Will this ever ever gonna stop?

After 10 long years being suffering with this monster, I'm at a breaking point :(
I've tried about everything but I never ever gave up hope to get at least a relive.I really do not expect to be completely pain free, just having back a little quality of life.

Yesterday I went to a doc to might get a relive for the pain with Botox injections. The Doctor told me, unfortunately he can't do it with facial pain.
I think that would maybe be a good opportunity for other suffering people in this community!

Right now I'm on Oxycodone 30mg/4-6h, 50mg Amitriptylin and Capsaicin cream and all this medication makes me so sick....

Tomorrow I'll go to another neurologist, he is from China and provides Chinese acupuncture with facial pain/TN.

I'll let you all know, if I can get a relive.

Hang in there!

OMG 10 years! Please do let me know if the acupuncture works. I’ve had TN for nearly one year now and cannot imagine enduring 10 years of it. I’ve been considering acupuncture-it is now my last hope, as I don’t believe the MVD surgery works for so many, and I don’t believe it to be an option for me.
Peace to you.
Andrea

Thank you, Andrea.

Have you ever considered http://facial-neuralgia.org/treatments/surgical/gamma_knife.html ?
For me it wouldn’t be an option, because I’ve the atypical facial pain and not the classic trigeminal neuralgia.
I’ve already consulted a specialist and my change to get pain free is 50%-60%. I decided not to do the gamma knife.
Sometimes it is like walking against walls and you will never break trough…

Be strong, Andrea! There’s always hope.

Susan

Hi Andrea,
My neuro does botox for facial pain, so you might try finding a new neuro, I’ve heard of others on the board here who also are getting it from their doctors. So keep on trying, until you find a doctor who will do what you need.
Lily

Have you ever throught about having the MVD surgry ?

Hi Susan Like You I am at the end of my rope. However that is why I come here and try to understand my condition. I have learned a lot about it and yet I still dont know the cause . I try to keep busy and I attend church on Sunday. Mind you I am not a religious person , but I need all the help I can get. The funny thing is when I walk in I dip my fingers in the Holy water and put it on my cheek. Everybody else makes the sign of the cross. The thing is I will do anything and give anything to beat this. I often find myself thinking I would rather be you when I encounter some one who is angry or just having a bad day. The truth is I would be happy just to have 1 good hour. The one thing I have learned is I will keep fighting and I will never give up. I feel for You and I am here for You Susan .

No, I don’t have a good feeling about the MVD surgery. There are too many (on this site alone) who’s surgeries didn’t work and they are either in more pain now and/or deaf on the surgery side! I am able to tolerate this pain (with pain meds and a nerve med) as it is-I have no choice-but more pain would push me over the edge, I’m afraid. I’ll keep hanging in there until better technology exists. I feel the same with the gamma knife procedures as well, since someone on this site had adhesions from the gamma knife surgery.

Andrea,

This board & other TN boards is not the answer to having a good feeling about MVD surgery. The many, many people who have successful MVD’s daily move on with their lives & are not hanging out on these online boards. The majority of people on these boards are still in pain and are still needing these communities.

I had a successful MVD 19 days ago…it’s the best thing that I could have done even though I was terrified. My biggest regret is that I waited 3 years to finally get up enough courage to have it done. The success rate on MVD’ surgery is 95%. That statistic alone says it all.

All my best,

Judy



Andrea Strong said:
OMG 10 years! Please do let me know if the acupuncture works. I've had TN for nearly one year now and cannot imagine enduring 10 years of it. I've been considering acupuncture-it is now my last hope, as I don't believe the MVD surgery works for so many, and I don't believe it to be an option for me.
Peace to you.
Andrea


hi andrea there are alot of people on this site who have had no luck with mvd i must admit i am one of them. however i am a strange case im 16 with this and they dont have a reason why i've had it since i was 6 now it has gotten worse over the years but any way...the reason there are not alot of storys of mvd surgerys tht have worked on here is because they no longer have a reason to be on this website they r pain free and do not need support us unlucky ones need this sight to help us deal with the pain. so even though mine didnt work i still recomend that you try it i've had 2 plus a 3rd opperation tht was called radio frequency abrasion and i will soon have gamma knife i refuse to give up so please talk with a gud surgen and at least consider it. god bless you and thanks

Thank’s to everybody!!

I went to another Doctor/Neurologist and got http://en.wikipedia.org/wiki/Electroacupuncture.
It was hurting really bad and after all, I got shots in my face and jaw, made out of a mixture from B12, lidocaine and something anti-inflammatory.

I’m not pain free yet, but I feel much better now. The flare ups aren’t as bad as before and the constant pain is much milder. My next appointment is on December 13th, I’m really looking forward to this appointment.

I’ll keep you posted!

Hang in there.

