Hi,
I went to the neurologist y'day for severe left ear and left eye pain and he said it was mostly trigeminal neuralgia. Also my vision in the left eye got blurry.
I've been going to neurologists for the past year for multitude of issues .. I had an MRI as recently as a month ago looking for MS. That was negative.
He wants me to go to an eye doc and has prescribed somthing like Tegretol (I don't remember the name)
What is the prognosis of this neuralgia ?How long will I need to be on medication? The blurriness and pain is better today ?What do drugs like tegretol do ? He said these problems generally resolve on their own in a while or in an extreme case might require surgery. ANy experiences ??
I have TGN. I had my first episode of pain I was about 27, which is unusual (most people who get it are in ther fifties or older). I remember it vividly; I was on an escalator in a department store and suddenly felt like I'd been shot in the face--I nearly fell down the escalator. At first, the episodes were fairly infrequent, maybe several times a year and lasting only a day or so, but about eight years ago that changed, and now the pain is constant (or would be if it weren't for the meds).
From what I have learned, the episides come and go, but eventually the time between episodes gets smaller and smaller, until a time comes when the pain just doesn't go. Mind you, some people never reach this point, and then you have the freaks like me, who reach that point when they're in ther thirties. I don't understand what your doctor meant by TGN resolving itself--if he meant that it will eventually go away, he is incorrect (according to MY neurologist). The flare-up, or episodes, do come and go, but they always come back.
Anyway, I also take Tegretol, in combination with Elavil. As time goes by, the the Tegretol becomes less effective--however to put this into perspective, I started on 200 mg Tegretol and after eight years have had to increase it only to 600 (Maximum dose is 1200 mg per day; I have not had to increase my dose of Elavil).
If the Tegretol works for you, then you're one of the lucky ones. Some people don't respond to it, or to Neurontin (the other medication for TGN), and must resort to surgery. Surgery isn't always effective or, if it is, the effects sometimes last only a few years.
I see your post is about two months old--have you started taking the Tegretol yet? It makes you feel like a zombie, unfortunately, while your body adjusts. Most people adjust to it--I didn't, but I discovered if I tke all my pills at night, I sleep off the zombie effect and the Tegretol concentration in my bloodstream remains high enough to control the pain all day. The only times I take Tegretol during the day is if I have a flare-up while I'm at work. I don't, however, recomend playing with your dose until you've discussed it with your doctor (as I did).
I don't remember the blurred vision, but then again the pain had been so intense for so long I may well not have noticed it (I didn't get correctly diagnosed until eight months into that last, long-term episode). I have numbness on the right side of my face, however, and the Tegretol makes my hands twitch involuntarily, especially is I'm grasping something, like holding a book while I'm reading. The twitching is nothing more than a minor annoyance, however.
A good information website is the Trigeminal Neuralgia Association website at [url]www.fpa-support.org/[/url].
I am a victim of Trigeminal Neuralgia and have had it for approximately 12 years. I am not a person who likes to take pills, therefore I endured the pain until a couple of years ago when the Gamma Knife was recommended. A piece of cake. That same day the pain was gone. It has now returned but not as severe; still very severe, but in a different way. Someone recommended I look into the Cyberknife. Any recommendations? I live in Houston where we have the finest medical center in the world, but I want to reach out to the world to find answers as well. I haven't found anyone here who does the Cyberknife yet.
I don't have any diagnoses as yet, but the main symptom of my as-yet mystery condition is "constant pressure" in my head. It also extends down into my neck, and from my neck down into lower back. It is most noticeable around the temple area on both sides of my head, although it can be felt anywhere.
I'm writing this here because I have heard that some TGN folks have "pressure" sensations... have you guys heard about this?
I'm 27 now and have had constant head pressure for nearly 5 years at this point. This has taken an incredible toll on my ability to function normally... I *don't* function normally, now I have limitations as to what I can do (which some people don't believe ). For instant, the sensation destroys attention span and, in addition, I have many other symptoms at this point (more symptoms have popped up gradually over 5 years.)
I am a victim of Trigeminal Neuralgia and have had it for approximately 12 years. I am not a person who likes to take pills, therefore I endured the pain until a couple of years ago when the Gamma Knife was recommended. A piece of cake. That same day the pain was gone. It has now returned but not as severe; still very severe, but in a different way. Someone recommended I look into the Cyberknife. Any recommendations? I live in Houston where we have the finest medical center in the world, but I want to reach out to the world to find answers as well. I haven't found anyone here who does the Cyberknife yet.
