What is Trigeminal Neuralgia?

Send an email and I'll add your entry

Directory

Trigeminal Neuralgia Association (UK)

TNA-UK web links

Trigeminal Neuralgia Association (USA)

 

 

The American Pain Foundation

University Neurosurgery (Gamma Knife) Louisiana

Stop Pain at Beth Israel Medical Center

John Hopkins Medicine Stereotactic Radio Surgery (USA)

Centre for Cranial Nerve Disorders

University of Florida Neurosurgery Dept

Cyber Knife® Society

Mayo Clinic Rochester Minnesota (USA)

Triad Chapter Support Group Eastern North Carolina

MidMichigan Health Care

Centre for Stereostactic Radiosurgery Sheffield UK

Wake Forest Facial Neuralgia and Hemifacial Spasm Center North Carolina

National Library of Medicine Interative TN Tutorial

Patient UK

National Fibromyalgia Association (U)

Arteriovenous Malformation Support (UK)

The Organisation for the understanding of Cluster Headaches (UK)

 

 

Submit News and Pictures

You can now submit articles and content for free inclusion at scads.co.uk using this link.

Website Feedback:

Additions, comments or corrections, please send them to:
admin@scads.co.uk

 

MYTN - The Trigeminal Neuralgia
Guest Book

If you would like to add your story to this then send me a email and I will add your entry.
simongregson@yocc.co.uk. These are quite old entries, but I'm sure that they may be of help to you.

 

Name : Goldie <goldie@threebears.org>
Age : 56
Gender : Female
Location : London, England
How long have you had TN : On and off for 41 years approx - but not any more!
Have you had an operation - if so which? : A treatment not an op - but it really works!
Comments : This is the first time i've visited this website and I have seen no mention of SCENAR therapy. Since I feel so incredibly fortunate at having found a way out of the TN trap, I feel that I really must pass on to others the route I found out of that awful condition. I suffered for many years from the agony of attacks of TN, I had felt desperate and suicidal, I had seen a neighbour undergo surgery on his trigeminal nerve in an attempt to stop the horrendous pain (it did stop the pain though he has numbness on his face). So imagine my joy and amazement and incredible relief when after some research and in desperation I went to a doctor in London who treated me with a Scenar device and after nine treatments I am totally without pain or symptoms!! (The pain was significantly diminished even after one treatment) I wish my neighbour could have tried it before he underwent surgery. Scenar (also known as Kosmed) comes from Russia, which is why it has only recently attracted attention in the West. There had been a bias against technology coming from the Soviets. It is used in Russian hospitals not only to treat neurological complaints but has had success with seemingly non-neurological complaints. Now it is undergoing trials in a number of US hospitals and there are practitioners in Canada as well. I chose to go to a practitioner who is also a doctor - I would highly recommend her if you live in this area (North West London), but I'm sure any well trained practitioner would be able to help you. This treatment is non-invasive, the practitioner first takes your medical history and then takes readings from around your spine and various nerve endings using the Scenar device. As I understand it according to where the readings are highest the scenar device uses a light electrical current (that imitates the body's own electrical activity), which is adjusted so you don't feel it. This stimulates the various points on the body which in turn causes impulses to be sent to the brain and trigger a healing response. This way the practitioner actually responds to what your body is 'telling' the device - it is very intesting to watch this process. You can find out more about it by doing a websearch or look on these UK sites: www.scenarworld.com and for kosmed :- http://www.wholisticresearch.com/in....php3?artid=108 I urge you to consider this. You have nothing to lose but the pain and the well deserved payment to the Scenar practitioner. If I can be of any help email me and I wish you all good luck with getting rid of the pain.
Date added - Wednesday, January 26, 2005 at 03:25:31 (GMT)


