one mentioned that, in the report, it says I suffered a mild stroke. Another dr. mentioned that. Did you have hearing loss or problems? Thanks.

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Permalink Reply by John Mcnally on February 7, 2012 at 9:20pm

Lee Ann said:

Hi John,

So happy for you. The last 24 hours have been a nightmare after a week of tolerable pain. Seeing pain Management tomorrow. The dr. has mentioned a nerve block...is that what you had? However, my MRI and MRA showed nothing. Of course, 3 specialists supposedly reviewed them and no one mentioned that, in the report, it says I suffered a mild stroke. Another dr. mentioned that. Did you have hearing loss or problems? Thanks.

Hi, Lee Ann,

No, I had no hearing loss or any serious problems. I'm not sure what a nerve block is all about. I did not have one, my surgeon would have explained that. Are your pain meds strong enough? Are you doing plenty of research on your condition? My aunt who is a retired MD always said that patients must be very pro-active, learn what your condition is, do your homework and learn new information, so you can ask the right questions.

I still cringe when I think about the horrible night I had before being taken to ER and then admitted to the hospital. Massive pain, and nothing would relieve it...my meds were useless. I was delirious, going out of my head in pain. At ER they gave me a shot of morphine, there were no results...then the gave me another shot of something stronger and then the pain subsided. Whew, I wouldn't relive that night for several million dollars...

All the best to you,

John

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Permalink Reply by Lori (Lefty) on February 7, 2012 at 10:30pm

Lee Ann, I've been in a downward spiral of pain the past few days in which even my pain meds at times can't control...so I went to my pain management Dr. yesterday for a steroid injection & for some strange reason, it didn't give me any relief at all - which is highly unusual because in the past, it has given me at least a few really good pain free days! We finally had "the talk" about whether or not he would take over prescribing pain meds from my neurosurgeon & he said he would consider it - I have about 1 weeks worth left & that's it...I wish these docs wouldn't play games & leave us "wondering" if we're going to be able to even push through the pain enough without meds to even get out of bed!!! Sorry, just ranting a bit here! ;) Is your pain constant? Mine didn't start out that way, but has been ever since my MVD surgery last Sept. I hope you get some relief soon! And John, I couldn't be happier for you!!! :) I hope one day I too will be pain free & can give others on here HOPE!!! ((HUGS)) to you both! ♥

John Mcnally said:

Lee Ann said:

Hi John,

So happy for you. The last 24 hours have been a nightmare after a week of tolerable pain. Seeing pain Management tomorrow. The dr. has mentioned a nerve block...is that what you had? However, my MRI and MRA showed nothing. Of course, 3 specialists supposedly reviewed them and no one mentioned that, in the report, it says I suffered a mild stroke. Another dr. mentioned that. Did you have hearing loss or problems? Thanks.

Hi, Lee Ann,

No, I had no hearing loss or any serious problems. I'm not sure what a nerve block is all about. I did not have one, my surgeon would have explained that. Are your pain meds strong enough? Are you doing plenty of research on your condition? My aunt who is a retired MD always said that patients must be very pro-active, learn what your condition is, do your homework and learn new information, so you can ask the right questions.

I still cringe when I think about the horrible night I had before being taken to ER and then admitted to the hospital. Massive pain, and nothing would relieve it...my meds were useless. I was delirious, going out of my head in pain. At ER they gave me a shot of morphine, there were no results...then the gave me another shot of something stronger and then the pain subsided. Whew, I wouldn't relive that night for several million dollars...

All the best to you,

John

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Permalink Reply by booklass on February 8, 2012 at 1:33pm

Sheila, that is true about the concussion. I called the ER often enough when my boys were little, and that is what they told me. My sons went around with the "third eye" (a lump in the middle of their foreheads) from about 13 months until they were about four years old. Our insurance does not cover chiropractors, either. I would like to go, but it will have to wait. Those same two boys are now both in college. (and lumpless for the moment) I really hope all heals well. It is a shame about the hospital situation, but I do not have a lot of confidence in ours, either, so I understand.

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Permalink Reply by Jackie F on February 8, 2012 at 2:04pm

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Permalink Reply by PAMELA JONES on February 9, 2012 at 11:04am

Mine did really good on meds then they had to go up and up again I was taking 1200mg of carbamazpin the side effects just about killed me.Doc lowered the carb. and added baclofen was doing great at one point no pain just numbess on side of face lasted about two months, but always had the feeling the pain was going to break thru. Seen doc and told him I was doing good two days later the pain hit called doc he up my meds didn't help this all happen during the holidays. I spent 6 days in the hospital and out surgery for rhizotomies/glycerol. Face is numb but no pain as before you always have the feeling. Doc wants me off the meds its hard to do I get headaches when I start I have cut out 5 doses just 8 more to go.