Are you opposed to the vascular decompression surgery? I know the idea of it is scary but it worked wonders for my sister. She's been pain free for about 9 years. She had it done at Presbyterian Hospital in Pittsburgh where it was invented. They have a TN clinic there. The TN Association also has a list of doctors that are approved to treat this condition and do the surgery.
I don't have any diagnoses as yet, but the main symptom of my as-yet mystery condition is "constant pressure" in my head. It also extends down into my neck, and from my neck down into lower back. It is most noticeable around the temple area on both sides of my head, although it can be felt anywhere.
I'm writing this here because I have heard that some TGN folks have "pressure" sensations... have you guys heard about this?
I'm 27 now and have had constant head pressure for nearly 5 years at this point. This has taken an incredible toll on my ability to function normally... I *don't* function normally, now I have limitations as to what I can do (which some people don't believe ). For instant, the sensation destroys attention span and, in addition, I have many other symptoms at this point (more symptoms have popped up gradually over 5 years.)
hi bill. i too experience the pressure feelings in the temple travelling down my face and into the neck and back of the head.These are becoming more frequent. i was diagnosed with tgn/atypical facial pain 6 years ago.worst pain is in my teeth.taking tegretol, lyrica and ametriptyline which have a sedative effect. i can no longer drive because of the drowsiness.personally, these medications only take the edge off the pain. getting back to your problem, do you suffer with sinusitis ? i have been putting these weird painful attacks down to sinusitisfor decades, when maybe its been tgn all along.
Titchou, thank you for your reply. The Vascular Decompression surgery was discussed with me vs the Gamma Knife, and of course, I went with the GK as the VDS didn't sound so good to me. I am delighted to hear about your sister and hope that she continues with the success. I will definitely look into the program in Pittsburgh, and I thank you for that information.
They might have someone in Houston or Dallas that learned the technique there in Pitt. I know there are several around the country. One is here in Birmingham where I live and operated on the son of a friend also for TN. He turned out well also. Good luck. I know how painful and debillitating this can be. My sister suffered something awful before her surgery. She said she knew on the way back to her room from recovery that it had worked because an A/C vent blew on her and it didn't hurt!
hi bill. i too experience the pressure feelings in the temple travelling down my face and into the neck and back of the head.These are becoming more frequent. i was diagnosed with tgn/atypical facial pain 6 years ago.worst pain is in my teeth.taking tegretol, lyrica and ametriptyline which have a sedative effect. i can no longer drive because of the drowsiness.personally, these medications only take the edge off the pain. getting back to your problem, do you suffer with sinusitis ? i have been putting these weird painful attacks down to sinusitisfor decades, when maybe its been tgn all along.
It can't just be sinusitis at this point, as my entire body is affected, even my gait is affected. I don't have dizziness often, but the pressure sensations I have in my head and my body seem to affect my posture, somehow. It's tough to describe. I also have this tightness in my forehead/around my eyes that affects my vision.
Hi,
I went to the neurologist y'day for severe left ear and left eye pain and he said it was mostly trigeminal neuralgia. Also my vision in the left eye got blurry.
I've been going to neurologists for the past year for multitude of issues .. I had an MRI as recently as a month ago looking for MS. That was negative.
He wants me to go to an eye doc and has prescribed somthing like Tegretol (I don't remember the name)
What is the prognosis of this neuralgia ?How long will I need to be on medication? The blurriness and pain is better today ?What do drugs like tegretol do ? He said these problems generally resolve on their own in a while or in an extreme case might require surgery. ANy experiences ??
Hi. I have been diagnosed with Transgeminal Neuralgia (its spelled wrong in your post and the title has been spelled wrong too). There is a place where all those with transgeminal neuralgia have been forming on the net called endthepain.org created by the Transgeminal Neuralgia Association.
Tegratol in its generic form is called Carbamazepine. Although this medication was originally created for people with epilepsy, it does help with the "Crisis" or "seizures" that your nerves through out your head have.
I also have been diagnosed with Glossopharyngeal Neuralgia, Transgeminal Neuralgia and Occipital Neuralgia. There is no cure for either and according to Doctor's who have handled patients with these "disorders" there is no cure and told me that these are diseases of Pain (vs diseases of decay like cancer or cardiovascular diseases).
While there are many types of "surgery", implants and medicines available I am seeing that most work for 24-36 months prior to the pain reoccurring full tilt boogie.
I had horrible TN for a few years. I was put on Aggrenox for a TIA I had. After that I only have had a couple of attacks. I swear it was the Aggrenox that helped me. I had done the research on surgeries, Gamma Knife, etc. and had decided I wouldn't do any of them because the long term prognosis isn't good at this point.
