Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!
It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.
Your turn! What has Ben’s Friends meant to you?
When I first joined the Bens Friends group for Trigeminal Neuralgia, I was immediately welcomed by some of the members. I was brand new to this awful condition; in fact I hadn’t even been officially diagnosed yet! The members were, and continue to be, supportive, informative, and a source of strength and comfort. I would particularly like to thank Red Lawhern, as his advice was often invaluable to me.
Being diagnosed with a rare and complicated disorder can be very daunting, as there is often little to no information readily available to patients. Through this forum I was able to learn about TN, the treatments available, and the doctors that patients would recommend, based on their experiences. All of this information was invaluable to me as I made my decisions about my health, and I am very thankful that I found Bens Friends!
Christine
I have been a member of livingwithtn for two years. I joined shortly after ATN came back for my second time. I felt like I was home. I had no idea I could connect with so many other wonderful people that share this horrendous affliction. I have relied on the advice and support from people on this website very heavily at times.
On those long sleepless, and very painful nights, when I know that not even going to the ER would bring relief the company of my fellow sufferers soothed my soul a little. To be perfectly honest I don't know what my mental state would be like today if I hadn't been able to learn and share so much about trigeminal neuralgia. Not only has this website given me a place to feel welcome, included and sane but it has also allowed me to give back and spread awareness and knowledge to new members. 99% of what I have learnt about TN has come through talking with other people. It is an invaluable resource for the rarest of the rare folks that we are.
I would also like to thank Red. He was one of the first people that I relied on for advice and detailed information about statistics, testing, specialists and treatments.
I have noticed that this website is going through some changes, which I welcome greatly. I feel like it has "lost its luster" over the past year or so. It is so unbelievably important that we become our own best advocates, our own specialists, fight for information, education and change. Not only for ourselves but for everyone that comes in behind us so that their experiences can be better then ours.
Jane
I was very happy to find this site and felt very welcome. It is nice to have a place to go where people really understand the pain and the frustration of trigeminal neuralgia. It is nice to read what others post about what has worked for them, both in instances where they have found relief through surgery, or how they have learned to live with this condition. I started dealing with it over 25 years ago when I was 33. They tell me i was young...thankfully I had 2 - 3 years of remission at that time, and only in the past 10 years did the pain become more constant, until finally I had MVD surgery. It worked for seven months and then came back. This year in July I had surgery for Eagle syndrome which helped relieve my constant headache, the feeling of an icepick jammed in my ear, and I am able to fully turn my head, but unfortunately was not my miracle for TN relief. I am thankful that my anti-seizure drugs work well even though they reduce me to a fuzzy brain with little stamina, but it is better than the pain. It took some trials with different drugs to find one I tolerate pretty well.
I appreciate this site because the people seem to be very sincere and really care, so thanks Ben and keep up the good work!
Hopeful
Very well said,
justjane37 said:
I have been a member of livingwithtn for two years. I joined shortly after ATN came back for my second time. I felt like I was home. I had no idea I could connect with so many other wonderful people that share this horrendous affliction. I have relied on the advice and support from people on this website very heavily at times.
On those long sleepless, and very painful nights, when I know that not even going to the ER would bring relief the company of my fellow sufferers soothed my soul a little. To be perfectly honest I don't know what my mental state would be like today if I hadn't been able to learn and share so much about trigeminal neuralgia. Not only has this website given me a place to feel welcome, included and sane but it has also allowed me to give back and spread awareness and knowledge to new members. 99% of what I have learnt about TN has come through talking with other people. It is an invaluable resource for the rarest of the rare folks that we are.
I would also like to thank Red. He was one of the first people that I relied on for advice and detailed information about statistics, testing, specialists and treatments.
I have noticed that this website is going through some changes, which I welcome greatly. I feel like it has "lost its luster" over the past year or so. It is so unbelievably important that we become our own best advocates, our own specialists, fight for information, education and change. Not only for ourselves but for everyone that comes in behind us so that their experiences can be better then ours.
Jane
For me, the single most important thing to come from the forum has been the comprehensive knowledge of all the little everyday symptoms, of both the drugs and TN. When I was first struck with the disease, I had no idea what was 'real' and what wasn't, and the doctor and dentist were no real help; they only had the sketchiest knowledge of the disease. Had I not been able to run all the sensations and triggers I got in my mouth past other members I would never have been able to discriminate between what was tooth pain and what wasn't. Only fellow-sufferers have this kind of grass roots knowledge.
Sadly, even experts like neurologists have very limited knowledge of this disease and I would have floundered around far more in anxiety and panic without other people's reassurance that my symptoms, and responses to the drugs, were perfectly normal.
To this day, my doctor has no real knowledge of, or even belief in, what anti-convulsants can do to you, side effects-wise. It is therefore greatly reassuring to be able to come here and ask for help and know you are not going out of your head when you have things like hallucinations or feel bi-polar when you increase/reduce medication.
Had I been completely alone with this disease, and the virtually complete lack of knowledge or information about it, I think suicide would have been a very real danger - so the forum has been absolutely, and literally, priceless for me. A true life-saver.
