yes, my dentist knows as well and has full report from my neurologist and pcp. even spoke w/ neuro. however, for me to even open my mouth causes pain let alone touching teeth. they vibrate w/ attacks from tn and so on. if i go to dentist, pain won't come for 2-3 days and could last a month. ton's of meds, terrible.
ravenm said:
I was lucky. My dentist was actually the first person who clued me in that no it wasn't a dental issue or my imagination, it was a neurological one and I needed to see a neurologist for something called trigeminal neuralgia. He doesn't even blink about getting me valium before I get my teeth clean because he knows that just that can be a trigger and he does a full update on my meds and recent procedures before he starts anything. I don't know why this started, but I am grateful that there is one dentist that does his homework and I found him.
Hi I am son glad you have posted this its exactly my feelings today...I believe as you do that child birth was easier and at least you eventually deliver. I feel like something is inside of my face igniting tnt and so far nothing is touching these episodes . I don't know but am asking seems like there are times when its extreme and I cannot associate it with anything I have done. like eating or drinking or talking although brushing my teeth cold water on my face all hurt those intense extreme shocks knock me out. My Neurologist is nonchalant and I cannot predict when it will happen and then after those intense minutes the hurting lingers. Wow never had anything like this in my life and the drugs well? its a guessing game. just wanted to relate thanks for posting its as if I wrote it myself. today is a really bad day and yes we all look normal to everyone else and those around you get tired of your complaints. Sometimes I just try to keep it to myself and deal but its soooooo hard....take care Mina
This is the first time I have ever heard of other people with TN type 2. Everything mentioned above "ice pick", "you look good to me" CONSTANT BURNING Pain!!! My TN doesn't seem to have much to do with my teeth, but rather my cheek area with nerve damage. After 16.5 years since this pain began, I am loosing hope. I understand why they call it the "suicide disease". I am looking for a last ditch effort to get help, so I might have some sort of a life. My daughter is getting married in August, and I am petrified that I won't be able to make it thru the day without self medicating. This is by far the worst debilitating pain anyone could imagine! Reading about the medications you have all tried, brings back all the memories of trying gobs of medications...none touched the pain. I have found NO success with doctors....hopeless.
I think this lack of understanding from other people is one of the main reasons I joined this site. At least people here understand the impact of TN. I have been very lucky and my boyfriend is very sympathetic and understanding, but no matter how hard he tries he doesn't really get it. The only thing he has to compare it with is back pain that lasted for a couple of months, and he knows TN is much worse that that. I really appreciate that he tries to understand and also that he doesn't put me under pressure to do things when I'm in pain. Friends and family who don't see me every day don't always understand, but I wouldn't have understood before it happened to me. The thing that I find hardest to get people to understand is that as well as the pain, I am exhausted a lot of the time because I have to cope with the pain while I do everything else, so doing one thing can use up all my energy for the day. People see that I can get to work and work for a day, so don't always get why I can't also go out in the evening to meet them for a meal or a drink. They don't understand that I've used up everything I've got doing a day's work in pain, so can't then go out and do something else. I saw the Spoon Theory discussion the other day, so I'm going to see if that helps me explain things.
I hate those words more than anything. I have never been one to show illness, even if I am sick as a dog with the flu or this. I feel like people dont believe me, as in -you look fine, so you are full of crap. If you really want to piss me off, just say those words and watch me go through the roof!
I get where ur coming from 100% I have had terrible issues at work as I need to take extra breaks and now my boss wants to put me under investigation since a so called ‘friend’ insists my condition can’t be as bad as I make out and that I must be playing up for preferential treatment. I’d gladly swap her this pain just for a few hours!