__________________
Dragonfly57
Disabled
A lot of diagnoses
Only by the grace of God do I keep on going
Hi :
I have had Trigeminal neuralgia for 21 years. I was assaulted in 1988 when I was 28 and woke up with a stabbing pain in my left ear that feels like an ice pick is being thrusted in my left ear. The pain is constant and horrible in nature. I have been on every drug for the condition with little or no effect. I am currently on Ms Contin and MSIR, which helps a little bit. For your sake I hope that this is not what is wrong with you. gOOD LUCK WITH YOUR CONDITION
Thank you for your response. Indeed the MRI's and other test have shown that my myolenial (spelling) sheath is gone and that I have compression on the Trigeminal nerves. In addition, I have glassopharyngeal neuralgia and occipital neuralgia - which is whip lash and I get it when the Trigeminal whips my head around too fast.
Being "Allergic to the wind" is hard to explain to people. Now I simply look like the old hippy terrorist in that I wear a do-rag over my head and have to have one of those winter wind guards over my face when outside, sitting beneath an air vent in the homes of friends or family or near air conditioning.
The tegratol works but I can't take the 200mg because that is swollowed, instead I have to double up on the 100mg through out the day because those are chewable and have a direct effect on the glassopharyngeal so that my tongue and throat do not get paralysed and swollen again. Loosing my taste buds the first time was nasty but the second and third time taught me to cut out my favorite spicy southwest and hu'nan foods.
One thing I have found is that there is no cure. All those cure's people have tried from brain surgery that involves placement of teflon pads between the nerves to chemotherapy have all ended up failing for so many who are grabbing at any straw and they all say it comes back with a vengeance. I want no vengeance as this is bad enough.
* removed *
Plentiful prayers and bountiful blessings,
WandaLou
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Reason: Please don't post links and instructions regarding commercial websites as per Posting Policy. Thanks.
I had my first attack when I was 21, I thought I was having a stroke, it felt like an axe going through the right side of my head, down my face. Buckled my knees and I couldn't think or see for several minutes. Thank goodness these episodes were only once or twice a year through my 20's. Neurologist at the time said trigeminal neuralgia or migraine and as I never really followed up nobody really looked into it, I would have an epicode, go get a shot, lay in bed til it quit and go on. Then in my 30's it started getting worse, more frequent, involving ear, teeth,tongue, throat,eye. Horrible sinus pain. Loss of sensation in skin on that side of my face, I have had mri's ct scans everything, I take tegretol, tried elvil couldn't take it, lyrica, just got off it after almost 2years. I have other pain conditions but this is the one that really defeats me. And now I don't have a day I'm not in pain, I am so sorry for anyone who has to go through this. Winter is really bad, cold wind sets me off really bad. Good luck folks.
Hi,
I went to the neurologist y'day for severe left ear and left eye pain and he said it was mostly trigeminal neuralgia. Also my vision in the left eye got blurry. I've been going to neurologists for the past year for multitude of issues .. I had an MRI as recently as a month ago looking for MS. That was negative. He wants me to go to an eye doc and has prescribed somthing like Tegretol (I don't remember the name) What is the prognosis of this neuralgia ?How long will I need to be on medication? The blurriness and pain is better today ?What do drugs like tegretol do ? He said these problems generally resolve on their own in a while or in an extreme case might require surgery. ANy experiences ??
Your MRI should confirm to your neurologist whether you have trigeminal neuralgia. Where your skull sits on your spine, draw a line straight across to your chin and then back around to your atlas or where your skull sits on the spine again. The Trigeminal nerve handles that area, right or left. Sometimes if people have been in wrecks or accidents, then the trigeminal can be damaged, sometimes the normal compression of their bodies over time cause the problem and other times.... think of an electrical wire - you know - it is covered with that rubber protective coating. The myolineal sheath is just like that protective coating, except.... its falling off or wearing away for some undefined reason.
You WANT to make certain that your neurologist KNOWS and UNDERSTANDS about these neuralgia's. Otherwise, you will have a Dr that looks at you like you are faking it or gives you the "you don't look sick" look. * removed * If your Doctor "balks" at you doing your own research, back away.
For me, my ear started it all and then it moved also to the top of my head, my upper lip went to sleep or has held that sleeping feeling. All prior to mine being diagnosed. The shocks of electric caused my head to whip at such speeds it caused another swelling in the atlas area (that part of the skull that touches the spine) and gave me whip lash. The electric shot through my mouth and killed all the roots to my teeth over night. Meanwhile, like you, my ear hurt the entire time and the pressure on my left eye caused double vision.