Name : Bridget Kelly <support@opuslinks.com>
Age : 34
Gender : Female
Location : USA
How long have you had TN : 9 years
Have you had an operation - if so which? : Motor Cortex Stimulation for STN or Trigeminal Neuropathy
Comments : Hi-Tina is great-see her story. I am writing to tell people about a new website: Motor Cortex, Deep Brain, Spine & Other Stimulation: A Headquarters, Support & Research Group www.opuslinks.com It will be posted to the web later this week. I hope I can help. I am looking for INTERNATIONAL WEB PAGES OF MAJOR CENTERS OFFERING STIMULATION FOR PAIN. I had Motor Cortex Stimulation at Cleveland Clinic in October 2003-Dr. Jaimie Henderson and Ali Rezai. Stimulation of the brain or pheripheral stimulation seems to work. I have an 80% reducton in nerve pain. I am on no meds. Thanks and good luck. BKelly
Date added - Wednesday, January 12, 2005 at 05:24:07 (GMT)
Name : Tina <tinamae727fl@_yahoo.com>
Age : 38
Gender : Female
Location : Daytona Beach fForida U.S.A.
How long have you had TN : SINCE 1999
Have you had an operation - if so which? : a stim implant
Comments : i was hit by a semi 18 wheeler while stopped in a school zone behind other cars.my lower jaw was broken in 3 places. i have no memorie of the accident or the 6 days in the e.r. my jaw was wired shut for 16 weeks.the pain started when the accident happened and just grew worse. after the 16 weeks the wires came off and i lived with pain for about 4 months when the dentist did x rays and found my jaw still broken. i went to oral sergon who put my jaw toghter with steel plates and screws. i have plates on both sides of my lower jaw. the dr. cut all along the inside of mouth along the gum line and flipped my skin back. put the plates in then gave me mega stitches and i was wired shut agian for 24 weeks. ok let me explian the type of pains. a stinging numbing heavey feeling. and moving on to a zapping firey unbearable hell. i ended up with atypiacl t.n. and anesthisea delorosa and t.m.j.i went threw all sorts of meds neruotin zanaflex even hooked to a morphine drip. nothing worked. it just puts a big mask on the pain. the pain is still there olny too drugged to know. finaly i found a god send dr. who decided to try a spine cord stimulatro. it works on spines, and other body parts. but has never been implanted for jaw nerve. i said lets do it. it has been almost 3 years and i am free of the fiery eletrical zapping. i can eat drink hot cold stuff. i can kiss be kissed on face, can go outside without a kercheif around my face. do not drool . drink from a glass. i have been giving my life back. i was one of the frist people in u.s. to have this implant but since me it is becomming more common. i had to go to jury trial to prove not olny my atypical t.n. but to prove this implant was nesscary and helps and is not voodoo surgery. a jury saw things in my favor. all along i was hoping everything i was going threw would help just 1 other person. and being the first to try something new well if nobody is the first nothing would get done and nobody would find help. if anyone needs more info or has questions please email me. ps my surgey for stim implant was a same day surgery.
Date added - Friday, January 07, 2005 at 15:11:30 (GMT)
Name : Laura <chapman.family3@_ntlworld.com>
Age : 33
Gender : Female
Location : Surrey, UK
How long have you had TN : 3 years
Have you had an operation - if so which? : not yet!
Comments : Hi, I have had TN for 3 years. My story starts as so many sufferers do, by what I thought was a tooth/gum infection. Lots of trips to the dentists / fillings / teeth out, no help. One day I was in so much pain my mum had to drive me to the dentist (a different one!). He took xrays couldn't find anything and suggested I might have TN. He was great, he rang my doctors surgery and told them he was sending me down and I needed to see a doctor immediately. At last, a diagnosis. The pain is in my left hand side of my face. Lower jaw and gums, upper jaw and gums and through my cheek. I have tried tegretol, amitryptolene (apologies for spelling!), baclofen and am now on gabapentin which seems to help. I have pain everyday but for the past 6 months it has been mangeable. What I mean by that is I'm used to always having twinges and short sharp pains through face (I think I've forgotten what it's like to have no pain at all) but the intensity isn't there at the moment. The last huge attack was in April 04 where I nearly overdosed, purely accidently I was pushing the maximum dose of 3 different pain killers to the limit to try and get relief. In the end my husband called an ambulance and I was taken in and given morphine which finally worked. Since then it seems to have died down. Unfortunately though since then I am getting the same breakthrough pains/burning in gums and pains through teeth on right hand side (just great!). (sorry I do go on a bit!). I've had an MRI (all clear) and seem various so called specialists until I decided they didn't know what they were talking about and marched into my doctors, gave her the name of the person I wanted to see and insisted she referred me, which she finally did. Saw a great guy at Charing Cross Hospital who has given me 3 options. Stay on meds, have the injections, have an MVD. So here I am awaiting my next appointment in March 05 when he wants my decision. I really don't know what to do, but I know I don't want to stay on meds forever. I want to have my life back and I want to have another child (I have one daughter) as I've put this on hold as I can't get pregnant on the medication! I would like to say yeah lets go for an MVD but here so many conflicting info on it. It's been really helpful reading peoples stories and I know I'm lucky in the fact mine seems to improve for a while before attacking again unlike some guys who get it constantly. Would love to hear from anyone who has had MVD and if anyone has successfully had a baby suffering with this awful illness. I will keep you posted on my decision as and when and hope that the powers that be find an end to the pain for everyone.
Date added - Thursday, December 30, 2004 at 13:59:05 (GMT)
Name : Brenda <bhneihouse@_bellsouth.net>
Age : 44
Gender : Female
Location : Georgia, USA
How long have you had TN : Two months that I know of
Have you had an operation - if so which? : not for TN
Comments : Be warned that this is a novel, as I am a writer. ;) however, it might be worth your while. :) I am very new to TN. One day, about two months ago, I was eating something and it felt like I had broken a bone in my hard palate on the right side. I didn't think you could break a bone in the roof of your mouth, but that is what it felt like. As I chewed, my right nostril started running, which I thought was very weird. I put it out of my mind. From then on, when I ate, my nose ran and I just forgot about it. Shortly thereafter, I started getting stabbing pains in the right side of my hard palate. It felt like someone was taking pins and pushing them up through the roof of my mouth. Over time, it got worse, you know the drill. Meanwhile, I had oral surgery to extract a tooth that had died, after it gave me a year of hell. I thought the pains might go away after the surgery. They didn’t. One day I was in my car, eating a burrito and a pain so sharp went through my hard palate and into the area above it that I put the burrito in the bag and said, “Eating isn’t worth it.” Much later that day I finally convinced myself to eat something. Last week, I decided to research this pain. I looked at a number of conditions but it wasn’t until I hit TN that I went bingo. You all know, one day you finally figure it out, or your doctor does. As I researched, the more reading I did, the more I flipped out. I felt like someone had handed me a death sentence. The next day I was having pancakes with my daughter at IHOP (for you Europeans, it’s a pancake place ;)). I had the worst episode to date, and my daughter saw it happen (she is 7.) Luckily the waiter was very cool about it and didn’t bring attention to us. I talked to a doc friend, he told me to go to a neurologist. I am going in ten days. He also told me to get a complete workup, to rule out tumors and such. Knowing that the cause of TN may well not show up on an MRI or CT scan is a bit scary. It leaves the diagnosis in the hands of a doctor who has to trust only my version of my symptoms. I know the medications are used to “test” whether or not TN is present. However, I am already on nine meds. I have bipolar disorder (five meds), asthma (two meds plus one as needed), and rhinitis/allergies (one med). One of my bipolar meds is an anti seizure drug but it’s about the seventh line of defense in treating TN, not the first. For people who are on one or two drugs when they start treating TN, I think it’s a bit easier to monitor what meds are working and what aren’t. I already am on meds that are highly toxic and need to be monitored. I have already gone through all the side effects of these meds over a two year period. When I started lithium, I swore I had the flu. I was so sick. My doctor didn’t tell me what I found on the web, that this is very normal and subsides in about four days. After going through all sorts of indescribable side effects of all these drugs, the last thing I am going to put myself through is more side effect hell. I know what yall mean when you talk about living in a fog, or of being so tired you can’t hold your head up. I have taken myself off two drugs for these reasons and told my psychiatrist about it afterwards. You can say I am pretty proactive. I refuse to be doped up and not be able to think. The bipolar has taken many things away, and I have just wrestled back some of my cognitive abilities. I am not giving them up again without a fight. I know that the neurologist will want drugs to be the first line of defense. I know my insurance company will want me to trial out the drugs to ensure I do, indeed have TN before they pay for surgery or other procedures. My only defense in this case will be my psychiatrist, who is also a neurologist. If he will go to bat for me, explaining the drug protocol I am already on, they may buy it. He has gone to bat with the insurance company for me before and won. I have really been through hell in my life. Bipolar is just near the end of a long string of life threatening, damaging, difficult and painful situations. Take my word that you don’t want descriptions. What I learned from all of that is just how much pain I can take. It’s a fair amount. But this condition kicks my butt. My triggers are eating, swallowing, spitting, coughing, talking and brushing my teeth. I am afraid to eat for fear of choking. I am scared to bite into any food for fear of an episode while I have food in my mouth. Until I read some posts I had not even thought about kissing; I am not dating so it’s not an issue now. I am just scared in general about the next episode. I don’t want to eat in public, speak in public or do anything that might trigger an attack in public. What boggles my mind is how God could possibly think I could handle this on top of everything else. God must have some faith in me that I lack. I have always felt that the experiences and pain that I have gone through are there to help other people, and because of this, I have been able to reach out to others. I know there is a purpose to everything, and a plan for my life. I am thankful that others feel their pain might help another and have shared on this website. Hopefully, when I get my head out of the sand of my own pain, I’ll be able to help others. When I read about the link between MS and TN, I immediately thought of Michael J. Fox. I thought of how he has fought to stay active in his field, doing voices for movies, acting when he can. I also think about Chris Reeves. He said something that I put at the bottom of every To Do list. “I see this as opportunity instead of disaster.” When the pain knocks me down, and I cry and scream, I think, it took me a year to learn how to walk again after I was shot, that was a very painful year. It took two hospital stays and almost two years to come close to getting my life back after bipolar broke it in two, and I never thought I would make it through it. It may take up to two years to get custody of my daughter back, and I grieve every single moment of every day but it will happen. Those things remind me that I am stronger than I think. I know I can’t tackle this thing overnight. It’s just going to have to take time. It’s been a bad pain day and I can still write that. Oh my god…I am accepting my lot in life *wink* The last thing I want to say is thank you to everyone for your stories. So many of you have pain in so many more areas than I do. While I know that the pain may be of the same intensity, I know that you suffer more than I. I hope someone out there is researching for all of us, and can give us more information and better treatments. Regards, Brenda
Date added - Wednesday, December 29, 2004 at 04:56:40 (GMT)
Name : Kay Evans <kayevans81@msn.com>
Age : 47
Gender : Female
Location : North Wales(Wrexham)
How long have you had TN : 8-10years
Have you had an operation - if so which? : none
Comments : I have had my worst attacks over the last 5 years. I have the stabbing, electric shocks and twice the pain has been so intense it has actually physically knocked me to the ground. It is not a uniform pain as one day can be completely different from the next. I suppose the most regular pattern I have is the sharp electric shock followed by a spasm lasting anything up to half an hour. During the spasm the pain is so intense I must not speak or move my mouth and just breathe deeply and try to ride the pain. The thing with TN is that the more tense you become the worse the pain is, a vicious circle really. I have had to carry on working through all my attacks as I work for myself, cleaning and only have my wage as I am on my own. I am allergic to all the medications ( I immediately break out in hives). The neurologist has carried out 3 scans and says he can help but I"m not convinced enough by things I've read or heard that this is the answer. I went in the end to a homeopath ( after wasting 200 pounds on accupuncture). Part of the therapy was getting it off my chest. After 3 months it subsided, not sure if just the nature of the condition or the tablets. Was free for 5 months or so then it was back, stayed with the homeopath until this year when we couldn't get any relief for the latest attack. He suggested a cranial osteopath. I wasn't sure as I didn't want anyone touching my head and also with earning very little money I was struggling. Well I went along and met Sally. I had 4 sessions and have been pain free for 10 months, my longest yet. At the present moment I am having a lot of stress with my sons and I know my face is pulling. I am trying to relax, wrap up in the wind,I used to enjoy show jumping but just stick to an occasional hack or gentle schooling of the horse now, I try not to knock or jar myself, I tend to bump into things wehn working, never ever eat on the right hand side, I always chew on the left. Anything like toffes are out or anything that involves a lot of movement of the jaw. This probably sounds a bit garbled but this is how it feels, that so many things happen during attacks etc you feel you need to address it all. I know the next attack will be in the New Year sometime but I have noticed with my condition that the happier I am the less severe it is so I surround myself with people who make me feel happy and I also enjoy my job. Any feel good factors definitely make pain easier to bear. Maybe someone may try some of these things and if you do I hope you get some relief if only briefly, it all helps. Good luck K x
Date added - Thursday, December 23, 2004 at 22:42:47 (GMT)

