Hi I'm new to this and only got diagnosed with trigeminal neuralgia 4 months ago. I had an MRI scan on the 8th of August and my results date is set to be the 21st of September. I'm only 20 years of age and I am currently taking 1100mg of tegretol a day, it takes the edge off the pain but it doesn't go away completely. I feel constantly exhausted and confused, I just wondered if anyone can relate to this and maybe help me out? I'm feeling isolated at the minute as there is no exterior side effects, when I explain to people I'm in pain they just respond with 'I can't see anything wrong'. so I thought joining the forum may make me feel a lot better as people on here can relate to what I'm going through!
Hi
How strange our daughter is also 20 and was diagnosed a couple of weeks ago with TN, you are both so young to have this awful condition. We are still waiting for the Neurologist appointment which is due at the end of September even though this was an emergency referall.
You are definitely not alone but it is important to have a good support network around you and that is where we are concerned as our Daughter goes back to Uni in a couple of weeks for her final year to be a Nurse. Our Daughter is on Carmazepine and tops up with Tramadol and Naproxen for pain control, she has started going to Reiki sessions each week which she feels is really helping as it relaxes her a lot. We are not saying that it will help everyone but for her it has helped to cope better. Our Daughter also has the same feeling that people look at her and can't see anything wrong but obviously they cannot understand the constant pain that she is in. All the best to you and keep on the forum and let us know how you are doing. Take care Paul and Family
Hi Katie, I can fully understand what you are going through, my friends and family are probably sick of hearing me go on about something that they can not see. I have battled with TN for over 10 years and only recently have been diagnosed and started on medication. I find the Tegretol to be of some help combined with Amitriptiline on a night time. Dawn
Hi katie, I was diognosed in December 2015 and I was advised to take the tegrotol slowly untill the pain went away, my doesage went up to 1200 mg. I have a lot of side effects memory loss twitching. Your not a lone all my family dont understand they some time laugh at me because I cant hold a conversation without getting confused. Have you tried the Trigeminal Neuralgia Facebook too, they are really helpful Patient is too, keep us updated how you get on ?
Hi Katie, first of all I'm so sorry that you have been diagnosed with this horrible disease, particularly at such a young age This forum is great for support and information. I know what you mean about it not being a visible thing, although when mine is particularly bad I can't talk too well because the pain in my lip on the right hand side of my face makes it difficult! As others have said it's all a question of increasing medication slowly in order to get some relief. I understand how the drugs make you feel though. I am awaiting an MRI scan to see if they can find out what is causing the pain. I have had it for 15 years, with episodes of remission, but it's been constant now for the last several months, so something needs to be done! I hope you feel a little less isolated now my lovely.
Wow, such a young age to have this monster. I am so sorry. I completely understand what you are saying. People are listening to us, but they have no idea what we are up against. I have had TN for four years, with Gamma Knife Radiation and Micro-Vascular Decompression done. Both of which failed. Now I am experiencing all the side effects of the procedures along with TN. Please do RESEARCH on this monster, so you and your Neurologist can come up with a plan for you. I chose the procedures because they sold me a bunch of hog wash statistics, and I was in pain. Anyway, I now take Lamotrigine 250 XR/day. It seems to take the edge off with very little side effects...I know, we have all heard that about side effects. Just curious, where are you from, and have you had dental work done. I know, off the wall questions. I am from Arizona, and alot of dental work done.
Hang in there, because we are all in the same boat and supporting you all the way.