I get that response a lot. "you don't look sick"... then I tell them I have a brain disease. I think it's accurate description what do you think? I know it's not their fault. I guess we should be greatful. Brain disease. TN is a brain disease of the Fifth Cranial Nerve, right? Also very grateful for LWTN. It's been a blessing to have people in my life that understand tho I would take it all away from you and take it myself. I can't stand hearing so many people suffering. I love you all,
With love,
Julz aka uwfotogal
Tracy C from BC said:
Hi Stef,
I look fine, in fact I look better than fine :) therefor I must be fine. I lucky in a way, most know my story and am amazed im still walking around acting all fine. I have about 20 mins of pain free time a day when I first wake. Those who don't know me or hear how TN saved my life, they will never understand.
Thank god for great friends and LWTN. Stef, you looking pretty great also! Hope you feel the same way underneath soon :/ miss ya
After 12 years, I've decided I don't care if they understand. At least I feel that way now. However, I expain it like this, "I have a rare brain disease that causes me to be in chronic pain in my face. I think they relate more if I tell them it is a brain disease and that so far there is no cure. I also inform them that it also known as the "suicide disease". Then, they don't know what to say and some walk away. Recently I've left out the part about the suicide disease or explain that in the olden days people didn't have drugs to help them and suicide was their only way out. Now we have more choices.
Remember it is a brain disease that affects the facial nerves.
Take care and many hugs and prayers,
Julz aka uwfotogal (former underwater photographer and model)...
I found that my family were understanding but only up to a point - they didn't really get it. However recently my mum saw something online describing it as the worst pain in the world and I think her seeing that from an independent source really helped. I have had emails this week from other people in the family asking about it because she has told them all. They all still think if I take some pills I'll be cured, but one step at a time!
I can relate to this. Until I tell them there is no cure. I've had this for 12 years and the first few I was angry because it seemed to be caused by a dental procedure. I lost several teeth before they mentioned it could be neurological. Makes me hate dds.
You can only do what you can do... give them a link or ask them to Google TN. I'm thinking of having a card made that says I am a TN patient. LOL. Just might work! Then I can put where to send donations. LOL
ruth13 said:
I found that my family were understanding but only up to a point - they didn't really get it. However recently my mum saw something online describing it as the worst pain in the world and I think her seeing that from an independent source really helped. I have had emails this week from other people in the family asking about it because she has told them all. They all still think if I take some pills I'll be cured, but one step at a time!
Jamie, I had the exact same thing happen. I had been on a 24 hour "bender" of just kill me now pain. I went to the local ER and was told they dont treat pain? I said you are a freaking hospital and help people?? I was told because I was taking narcotics that it was obvious I needed a fix and didnt look like I was in pain. I found it funny in a way, I was sitting there in designer clothes and shoes (its my addiction) and this woman is accusing me of being a drug addict. I advised her if I was an addict, I wouldnt have these shoes, I would have sold them for drugs. She actually suggested that I should and released me with a note on my file that I needed a psyche consult. Three days later the hospital calls for an update and survey, by then I was diagnosed. All of a sudden I got apologies and offers of help, I told them to shove it!!
Wendy
Jamiebrooke said:
Hi there,
I am new to this forum and new to this disorder. I have symptoms of ATN, TN, and glossopharyngeal neuralgia. I went to the ER last Saturday morning. I was screaming and crying, holding my face and head. The ER doctor said.... " what do you expect me to do? I cant treat you or admit you in the hospital.....trigeminal neuralgia is very common, millions of people have it."...... In WA state, chronic pain patients arent given marcotics." After more conversation he said "dont worry i believe you". ....... When i NEVER asked him to believe me. When i walked out of the room with my four month old baby, in tears from a seven hour attack (so far) the nurses were snickering with eachother and laughing and pointing at me. I read the medical report when I got home, it read........ Woman with obvious depressive disorder, and addicted to drugs wanting narcotics. Complains of serious pain in her head.
Of course, then there is the family who wants to have a bbq, go boating, or p uhhhlease go to my bday party, it will be so fun!!!! You will be okay!
