God Bless You!!! I am New Here & You just made me feel a little better:)
Welcome Jewels!
I’m glad this thread helped you a little, that has always been my intention.
It can be so daunting getting a diagnosis and then reading so many people’s stories of struggle with pain.
So many people are able to manage their TN well on meds and lead productive lives.
(((Hugs))), Mimi xx
Warm Welcome to ALL our new members on the site, not all of you are newly diagnosed, but maybe you can share some tips!
Mimi
As someone new to TN thank you Mimi and all other contributors. I too had never heard about it and despite being used to pain of all descriptions it was the fact that nothing I took gave me any relief which was the hardest to deal with. I have recently discovered the double wammy that this thing can mutate....first on the left then to the right and just when I thought the left side was gone back worse than ever. I would just like to say although I don't always add to discussions I gain an awful lot from them, your combined knowledge is an invaluable resource. Once again thank you Karen xx
You’re so welcome Karen!
(( hugs )) Mimi
Mimi- this was a great post. Unfortunately I was diagnosed in August and this was posted in December. I need to process things by experiencing them and agree with everything that you have said. This should be a must read for all new members to the site. Thanks for putting these thoughts together in an organized fashion!
Chris
I first had the symptoms of Type II TN in 2006, but it was not successfully diagnosed until a month ago. I also have Type I which only manifests itself in extreme, but very short pain in the foramen at the midline of my right eyebrow. It doesn't happen very often, but it stops me in my tracks when it does. My neurologist also told me I have occipital neuralgia and neuropathy in my feet. So far, I have been prescribed oxcarbazepine (no side effects yet) and Cymbalta. Not so lucky with Cymbalta. I ended up in the emergency with suppressed resting breathing rate, decreased urine output, drastically lowered blood pressure, low sodium, chloride and calcium and lactic acidosis (which indicated the body is not getting enough oxygen. Because of this, my left toe was going numb. The emergency room had no idea of what was causing this. I went home and began doing internet searches. I found nothing at that time because I am taking so many medications, and I had no idea what was happening. I called my sister, who has CRPS, and she immediately knew it was Cymbalta. I had only been on it for 5 days. She had been on it 2 months and almost died. Once I knew which medication it was, I was able to do a better search. What I found was that the doctor should never have prescribed it for me because I have GERD, am taking naproxen sodium (Aleve) and my stomach empties slowly. What happens when a person who has any of these conditions is that the outer coating of the pill is broken down, releasing Napththol (which is used in pesticides). I just want to get the word out, so that anyone who has any of these conditions can be informed and tell a doctor who may prescribe this for them why they will not take it.
I love what you wrote Mimi. It's very comforting : ) I am on the site today because I thought I saw something once about what to do if you need to go to the dentist but I can't find it. Do you know where I can find that info? Thanks.
I am glad. I'm hope it will help others and motivate them to read all instructions, interactions with other drugs, cautions to doctors and warnings. This must be our responsibility because do not all doctors stay informed about all medications. I know better, but the print in the insert was so small and there was so much of it. After I had the reaction I went to the Ely Lilly website and, surprisingly, all information that should have told me not to take it was there. I encourage all of you out there to look after your own bodies.
On that subject, very shortly after I showed the first sign of trigeminal neuralgia II (I felt like I had sinusitis), a doctor prescribed Effexor XR. It caused me to have continuous muscle spasms all over my head, neck and shoulders. Now, in this case, those reactions were not listed on the companies website. My doctor refused to believe it was the drug. He wanted me to take more. I finally found those exact reactions on the NIH website and stopped taking it on my own. Now, my quetion is, could this reaction have brought on all of the other symptoms of trigeminal neuralgia I & II within the following years? Does anyone out there know the answer to this?
Hi Brainburn, you can find that info under the Face Pain Info tab located above in the black header bar. Scroll down and it’s there.http://www.livingwithtn.org/page/face-pain-info-pages-part-6a
Mimi 
Thank you Mimi : )
Alicia, too bad you had to experience such a horrible reaction to a simple anti-depressant prescribed a lot for chronic pain. Drug interactions are a big problem for me. I can't express how important it is to have a good primary that knows all the meds you are taking. Mine are prescribed by 3 docs, but my primary always asks me what I am taking, what is new at each visit. I would like to think he is watching out for issues but as the consumer I have to keep an eye on it.
Two kidney failures in '09 not caught by a previous primary because of serious interactions between a high blood pressure med and other meds non narcotic for pain...a non-steroidal celebrex got me into big trouble, 3 weeks in the hospital. I was somewhere between unconsciousness and coma.
Alicia, I had a problem with cymbalta within 3 weeks, confusion, again another first sign of kidney failure. So, know your bodies. And, yes there is a lot more about a drug in those inserts if you get one than what the pharmacy gives you. I had a primary that put me on cymbalta 3 years ago with tramadol and that is very dangerous, I had just gotten out of the hospital from kidney failure and bam, stiff muscles, jerking,,,serontonin levels too high, a very dangerous condition if not caught can lead to permanent neuro damage. I fired this primary almost a year ago, my new one is very good with me, we always spend some time going over all my meds. I am getting older, 57, so even things for hypo-thyroid, high blood pressure and gerd taken once a day can interact with all these drugs a neuro or pain doc likes to try.
