Our situation sounds very much alike. I to refuse to give in. But every once in a while I have a break down. I also think when I get too tired it is much worse. And maybe that is because I'm older. I love to sew, but don't always have something to work worth. I do find If I keep busy, I can keep my mind off of it to a certain point. Eating is a real problem. Hot or cold, etc. Nothing crunchy goes into my mouth. I have terrible sleeping habits. Lucky to get 4 hours. And after several weeks of that I get way to tired and in lots of pain. By the end of the day, it's worse. At this stage of my life, I live for my Grandkids. They are everything to my husband and I. My youngest is 5 and she is our only girl and she is the only one that is allowed to touch my face. I also grit my teeth at night and during the day. I think it's because of the pain. I use the cheap kids sports mouth pieces that you boil. They help me, but can't wear during the day, they gag me. At night I to bed with it and usually end up with it out. But it does help. I just wish there was something to take the edge off. It does wear me out. I get so tired of it. It is nice to talk with someone that feels the same. Thank you for your reply.
Pamela Olson said:
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.
Know the feeling. Open surgery for TN about 6 years ago and it came back about 2 years ago. Had cyber knife this time, took about 2 months before I was pain free then it was all good, until...noticed my top lip on the right side was a little numb and then it began to travel until now the entire right side is numb, or, painfil numbness. Currently on Lyraca and Cimbolta and Vicodin. A little relief for a short time and then it's back. Talking about Lidocane infusions now so we'll see what happens.
Oh, I am so sorry you are in this bad place at the moment… We have all been there, and as you say people who have never experienced this despicable pain don’t understand… It is indeed a lonely road we walk, but as you see by the replies you are absolutely not alone, thank god for this site, here we understand, we can sympathise, we come up with helpful hints re medication we have tried, we give love and support and I believe one day there will be a cure so no one else has to have TN. Hope to hear a happier message from you soon, thinking of with love Anne
I just read your story. I have not had any invasive procedures for my ATN and atypical GN. I was strongly advised not to do anything by a neurosurgeon recommended on this site at the Tampa USF teaching hospital. He did not want to risk making me feel worse. I am interested in PNS, peripheral nerve stimulation or motor cortex stimulation for facial pain. I will have to travel to a pain clinic north of me or on the other coast of Florida to find someone that does this. Right now, taking the usual meds prescribed, gabapentin, baclofen and amytripiline, have failed on so many like lyrica and tegretol. Don't give up I say to myself every day and I too have grandchildren I love to spend time with. Sharon
santafered said:
Our situation sounds very much alike. I to refuse to give in. But every once in a while I have a break down. I also think when I get too tired it is much worse. And maybe that is because I'm older. I love to sew, but don't always have something to work worth. I do find If I keep busy, I can keep my mind off of it to a certain point. Eating is a real problem. Hot or cold, etc. Nothing crunchy goes into my mouth. I have terrible sleeping habits. Lucky to get 4 hours. And after several weeks of that I get way to tired and in lots of pain. By the end of the day, it's worse. At this stage of my life, I live for my Grandkids. They are everything to my husband and I. My youngest is 5 and she is our only girl and she is the only one that is allowed to touch my face. I also grit my teeth at night and during the day. I think it's because of the pain. I use the cheap kids sports mouth pieces that you boil. They help me, but can't wear during the day, they gag me. At night I to bed with it and usually end up with it out. But it does help. I just wish there was something to take the edge off. It does wear me out. I get so tired of it. It is nice to talk with someone that feels the same. Thank you for your reply.
Pamela Olson said:
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.
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.
Oh, I am so sorry you are in this bad place at the moment.... We have all been there, and as you say people who have never experienced this despicable pain don't understand.... It is indeed a lonely road we walk, but as you see by the replies you are absolutely not alone, thank god for this site, here we understand, we can sympathise, we come up with helpful hints re medication we have tried, we give love and support and I believe one day there will be a cure so no one else has to have TN. Hope to hear a happier message from you soon, thinking of with love Anne
Just want to let you know that the peripheral nerve stimulator is implanted just under your skin. The surgery is out patient, and the surgeon does not go near the nerve itself. I see you are on Medicare, and I have heard that this is covered . I understand your reluctance to have another procedure, but I do hope you investigate the PNS. It works so well for me on the pain in my head face and teeth, I would recommend it to everyone.
My neurosurgeon , Jeffrey Brown , in New York, is one of the few doctors using this for TN. I see that you are in PA, so perhaps you would be able to see him? He is an expert in TN and all its treatments.
Christine
santafered said:
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!!!