God Bless,
Greg
Hi Kate, I have this horrible thing too. I got it young and I've lived with it off and on for years. I'm not on any meds as I hate taking meds, but I have found something that works amazingly well at getting rid of the pain. Neuralgia is hereditary in my family. My mother and sister have it. One of my sisters had a major op, but that wasn't successful. Anyway, what helps my pain is asprin, good old asprin. It's remarkable how it takes the pain away. I don't get an attack for sometimes months after asprin. Another thing is this. Some people do not absorb magnesium and b vitamins well, but particularly magnesium, I don't neither does my family. I would recommend you buy from either a naturopath or good quality health food store, not supermarket, magnesium. Most check magnesium that don't absorb well will give you the runs, but a good quality one that is 100% CHELATED MAGNESIUM. Take it about 1 hour before bed with orange juice. Vitamin C helps with the absorption. Take an asprin with your neuralgia starts, you might be surprised at how well it works. Let me know how you go. Btw, I woke this morning with an attack. Bam bam bam pain, horrible. Came home after school drop off, took two asprin in water and wow, evil neuralgia gone. I need to buy more magnesium today as I'm out hence the attacks xx
katiehdmahon
Hi sweetheart,
It saddens me to hear that many young adults such yourself are experiencing TN symptoms.
TN is such a horrible thing "for anyone to be experiencing at all"... But. For someone as young as you ... Well; Lets say it is very unfortunate and very unfair.
(TN is not a very pleasant thing to live with, at any given age)
I am 52, and have only experienced TN now for about 2-3 years at most and I cannot imagine myself having started experiencing TN at your age. Ohh my God! That is so sad Katie.
I hope you can find some comfort with meds at first, but. Encourage you, or anyone suffering with this horrible TN condition, to find ways to coupe with it without having to take so many meds, or perhaps not taking meds at all.
On a personal note: Meds for me "have not being very kind to my body at all." I have experienced lots of unpleasant side effects while I was on them, which laterally drove mad, and gave me courage me start trying different methods to alleviate some of the TN pain symptoms.
I have found that by keeping me occupied, or active, it minimizes the TN effects to about 70% of the time. Now the TN effects only occur to me while I am at sleep. Since I do try to keep myself busy most of the day, every day.
I understand that TN affects everyone differently, and that not everyone may be as lucky as me. But. Trying to find comfort with the use of physical activities and excersise in stead of meds, I really feel that it does not hurt at all to try.
Meds are the last thing you want to keep taking "especially by someone as young as yourself." I hope you can find comfort some how, and I wish you lots of luck.
Please! Keep asking questions about TN, the most you know about it, the better it will prepare you and help you to deal with it.
God bless you!
Do you have typical or atypical TN? I am 26 years old and have atypical TN. I try to find other young people with atypical one to discuss treatments and support each other.
Hi guys, thank you so much to everyone that has responded to me and given me advice. it's so nice for people to be able to relate to what I am currently going through. Hearing everyone's different stories is pretty amazing, the pain just randomly started in my front lower teeth I took two trips to the dentist for them to tell me I have hypersensitivity. I then started to get the face pain, they thought I needed root canal but I didn't end up having any dental work I went straight to a&e because I had tried every strong pain killer. co-codamol, tramadol, aspirin you name it and nothing was helping. I felt like I was going round in circles, the doctor then examined me and told me I might possibly have neuralgia and proscribed me with naproxen that didn't help one bit. I then got refered to facial specialist, who then diagnosed me with TN and proscribed me tramadol but it is wearing off and the side effects are horrible, I have extreme fatigue I feel constantly sick but they can't do anything until I get my results. I hope I have helped by explaining my story to those who are new. I'm just wondering where everyone is from? I'm from Bimingham, England .. just thought it would be interesting to see if anyone that has TN is from the same place as me. Everyone has helped me so much by telling me their stories I feel so much better in myself now, knowing I have people to talk to!
Thank you, Katie xx
Sorry guys the specialist proscribed me TEGRETOL
My atypical TN startides the same way as yours. Unfortunately I was fixing my teeth for 4 months. After 4 months I started to get electrical pain in my face and then I understood that it is not my teeth. I tried all the medicines but nothing helped.
My MRI showed one small blood vessel. I had the MVD operation. They found 3 small blood vessels in contact with the nerve and scar tissue on my nerve. They fixed everything and I got rid off the shooting pains. But constant strong pain stayed. So now I'm worried that maybe my nerve is damaged because of the scar tissue (by the way they don't see that on MRI)
Now I take max dose Neurontin, antidepressants and opioids. Tegretol didn't work at all. I'm only 26 so it is very scary.
