Hello,
I know I've been rather vocal lately, but, I really am searching fervently to the answer to this question.
Have any of you Type II or atypical patients had any success with MVD, Gamma Knife, or any other surgical procedure? Even if you've tried, and failed, I would still like to hear your story.
Thanks all,
Stef
Gloria,
That is what I was afraid of. I also have exactly that CONSTANT, when I am not on Oxycodone and Diazepam, which give me a couple of hours of relief sometimes, Atypical Bilateral TN. . . .the burning, aching, throbbing, pressure, sometimes it feels like my lower face is a big throbbing, aching fireball. Now, it sounds like I am asking for sympathy. That's not it. I'm simply saying, I will do almost anything to escape it. It's torture. It's why I asked the question about "Methadone maintenance" which no one is touching yet (laughs). :)
You seem to be so graceful and accepting in your response. I admire that. If you get time, please write to me and tell me what, if anything, is working for you.
This does help. I believe you are the person who told me this before, but I was in denial.
Big hugs back to you!
Stef
Yes, I am also very angry, indeed, at this situation. God put derivatives of the opiate plant here for our usage for pain, not for someone school kid’s high on a Saturday night. I suppose, I hold the doctor, the DEA and the people who recreationally use all equally to blame for our plight as chronic pain patients. It’s quite infuriating, really.
Gloria E. said:
Hi again, Stef,
I know you're not looking for sympathy!!! You're desperate for answers and help. I have the exact same pain that you describe. It's hideous and non-stop. Sometimes it just gets too much to bear and in to the ER I must go. My kids are grown and off on their own so all I have to take care of are my fur-babies. I can't imagine trying to cope with the bi-lateral atypical TN with small childre to care for. You have my sincere sympathy and any help, support and encouragement I can offer is yours at any time.
I've never been offered Methadone, but it's something I'm going to ask my neurologist about. I'm allergic to Morphine and I've heard Methadone is a variant of Morphine (not sure if that information is accurate) so I don't know if I'm a good candidate for Methadone. But if it helps you cope with the pain and give you some energy to function with, then I'm in favor of it and I hope your doctors are generous with it. Methadone has the stigma of being used by drug addicts, but if it helps us it should be used.
Right now, I'm on 2700 mgs. of Gabapentin, 100 mgs. of Lyrica, 25 mgs. of Amyltriptoline (sp?), 7.5 mgs. of Vicodin (as needed - which is all the time) and recently my neurologist gave me 10 pills of Valium which seem to help a lot. In the past month it feels like the Gabapentin seems to not be working like it used to. I can feel all the meds start to wear off and know it's time for another dose. I'm still trying to find a combination of meds that will help.
One thing that's been bothering me...
Since TN pain is supposed to be the worst pain possible, why are the doctors so reluctant to dispense strong pain meds??? At least with Cancer, you can look forward to ((( hope that doesn't sound horrible ))) eventually being Cancer free or die from it. We don't have that option. We have nothing to look forward to. We only have the pain that won't end and robs us of our quality of life. I'm very angry at the medical community for not recognizing the seriousness of our condition!!!
Thanks for letting me vent.
((( more Hugs )))
Gloria
Stef…try and make it to the meeting on Feb. 5th . The lady told me the neurosurgeon from Vanderbilt will be answering all questions…you may be able to find out a lot straight from the horse’s mouth. I can’t wait to go. I sent you an email…and if you reply to that and tell her your address and tell her you would like the news letter she will mail it. I got mine yesterday and it speaks of the upcoming meetint. I hope you can go…Mary
I hope I can be there too! My Neuro is at St. Thomas, but I had originally asked for a referral to one at Vanderbilt. I am definitely going to do my best to attend (with two kids I never know exactly what I can do from one day to the next). I would hate to miss this.
Mary Miller said:
Stef...try and make it to the meeting on Feb. 5th . The lady told me the neurosurgeon from Vanderbilt will be answering all questions....you may be able to find out a lot straight from the horse's mouth. I can't wait to go. I sent you an email...and if you reply to that and tell her your address and tell her you would like the news letter she will mail it. I got mine yesterday and it speaks of the upcoming meetint. I hope you can go..Mary
Oh, Gloria! Revisiting all of the discussions, I realize, sadly enough, that you are probably right. Right now, my cheeks are burning, lower teeth are beginning to throb, and an aching is beginning behing my right ear. I took my pain meds right before 3 p.m. It's only 5:10 p.m. now, and they are wearing off.
If there is no surgical help, I am thinking of trying Yoga, or something like that, of course, I'd have to do it when the kids are in bed, or they would interrupt. Acupuncture, I haven't gone that route yet. Red typed in something on another post about Never blocks. But, right now, today, as of this moment, a long acting medication sounds so good to me, so I can just get on with life. I am having one of those desperate moments. I am not also not above trying any opiate that they offered at this point.
I had better stop typing. I am angry. As you once said, if this supposedly the "possibly the worst pain known to man", then why are doctors so reluctant to treat it? Type I patients have surgical options. We don't. I guess all we can do is watch the clock until it is time for the next pain pill. I don't mean to be a downer. But, I have been trying to be a cheerleader for others today, while my pain pill was working. Now, it is wearing off.
I had better take another one. Chuck just walked in from doing some shopping, looking very happy and ready to have a good Saturday night. I'm going to prop myself up on meds and try to make his night off a happy one. He brought a movie.
Oh, honey, thank you for all of your support. I appreciate you more than you know.
Stef said:
Gloria,
That is what I was afraid of. I also have exactly that CONSTANT, when I am not on Oxycodone and Diazepam, which give me a couple of hours of relief sometimes, Atypical Bilateral TN. . . .the burning, aching, throbbing, pressure, sometimes it feels like my lower face is a big throbbing, aching fireball. Now, it sounds like I am asking for sympathy. That's not it. I'm simply saying, I will do almost anything to escape it. It's torture. It's why I asked the question about "Methadone maintenance" which no one is touching yet (laughs). :)
You seem to be so graceful and accepting in your response. I admire that. If you get time, please write to me and tell me what, if anything, is working for you.
This does help. I believe you are the person who told me this before, but I was in denial.
Big hugs back to you!
Stef
Stef ,
I too have the Constant burning throbbing pain. I have some relieve at times but it is short lived. I am going Feb 15 to see Dr White in Dallas with the hope of having MVD surgery. I met a friend at the last meeting that had the same thing I do and Dr White did her MVD and she is wonderful now. I am Praying that he can help me also. I am so tired of not being able to sit down and type with out redoing it numerous times because the letters are all mixed up and I am tired of not being able to talk like a intellegent adult.
I will let you know if it helps.
Have a pain free and blessed day!
Mary
Mary Christman said:
Stef said:Gloria,
That is what I was afraid of. I also have exactly that CONSTANT, when I am not on Oxycodone and Diazepam, which give me a couple of hours of relief sometimes, Atypical Bilateral TN. . . .the burning, aching, throbbing, pressure, sometimes it feels like my lower face is a big throbbing, aching fireball. Now, it sounds like I am asking for sympathy. That's not it. I'm simply saying, I will do almost anything to escape it. It's torture. It's why I asked the question about "Methadone maintenance" which no one is touching yet (laughs). :)
You seem to be so graceful and accepting in your response. I admire that. If you get time, please write to me and tell me what, if anything, is working for you.
This does help. I believe you are the person who told me this before, but I was in denial.
Big hugs back to you!
Stef