I had a couple of treatments. Ins didn't cover the $75 per visit charge. Got a couple of questions for you. (1) How many treatments did you have before they began to take effect? (2) Where did they place the needles? (3) Was this an American doctor or was it a foreigner?
One thing I don't hear much talk of is Keppra. My wife take 2000 MG of it along with amitriptyline and it seems to help. She has OK days and then not so OK days. She had her MVD surgery done at UPMC Pittsburg PA. It was preformed two years ago November 2011. She had great success for a year 1 1/2. Now she has type 2 TN or (atypical) whichever you prefer. We visited a Dr. here recently and he proposes another MVD along with Internal Neurolysis. He has done many of these with great success (so he says). She is not ready to have another MVD just yet. She is scheduled to have Cyberknife done in January. We will see how it goes. Praying for you all to have any type of relief.
I had a couple of treatments. Ins didn't cover the $75 per visit charge. Got a couple of questions for you. (1) How many treatments did you have before they began to take effect? (2) Where did they place the needles? (3) Was this an American doctor or was it a foreigner?
I had 10 to 15 treatments. The pain was significantly reduced after the first session. The doctor was Chinese. His office is located in Maryland just out of D.C. He placed the needles all over my body as well as on the face in in the ear. He also help with my sciatic nerve issues. Insurance coverage is an issue with insurances. However, acupuncture is becoming more accepted and insurances will sometimes cover 1/2 of the treatment. Perhaps is you get a prescription from the doctor in advance.
Jimmy Works said:
I had a couple of treatments. Ins didn't cover the $75 per visit charge. Got a couple of questions for you. (1) How many treatments did you have before they began to take effect? (2) Where did they place the needles? (3) Was this an American doctor or was it a foreigner?
If you are in significant pain, your doctor may be able to provide additional treatments or medications to ease the pain. A doctor visit may be helpful. Good Luck! The pain is unbelievable unless you have experienced it. Heating pads help and ice packs help. I even put ice in under my gums or hold as warm as possible water in my mouth. Pressure with your figure just where you jaw opens can help. I feel like my face swells and it applies more pressure to the nerve and that is when I use heat and cold treatments. I sometimes lay on a heating pad or ice pack making sure that just behind my ear receives heat or cold.
Just read your post, you are in New York....I am in Florida so I would need to travel. It is being done on the east coast, I am on the west coast so most likely will travel there for a consult. Your story about how your pain is controlled so well by it is encouraging. Thank you, Sharon
It seems everyone has different results from the same treatment when it comes to TN. I would venture a guess that the treatments of this disorder are still in the "not so sure" stage. TN is such a varied disorder, drs and surgeons just do the best they can. Rightly or wrongly, that's my assessment. I had the Cyberknife too. I had had a Gammaknife done 9 years before with excellent results. Was pain free for 9 yrs. Then Wham-O...big time unbearable pain that would make a person do absolutely anything for relief. The Cyberknife (for me) took away most of the pain but left my face numb. You wife may have to just get ready for that. But like I have always said....what do you want?....live with that pain or numbness. I vote numbness. Of course, the amount of treatment she gets will determine. Some get a higher level dosage of it than others. After a couple of weeks, I had to return to my neuro and he prescribed same meds I took before the CK. Over time that had to be increased. Also, Lyrica was added as I also now had neuropathy from the CK. Recently I have added Amitriptylene. The combihnation has helped reduce all the tingling, shocking, stinging to a tolerable level -----even though I am numb. Go figure that. Its now been 4 yrs since the CK. I've reduced the Trileptal by 1/2. The CK was worth it....at least to me it was. Others have not liked it . It all varies. They just do the best they can. Be thankful, and prayerful, that we have good med care here in the US. At least for now. Who knows whats going to happen under O-care. My guess is it will NOT be good. Tell your wife to be patient and follow directions. If she isn't happy with one neuro, see another. That's what I did and she added the Amitripstylene and told me to try to reduce "some of that other stuff", which I did. I am much better after reducing it than I was on heavy dosages of Trileptal. Good luck, and may God bless your wife, and the surgeon's effort to help her.
Spike said:
One thing I don't hear much talk of is Keppra. My wife take 2000 MG of it along with amitriptyline and it seems to help. She has OK days and then not so OK days. She had her MVD surgery done at UPMC Pittsburg PA. It was preformed two years ago November 2011. She had great success for a year 1 1/2. Now she has type 2 TN or (atypical) whichever you prefer. We visited a Dr. here recently and he proposes another MVD along with Internal Neurolysis. He has done many of these with great success (so he says). She is not ready to have another MVD just yet. She is scheduled to have Cyberknife done in January. We will see how it goes. Praying for you all to have any type of relief.