Is this all I have to look forward to?

Hi,

I have had TN for around 6 months now. i feel for each and every one suffering with this.

I joined this site as I wanted to discuss this more with people who actually knew about this condition first hand.

I tried to reseach this condition and thought of reading about people to give myself hope. All I see was horror stories which worried me. People being mis diagnosed, People going through years of hell (really? was there no help or did the people not receive the correct help) people having teeth removed. Nothing seems positive to me at the moment. Even people who have had surgery say that the pain has returned.

I decided enough of this, lets read some success stories.

Even the success stories talked of hell and baby steps. I'm beginning to think that in time the slightest move in the right direction will be the greatest news in my life and my baby step.

I am wondering if people do get this condition and it is a one off, treatable early? I imagine the most extreme cases join a site like this for support which is why there are so many horror stories.

I wonder if people have this get treated and don think to write about it on the internet?

Does anybody know of any real success stories or is this now my life??

thank you for any thoughts.

Hi. I think this is a good question…are sites and support groups such as these sometimes a little one-sided with horror stories with pain and unsuccessful surgeries, and the people who manage well on meds and cured by surgeries (and there must be thousands and thousands), now have no need to be on these websites telling their stories.

For years I would read other people’s stories thinking “I am so lucky as I’m on minimal meds and controlled well” . Then every year x two attacks per year, each attack worse than the previous, then from last December I was in a living hell of pain, not wanting to live if this was it. I was one of the lucky ones that only had to wait 4 weeks to see a neurosurgeon, then a week later had my MVD (last week). I knew I keep paying my private health insurance for a reason!!

Yes, there are horror stories out there, and everyone’s journey with this horrible disease is different. What works for one doesn’t always work for others. We all need to find empathetic medical teams willing to look at us as individual real people.

I don’t know if I’ve given you any answers or hope. I guess what I’m wanting to tell you is that everyone is different, so try not to look at others horror stories and think the worst for yourself.

I wish you the best and hope you find some comforting stories …just remember while you are on this site and a part of this “family” that you are not alone.

Please know that there are many of us who have found relief either through surgery or meds. That is not to belittle those who have not, my heart breaks for those members.

I myself joined here in the depths of despair. I was lost. knew no one with TN or much about it. Through talking to others I was able to find a new neuro who has given me a life back. Much trial and error on both sides but we got there eventually. I have almost a normal life, I work full time in a demanding job, run a home and help out on here.

THERE IS HOPE!! It is not all horror stories, honestly!

Please do not lose hope. Like you, I started researching my pain via the internet and found this site. For me, the answer was to have an MVD as soon as I could schedule it. Medications had worked but the zombie effect was too depressing. It is frightening to read the stories here while trying to keep up hope for a cure. Even after my MVD, I keep looking here for reassurance that my pain relief is permanent but I suspect, like others, that most of the successfully treated people have moved on. My surgeon was excellent and my pain is gone. I am a succcess and you can be too. Find a good neurologist and never give up.

I come back every day after a successful surgery 14 months ago.

TN is only in and out of remission. It's yours to keep.

The best way to wellness is READ/ASK/LEARN

Get the book "Striking Back " by Dr. Ken Casey -- much hope and knowledge there!

The reason you hear all these horror stories is because we are soooo RARE --- 12 in 100,000

So the best intended doctors are going to need your help in deciding your best treatment

Another great site is the Trigeminal Neuralgia Association -- they are delving into research.

Keep Posting!

Thank you for your replies. It does help to talk and to hear of hope.

People living with this who havn't found the correct help is heart breaking. I can only imagine the hell that this is.

Only being new to this I am lucky that I manage through most days but lately each day is becoming harder. Brushing teeth, eating and talking all cause problems.

My biggest worry and concern at the moment is if this gets even worse still or becomes incapacitating. I have my appointment with the nuerologist on Wednesday.

I'm just in a confused state. 6 months ago I didn't know there was a condition like this or that TN existed. I've had many "why me?" moments but know that is pointless. I am hoping there isn't an underlying problem causing this.

To Gen - It's nice to hear you were quickly treated. I hope this works and leaves you with no pain. Has the surgery worked? I know it is early days.

What you said was reassuring. I am sure that not everybody suffering this does come to this site. I believe this site would be a great comfort to many people in their darkest days.

This being nicknamed "the suicide disease" is a bit worrying also.

