There have been discussions in the past on the brain & nervous disorders thread. However, what do you want to know? My sister had this and suffered for several years until she found the neurology clinic at Presbyterian Hospital in Pittsburgh. Went there, had decompression surgery and is doing beautifully 6 plus years later.
Did oyu have it done at Presbyterian? The procedure was developed there by Dr. Geneta (sp?). At the time of my sister's surgery, they had over 800 people registered in the TN clinic and about 1/3 were candidates for the surgery. She was one. I wouldn't send anyone anywhere else but to them.
I have a friend here in AL who's had the Gamma Knife surgery for this twice...both have failed. I keep telling her to go to Pittsburgh.
What is the cause of TN? i think i have dealt with this for several years..BUT it says it is lightning bolt pain throughout the day which is what i have but most times its a constant pain. And then all the sudden it quits and im fine. some days it is constant pain..non stop for almost 2 days then i go a couple days with no pain. I had a MRI done which showed abnormalitys i went to see a neuro to rule out MS and he diagnosed me with TN. i just started taking a med for it. He couldnt give me an answer on what causes it. For several years it was only one sided...no recently the other side has kinda started feeling the same way but its very dull feeling and never lasts for more that a couple seconds...i do have TMJ and the right side of my jaw got real sore yesterday (i chewed on that side to baby the left side which is where my TN is hurting the worst.) so i assumed maybe that the right side has been hurting due to my jaw. I would love to know the cause. im 29 and i read where in between the age of 20 to 40 usually TN diagnosed that young with bilateral pain is associated with MS.
I dont think my neuro was very thorough with me on my MRI report. As far as i knew from my personal dr i was supposed to go through some other tests to rule it out and i didnt. Neuro said i had lesions but he didnt explain from what i got no answers whatso ever and as far as i am concerned i diagnosed myself and he went along with it. Because i told him i researched neuralgia and it fit my condition to a tee and he said "yeah i think it is too" i dont know what to do. i wish i knew what its caused from but i guess no one knows. it just happens.
No, it doesn't just happen. Unless there is an injury that caused it, it is a congenital defect that worsens over time. The usual cause is an arterial loop that presses against the trigeminal nerve and rubs it raw. In microvasular decompression surgery, they drill a hole in your head just behind your right ear. Then they lift the arterial loop that is compressing the nerve and tack it out of the way. They then separate all the nerves in that area and cost the damaged areas with teflon to cushion them. Then they put a metal plate over the hole. It worked beautifully for my sister. You need to do some online research on TN and the University of Pittsburgh, Presbyterian Hospital neurology clinic. Lots of info out there. This is an often misdiagnosed condition. All I can tell you is that my sister suffered for some time. Her docs offered no relief. SHe hit the internet and did her own research, found this doctor and now she's great. Let me know if you know if you have more questions.
Yeah thats something ill look into...what did you mean by "this is ofent a misdiagnose condition?"
Do you think i may have something else? I was wondering that but TN was the only condition that fit my symptoms. right to a tee. I was thinking a couple days ago ill give this med a try and if it works then that must be what it really is...if it doesnt help im going right back to ask for a different neuro. im not far from pittsburg. this is something im defintely gonna look into and i appreciate your reply very much.
Yeah the neuro even said theres not many that know much about it.
What I meant is that it is often diagnosed as something else so people don't get the proper treatment. It is degenerative..meaning it won't get better. The loop just continues to press on the nerve as there is nothing to hold it out of the way. Good luck and keep us posted.
Yeah i know how that is...here were some of example of what drs said it was...
High blood pressure
Too much caffeine
Hair too long
I have been on so much medication basically used as a guinea pig. A week ago i couldnt even touch my nose my head would hurt so bad and so far it hasnt hurt at all and im only on 1/2 pill twice a day for a week then i go to a whole pill twice a day. i really think this is working. i have no side effects so far (knock on wood)....The onyl thing i dont understand and maybe you could ask your sister this...most people describe this as random lightning bolts.which is what i was getting but other days it was constant..i had no relief it was all pain all day sometimes 2 days a stabbing burning ALLLL day!!! Horrible i get sick thinking of it. nothing took it away then all the sudden it just stopped. Not a normal migraine/headache..there was no dull start and no dull ending it just stopped.
SOunds just like my sister. She could go for days with no problems and then intense pain that was all day long. And the random attacks as well...it was all over the place. My best suggestion is for you to be evaluated by someone who is well versed with this condition. They can best say if this is really what you have. And yes, she was on all kinds of meds until nothing worked any longer. If the surgery is an option for you, it is best to have it done early on before there is too much damage to the nerve...at a certain point, there is nothing they can do. Please let me know if you have other questions. I'llbe at my sister's for Christmas and will try to watch the board...but I can always ask her questions if I don't already know the answer.
