Started with some kind of severe ear/head problem 9 years ago. No one knew what to do and told me it might go away or it might not. It didn't go away so I just tried to live with a pain level ranging from 4 to 7. My social life suffered a lot. Last September, the pain went completely out of control. This time, I'm not letting them blow me off. My neurologist is compassionate (sees me once a month) and gives me Percocet 10/325 to help. It knocks the pain down a couple of points but I'll take that. Recently, I started on Tegretol. Started feeling a little relief, but had an episode when they tried to increase it. Now I'm on 350 a day which isn't much, but I'm seeing some good hours. Lyrica was really bad for me and Cymbalta did nothing...although Lyrica was wonderful for arthritis. Everyone is different, though, and this affliction know no boundaries.
Well, I probably don't fit what you are asking. My TN gradually has gotten worse over time which is how it was finally diagnosed as TN and not teeth, sinuses, tension, just cluster headaches, migraines, etc... However, I have only been on meds and learning to adjust to the right dose in the last few months. I think you mean everyone who has gotten worse with meds, and it is too soon to tell for me. Are you worse, Rachael?
I was diagnosed in late 2010 had 8 months of remission then it came back with a BAM! I have now been on medication since October 2011. My pain was worse than the original time (unmedicated), but since being on medication its manageable. I am only on a small dose of Tegretol, however over the last few weeks my break through pain has been worse which leads me to believe I need to increase my meds. Does this mean im getting worse or am I getting used to the meds? I dont know..........
It seems overall that 'most' people get worse over time and their pain meds need to be increased to the level of not being able to function /work anymore. This is what my neurosurgeon told me, but I figured he just wanted to cut my head open ( MVD) and make a bit of pocket money at the same time haha oh im such a sceptic!!! which lead me to writing this post, as nobody is playing around in my brain without me doing my homework first!
booklass said:
Well, I probably don't fit what you are asking. My TN gradually has gotten worse over time which is how it was finally diagnosed as TN and not teeth, sinuses, tension, just cluster headaches, migraines, etc... However, I have only been on meds and learning to adjust to the right dose in the last few months. I think you mean everyone who has gotten worse with meds, and it is too soon to tell for me. Are you worse, Rachael?
Oh, Rachael, how miserable, and such a let down after being in remission for a while! I do know that we can develop a tolerance for our meds over time, I also know that some meds work better in conjunction with an antidepressant for pain. I can't remember which ones, though. It is possible that you may just need to change the dose or address the type of meds you are taking. You are right, though, many people do get worse over time. I think I would start with the meds first. I mean, MVD surgery is serious business, and my doctor told me that it should be way down there as a line of treatment. I wonder, too, if it depends on the type of TN you have? And what is causing it? Well, I don't think you are being sceptical so much as wisely cautious, especially since you were in remission for so long. You might also want a second opinion? Keep us posted on how you are feeling and what you are doing.
I'm not sure if my ATN got worse, or if the pain has worn me down so that I'm more sensitive to pain. I have more remissions now. Those who are sufferingg can be hopeful that they will have remissions of weeks or months at a time with just one or two attacks during that time. 555 views! Lots of people were curious about this question I see. I was able to lower my meds quite a bit until a few months ago. Yesterday I had a bad fall, landed on my neck and head, and pain is worse, so wondring if pinched nerves can cause this pain too.
i have pinched nerves and i cant tell the difference between damaged per ipheral anerves. its very hard to see any of these on scans. your neck fall could be completely seperate. all of the nerves are so close in this area.
Booklass, thanks for your compassion. I was planning on going this afternoon, but after refelecting on how dangerous our hospital is, and thinking that I'm really not that bad off, I decided to just rest and heal. That's all they'd tell me to do for a concussion anyway. I called my insurance company and they won't cover chiropractic, so I have to save some money for that, so I'm kindof stuck anyway.
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!
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.
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...
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...
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.
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.