Name :
Lann
Age : 29
Gender : Female
How long have you had TN : 4-5 months
Have you had an operation - if so which? : none related to this
Comments : I am a 29 yr. old female diagnosed with TN approx. 4-5 months ago. First episode was the most painful to date. I was on so many drugs I couldn't function. Tegretol, oxicodone, and anti-depressants I can't even remember... I was using ambesol (sp?) and suprisingly that took the edge off the really sharp pains. I went to the dentist and endodontist and neither knew what it was and in frustration I made them both have a conversation with my primary doctor. The endodontist gave me a shot of novicane but that did nothing except intensify the pains. Fortunately, I did not go misdiagnosed for long. Intitially, they thought sinus infection & TMJ but I was in too much pain (constant pain) that would come and go in short intervals. I couldn't stand it anymore and walked in and told the doctor that this was more painful than the birth of my son. So, he told me he finally knew what it was and I agree with his diagnosis. The first episode went away about a week later. Thank god for the medicines. However, I had another episode, not as severe, on the left side of my face (opposite side this time). MRI showed nothing. I was put on Neurontin, Amitriptiline, and ultracet (which was a temp. pain reliever). This worked for a while. Now pain is back on the right side and is breaking through the meds. even though the doses have been increased. I'm just now being switched to Trileptol. I hope it works. I like others on this site am going through a rough time in my personal life and it seems at the most stressful points the episodes come on and intensify. I hope this new treatment works and appreciate the stories shared on this site as they help me understand more about this disability.
Date added - Tuesday, December 14, 2004 at 18:25:43 (GMT)