Ok great!! i appreciate these replies from you very much! Finally someone that knows information on what im going through,
it was getting to the point where i didnt even want to leave my house in fear of having a "headache" i lept telling everyone over and over again that it didnt feel like a "headache/migraine"
Im assuming your sister had an MRI..was there lesions that showed up? this is what i dont understand. my MRI came back as showing lesions and the neuro said they were non specific meaning there was no cause of them. well to me there has gotta be a cause and i wasnt sure if TN caused them or not.
My pain seemed to of started shortly after i bumped heads with a roller skater 15 years ago. he hit the back of my head and i suffered a contusion. Im not sure if this could be caused from that or not. So far on that med i havent had steady pain since ive started. Hes gonna ween me off the lyrica as soon as i get to a steady amount of the tegretol. So far ive only had little pains nothing that hurts just annoying and im afraid ones gonna stick with all day but so far they havent. Another thing i remember my mom telling me when i was younger with the pain that she suffered from one sided headaches along with my grandfather he had them very bad i guess they described them as violent. my mom said my grandfather would just hold his head and pace the floors praying for it to go away. now to me that sounds like the same thing i have. im also wondering if this could be hereditary. neuro says it isnt.but i have read in several places that it is. For a grown man to be in tears over a headache?? no it had to be this. neuro said TN is known as the worst pain known to man. So im guessing this was passed on or from the head hitting.
I would love to know why i have lesions. Thanks again so much and happy a merry christmas. i really appreciate your info. thanks
Hi was reading your post and just had to reply. I have TN i live in the UK, at first i thought it was toothache but when it didn't go away the dentist told me to go to the doctor, he knew straight away and put me on carbamazepine and co-codamol these worked fine for a couple of days but i woke about 6am one morning with the sudden lightning bolt pain on the left side of my face got up took my pain killers and they did not work, i just sat and cried for 6 hours until i was able to take more pain killers. This is a very debillitating illness which as the others have said gets worse every time you have an attack fortunately i have been fine for the last 18 months but i am terrified of my next attack as the last one was so painfull and that was the first time i had ever had it.
I also suffer from TN. I am currently taking Trileptal and Tegratol. I was seeing a neurologist and he just refered me to a Neurosurgeon. My MRI showed no lesions or abnormalities. The only thing it showed was that the back of my skull sit a little lower than most and that a portion of my brain was shaped a little different. He said that these two things could explain my headaches. As far as the TN, he said that there is no known cause but that a blood vessel or artery was rubbing against the trigeminal nerve. He recommended surgery but I'm a little scared about the surgery. He said he wanted to try the medication first. I was on Trileptal only and he added the Tegretol. It has helped some but I still have occasional pain but it is not as bad. For the longest time, I couldn't brush my teeth, eat or even kiss my kids. Right now the only time it really hurts is if I have to blow my nose. Sometimes it hurts just to barely rub my lips.
I hope you find the help you need. The doctor I'm seeing is supposed to be one of the best in the world. I guess I'll see how good he is if he can help me control this pain. I would rather not have surgery unless I absolutely have to.
Little miss_ congrats on being painfree for 18 months i hope it continues for you....
I am so glad i found some people with the same problem as me. But what worries me is i do have abnormal spots on my brain thats what my MRI said and its stated in my report that the spot are non specific. I understand about blowing your nose i couldnt believe it when i did this one day and my head started pounding....no one believed me everyone said oh its your sinus`s and i said no its not theres something really wrong. thats when i was finally able to see a neurologist to prove it. only sometimes when i do that the pain stays with me all day and i cant even talk right...a month ago i woke up with bad pain my fiance said i was talking to him as i was waking up. i could feel it and i knew it was gonna stay all day it was the worst pain i ever had and he said i was saying weird stuff...i then came downstairs i got real sick to my stomach and i laid on the couch and all i remember is seeing weird faces when i closed my eyes i opened them and the room was spinning i seriously thought i was dying. i then dont remember anything and the next thing i know i bit my tounge. thats when i called the dr and he had my mri report and told me to get down there. that pain stayed with all that night and into the next afternoon. now since ive been on tegretol ive only had 1 episode of all day pain in a week but im still feeling it..i started 400 mg a day on tuesday after being on half a pill for a week. is this gonna work? i do feel a difference. i can now scrunch up my face with no pain and i can now touch my nose..the only thing i notcied that makes it hurt a bit is being out on a windy cold day. i guess i really need to give this time to work..its only been 2 days on the bigger dose i need to patient...but when i know this may take the pain away im getting anxious. ive had headache problems for 15 years and ive gone with this severe pain for the past 6 years and had nothing to take for it (otc drugs dont work) because i had no insurance.