To Jackie - Again it is great to hear that your pain is being managed and you are leading a normal life. When you say "normal" does this mean you still get attacks or pain?

Was your TN quite severe?

Ive written this without reading through your stories if you have written them. I shall do a bit of reading on you both. Thank you for your help and good luck to both of you.

In my case, I went through very bad years because I wasn’t diagnosed properly. I wasn’t given the medicines that could have helped me when the TN started. So, yes, I went through 10 years of horrible pain. But I don’t think it would have been so bad if they had known it was TN. The good news is that once we got the diagnosis correct, I was able to do something about it. In my case, since I had already gone through so many years of pain, I opted to get MVD surgery. I had it done in Nov, 3 months ago, and I feel GREAT! My pain is 90% gone.

Please don’t loose hope or feel things will be terrible. You seem to have gotten a diagnosis quickly. That alone is great. You know what you’re working with. You know your options and can work on keeping the TN tamed. You have to take it one day at a time and not worry so much about the "what if…"s. (I think we’re all constantly working on that.) Also, every one of us here has had a different experience with TN. Some have had remission for years, others do well with meds such as Tegretol, others need opiates, others, like me, do better with surgery. So whatever your experience ends up being, someone here will understand. Trust me, that alone will make you feel better, knowing that you’re not alone and that others are going through the same pain and emotions. Like KC, I’ve chosen to keep posting on this site after I’ve improved so that those who are just starting out and are scared can see that there is hope. :slight_smile:

-i

Here is a success story (in a way). I had little jabs of pain for several months and I thought it was a tooth. Dentisted prepped me for a crown and put a temp on. THAT IS WHEN THE HELL CAME. It took about 12 days for me to be diagnosed-THANK GOD! Now I am currently on meds but I have to increase about every 4-8 weeks, so I am sure surgery is in my near future. I am just not ready yet, so I am holding off. Another good thing about my case is that my neurosurgeon is less than an hour from my house, so when the time comes, I can have all my family and friends near. :-) I guess that is about as successful as I have had it so far. But I actually DO think I was blessed to be diagnosed soooooooo fast and to have my surgeon soooooooo close. Good luck to you!

Glanpini, my pain was around 8, it frequently bought me to my knees. I was often unable to eat, talk and even a gentle sniff would trigger it off. I was in despair of carrying on another day.

I say normal life because I have become bilateral and do suffer with Geniculate Neuralgia.That is not always so well controlled but I manage. I feel relatively lucky as I know others are not so lucky.

Glanpini said:

Thank you for your replies. It does help to talk and to hear of hope.

People living with this who havn't found the correct help is heart breaking. I can only imagine the hell that this is.

Only being new to this I am lucky that I manage through most days but lately each day is becoming harder. Brushing teeth, eating and talking all cause problems.

My biggest worry and concern at the moment is if this gets even worse still or becomes incapacitating. I have my appointment with the nuerologist on Wednesday.

I'm just in a confused state. 6 months ago I didn't know there was a condition like this or that TN existed. I've had many "why me?" moments but know that is pointless. I am hoping there isn't an underlying problem causing this.

To Gen - It's nice to hear you were quickly treated. I hope this works and leaves you with no pain. Has the surgery worked? I know it is early days.

What you said was reassuring. I am sure that not everybody suffering this does come to this site. I believe this site would be a great comfort to many people in their darkest days.

This being nicknamed "the suicide disease" is a bit worrying also.

To Jackie - Again it is great to hear that your pain is being managed and you are leading a normal life. When you say "normal" does this mean you still get attacks or pain?

Was your TN quite severe?

Ive written this without reading through your stories if you have written them. I shall do a bit of reading on you both. Thank you for your help and good luck to both of you.

When I was diagnosed, my TN lasted around 9 months, after around 2 months of no pain at all under my neuro’s advice and supervision I weaned off the med…

I had an 8 year remission.

Because I had other health concerns at the time, I didn’t really research much about TN. When it went away, I thought it was gone for good.
That’s why I never joined a support site.
All those years…no pain.
Even when it came back, I researched a little, but the meds kicked in and I was back to living “normal” again, work, kids, volunteer, etc
I still didn’t join a site like this.

Last April my TN relapsed…it became resistant to meds…I then needed to learn all I could about this monster and educate myself about my options.

Although we all share similarities, our journeys with TN are unique to us.
Please try not to be discouraged, or think omg this is what will happen to me…because you don’t know.
The term suicide disease is old fashioned, this was a label attached to TN prior to meds, surgeries and innovative procedures that have helped many.