Hello.My TN problem began in 2005 and I dealt with TN until November 7,2013,when I had a Gamma ray procedure.Until the Gamma ray was done I used tegretol to help with the terrible pain.So far things are going good. I used to take 800 mg of tegretol a day.I was groggy and tired most of the time because of the carbamazepine ,(generic for tegretol). I believe my problem started after a dental problem I had,which involved extractions.I may be wrong ,but I have heard TN can be aggravated by dental procedures.I didn't want to get an MVD because of the down time involved,but if the gamma ray wasn't available,I would have gone ahead with the MVD.Well ,it's been a year with no pain,thank God, and I hope things stay the same. Good luck to all and thanks for listening.........Dave W
The TN forum has been a comfort when I needed to share my story,and I am very thankful.
Only TN sufferers understand how important this site is, not many people have even heard what TN is. When I found this sight and heard other stories like mine, I can’t say what it meant to me. I wanted to give up many times when people and doctors look at you like, you aren’t hurting that much, sure !!! life gets very bleak sometimes, isn’t worth living in this much pain, but all these people understand. I go to this sight to see what my fellow TN sufferers May of found a treatment that I may try. Thanks Ben’s Friends
Great stories, lets keep them coming!
Hello All,
I am Kay-La from Houston, TX. Quick version of my TN nightmare. A Dentist compromised my left trigeminal nerve when he pulled molar 15. Pain immediately started radiating from my tooth cavity to under my jaw. My face, neck and chest turned red. This took place in May of 2012. I too went to Doctors to Doctors before I was diagnosed over a period of six months. I found the best Neurosurgeon, Dr. Dong Kim in the Houston Medical Center who specializes in treating TN. This Neuro industry has to follow protocol and I received two gamma knife surgeries and neither did nothing for pain. In the interim I was sent to pain Doctor to work with me to try to give me some relief. Now listen to me, opiods do not work on trigeminal. Only antidepressants cut nerve pain. I ended up having an MVD last May and it has helped. I have had to adjust my life, no stress, plenty of rest and life balance. I am able to work thank God. I had hoped I could get off all meds but unfortunately not. I want to encourage you all that you can and will make it through this if you have the medical resources and family support. Feel free to ask me any questions. Oh by the way I have TN 2, the worst kind. Stay strong because there are treatments to help you. God bless you all.
"Oh by the way I have TN 2, the worst kind."
I'm sure you didn't mean this the way it came out, Meridians, but I don't think you can define one kind of TN as the worst kind. Everybody's suffering is unique; having TN1 is no walk in the park either.
Meridians said:
Hello All,
I am Kay-La from Houston, TX. Quick version of my TN nightmare. A Dentist compromised my left trigeminal nerve when he pulled molar 15. Pain immediately started radiating from my tooth cavity to under my jaw. My face, neck and chest turned red. This took place in May of 2012. I too went to Doctors to Doctors before I was diagnosed over a period of six months. I found the best Neurosurgeon, Dr. Dong Kim in the Houston Medical Center who specializes in treating TN. This Neuro industry has to follow protocol and I received two gamma knife surgeries and neither did nothing for pain. In the interim I was sent to pain Doctor to work with me to try to give me some relief. Now listen to me, opiods do not work on trigeminal. Only antidepressants cut nerve pain. I ended up having an MVD last May and it has helped. I have had to adjust my life, no stress, plenty of rest and life balance. I am able to work thank God. I had hoped I could get off all meds but unfortunately not. I want to encourage you all that you can and will make it through this if you have the medical resources and family support. Feel free to ask me any questions. Oh by the way I have TN 2, the worst kind. Stay strong because there are treatments to help you. God bless you all.
Just wanted to add to thos thread that I have both type 1 and type 2. They both are.miserable. The jolting lightning bolts of type 1 are the worst pain I’ve ever experienced and were not helped longterm by mvd surgery but are kept at bay by anti-seizure meds that make me feel fuzzy brained, lethargic and forgetful. Type 2 is less achy and painful on the meds, but a constant tingling and aching which I need to take a low dose of opiods which do help me even tho’ I keep hearing they don’t work. I only take them when it feels like the type 2 is ramping up.
They are both miserable and in varying degrees for each of us. Let’s not bicker because some one didn’t use the exactly the right words to describe their situation. That said, let’s be sensitive that some of us are in more or less pain, and frustrated overall with this very difficult condition.
Best to all of you.
I'm sorry that you feel that me disagreeing, very politely, with the notion of Type 2 TN being the "worst kind" is "bickering", Hope, but I'm afraid I don't agree with your take on my comment either. I don't want to derail this thread, which is supposed to be about what the forum means to us, but nevertheless I uphold the right to express my opinion on something that I consider to be unhelpful; that being the sadly too common idea that one type of TN is worse than the other.