Name : macy <maryluie41@_yahoo.com>
Age : 63
Gender : Female
Location : virginia
How long have you had TN : 4 and 1/2 years
Have you had an operation - if so which? : none
Comments : This is one of the most painful conditions a person can suffer from. Finally thanks to the Internet and people like Simon we TN sufferers can find some comfort from telling our stories and reading the comments from others who suffer along with us. Sometimes the sadness is overwhelming and seeing another person, who has been where I am now and survived, really and truly helps get me through another day. I am so disappointed to find that the web crashers have found our place to communicate with each other and find a little bit of peace, and are trying to cheapen it with their ads, jokes, etc. Let me tell you all (you know who you are), the illness we have is serious and can happen to ANYONE, so lets hope a few months/years from now you won't be looking for a site such as this one to help you through a pain filled night like you cannot imagine. There may not be any sites available because of your selfish inconsiderate conduct. If you have something to sell, go elsewhere. If you have a joke go elsewhere also. WE are in pain, can't you understand that? To Dan, the young medical student: I wish more doctors took an interest in TN.I think you are to be commended for wanting to see TN from the patients point of view. Well, will get off my soap box for now. I am sorry for going off like this, but I have had it with these butter inners and disrespectful people filling up our guestbook with their nonsense. Macy
Date added - Friday, December 03, 2004 at 22:40:09 (GMT)


Name : Dan <xxxxxxxxxxx>
Age : 23
Gender : Male
Location : New York
Have you had an operation - if so which? : n/a
Comments : As a medical student I'm required to know about TN and although I know about it from the medical perspective, it is interesting to see it from the patient's point of view. I think in the rush to treat patients many health care workers forget how detrimental this and other diseases/conditions can be to someone's every day life. Thank you for sharing such a personal experience!
Date added - Friday, December 03, 2004 at 03:42:06 (GMT)


Name : Julie <pjc.atkins@_ntlworld.com>
Age : 39
Gender : Female
How long have you had TN : 17 yrs
Have you had an operation - if so which? : Gamma Knife
Comments : My pain began when I was 22. I am now 39. It stated as a pain occasionally in the nightr that woke me up and lasted around 20 minutes. My husband says I would cry and ask him to hug me. Then around 5 years lster the pain started to come through the day too. It lsted the same amount of time but came around 3 or 4 times a day. I was at my wits end. I didnt see great doctors and I was told there was not much that could be dont except drugs. I was put on Tegretol which didnt help much snd after reading the side effects I stopped it. I was so scared. Then I tried Gabapentin which didnt help either. I tried accupuncture and reflexology. I was on lots of pain killers which did help abit but made me constipated and sleepy. Now here I am age 39, I have tried Gamma Knife surgery which made my pain worse. I am still on lots of painkillers and Carbamazapene. It gets me through the day. Julie
Date added - Thursday, October 28, 2004 at 19:49:28 (BST)


Name : Pam <pamela.frazee@_360.net>
Age : 43
Gender : Female
Location : Seattle, WA
How long have you had TN : 4 years
Have you had an operation - if so which? : no operations
Comments : Diagnosed 2000. Short term episodes, some not even needing meds. However, the prescription of choice at the time was Tegretol. Which helped. Until July 2nd. This is the worst episode I have had to day. Longest as well. Controlled with Tegretol for about 6 weeks. Then it stopped working. My MD decided to switch to Trileptol. Which was a lovely experience for the 1st 24 hrs. Pain came twice a minute. Couldn't work, sleep.. Well you guys know the story. Experiencing dizzy like feelings, inability to articulate and find words at times when speaking. Headaches are now setting in.. started about 2 1/2 weeks ago. As is depression. I hate my life being controlled by this. My doctor says procedures are way down the road for me. In the meantime, will try the prescription cocktails. Nice site.. and informative at the same time. Thanks everyone for sharing .............. Pam
Date added - Tuesday, October 19, 2004 at 21:09:02 (BST)


 <me@me.com>
Comments : Greetings from Poland. Thank you for site! God bless you!
Date added - Tuesday, October 19, 2004 at 19:31:08 (BST)


Name : Gwyneth Simons <flint.cottage@_ic24.net>
Age : 60
Gender : Female
Location : Wales
How long have you had TN : 5 yrs
Have you had an operation - if so which? : No
Comments : The only treatment I have received for my TN is anti-depressants which I don't take now. I'm thinking about trying a TENS type Pen which is available for about 50.Has anyone had success with this or similiar ? My condition is on the right side of my head and face and behind the ear. I suffer a short circuit type experience which affects my eyes and makes me dizzy which is unbearable.My Balance is affected also, but being a strong willed person I'm able to carry on with my life even though it's a big struggle. Good luck everyone. Any comments will be appreciated! Gwyn
Date added - Saturday, October 16, 2004 at 13:23:42 (BST)
 


Name : Jan <hguardian@_sbcglobal.net>
Gender : Male
Location : California
How long have you had TN : 7 Years
Comments : Hello, I have suffered with TN for about 7 years. I have gone to several doctors for this. I took Neurontin and that made me over drugged and I hallucinated. I am now taking Tegretol along with Amitriptylene. I take Darvocet and Prednisone when I am in severe pain. My pain started with an earache that wouldn't go away. I was treated for sinus problems and Migraines. I have my pain on my left and right side. The right side is the most dominant. I very rarely have it on my left side. I have raised 5 children on my on and this has been difficult for them. They can't understand what this pain is that controls my life. They have suffered thorough this with me. I had always worked full time and coached my children's teams. I have not worked for 3 or 4 years now. I have memory loss also. I wasn't sure what was causing that but now that I have read this stories I realize that it must be the Tegretol. I have pain in my right ear and completed right side of my face. Cold air sets it off and makes it worse. Stress seems to add to the pain. I too had TMJ. I'm not sure if that started it . I first had this pain while going through a divorce. Maybe stress brought it on or it just happened at the same time. I spend most of my days inside. I go to my son's football games and try not to take meds before I go because it affects my speech and balance and that embarrasses my children because I look like I'm intoxicated. This has been painful for my entire family. My children are older now but they will never understand what this is and why I am not the same person I used to be. I am lucky to enjoy some holidays but other times I am very sick and can't do anything. There are no doctors here that do any surgery for this. I live in a small town in California. I know of no one personally that has suffered from this so people do not understand my pain.This is a very difficult and life altering illness. There are times when I feel that my life is useless but I love my fami ly so much so I keep on fighting the fight. Jan C
Date added - Thursday, September 30, 2004 at 21:56:38 (BST)


Name :
Carolyn Parnaby
Age : 48
Gender : Female
Location : Northeast England
How long have you had TN : 7 years
Have you had an operation - if so which? : awating op
Comments : Sick of pain cant wait for op worried about numbness of face after though. Carolyn
Date added - Sunday, February 13, 2005 at 21:32:28 (GMT)