Susan

Judy is right. There are many people who have successful MVDs or have success with meds. Those people are not online looking for answers. So we have a higher percentage of people who are suffering. I am an example of that. I didn't look for answers for 3 l/2 yrs when my TN suddenly became worse. I do wish I had done research before that day. Unfortunately there are too many who are hurting and hurting very badly. I hope one day there will be a medicine that can take away all the pain. But in the mean time, there are many here who understand your pain. Those without TN including our friends and families have a hard time understanding the pain. But we are here for your support. Please email me anytime. And join our chats.
Liz

I think others have given you very appropriate feedback, Susan. It is quite true that boards such as this one tend to self-select for patients who have had continuing problems from surgery or other treatments. These are "support" boards, after all.

Likewise, there is a sound medical record for both acupuncture and nerve blocks as possible elements of a treatment plan for atypical forms of Trigeminal Neuralgia (the constant background of achy, burning pain, rather than volleys of electric-shock stabs). There have been sessions in the past at National conferences of the TN Association, where outcomes of acupuncture were discussed. You can look up the contact number of their National office in Florida, at http://www.tna-support.org, and call to ask if they still have video tapes of any of those sessions. I know they had quite a library at one time.

Botox injections and various forms of nerve block with Botox or Lidocaine have been used with a mixed record of effectiveness, for many years. Not all patients benefit from them, just as some patients who are treated with acupuncture have bad outcomes from having a needle placed in a trigger zone. But they are certainly an option to be explored. Be aware that more than one nerve block or stellate ganglion block may be needed in a series over several weeks, before full effect is observed. The TNA national office may also have records of patient contacts who have had a successful outcome in your geographic area. If you can't raise them for any reason, you can also come back to me through email to ■■■■■■■■■■■■■■■■■■■, and I'll dig somebody out of the woodwork who can treat you professionally wherever in the world you are.

Go in Peace and Power,

Red Lawhern,Ph.D.

Master Information Miner

formerly Webmaster, Trigeminal Neuralgia Association

Hello there,

at first I wanna THANK YOU for the wonderful support, I greatly appreciate this! It makes me feel so much better.

A special THANK YOU goes to Red, you helped me a lot!

Finally I got some relive from my new pain doctor.

http://www.superpages.com/bp/Winston-Salem-NC/Ashleybrook-Clinic-Thai-T-Phan-MD-L0005766311.htm

As I wrote before, I'm getting electro acupuncture every 10 days and also shots. I think I found out what is in the shots: TRIAMCINOLONE, KETOROLAC and DIAG. (I don't know what that is).

I was on Amitriptylin and Oxycodone before and I'm completely off the Amytriptylin and I've also been taking the Oxycodone much more less than before. 10mg-325mg knocks me out :0(

Before I took 30mg at one time, sometimes 3-4 times a day. HOLY COW :0(

I also might have had some withdrawal symptoms, like headaches and a really upset stomach, when I stopped taking it, but I'm honestly not sure about it and it doesn't matter anymore right now.

I take B12 and B6 , maybe it will help some.

I've tried Nucynta as well, but I couldn't tolerate it as many many other medications before.

Please, if you get an change try my treatment to get at least a relive! It is definitely worth it. I know, that the beast in me just takes a nap, but I'll try to knocked it off! Somehow!

I wish everybody here in this great comunity, that a miracle will happen and all the suffering people will get at least some relive.

I personally didn't believe in a cure anymore, because I had such a lot of trys and crys, that I've completely lost my hope. I was about to give up. I thought it wasn't worth living anymore, but my family kept me up and also the new exitement treatment.

TRY IT!!!

All the best and I'll keep you posted!

Susan

I had the MVD surgery in Nov 2010- was not successful at all and yes, I am a lot worse. Now my meds aren't working, Dr. added a third (very expensive) anti-seizure drug, it has taken the edge off to where I am not screaming out in pain but very close to it, now I can't take a sip of water- warm, cold, hot or whatever with out it hit throughout my head. Started taking some Tramadol for the pain yesterday. My family is pushing me toward cyber-knife or anything that will cut the nerve. I think my son-in-law is upset with me cause he has talked to the surgeons office and he is saying, he has found nothing negative about the Cyber-knife, all good. That is what I was told about the MVD, by the surgeon and a lady that had it done, her's was successful. As a matter of fact I know two people that have had MVD surgery with success. I did not have the nerve pounding on the blood vessel as the surgeon expected to find. My pain has also changed somewhat in the past few days. In addition to the hits, sizzling, now to add to that is hot pulsing pain. When that hits really bad, it lasts quite a long while, then that side of my head feels numb for a while. I am also to the breaking point, Prayer is all I have left. Hang in there, I just don't know what to tell you, I just keep asking, "Why" and now what do we do?

xxOxx

Andrea Strong said:

No, I don't have a good feeling about the MVD surgery. There are too many (on this site alone) who's surgeries didn't work and they are either in more pain now and/or deaf on the surgery side! I am able to tolerate this pain (with pain meds and a nerve med) as it is-I have no choice-but more pain would push me over the edge, I'm afraid. I'll keep hanging in there until better technology exists. I feel the same with the gamma knife procedures as well, since someone on this site had adhesions from the gamma knife surgery.