Hope said:
Just wanted to add to thos thread that I have both type 1 and type 2. They both are.miserable. The jolting lightning bolts of type 1 are the worst pain I've ever experienced and were not helped longterm by mvd surgery but are kept at bay by anti-seizure meds that make me feel fuzzy brained, lethargic and forgetful. Type 2 is less achy and painful on the meds, but a constant tingling and aching which I need to take a low dose of opiods which do help me even tho' I keep hearing they don't work. I only take them when it feels like the type 2 is ramping up.
They are both miserable and in varying degrees for each of us. Let's not bicker because some one didn't use the exactly the right words to describe their situation. That said, let's be sensitive that some of us are in more or less pain, and frustrated overall with this very difficult condition.
Best to all of you.
I felt very welcomed by the members of Ben's Friends. Red gives great insight and guidance. It helps a lot to know that I am not the only one in the world suffering day to day with chronic pain.
Hope said:
I was very happy to find this site and felt very welcome. It is nice to have a place to go where people really understand the pain and the frustration of trigeminal neuralgia. It is nice to read what others post about what has worked for them, both in instances where they have found relief through surgery, or how they have learned to live with this condition. I started dealing with it over 25 years ago when I was 33. They tell me i was young...thankfully I had 2 - 3 years of remission at that time, and only in the past 10 years did the pain become more constant, until finally I had MVD surgery. It worked for seven months and then came back. This year in July I had surgery for Eagle syndrome which helped relieve my constant headache, the feeling of an icepick jammed in my ear, and I am able to fully turn my head, but unfortunately was not my miracle for TN relief. I am thankful that my anti-seizure drugs work well even though they reduce me to a fuzzy brain with little stamina, but it is better than the pain. It took some trials with different drugs to find one I tolerate pretty well.
I appreciate this site because the people seem to be very sincere and really care, so thanks Ben and keep up the good work!
Hopeful
I was just bearing the pain. I had a car accident. I did titanium implants before the accident, that were knocked out. I need bone grafts. The right side pain is unbearable at night. My neurologist gave me Topurimate, but it helped with headaches, not jaw pain. I had MRI's showing C-5 and C-6 no spacing, which they had told me after the accident I had bulging discs with annular tears. Slowly the discs would degenerate and the pain in the neck would get worse. I had been reading about the vagus nerve, which is like a big tree with nerves from the top of the head in the spinal column down through your spinal column branching out, to your stomach. I have had jaw pain, throat pain, heart pain and stomach pain simultaneously.
I went to the pain center and was given gabapentin (neurotin) for the lumbar back pain and sciatica leg pain I also had.
Miraculously, all the other jaw, neck (and heavy mucus accumulation spit) heart and stomach problems went away too. I cut the dosage on the neurotin and topurimate because they are both seizure meds and reinforced each other. The gabapentin I take in the afternoon evening. I am doing much better, no jaw pain at night. No 10 pillows in my bed!
For me, this site provides validation that the pain I feel is real and not my imagination. I sometimes think my co-workers, friends, even family think I'm making it up to get out of work or something similar. Because my pain comes so infrequently I might be off this site for months. When the pain hits I come back here to look for similar stories, again, so I can find people who know what I'm feeling. I also ask questions fairly often. Just last week I asked about my sudden onset of bi-lateral pain and what might have caused it. I got some great response, especially from Red.
Even after all these years with TN (30 years), I still sometimes doubt the source of my pain is TN. As I write this I have a sharp pounding behind my right eye that radiates down to my cheek and into my ear. That's not a usual symptom and while I'm sure it is TN, I still allow myself to doubt. Coming here alleviates those doubts. I also come here to offer support and sympathy and hope to those who suffer terribly all the time.
Thank you for providing this site. It is very, very important to many of us.
Dave W. said:
Hello.My TN problem began in 2005 and I dealt with TN until November 7,2013,when I had a Gamma ray procedure.Until the Gamma ray was done I used tegretol to help with the terrible pain.So far things are going good. I used to take 800 mg of tegretol a day.I was groggy and tired most of the time because of the carbamazepine ,(generic for tegretol). I believe my problem started after a dental problem I had,which involved extractions.I may be wrong ,but I have heard TN can be aggravated by dental procedures.I didn't want to get an MVD because of the down time involved,but if the gamma ray wasn't available,I would have gone ahead with the MVD.Well ,it's been a year with no pain,thank God, and I hope things stay the same. Good luck to all and thanks for listening.........Dave W
I am new to this website but am grateful that I found it. I truly think that we need to get the word about TN out there. No one seems to have heard of this terrible condition. We need to have someone that has alot of pull to get this out there to every one world wide. Maybe then more light would shine about doing more research and finding a cure for us "rare" people. I don't want to be kept on the rear burner (if on any burner at all), I want to be up in front. I want everyone to know what TN is and what a cruel condition it is. How dibilitating it is. I havent't been able to eat normally in over a month! I long for some good normal food. Not pureed veggies and fruit that I can almost suck through a straw (because I can not always to that). I don't mean to babble on but we all need to spread the word about this. If any one has any ideas post them. Oprah or Dr. Oz could be some good examples of spreading the news. Both influential people both with highly watched shows. I mean, who knows. I do know one thing, I am SICK of suffering.