You have heard from me before..........many years of suffering, 14 to be exact. History of all drugs, Gamma Knife, then MVD. Been told from popular surgeon that I have AD now. Been thru pain management(now on Medicare). I have had no results. Tried most meds, Lidocaine Patches, etc. I'm in so much pain. I make my family miserable. I'm dying with pain and so tired of it. Iguess I'm just feeling sorry for myself again. But I hurt so bad and no one can see it. My lips are burning so badly right now. My gums and high cheek bones hurt. My eye feels like its being pulled out of the socket. What is left to do? Just getting pretty desperate. Thanks for listening. No one else will.
So sorry for your pain and i know how you feel.Have you looked at the P Stim?There has been much success with it and it will be my next tool to try if my Gamma treatment wears off.Hang in there.
Are u in TN pain or AD pain?
Just wondered, if you'd also tried the Gabapentin and other anti-seizure drugs, or, alternatively, I found help from amitriptyline, (I also have it with Tramadol and Ibuprofen),although it is an anti-depressant it affects the way the brain interprets pain, so it's often given when others are not effective or tolerated. I expect you know this anyway but thought it was worth saying, just in case. Best wishes, Dove.
I am sorry you are having to go thru this. This TN is a very lonely thing to deal with no one really understands it unless they have experienced it so alot of times we keep it to ourselves. I myself have isolated myself and haven't made any comments in a long time. My heart really goes out to you right now. I am on the same journey as you are my friend, but do not suffer from AD and can only imagine how bad that must be. I have had 2 mvds no success many meds that help some and am going to start on Lidocaine patches and an anti-depressant today. . I may try the Gamma-knife in the future but I was told the risk for AD is lower with this procedure. Please don't give up there has to be hope still somewhere out there for us, Keep looking and trying different things keep an open mind, but in turn also know there are scammers so do research. I keep praying for a miracle. There are alot of books written also by people who have been healed from Tn. I still plan on reading in regards to this. One particular written by a Bruno Groening a German man who helped many people with chronic pain to be healed, very interesting reading and with testimonies of people who claimed complete healing through his teachings. If anyone has any knowledge on this I would like to know. Nothing ventured nothing gained, I will be praying for you today and that your pain will be less. God bless.,
Can you find Theralase treatment near your home? It is the only thing that has given me any relief at all, any real sense I hope.
Have you seen an ear, nose, and throat doctor or formally called an otolaryngologist? I had a severe infection that went untreated for three years even though I saw 4 then 5 otolaryngologists. The fifth one operated and significantly reduced my pain, Tn was the result of being untreated for so many years. It is worth a try. Good Luck Sandy
Santafered, I am sorry so much pain is coming your way. I know JUST how you feel. Nobody can see it. Family sometimes seems oblivious. But, that's because they can't see whats not visible. I suffered for 2 years then had a GK. That helped greatly, for me. Not so for everyone. I was pain free for 9 years. Then WHAM-O. It came back with violent shocks across the face -- just as rapid as machine gun fire. It was way past horrible. They then gave me a CK. That was 4 years ago. That did a lot of damage to the nerve causing numbness, and all kinds of running-like feelings. But, that is what the CK was suppose to do.....damage the pain sensors of the nerve. I take Lyrica and Trileptal and Elavil. I am much better now, but I still have to stay on those meds daily, but I can function. I will never be back to normal 100% but I am viable and can do pretty much as I please. I just have to take those meds for the neuropathy caused by the CK. The drs. did what they could. This disorder is not like other pains where they can do this or that. They just do the best they can, and for that I am thankful. I've done a lot of praying ---and with that praying believing! I feel that God has given hisb blessing on my prayers. Otherwise, I would not be here. Nobody, no matter how strong they are can cope with this on their own. Prayer is a must.
My pain is from AD. It is constant. Always there. My lips feel as though they have been burnt. The whole left side of my face.
Albee said:
Are u in TN pain or AD pain?
HELLO, I AM SO SORRY YOU ARE IN SO MUCH PAIN. I HAVE TRIED ALL KINDS OF MEDS MY SELF .MVD ALSO..THE ONLY THING THAT HELPS A BIT FOR ME IS CANABIS. AND PRAYER . MY MOM HELPS WHEN SHE PRAYS FOR ME.. I KNOW PAIN AND IT IS SO HARD . HOPE YOU FEEL BETTER.
santafered said:
My pain is from AD. It is constant. Always there. My lips feel as though they have been burnt. The whole left side of my face.
Albee said:Are u in TN pain or AD pain?
I have also used accupunture will helpful results.
Sandy, did you use acupuncture for TN ?