Name : lou <turleys>
Age : 33
Gender : Female
Location : surrey
How long have you had TN : 18 months
Have you had an operation - if so which? : none
Comments : after the loss of four teeth 3 root canals many antibiotics for suspected ear infections..! finding this site i realise i am not crazy merley suffering from tn. although i know this is an awful condition so glad to find people who have been through similar experience,and finally have some sort of diagnosis shall see my gp first thing tommorrow any advice on 1st steps of treatment greatley appreciated.
Date added - Sunday, February 13, 2005 at 21:11:55 (GMT)

Name : shannon
Age : 31
Gender : Female
Location : USA
How long have you had TN : 12yrs
Have you had an operation - if so which? : 2 of the MVD's- 2gamma knife's -and 1 percatanous rhizonomy.
Comments : I have bilateral TN, on all 6 branches. None of the sergeries ended up working.
Date added - Thursday, February 10, 2005 at 17:35:41 (GMT)


Name : Jackie <onthebus982001@yahoo.com>
Age : 36
Gender : Female
Location : Huntington, WV
How long have you had TN : 1yr
Have you had an operation - if so which? : Yes, Trigeminal Nerve Decom.
Comments : If I had this disorder (god forbid) all over again tomorrow I would have this surgery again. As soon as I woke from surgery I knew my pain was gone. My recovery was a little shakey as I did experience some brain swelling but it was all worth it.
Date added - Sunday, January 30, 2005 at 16:33:18 (GMT)
Name : Goldie <goldie@threebears.org>
Age : 56
Gender : Female
Location : London, England
How long have you had TN : On and off for 41 years approx - but not any more!
Have you had an operation - if so which? : A treatment not an op - but it really works!
Comments : This is the first time i've visited this website and I have seen no mention of SCENAR therapy. Since I feel so incredibly fortunate at having found a way out of the TN trap, I feel that I really must pass on to others the route I found out of that awful condition. I suffered for many years from the agony of attacks of TN, I had felt desperate and suicidal, I had seen a neighbour undergo surgery on his trigeminal nerve in an attempt to stop the horrendous pain (it did stop the pain though he has numbness on his face). So imagine my joy and amazement and incredible relief when after some research and in desperation I went to a doctor in London who treated me with a Scenar device and after nine treatments I am totally without pain or symptoms!! (The pain was significantly diminished even after one treatment) I wish my neighbour could have tried it before he underwent surgery. Scenar (also known as Kosmed) comes from Russia, which is why it has only recently attracted attention in the West. There had been a bias against technology coming from the Soviets. It is used in Russian hospitals not only to treat neurological complaints but has had success with seemingly non-neurological complaints. Now it is undergoing trials in a number of US hospitals and there are practitioners in Canada as well. I chose to go to a practitioner who is also a doctor - I would highly recommend her if you live in this area (North West London), but I'm sure any well trained practitioner would be able to help you. This treatment is non-invasive, the practitioner first takes your medical history and then takes readings from around your spine and various nerve endings using the Scenar device. As I understand it according to where the readings are highest the scenar device uses a light electrical current (that imitates the body's own electrical activity), which is adjusted so you don't feel it. This stimulates the various points on the body which in turn causes impulses to be sent to the brain and trigger a healing response. This way the practitioner actually responds to what your body is 'telling' the device - it is very intesting to watch this process. You can find out more about it by doing a websearch or look on these UK sites: www.scenarworld.com and for kosmed :- http://www.wholisticresearch.com/in....php3?artid=108 I urge you to consider this. You have nothing to lose but the pain and the well deserved payment to the Scenar practitioner. If I can be of any help email me and I wish you all good luck with getting rid of the pain.
Date added - Wednesday, January 26, 2005 at 03:25:31 (GMT)
Name : Bridget Kelly <support@opuslinks.com>
Age : 34
Gender : Female
Location : USA
How long have you had TN : 9 years
Have you had an operation - if so which? : Motor Cortex Stimulation for STN or Trigeminal Neuropathy
Comments : Hi-Tina is great-see her story. I am writing to tell people about a new website: Motor Cortex, Deep Brain, Spine & Other Stimulation: A Headquarters, Support & Research Group www.opuslinks.com It will be posted to the web later this week. I hope I can help. I am looking for INTERNATIONAL WEB PAGES OF MAJOR CENTERS OFFERING STIMULATION FOR PAIN. I had Motor Cortex Stimulation at Cleveland Clinic in October 2003-Dr. Jaimie Henderson and Ali Rezai. Stimulation of the brain or pheripheral stimulation seems to work. I have an 80% reducton in nerve pain. I am on no meds. Thanks and good luck. BKelly
Date added - Wednesday, January 12, 2005 at 05:24:07 (GMT)
Name : Tina <tinamae727fl@_yahoo.com>
Age : 38
Gender : Female
Location : Daytona Beach fForida U.S.A.
How long have you had TN : SINCE 1999
Have you had an operation - if so which? : a stim implant
Comments : i was hit by a semi 18 wheeler while stopped in a school zone behind other cars.my lower jaw was broken in 3 places. i have no memorie of the accident or the 6 days in the e.r. my jaw was wired shut for 16 weeks.the pain started when the accident happened and just grew worse. after the 16 weeks the wires came off and i lived with pain for about 4 months when the dentist did x rays and found my jaw still broken. i went to oral sergon who put my jaw toghter with steel plates and screws. i have plates on both sides of my lower jaw. the dr. cut all along the inside of mouth along the gum line and flipped my skin back. put the plates in then gave me mega stitches and i was wired shut agian for 24 weeks. ok let me explian the type of pains. a stinging numbing heavey feeling. and moving on to a zapping firey unbearable hell. i ended up with atypiacl t.n. and anesthisea delorosa and t.m.j.i went threw all sorts of meds neruotin zanaflex even hooked to a morphine drip. nothing worked. it just puts a big mask on the pain. the pain is still there olny too drugged to know. finaly i found a god send dr. who decided to try a spine cord stimulatro. it works on spines, and other body parts. but has never been implanted for jaw nerve. i said lets do it. it has been almost 3 years and i am free of the fiery eletrical zapping. i can eat drink hot cold stuff. i can kiss be kissed on face, can go outside without a kercheif around my face. do not drool . drink from a glass. i have been giving my life back. i was one of the frist people in u.s. to have this implant but since me it is becomming more common. i had to go to jury trial to prove not olny my atypical t.n. but to prove this implant was nesscary and helps and is not voodoo surgery. a jury saw things in my favor. all along i was hoping everything i was going threw would help just 1 other person. and being the first to try something new well if nobody is the first nothing would get done and nobody would find help. if anyone needs more info or has questions please email me. ps my surgey for stim implant was a same day surgery.
Date added - Friday, January 07, 2005 at 15:11:30 (GMT)
Name : Laura <chapman.family3@_ntlworld.com>
Age : 33
Gender : Female
Location : Surrey, UK
How long have you had TN : 3 years
Have you had an operation - if so which? : not yet!
Comments : Hi, I have had TN for 3 years. My story starts as so many sufferers do, by what I thought was a tooth/gum infection. Lots of trips to the dentists / fillings / teeth out, no help. One day I was in so much pain my mum had to drive me to the dentist (a different one!). He took xrays couldn't find anything and suggested I might have TN. He was great, he rang my doctors surgery and told them he was sending me down and I needed to see a doctor immediately. At last, a diagnosis. The pain is in my left hand side of my face. Lower jaw and gums, upper jaw and gums and through my cheek. I have tried tegretol, amitryptolene (apologies for spelling!), baclofen and am now on gabapentin which seems to help. I have pain everyday but for the past 6 months it has been mangeable. What I mean by that is I'm used to always having twinges and short sharp pains through face (I think I've forgotten what it's like to have no pain at all) but the intensity isn't there at the moment. The last huge attack was in April 04 where I nearly overdosed, purely accidently I was pushing the maximum dose of 3 different pain killers to the limit to try and get relief. In the end my husband called an ambulance and I was taken in and given morphine which finally worked. Since then it seems to have died down. Unfortunately though since then I am getting the same breakthrough pains/burning in gums and pains through teeth on right hand side (just great!). (sorry I do go on a bit!). I've had an MRI (all clear) and seem various so called specialists until I decided they didn't know what they were talking about and marched into my doctors, gave her the name of the person I wanted to see and insisted she referred me, which she finally did. Saw a great guy at Charing Cross Hospital who has given me 3 options. Stay on meds, have the injections, have an MVD. So here I am awaiting my next appointment in March 05 when he wants my decision. I really don't know what to do, but I know I don't want to stay on meds forever. I want to have my life back and I want to have another child (I have one daughter) as I've put this on hold as I can't get pregnant on the medication! I would like to say yeah lets go for an MVD but here so many conflicting info on it. It's been really helpful reading peoples stories and I know I'm lucky in the fact mine seems to improve for a while before attacking again unlike some guys who get it constantly. Would love to hear from anyone who has had MVD and if anyone has successfully had a baby suffering with this awful illness. I will keep you posted on my decision as and when and hope that the powers that be find an end to the pain for everyone.