This has been such a nightmare, but I will not give my power away to others. Not any more. I have chosen to not feel helpless and hopeless, of course easier said than done. I have come to a conclusion, they will never understand. Could any of us before this happened? So i am going to drop wanting empathy or sympathy from others ( of course my husband better get it ;)
Ditto. I hate it when I am having attacks. I feel like my face is contorting and that I would look like someone having a stroke or something. But no one sees it, no one feels it. I too have to continue to work and take care of my home and they are very stingy with the meds. I only take Lortab when I absolutely have to. I work in pain. I am getting ready to have my 4th brain surgery. I am having so much trouble getting myself in the right frame of mind to do this. I am so scared and I am so not wanting to but yet I want some relief. I not only still have pain after the initial MVD surgery I was left with a leaking brain. So I carry this big sack of fluid around on the back of my head. They have tried to repair it twice by taking fat out of myabdomen and putting it in there with adhesive but the leak comes back. This time I have to also stay in the hospital with a lumbar drain for 5 days (did that on the 2nd surgery too). Just sick of surgery, sick of pain and want to know how to get disability so that I do not have to worry about working and all the other stressors in life that I think contribute to this illness.
I'm so sorry for the side effects of what should have been pretty easy surgery. An MVD. So many people go through them without any problems. However, some of us come out of them with more pain than we had when we went in. I am one of those. I now have a diagnoses of Anesthesia Dolorosa. I found one of whom did so many of these and I flew several states away to have it. Univ At Tampa General Hospital
You would probably do better with something stronger for pain. If you are not seeing a pain specialist who knows what this disease does to people. This doctor and a pscyhiatrist is a great idea if you can afford it.
You have been damanged and you may still have rights under the law to pursue a claim. I don't know all of your details. But it sounds like you got a really bad deal.
I also take Neurontin but I hear it's not good to go over 1800 mg/day. So I take Tramadol and if I have a breakthrough pain I usse a strong pain medication. I also stay on a mild tranquilizer for GAD and it helps with the pain. I get a lot of support from the many friends we have.
Thanks Julz...I just frustrated with all this. I am not good with pain meds. I don't like the feelings and I can't drive or function well if I take stronger pain meds. Most of the time I suffer through it until I can get home. But if I get the CSF headaches I have to take something strong and have someone drive me home. The TN is pretty well controlled with the Lyrica but I do have break through pain at times.
I would like to find another doctor for a third opinion. I was wondering if anyone knows of one in the Carolinas? I like the neurosurgeon I have now at MUSC in Charleston but I would just like someone else to confirm what needs to be done before I go for more surgery.
I relate to this all to well. I live it everyday too. Just like so many others, with the stigma of but You- do this or you do that...
It has not been until these last few months- after 10 years, that my pain is being noticed as debilitating. And that was only after the Pain management Doc, also a TN sufferer, committed suicide. Now, with that, I have that stigma attached.
I am blessed with a working K9 that alerts on me prior to the onset of attacks 15-45 min in advance. The Neuro Doc, by chance, watched my K9 in action as she alerted on me while I was in his office. He freaked. But, now I am getting the treatment that I require and back to the correct meds. I also have a Tele-nurse, and a Home visit nurse along with Heidi, My K9 Service Dog. Cyber Knife is coming soon. But with TN2..I still expect mixed results. Michael
Well I have certainly experienced funny looks coming my way when initially explaining to my bosses and my GP. I think my bosses were more in shock because they didnt make a fuss. they took my word for it. They could see that I was coming into work for three weeks holding my face every second and being miserable.
One day I had had enough and went to my GP to get a sick note from him as the pain was horrendous. I had previously been treated by a specialist who had seen me twice and confirmed the diagnosis by a first doctor. I took all the pills ever perscribed to me for this with me to the GP. I just asked for a note and showed him the meds. I could barely speak that day and his first reaction was "are you sure its not herpes". I think he was skeptical and he has every right to be. we have a lot of people who are milking the system to go out on disability in this country. So it is a problem. I am afraid to be perceived like that because when you are in pain there is no evidence. there is no blood, nothing shows on an MRI or Xray, its just you. So I do worry a lot about how people perceive me. I am lucky that I have not needed to go and ask for a sick leave from work since then and have been working since.I hope I never have to ask for one.