Deal with today, educate yourself, but take care of you first and foremost.
Those times I was in remission or on meds and lived normally, I really mean normal.
No pain, no fear of pain, no side effects from the meds, they wore off once my body adjusted.
I lived normally.
You can too, you just need a good doctor or neurologist to walk beside you and help you find the right med for now. Once you’re pain free for a certain amount of time you can then discuss weaning off slowly, and then maybe you too will be pain and med free forever OR a significant amount of time.

((( hugs ))) Mimi xx

Oh, don’t fret. Even though there is no cure for tn it is treatable, and it can always go into remission. At first it does seem freighting but it is not. Read all that you can about tn and find a good doctor that you can trust, and it will get better with it. I think the hardest part is finding treatment medication or procedures that work for you. Once you do it will be so much better.



One thing to remember is some people (me especially) use this site and others like it to whine and vent. It’s our safe place to do so. I don’t want to complain to my husband or family and friends, though I do at times, even then sometimes although sympathetic don’t really understand what tn is like. So it is comforting to have this site to do and have so many who know what is like with tn. Many members still go to work and school here to so it is possible to be pretty close to normal. It is not a sentence to an unhappy state of being.



I’m sorry you’ve join the exclusive TN patient club but so glad you found our support site. If you have questions please feel free to ask away. Hope you have a great day that is pain free, and it’s nice to meet you. :slight_smile:

Glanpini,

I put up with TN for about 10 years. It took 4 years to get a diagnosis and I spent about 6 years on various levels of meds. I enjoyed many months at a time when I had no pain at all. It came and went in waves, but got progressively worse. I found out several years ago that my uncle also had TN and had had successful MVD surgery after going through years of being misdiagnosed, also. He advised me to have MVD surgery as soon as he found out I had TN. His surgery was done over 20 years ago and he is still pain free. I didn't listen and ended up in a situation where my MVD had to be done on an emergency basis because I was starving and dehydrated to the point of danger.

I was afraid to have surgery because I still thought my pain was caused by dental injury and that there would be no artery wrapped around a nerve when they opened me up. I was wrong, I should have listened to my uncle and had the surgery 2 years ago before it got to the point where my meds quit working. My surgeon did find a very large artery pounding against a very grooved nerve and was able to take care of it.

My uncle is still doing very well and has no TN pain at all. I hope to have the same long term outcome. I just wish I had listened to him and had the surgery sooner. You need to do your research and talk to various neurosurgeons about which technique is best for you when meds become less effective. That way you are prepared and empowered to make the decision when the time is right.

thank you all for your comments.

It's hard to imagine when people say 10 years of putting up with this or years of hell. I couldn't imagine going that long without refusing to leave the hospital until somebody does something.

I can only imagine, based on comments here, that being very early on my pain is moderate. Even still, eating isnt easy. if i attempt to eat anything that isn't room temperature the hot or cold air gives me pain. This is a silly condition!!!

At this moment, I am positive that I will get some relief. I will keep posting.

Mimi - After 8 years you must have thought you were fixed. did you never think of coming off of medication?

Brownkat - It's very nice to hear about your uncle. I hope your surgery has the same impact.

Jackie - Your pain must have been horrendous, to think others have it worse is terrifying. Your courage n dedication to helping others is amazing.

Donna - little jabs of pain is how i would describe mine... mostly. I have bigger attacks for longer periods if i trigger it. I have become the most careful noseblower in the land. Eating and drinking has not been easy for the last few weeks.

Thank you

Thank you for posting this question. I have been wondering the same thing myself after being diagnosed three months ago. You captured very eloquently my exact concerns.

Glanpini, I've talked with something over 4,000 face pain patients in the 18 years I've been a patient advocate and writer in this field. I've seen the horrors and the success stories. You'll hear more about the horrors here than the successes. Many people who improve or greatly reduce their pain seem to instinctively "flee the scene of the crime" as it were, as if they feared being contaminated by talking with others who are still in difficulty. The people you see on site and in this thread, tend to have conquered that impulse.

There are true "success" stories, Glanpini. My wife is one of them. She's had good pain management with a few background twinges and stabs for 14 of the past 18 years, using Neurontin. She has few side effects from 2700 mg/day, though she is fortunate in that happy circumstance. A lot of folks have a hard time with side effects and a few are hypersensitive or allergic to all meds.