How are you mentally doing? For me it has given anxiety, depression and panic attacks. So I'm working with that problem also now.
I live in Norway, but I am Estonian. So we are pretty close to each other. I have never been in your home town, but have been several times in London. Is there many doctors in England who know about TN?
Hey Katie..I'm from Devon, soon to be moving back to Cornwall!
Hello Katie again! I am from the States. Arizona to be almost exact. I have not found many people from the States. Where are they?
I read a response, and in the response it said to get the book "Striking Back". So I did, and it has every answer to this "monster" we all are dealing with. However, it does not replace this forum that we get to tell are stories to others about. Keep sharing, it is a coping mechanism to keep us sane...so to speak.
God Bless,
Greg
Hi Greg. I will look into that book. I've had 4 days now of utter torturous intermittent shock pain, I'm at my wits end. This is really bad this time around, I need asprin 4 hourly to keep it a bay. Started back on magnesium yesterday and I've booked an acupuncture session for tonight, so I hope this helps. Fingers, toes crossed
Totally with you on joining this. I hope your relief comes swiftly. The Teg would make me lose focus and become confused or cloudy also . Hopefully it works for you I currently take Gabapentin . We aren't alone , no worries we got this . We ALL got this'
I'm from the States man. Feel free to follow. What is this book you guys are talking about ?
Hey TN Sucks,
Sounds like my post. Anywho, the name of the book is called "Striking Back". George Weigel and Kenneth Casey. How ironic, the author of "Striking Back" is going to be in Tucson, Az. on Sept 10. That is where I live. It is going to be at the same hospital where my MVD FAILED! If they have a Q&A, is there anthing you want me to ask, as I have some questions also. I pray for manners...if you know what I mean.
Yes, I have a venting tool at my disposal. It really doesn't hurt THAT much, when I am on here.
God Bless,
Greg
Hi Katie, I am quite a private person and do not advertise my condition and I have never thought about joining or replying to any forums this is the first one I found on google, until my experience 3 weeks ago
Its Kev from Cov, I was diagnosed about 2 years ago, although I think I had it longer than that as I have had a lot of dental work. I believe that I have had dental work that was not actually required.
Dentist do not understand or recognize this condition, shame on them
Medication: I am currently on 1500mg of tegretol and 600mg of Neurontin and I am currently under control, IE no episodes
However, if under control is not exercising or doing day to day activities for fear of an episode, I read one of your replies and I also have found as soon as I sit down in the evening I tend to fall asleep, meds!
When diagnosed from a specialist, they recommended a MRI, however my doctor admitted that he did not know what to look for, a bit of a waste of time
Doctors, well unsure how you have found them, they don’t seem to have any understanding, either googling or pulling out their med books to find out about the condition
I visited the doctor 3 weeks ago with a dull ache along my right jaw, feeling it was getting me down, and could he help, well obnoxious to say the least, he prescribed me codeine, I tried to explain that normal pain killers don’t help however he was insistent that these would ease the pain. 2 ½ days later I was inconsolable and visited A&E where there prescribed me Neurontin.
I have never experienced anything like this before, I don’t recall much about it but a firework display going off in my head continually was the only thought I could muster.
Normally my pain varies a dull ache to a small electric shock, then the major pain which I can describe as an electric shock going through my jaw, through my eye and into my brain, although I don’t think the last is actually descriptive enough, I first described it as a hot knitting needle being pushed through my jaw, eyeball and brain, horrific but I don’t have to tell you or any of the other suffers
I have just seen a neuro surgeon and basically, I inferred from him that unless I was laid up in bed inactive and had tried every drug on the market that he would not do anything, however I have another MRI this week with a neuro surgeon looking at the results, so it will be interesting to see what the results show.
Watch this space
Kev
So sad that you are so young, but there are choices in treatment. Not everything works for everyone. Don’t give up,besides drugs acupuncture worked for a while. Look into pain management doctors might help. Keep trying . Good Luck