These neuralgias are treated with anti-d's, anti-v's and the list goes on and on, I can't tolerate any of them. Baclofen seems to be the only safe one for me and not sure why I am taking it because it is not really helping...but if I have a few good hours of the day maybe it is.
So, I am left with narcotics only, not too safe either, and tolerance is a big issue. Staying as low as possible, take little drug holidays on days that are better so to not build tolerance.
Thanks to the internet there are great sites to look at mild, moderate to severe interactions. I know we can sometimes be so uncomfortable with pain it is hard to look all this up. Your pharmacy should be catching interactions but they just print a warning page for you and all the info is not on that page. Your primary does not always know everything either. We should not have to go through horrible side effects and interactions that put you in the hospital. And you won't find a doc taking responsibility for it, they write their summary pages indicating another cause...when I had kidney failure, it looks like drug overdose and that was the one they nailed me with even though my test results came back in normal ranges. I got that one because my kids did not know what was going on with me. Because their father had committed suicide I was presumed to have taken too much of a post-op pain med.
I read a lot of the posts and great, sometimes someone has good results with few side effects on some of these drugs. But be careful, long term side effects can show up after being on a drug for awhile.
Alicia, so sorry you had a horrible experience, I did too, but since '09 have not been hospitalized for anything regarding drug interactions. I take low dosages of everything I do take. Pain control is not wiping the pain out completely, this one just can't be, getting to lower ends of the pain scale is pain control. Sharon
Wow, there's a lot of really useful info in there which is great.. I have to say I freaked out when I was told that I had TN. It was diagnosed in November 2012 and when you're 27, being told that you have to live with something that your doctor has no clue how you got, or any idea if/when it will go away..well feels like the end of the world.
Oh yea that suicide disease thing...I mean you're in pain right and then some Internet website tells you "Oh btw, that's what it's also known as.." Not cool.
Here's what helped me:
1. to research a lot (but make sure you have accurate info)
2. Make sure you have a good doctor. I refused to see the doctor I was referred to at my clinic because he initially misdiagnosed me. Plus I wasn't comfortable with him. You need to have a specialist who knows his stuff, but who also answers your questions honestly and patiently.
3. Questions, questions, questions. I ask a lot of them. And you should - about your condition, about stuff you've read on the Internet, about the medication and its side effects.
4. Family and friends - do turn to them. They may not get right away what's going on, but they do care. Try not to be hard on them for not understanding. I know I gave my boyfriend a really hard time after I was diagnosed. Got mad at him for not understanding right away and I got really moody and depressed and wouldn't go out anymore, but he stuck by me anyway. It's taken my mom six months to truly grasp this, but she's been a huge support too. Don't shut the door to those who love you.
5. Join a forum like Living with TN :) It's been awesome for me and I feel so much better knowing I am not alone.
Thank you for sharing ...
Hi everyone, I’m very new to this site (having only joined last week), however, I just wanted to thank you for all this information. It’s very scary being diagnosed with TN and not having a clue about it (as like some people on here i had never heard of it before the diagnosis).
I was diagnosed with TN by my GP last year after believing that i had dry eyes which then turned into feeling like someone was stabbing me in my left eye and cheek with a needle. At the moment I’m on 450mg of pregabalin (lyrica) a day and need to actually increase this back to 600mg. I had quite a horrible reaction to tegretol at 600mg a day and I’m not allowed to be on it anymore. When the pain gets really really bad I take tramadol (150-200mg) at night as I can’t function during the day and work at the same time. I also use the cream Capsaican 3-4 times a day just to calm down the burning that I get in my face.
I found that during the winter, I had a continuous burn in my face with pain as well along with sinusitis, however now that the weather is warming up, I’m finding that the sun is burning my face and the heat (I live in England-it’s really not that hot-lol) really bothers my face. Has anyone else experienced this with the warmer weather?
I’m also scheduled to have the glycerol injection at the end of this month and I’m very very nervous about this especially as the neurosurgeon does not believe that it will work. I’m really at a loss as to what will help or what other meds I can ‘try’ as nothing so far has made an impact except for tegretol (except i cant be on that anymore as i had an allergic reaction to it). The pregabalin works but not anywhere as good as the tegretol did. My face just feels very sore a lot of the time.
I was wondering if anyone has used any other medication that I could possibly take to my dr and ask about .
Thanks in advance for any replies that I get.
Hi Marcie
So sorry that you are having so much pain. Yes, it is scary and there is so much to learn. But you’re not alone. Many good listeners here and lots of willingness to help. Good for you for reaching out.
I can’t take either tegretol or trileptal either. Lyrica did not do anything either. I take up to 3600 gabapentin as well as tramadol. Also have recently added nortriptyline for the burning. Many here also take amitriptyline to help with burning.