Date added - Thursday, December 30, 2004 at 13:59:05 (GMT)
Name : Brenda <bhneihouse@_bellsouth.net>
Age : 44
Gender : Female
Location : Georgia, USA
How long have you had TN : Two months that I know of
Have you had an operation - if so which? : not for TN
Comments : Be warned that this is a novel, as I am a writer. ;) however, it might be worth your while. :) I am very new to TN. One day, about two months ago, I was eating something and it felt like I had broken a bone in my hard palate on the right side. I didn't think you could break a bone in the roof of your mouth, but that is what it felt like. As I chewed, my right nostril started running, which I thought was very weird. I put it out of my mind. From then on, when I ate, my nose ran and I just forgot about it. Shortly thereafter, I started getting stabbing pains in the right side of my hard palate. It felt like someone was taking pins and pushing them up through the roof of my mouth. Over time, it got worse, you know the drill. Meanwhile, I had oral surgery to extract a tooth that had died, after it gave me a year of hell. I thought the pains might go away after the surgery. They didn’t. One day I was in my car, eating a burrito and a pain so sharp went through my hard palate and into the area above it that I put the burrito in the bag and said, “Eating isn’t worth it.” Much later that day I finally convinced myself to eat something. Last week, I decided to research this pain. I looked at a number of conditions but it wasn’t until I hit TN that I went bingo. You all know, one day you finally figure it out, or your doctor does. As I researched, the more reading I did, the more I flipped out. I felt like someone had handed me a death sentence. The next day I was having pancakes with my daughter at IHOP (for you Europeans, it’s a pancake place ;)). I had the worst episode to date, and my daughter saw it happen (she is 7.) Luckily the waiter was very cool about it and didn’t bring attention to us. I talked to a doc friend, he told me to go to a neurologist. I am going in ten days. He also told me to get a complete workup, to rule out tumors and such. Knowing that the cause of TN may well not show up on an MRI or CT scan is a bit scary. It leaves the diagnosis in the hands of a doctor who has to trust only my version of my symptoms. I know the medications are used to “test” whether or not TN is present. However, I am already on nine meds. I have bipolar disorder (five meds), asthma (two meds plus one as needed), and rhinitis/allergies (one med). One of my bipolar meds is an anti seizure drug but it’s about the seventh line of defense in treating TN, not the first. For people who are on one or two drugs when they start treating TN, I think it’s a bit easier to monitor what meds are working and what aren’t. I already am on meds that are highly toxic and need to be monitored. I have already gone through all the side effects of these meds over a two year period. When I started lithium, I swore I had the flu. I was so sick. My doctor didn’t tell me what I found on the web, that this is very normal and subsides in about four days. After going through all sorts of indescribable side effects of all these drugs, the last thing I am going to put myself through is more side effect hell. I know what yall mean when you talk about living in a fog, or of being so tired you can’t hold your head up. I have taken myself off two drugs for these reasons and told my psychiatrist about it afterwards. You can say I am pretty proactive. I refuse to be doped up and not be able to think. The bipolar has taken many things away, and I have just wrestled back some of my cognitive abilities. I am not giving them up again without a fight. I know that the neurologist will want drugs to be the first line of defense. I know my insurance company will want me to trial out the drugs to ensure I do, indeed have TN before they pay for surgery or other procedures. My only defense in this case will be my psychiatrist, who is also a neurologist. If he will go to bat for me, explaining the drug protocol I am already on, they may buy it. He has gone to bat with the insurance company for me before and won. I have really been through hell in my life. Bipolar is just near the end of a long string of life threatening, damaging, difficult and painful situations. Take my word that you don’t want descriptions. What I learned from all of that is just how much pain I can take. It’s a fair amount. But this condition kicks my butt. My triggers are eating, swallowing, spitting, coughing, talking and brushing my teeth. I am afraid to eat for fear of choking. I am scared to bite into any food for fear of an episode while I have food in my mouth. Until I read some posts I had not even thought about kissing; I am not dating so it’s not an issue now. I am just scared in general about the next episode. I don’t want to eat in public, speak in public or do anything that might trigger an attack in public. What boggles my mind is how God could possibly think I could handle this on top of everything else. God must have some faith in me that I lack. I have always felt that the experiences and pain that I have gone through are there to help other people, and because of this, I have been able to reach out to others. I know there is a purpose to everything, and a plan for my life. I am thankful that others feel their pain might help another and have shared on this website. Hopefully, when I get my head out of the sand of my own pain, I’ll be able to help others. When I read about the link between MS and TN, I immediately thought of Michael J. Fox. I thought of how he has fought to stay active in his field, doing voices for movies, acting when he can. I also think about Chris Reeves. He said something that I put at the bottom of every To Do list. “I see this as opportunity instead of disaster.” When the pain knocks me down, and I cry and scream, I think, it took me a year to learn how to walk again after I was shot, that was a very painful year. It took two hospital stays and almost two years to come close to getting my life back after bipolar broke it in two, and I never thought I would make it through it. It may take up to two years to get custody of my daughter back, and I grieve every single moment of every day but it will happen. Those things remind me that I am stronger than I think. I know I can’t tackle this thing overnight. It’s just going to have to take time. It’s been a bad pain day and I can still write that. Oh my god…I am accepting my lot in life *wink* The last thing I want to say is thank you to everyone for your stories. So many of you have pain in so many more areas than I do. While I know that the pain may be of the same intensity, I know that you suffer more than I. I hope someone out there is researching for all of us, and can give us more information and better treatments. Regards, Brenda
Date added - Wednesday, December 29, 2004 at 04:56:40 (GMT)
Name : Kay Evans <kayevans81@msn.com>
Age : 47
Gender : Female
Location : North Wales(Wrexham)
How long have you had TN : 8-10years
Have you had an operation - if so which? : none
Comments : I have had my worst attacks over the last 5 years. I have the stabbing, electric shocks and twice the pain has been so intense it has actually physically knocked me to the ground. It is not a uniform pain as one day can be completely different from the next. I suppose the most regular pattern I have is the sharp electric shock followed by a spasm lasting anything up to half an hour. During the spasm the pain is so intense I must not speak or move my mouth and just breathe deeply and try to ride the pain. The thing with TN is that the more tense you become the worse the pain is, a vicious circle really. I have had to carry on working through all my attacks as I work for myself, cleaning and only have my wage as I am on my own. I am allergic to all the medications ( I immediately break out in hives). The neurologist has carried out 3 scans and says he can help but I"m not convinced enough by things I've read or heard that this is the answer. I went in the end to a homeopath ( after wasting 200 pounds on accupuncture). Part of the therapy was getting it off my chest. After 3 months it subsided, not sure if just the nature of the condition or the tablets. Was free for 5 months or so then it was back, stayed with the homeopath until this year when we couldn't get any relief for the latest attack. He suggested a cranial osteopath. I wasn't sure as I didn't want anyone touching my head and also with earning very little money I was struggling. Well I went along and met Sally. I had 4 sessions and have been pain free for 10 months, my longest yet. At the present moment I am having a lot of stress with my sons and I know my face is pulling. I am trying to relax, wrap up in the wind,I used to enjoy show jumping but just stick to an occasional hack or gentle schooling of the horse now, I try not to knock or jar myself, I tend to bump into things wehn working, never ever eat on the right hand side, I always chew on the left. Anything like toffes are out or anything that involves a lot of movement of the jaw. This probably sounds a bit garbled but this is how it feels, that so many things happen during attacks etc you feel you need to address it all. I know the next attack will be in the New Year sometime but I have noticed with my condition that the happier I am the less severe it is so I surround myself with people who make me feel happy and I also enjoy my job. Any feel good factors definitely make pain easier to bear. Maybe someone may try some of these things and if you do I hope you get some relief if only briefly, it all helps. Good luck K x
Date added - Thursday, December 23, 2004 at 22:42:47 (GMT)

