hi guys,regarding my last post: i need as much info as poss,iv had it back for just over a week now,nothing earth shattering,on & off completely random.
if anyone out there can give me some idea of what might be going on! will it come back fully,could it go of its own accord? your experiences would be of great help.you all know what its like waiting for it to return,its so stressful.
Im at the Docs at 10.25 this morning,feel a bit of a fraud as the last few days its been ok,just the odd "bang" here & there .i dont want to take my meds as for some reason i need to know if it will come back fully.i think if it does at least i have a good reason to insist on a long term solution.
So your comments would be of great help,thanks guys.kind regards Lisa xx
This is Vic's wife Karen......Vic suffered for over 5 years with tn. It would come and go, good days bad days. It always got progressively worse. He would up his meds and try to bear it. I stepped in and made him go to the doctor. He would tell the doc that he was doing OK and I would tell the doc that he wasn't! He had 5 surgerys in 5 years. Finally in December of last year he had an MVD in Los Angeles with Dr. Stephen Giannotta. It has given him his life back. Find the best doctor as close to you as possible. Make sure that he has a lot of experience and do insist on the best method of treatment. Good luck....
I've been talking with face pain patients as an advocate and web author for the past 16 years. Hopefully I have enough information to help you place some things in perspective. By the time you see this, however, it's likely you'll already have talked with your doctor (which is good).
Unfortunately, I must offer you some hard-to-hear input.
(a) You're not a fraud. You are legitimately anxious about fragmentary indications that your pain may return.
(b) You want to know (in effect) "what's going to happen to me?" That desire is natural and human. But it is unfortunately unrealistic. There is no one-size-fits-all method of predicting whether your present twinges will disappear, develop further, or blossom again into full-fledged agony. There just ISN"T, Hon. The docs don't know. So you'll be called upon to cope with whatever happens.
(c) You may well have a reason for "insisting" on a long term solution. But you're going to have to confront the reality that medical science just isn't up to that level yet.
(d) If you have been prescribed meds, then my strongly felt advice is to TAKE THEM! Early intervention can often prevent the full fledged emergence of unmanageable pain.
(d) Stress is controllable, even if your pain levels happen not to be at times. And interestingly, many people report that by controlling their own stress, they desensitize themselves to pain and reduce its significance in their lives. For some people, the level of pain itself can be reduced by acting to reduce the stress factors in positive ways. There are training programs in biofeedback, meditation, low-impact exercise, creative visualization, and other mental/emotional tools, that can help you let go of the compulsive need to "know" the possible pain dimensions of your own future. That sense of compulsion is felt by many people, Lisa. And there appear
Hi guys,thanks for your reply’s,i saw my GP this morning,he said that as the attack are minor & infrequent at the minute,that he would lay off the meds for now.He suggested however that if it begins to worsen then start to take the Naproxen first & see how that goes.If it doesnt control it he says we may have to revert back to the Teg.Im happy to do that but long term i need a better solution.A guy i work with had TN and 12 yrs ago he had a procedure done,they inserted a needle into the nerve & heated it to 60 degree’s ,he had this done twice & the TN never returned.
The procedure is called radio frequency Rhizotomy, Lisa. It has outcome statistics that are comparable to those of Microvascular Decompression -- namely a rate of pain-free life of about 70% after seven years, with about half of all patients pain free after 12 years. Either procedure can be repeated if warranted.
I think the smart answer is that there are no two people the same. In my case, the pain had been increasing for some time and I resisted upping my medication, at that time 800mgs Tegretol per day. My resistance was for no particular reason. I had no discernable side effects. In the eight years since the pain started, I have had more good spells than bad and I was able to deal pretty well with the pain. Then suddenly, last November, an attack at the top end of the scale. On my GP's advice, I went to 1600 mgs per day which provided some relief, but this time the attacks were the most persistent and painful I had ever know. To cut a long story short, the attacks became even worse and I was admitted to hospital for two weeks. They tried morphine which had no effect and eventually moved to a combination of Tegretol, Gabapentin, Baclofen and Amitriptyline along with the occasional shot of Pethidine when the pain was at its worst (screaming sore if you know what I mean). That was last November and I have been pain free since, still on all the aforementioned drugs with the exception of the Pethidine. I am maybe just lucky, but I have no side effects other than some minor double vision for a very short time after my evening dose of Tegretol and that’s not even every night.
So on the basis of my experience, I would advise you to take the medication you have been prescribed so that there is a preventative level in your system. I often wonder if I hadn’t been as sloppy with my meds could I have avoided a load of grief.