I had been (very fortunatly) living with TN that had been well controlled by medicine. A new symptom cropped up and my neuro said it appeared to be Trigeminal in Nature. I was investigating this pain and waiting for a neuro appointment when I stumbled upon this site. The pain is high on my head and I did not realize that the Trigeminal nerve went up so high. I of course thought it had to be something else since my meds were taking care of my facial and ear pain except the occassional break through zap (a few more in stormy weather).
This site helped me understand how varied TN can be. Instead of the electric shock and buzzing that I normally experience. This new pain is searing. I had a preconceived notion that if it was TN it would be like my prior pain.
I’ve had TN for 10 years or more and finally had cyber knife surgery two years ago. With very little medication I have experienced little to no pain since my procedure. In the last few weeks I have developed numbness from top of my head to my lower jaw on the right side. A MRI did not reveal any problem. With no feeling I can’t taste and I keep chewing up my mouth and lip! Now it’s affecting my right eye and my teeth. Dr’s tell me I just have to live with it. Joined this site just to get more information from other TN patients.
I am soo sorry to hear about that Ken. I cannot taste on my right sight either or feel my tongue. It's only partial numbness tho on my face. The only thing with my eye is I cannot feel tears come out of it. That's been a more recent development. Still...I kinda get how you feel.... Min
When I aske my doctor what I could do about biting my tongue? He said slow down when I eat... :~ :(
It was the same for me. I kept looking for information on TN and this site kept popping up and I also realize that I am not the only one going through this and LwTN also showed me that I can live with TN and still be productive and grow as a person. Thank you LwTN and it's members!!
I think I was in the same boat as most of us in here. I was feeling like I was the only person who had this disease. I think I found the site by just keeping on looking for information. When I did find it through all my dispair and lack of friendships (you do learn who your friends are); but I can imagine what it must have been like for them. I needed someone who would understand so that I would not feel so alone. I was desperate. This site probably saved my life. SAVED MY LIFE!
I've been going thru jaw pain most of my life with TMJ caused from an accident when I was 10. I usually didn't say much because people could not understand how I could look so normal and be in really bad pain most of the time. I also didn't want people to avoid me because of being a 'downer' so I kept it all to myself. Then suddenly the pain worsened and I couldn't get any help whatsoever. I finally went to my regular doctor two months ago and told him how much my face was hurting and how I finally figured out it wasn't from muscle pain and he sent me to a specialist. I will be starting dialysis soon and am looking for a kidney donor, but I couldn't take any antiflammatory drugs for the TMJ. I found Tegretol was something I could take. The specialist will help me figure out the dosage gradually. I thought there wasn't anyone going through all of this until I met a guy at work who saw me putting a cold glass onto my face. He has it also and told me about this group. I finally have found others like me!!
I found this site recently and the only reason for joining is to help those who are in pain and think that Tegrital or Microvascular Decompression or gamma knife suggested by Allopathy are the only possible remedies. Please see my story in my profile to understand what I went through and how acupuncture helped me come out of this painful condition called Trigeminal Neuralgia. To all those who are experiencing TN please look back into history and recollect if you had any dental problems or cosmetic surgery or any form of hard hit on the face or head. To me TN seems to be a condition that we develop (and not a disease) out of an incident from the past. In my case it was root canal done to one of my tooth (the premolar). The tooth was exerting pressure on the nerve and extraction of the tooth helped relieve me of the pain. I would be glad to help anyone who is seriously searching for a cure and is keen on trying anything non-invasive including alternate forms of medicine.
I agree Ramakrishna, mine developed after a minor cosmetic procedure to my upper lip for a thread vein. A powerful laser was used to blast the vein away this resulted in a TN attack within 48 hours. I had never had TN before. Most people say it is not possible for this minor procedure to cause TN, I disagree. Thankfully with meds and Magnetic Treatment I am no longer in pain some minor aching but I can live with this. I know my situation and cause is different and therefore Magnetic Treatment may not help everyone but I do think it helped me. I enjoy this site because of being able to read blogs like yours and others where TN was caused by an incident rather then a condition and therefore treatment may be different. My Neuro did say TN can be caused by many things.
i joined this group wen one day i was feeling very isolated with no one around me to understand from what i was going through.i felt like how to survive with this tn pain.i googled this and got the answer as 'lwtn'.
I appreciate the caring testimonials... and if I may without seeming ungracious, I would gently remind everyone that "it's not about me" and I don't know it all. My personal investment in places like Living with TN is on my wife's behalf. I've been studying both medical literature and patient reports for about 17 years , and I'll make that background available on your behalf as well as hers. But I am constantly learning from patients, even as I work on your behalf.
Go in Peace and Power
Red
Jackie said:
I agree, big kudos Mr Lawhern!
Dana Nelson McCullah said:
I typed Trigeminal Neuralgia in my facebook search and it led me here. I am so thankful it did because I also thought I was alone. I also have a big thanks to Red for everything he does on here and the support he gives!
After 8 yrs of remission, my TN returned 2 yrs ago and I was desperate for information, I never really educated myself when I was first diagnosed as I had other neurological things going on that took precedence.
I too feel less alone in this pain knowing I’m not alone. It does make a huge difference Jackie!
(( hugs )) to all,
Mimi
Knowing I was all alone in real life dealing with TN, except for the support of my husband who is about burned out with being both dad and mom. finding this was like a gold mine to me. For the first time in almost 6 years of this awful journey I found I wasn't alone. This site has been a life saver for me. A comfort, people who understand, have suggestions that really apply because they have been through "it". I do not feel like a "freak" here. Thanks so much for the realness and openness here. blessings~~
all i can say about this site is thank god you are all here for me and other people who has this horibile pain because nobody knows what it like unless they have it.in the village were i live no one even heard of it till i had it.i cant even get disability because they think its just a headache.thanks to every one on here you have all helped me out a lot when iam in pain and i can talk to you xxxx