Name :
Lann
Age : 29
Gender : Female
How long have you had TN : 4-5 months
Have you had an operation - if so which? : none related to this
Comments : I am a 29 yr. old female diagnosed with TN approx. 4-5 months ago. First episode was the most painful to date. I was on so many drugs I couldn't function. Tegretol, oxicodone, and anti-depressants I can't even remember... I was using ambesol (sp?) and suprisingly that took the edge off the really sharp pains. I went to the dentist and endodontist and neither knew what it was and in frustration I made them both have a conversation with my primary doctor. The endodontist gave me a shot of novicane but that did nothing except intensify the pains. Fortunately, I did not go misdiagnosed for long. Intitially, they thought sinus infection & TMJ but I was in too much pain (constant pain) that would come and go in short intervals. I couldn't stand it anymore and walked in and told the doctor that this was more painful than the birth of my son. So, he told me he finally knew what it was and I agree with his diagnosis. The first episode went away about a week later. Thank god for the medicines. However, I had another episode, not as severe, on the left side of my face (opposite side this time). MRI showed nothing. I was put on Neurontin, Amitriptiline, and ultracet (which was a temp. pain reliever). This worked for a while. Now pain is back on the right side and is breaking through the meds. even though the doses have been increased. I'm just now being switched to Trileptol. I hope it works. I like others on this site am going through a rough time in my personal life and it seems at the most stressful points the episodes come on and intensify. I hope this new treatment works and appreciate the stories shared on this site as they help me understand more about this disability.
Date added - Tuesday, December 14, 2004 at 18:25:43 (GMT)