I don't comment to much, but I would like to reply to your posting. There isn't anything you have written that I am not going through myself. I also had gamma knife in 2008, MVD in 2009 and this summer went through Microscopic Decompression Surgery in June and July. Every procedure was great while it lasted which was not long at all. I have painful numbness, live up north where the winters are very cold and as soon as the cold hits my face I am totally done in fore the day. I have a feeling of pulling in my jaw up to my ear and my chin also has pulling . I also have burning in my chin and my lips. I have a long story. But what I can tell you is that no matter how I feel I make myself get up every morning and get moving and try to keep a positive attitude which is not easy. Like being deaf no one can see what you are going through or comprehend it. Like becoming immune to medicines the people around you also become immune to what you are going through. I take 225 mg of Lyrica, 1mg of Clonazepam, and 10 mg of Zolpidem at night and sometime a pain pill if I just can't get to sleep. I find that if I can sleep through the night I cope better during the day. I refuse to be in a total fog from the medications. I have built a pain tolerance over the years that when I am really sick or I should be in a lot of pain from something else, it doesn't phase me. I am in constant face pain from the minute I get up from the time I go to bed. I am ready to hit the hay by 7:00 every night. The more rest I get and the less stress in my life helps me to cope. My mother also had TN and had MVD surgery when she was 58. It was very successful and she is now 78 still with no pain, but she has Lupus and has nerve pain in other places on her body. I have found that people with TN also have some kind of autoimmune problem. Oh, I also use a heating pad on the area's of my face at night where it is burning, which is most of the whole right side of my face, it really helps. I also tried Botox. It did not work. Nobody has told me I have AD, but from everything I have read I am sure I do. I want to be positive with you but I can't, it is a rough road to go and many years of it and I feel that everyone that has TN, ATN, AD or any other chronic pain needs to find what works for them. What will work for one person may not work for another. I have been dealing with this for 20 years and I am no longer willing to put myself through anymore procedures and I refuse to take multiple medications that put me in a fog most of the time. I have grand children I want to enjoy and they are the only ones allowed to touch my face.
So sorry to hear you are suffering so. I don’t know if you have considered it, but I have a peripheral nerve stimulator for pain control and it works very well. After MVD failed to relieve my constant burning boring pain , my surgeon suggested it.
I do have bilateral ATN, and had MVD on the other side in October. As of now, I take no meds, and am virtually pain free.
Best of luck to you
I am so sorry for your pain. My wife has had MVD, gamma knife, and numerous injections to the face at Emory Hosp., as well as radiofrequency stimulation for type 2 TN. Nothing has helped.
She describes the pain as a burning, pinching, gnawing pain in the roots of her teeth on one side only. Sometimes on the top, and sometimes top and bottom. It even radiates to the ear on occasion. It doesn't hurt when she is asleep. Upon wakening, the pain starts slowly and gets worse as the day goes on. If she chews anything, the pain flairs up.
I wonder if she has AD? Does anyone have any idea how AD is diagnosed? We are investigating Botox injections for TN at this phone# 412-■■■■■■■■ in Atlanta. Ask for Lois. God Bless!!!
What is a pherepheral nerve stimulator? thx... Grecio
It's an implant of electrodes near the nerve that work on a battery.Many here have had good results.Here is one google search,but this seems to be more for back pain i think.
http://www.precisionneurosurgery.com.au/html/surgical_periphnerve.htm
Grecio said:
What is a pherepheral nerve stimulator? thx... Grecio
Her symptoms sound similar to mine. There is no test for AD from what my Dr. has told me. It is decided simply by the symptoms. I truly will always think I waited too long to do anything invasive and the nerve was so damaged. I took strong doses of meds for so many years. Afraid to do the surgery. Broke down and had the Gamma Knife at the University of Kentucky. Pain free for 6 months. Then back with a vengeance. So 2yrs. after the Gamma Knife I had an MVD done at Alleghenny General in Pitsburg. Went to Dr. Peter Janetta's office. Had an easy time with recovery. But sortly after it I started with these symptoms. Kept getting worse. It first started in 1999., had Gamma in 2008, the MVD in July of 2013. Either the nerve was already to far damaged before surgery, or it was damaged during surgery. At this point I'm truly scared for them to go in again. Even for a pain stimulator. I have tried just about every drug on the market. Now that I'm old enough for Medicare, they won't pay for so many things. Now living on SS, my resources are limited. Thanks for your concern. I appreciate it.
Grecio said:
I am so sorry for your pain. My wife has had MVD, gamma knife, and numerous injections to the face at Emory Hosp., as well as radiofrequency stimulation for type 2 TN. Nothing has helped.
She describes the pain as a burning, pinching, gnawing pain in the roots of her teeth on one side only. Sometimes on the top, and sometimes top and bottom. It even radiates to the ear on occasion. It doesn't hurt when she is asleep. Upon wakening, the pain starts slowly and gets worse as the day goes on. If she chews anything, the pain flairs up.
I wonder if she has AD? Does anyone have any idea how AD is diagnosed? We are investigating Botox injections for TN at this phone# 412-647-6776 in Atlanta. Ask for Lois. God Bless!!!
Well I sure know what your talking about and I hear ya,same goes for me ,I,m just about ready to throw the towel in, I,ve had about all I can take if it was,nt for the high doses of dilaudid I,ve been taking I would have been finished long ago, but we just have to hang on and hope you find something that will work for you. We have to try to keep helping each other and prayers for everyone suffering!! All the best and I am pullin for you!! you can be sure of that!! Dave G.