Sun and warm/ hot dry weather make me flare. Unfortunately I live like a vampire in the summer…
I am wondering why you are going ahead with the glycerol injection if your neurologist does not think it will work. I guess the most important question you need to ask is Do you think that this destructive procedure will work? How do you feel about it at a gut level?
Perhaps you could give gabapentin a try before trying a big procedure.
Bellalarke
Hi Bellalarke,
At the time of saying that I would go on the waiting list for the glycerol, the neurosurgeon had to told me to go back to me GP and ask to be put on the tegretol. Basically they had to push as high as I could on the tegretol until I couldn’t take the side affects any more and if I had no pain then it meant that I had TN. This was going to be the be and end all of deciding for the neurosurgeon and myself actually. I also decided/agreed to go on the waiting list for the tegretol as I figured that by the time the surgery came around I would know whether the tegretol worked or not. It worked beautifully and I went without a scarf/face covering for about 2-3 weeks and I could touch my face and I felt absolutely no pain. However within 2 weeks of coming off the tegretol I’m back to quite a lot of pain and feeling like someone is poking a needle through my eye and cheek again. So I kinda feel like I have to try the injection even though it might not work. I see the neurosurgeon next week for the pre-op assessment and he’ll already have been informed by my dr that the tegretol worked which means that hopefully the injection should work. At the time the neurosurgeon said that I didn’t have it as I said that I have a lot of pressure in my face and apparently that’s not a symptom of TN. The pressure has now almost gone as I have sinusitis as well and am on nose drops for that.
At this point I’m willing to try the injection and see if it’ll work as I don’t know what else to do and am at a loss. I was on amitriptyline at the beginning and it didn’t even begin to touch the sides of the pain, so went to see another dr who then put me on lyrica and tramadol. The lyrica helps but not like I’d like it to help. But I’m off to see my dr today to give him a list of medications that I’d like to try and to see what he says. I don’t want to stay on these medications long term as I can’t function very well on them hence thinking that maybe the surgery will help. My job will be at risk if I can’t get this sorted so I feel a bit of pressure in sorting out the medications and also trying the surgery but I really don’t know what else to do. I just want the pain to go away and never bother me again, but it seems as if I’m going to have this long term unless it goes in remission. I live daily with being consumed by trying to figure out when the next attack is going to happen. But aside from that, it hurts to smile and laugh and talk and eat and everything that I like doing it hurts to do. So I’m willing to try the injection just in case…
Marcie
I do understand how awful it all is. You just sounded a little hesitant about the injectio, hats all. Please ask to try gabapentin. Has anyone ever talked to you about MVD? Have you had an MRI? Todd luck with you appointment today. Let us know how it goes.
Peace and kindness
Bellalarke
Hi Marcie, I just saw one of the neurosurgeons on this site and he will not do this type of procedure, I think it is a type of rhizotomy...this doc will only do MVD. He believes anything like rhizotomy will make the pain worse. Ask about this as I am not sure, I just read something googling that this procedure is like rhizotomy, a destructive procedure to the nerve. Be cautious. I know you want relief, but I would get a second opinion, MVD was the only surgery this doctor will do. Sharon
Marcie said:
Hi everyone, I'm very new to this site (having only joined last week), however, I just wanted to thank you for all this information. It's very scary being diagnosed with TN and not having a clue about it (as like some people on here i had never heard of it before the diagnosis).
I was diagnosed with TN by my GP last year after believing that i had dry eyes which then turned into feeling like someone was stabbing me in my left eye and cheek with a needle. At the moment I'm on 450mg of pregabalin (lyrica) a day and need to actually increase this back to 600mg. I had quite a horrible reaction to tegretol at 600mg a day and I'm not allowed to be on it anymore. When the pain gets really really bad I take tramadol (150-200mg) at night as I can't function during the day and work at the same time. I also use the cream Capsaican 3-4 times a day just to calm down the burning that I get in my face.
I found that during the winter, I had a continuous burn in my face with pain as well along with sinusitis, however now that the weather is warming up, I'm finding that the sun is burning my face and the heat (I live in England-it's really not that hot-lol) really bothers my face. Has anyone else experienced this with the warmer weather?
I'm also scheduled to have the glycerol injection at the end of this month and I'm very very nervous about this especially as the neurosurgeon does not believe that it will work. I'm really at a loss as to what will help or what other meds I can 'try' as nothing so far has made an impact except for tegretol (except i cant be on that anymore as i had an allergic reaction to it). The pregabalin works but not anywhere as good as the tegretol did. My face just feels very sore a lot of the time.
I was wondering if anyone has used any other medication that I could possibly take to my dr and ask about .
Thanks in advance for any replies that I get.
I am very hesitant about this and any other procedure. But I’m also struggling with being on the medications I’m on and also finding the right medications to be on. Ive had an MRI but it came back as normal. however my GP and the neurologist both said that i have TN. Apparentky TN does not always show up on the MRI scans. However whats MVD?