Name : macy <maryluie41@_yahoo.com>
Age : 63
Gender : Female
Location : virginia
How long have you had TN : 4 and 1/2 years
Have you had an operation - if so which? : none
Comments : This is one of the most painful conditions a person can suffer from. Finally thanks to the Internet and people like Simon we TN sufferers can find some comfort from telling our stories and reading the comments from others who suffer along with us. Sometimes the sadness is overwhelming and seeing another person, who has been where I am now and survived, really and truly helps get me through another day. I am so disappointed to find that the web crashers have found our place to communicate with each other and find a little bit of peace, and are trying to cheapen it with their ads, jokes, etc. Let me tell you all (you know who you are), the illness we have is serious and can happen to ANYONE, so lets hope a few months/years from now you won't be looking for a site such as this one to help you through a pain filled night like you cannot imagine. There may not be any sites available because of your selfish inconsiderate conduct. If you have something to sell, go elsewhere. If you have a joke go elsewhere also. WE are in pain, can't you understand that? To Dan, the young medical student: I wish more doctors took an interest in TN.I think you are to be commended for wanting to see TN from the patients point of view. Well, will get off my soap box for now. I am sorry for going off like this, but I have had it with these butter inners and disrespectful people filling up our guestbook with their nonsense. Macy
Date added - Friday, December 03, 2004 at 22:40:09 (GMT)


Name : Dan <xxxxxxxxxxx>
Age : 23
Gender : Male
Location : New York
Have you had an operation - if so which? : n/a
Comments : As a medical student I'm required to know about TN and although I know about it from the medical perspective, it is interesting to see it from the patient's point of view. I think in the rush to treat patients many health care workers forget how detrimental this and other diseases/conditions can be to someone's every day life. Thank you for sharing such a personal experience!
Date added - Friday, December 03, 2004 at 03:42:06 (GMT)


Name : Julie <pjc.atkins@_ntlworld.com>
Age : 39
Gender : Female
How long have you had TN : 17 yrs
Have you had an operation - if so which? : Gamma Knife
Comments : My pain began when I was 22. I am now 39. It stated as a pain occasionally in the nightr that woke me up and lasted around 20 minutes. My husband says I would cry and ask him to hug me. Then around 5 years lster the pain started to come through the day too. It lsted the same amount of time but came around 3 or 4 times a day. I was at my wits end. I didnt see great doctors and I was told there was not much that could be dont except drugs. I was put on Tegretol which didnt help much snd after reading the side effects I stopped it. I was so scared. Then I tried Gabapentin which didnt help either. I tried accupuncture and reflexology. I was on lots of pain killers which did help abit but made me constipated and sleepy. Now here I am age 39, I have tried Gamma Knife surgery which made my pain worse. I am still on lots of painkillers and Carbamazapene. It gets me through the day. Julie
Date added - Thursday, October 28, 2004 at 19:49:28 (BST)


Name : Pam <pamela.frazee@_360.net>
Age : 43
Gender : Female
Location : Seattle, WA
How long have you had TN : 4 years
Have you had an operation - if so which? : no operations
Comments : Diagnosed 2000. Short term episodes, some not even needing meds. However, the prescription of choice at the time was Tegretol. Which helped. Until July 2nd. This is the worst episode I have had to day. Longest as well. Controlled with Tegretol for about 6 weeks. Then it stopped working. My MD decided to switch to Trileptol. Which was a lovely experience for the 1st 24 hrs. Pain came twice a minute. Couldn't work, sleep.. Well you guys know the story. Experiencing dizzy like feelings, inability to articulate and find words at times when speaking. Headaches are now setting in.. started about 2 1/2 weeks ago. As is depression. I hate my life being controlled by this. My doctor says procedures are way down the road for me. In the meantime, will try the prescription cocktails. Nice site.. and informative at the same time. Thanks everyone for sharing .............. Pam
Date added - Tuesday, October 19, 2004 at 21:09:02 (BST)


 <me@me.com>
Comments : Greetings from Poland. Thank you for site! God bless you!
Date added - Tuesday, October 19, 2004 at 19:31:08 (BST)


Name : Gwyneth Simons <flint.cottage@_ic24.net>
Age : 60
Gender : Female
Location : Wales
How long have you had TN : 5 yrs
Have you had an operation - if so which? : No
Comments : The only treatment I have received for my TN is anti-depressants which I don't take now. I'm thinking about trying a TENS type Pen which is available for about 50.Has anyone had success with this or similiar ? My condition is on the right side of my head and face and behind the ear. I suffer a short circuit type experience which affects my eyes and makes me dizzy which is unbearable.My Balance is affected also, but being a strong willed person I'm able to carry on with my life even though it's a big struggle. Good luck everyone. Any comments will be appreciated! Gwyn
Date added - Saturday, October 16, 2004 at 13:23:42 (BST)
 


Name : Jan <hguardian@_sbcglobal.net>
Gender : Male
Location : California
How long have you had TN : 7 Years
Comments : Hello, I have suffered with TN for about 7 years. I have gone to several doctors for this. I took Neurontin and that made me over drugged and I hallucinated. I am now taking Tegretol along with Amitriptylene. I take Darvocet and Prednisone when I am in severe pain. My pain started with an earache that wouldn't go away. I was treated for sinus problems and Migraines. I have my pain on my left and right side. The right side is the most dominant. I very rarely have it on my left side. I have raised 5 children on my on and this has been difficult for them. They can't understand what this pain is that controls my life. They have suffered thorough this with me. I had always worked full time and coached my children's teams. I have not worked for 3 or 4 years now. I have memory loss also. I wasn't sure what was causing that but now that I have read this stories I realize that it must be the Tegretol. I have pain in my right ear and completed right side of my face. Cold air sets it off and makes it worse. Stress seems to add to the pain. I too had TMJ. I'm not sure if that started it . I first had this pain while going through a divorce. Maybe stress brought it on or it just happened at the same time. I spend most of my days inside. I go to my son's football games and try not to take meds before I go because it affects my speech and balance and that embarrasses my children because I look like I'm intoxicated. This has been painful for my entire family. My children are older now but they will never understand what this is and why I am not the same person I used to be. I am lucky to enjoy some holidays but other times I am very sick and can't do anything. There are no doctors here that do any surgery for this. I live in a small town in California. I know of no one personally that has suffered from this so people do not understand my pain.This is a very difficult and life altering illness. There are times when I feel that my life is useless but I love my fami ly so much so I keep on fighting the fight. Jan C
Date added - Thursday, September 30, 2004 at 21:56:38 (BST)


 

 
 


Sponsors