For Typical TN patients, 90-95% of those who are treated with MVD surgery by an experienced team are initially successful. Some papers report continuing pain relief for ~70% of MVD patients after 12 to 15 years. That's about as close to "cure" as we can come at the current state of medicine.

Research is underway to find medication therapies that specifically target genes in the trigeminal nerve system that mediate chronic pain -- without suppressing the entire nervous system or dulling our needed awareness of "acute" pain in response to mechanical injury. The research is several years from showing consistent results in human subjects, but it's underway.

Hang in there. It's not hopeless. Just damned hard and unpredictable. There's a lot to be said for an attitude of "one day at a time", and for developing and cultivating friends who understand the journey. A lot of folks who've replied to you do.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN

When it started for me about six months ago, I admit, it was hell.
I’m on meds, including a compounded cream and have Percocet for breakthrough pain.
I also go to acupuncture 3x a week and although it might take awhile, hope someday to get it down to one time a week…eventually.
Right new…it is more manageable…definitely. But, esp. When in great pain, six months seemed like forever. And knowing it will never go away permanently is a tough thing to take in.
But, I am so grateful for the improvement and hope I feel of late.
This really takes research, good doctors and perseverance.

Glanpini, so far so good after MVD surgery 2 weeks ago. No pain at all, but still weaning off Tegretol. I'm trying to stay positive, while teaching myself to be OK with brushing my teeth and eating crunchy foods again!! Reading others' pain stories still keeps me grounded. I remember all too well the pain I was in only two weeks ago!!!

Hi:

not sure of the person who wrote this, about anyone having any success stories?

I tried B12+B1 injections and for over a year, I was pain free with them. Now they do not seem to work, but I will try again in another few months.

I also tried homeopathic herbs from Biogetica.com, and they worked for about 6 months. Then you have to get off them and go back in about 4-6 months.

I am on Neurontin and Baclofen, now, neurontin at 1200 mg. I am not sure if it is helping at all. I have never had such long and painful attacks about 50 a day. the Baclofen has reduced the attacks to half a day now, but haven't been on it too long. My doctor keeps saying, wait, it takes time to work. Well after 2 1/2 weeks of this long 30-60 second shocks, it is hard to wait.

so I am begging anyone who has had experience starting with Neurontin. How long does it take for some pain reduction on it? 2 weeks, 4 weeks, or should the doctor, in his experience, try me on another pain med? I tried Trileptal, last year, and at the most had about 4-5 long shocks a day. A big improvement over the Neurontin, right? But then Trileptal if you go up more than 1200 mg can have side effects, that maybe Neurontin doesn't? not sure.

anyone with any experience with Neurontin, please give me some info.

thanks,

teacher

I think you have Type I and not type II which is mainly being discussed in this thread. I take Neurontin in a cream I put on my face. It took about three weeks before I saw improvement. Try finding more info perhaps in the intro area of this site about the best meds for type I. Also some folks benefit greatly with surgery.

Hi, I take 2400-2700mg per day of Neurontin. It took about 4 weeks to work up to a working dose. Of course this may not be the med for you, they don't do the trick for everyone. Give it two more weeks maybe? Then see the Dr about an increase in dosage or a new med. Hope it works soon.

teacher said:

Hi:

not sure of the person who wrote this, about anyone having any success stories?

I tried B12+B1 injections and for over a year, I was pain free with them. Now they do not seem to work, but I will try again in another few months.

I also tried homeopathic herbs from Biogetica.com, and they worked for about 6 months. Then you have to get off them and go back in about 4-6 months.

I am on Neurontin and Baclofen, now, neurontin at 1200 mg. I am not sure if it is helping at all. I have never had such long and painful attacks about 50 a day. the Baclofen has reduced the attacks to half a day now, but haven't been on it too long. My doctor keeps saying, wait, it takes time to work. Well after 2 1/2 weeks of this long 30-60 second shocks, it is hard to wait.

so I am begging anyone who has had experience starting with Neurontin. How long does it take for some pain reduction on it? 2 weeks, 4 weeks, or should the doctor, in his experience, try me on another pain med? I tried Trileptal, last year, and at the most had about 4-5 long shocks a day. A big improvement over the Neurontin, right? But then Trileptal if you go up more than 1200 mg can have side effects, that maybe Neurontin doesn't? not sure.

anyone with any experience with Neurontin, please give me some info.

thanks,

teacher