The nerves are actually "seizing" or having seizures. The tegretol is used for seizures and seems to help in a great way for mine. I am taking the full 1200 mg a day - divided up through out the day. I also have a pain medication that I use for when I have a really bad day. At the http://www. * removed * you will find that once you have this, it may subside but then will come back again in 3-6-9 months much harder than before. To help stop that pain from being too harsh, you remain on the tegritol or maybe the carbamazepine which is the generic.
My Doctor referred to Trigeminal Neuralgia as a disease of Pain and not a disease of decay like heart diseases, cancer, etc.
Some people have those lapses where there is no pain at all. I have not realized that at all. I pray that you do.
Plentiful prayers & bountiful blessings,
WandaLou
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Reason: Please don't post links and instructions regarding commercial websites as per Posting Policy. Thanks.
I had my first attack when I was 21, ....I have other pain conditions but this is the one that really defeats me. And now I don't have a day I'm not in pain, I am so sorry for anyone who has to go through this. Winter is really bad, cold wind sets me off really bad. Good luck folks.
Well lady, I am keeping you in my prayers. * removed * The important thing to know is that you are not alone in this. At Walmarts, in the hair care area for African American's are nylon caps of a variety of sizes you can put over your head to stop your new found "allergy to the wind" whether it is someone's fan, air conditioning, a gentle breeze, or winter itself. Then you can get from the Walmart fabric department a piece of fabric to wear across your face shielding you from the wind, fan's, air-conditioner, etc. Like I said, makes you appear like a terrorist when in fact you are protecting yourself.
The trigger point on me is from my left eye thickness of my skull and then up... so even if I put a cap on, that side which goes down to my face is a trigger.
For those who are new reading this, Trigger's are those things which set your trigeminal nerves to seizure causing you the pain.
Plentiful prayers and bountiful blessings to you,
WandaLou
Last edited by hb-mod; 05-03-2009 at 04:42 AM.
Reason: Please don't post links and instructions regarding commercial websites as per Posting Policy. Thanks.
Hi, I have had Trigeminal Neuralgia for several years now, it started in my later 20’s and we never really figured out what it was until 2006 or 2007 when I was finally diagnosed. I kept going to my dentist as mine is in my left side jaw. Or at least that is where it started.
Since about 3/13 or so, I have been under attack. I was unable to eat, drink, speak or anything that required jaw or tongue movement for about 2 ½ weeks. It has gotten a little better in that I don’t have quite as much pain, but it is still pretty bad. I have a 3 year old who just does not understand why mommy can’t talk, I have to talk to him and ohhh does it hurt. It hurts so much.
I had read too that usually people don’t get this until they are in their 50’s. I’ll tell you something, I wish I were 80 so that I would have only a few more years to deal with it.
From everything that I have read up on concerning the surgeries, none of them are too great. And it never really goes away. I am just at my wits end almost and I decided to try to look into message boards for a little relief.
I was started on Tegretol 200mg, 1 pill 3 times per day then within a few months added in Baclofen. As the condition has gotten worse, we have worked in Neurontin.
I am taking 25 pills a day, Tegretol 3 200mg bill 3x per day, Baclofen 20mg, 1 pill 3x per (plus more as needed) then Neurontin 3 pills 3 times per day. I had been very lucky and didn’t really feel too much of an affect on my mental agility while taking the meds, I know that my concentration level is weakened and that I seem to lose the words that I am looking for, but other than that, I was very with it. Well, until last week. I started to see everything really wavy and moving all over the place. Apparently I was getting too toxic, meaning that I had all the drugs in my system that it could deal with.
Now we have decreased the Tegs to 2 200mg pill 4x per day the baclofen is the same and the neurontin was increased to 4 pills x per day.
I am only 32 and have to go buy a 4 pill per day medication sorter. My parents don’t even use those.
I was unable to eat, drink, speak or anything that required jaw or tongue movement for about 2 ½ weeks.
The difference in the 100mg tegratol and the 200 mg tegratol is that you chew the 100 mg and you swollow the 200 mg. When you chew the 100 mg it immediately starts taking control over the tongue and throat issues associated with the glassopharyngeal neuralgia. When mine was done with, the taste buds began to fall out of my tongue and I had to start all over with tasting things. Sugar taste really narley and for those few weeks you can not use your tongue it is as if it is paralyzed on the back quandrant but that little portion being immobilized in that manner affects the rest of the tongue. It is really difficult to chew anything and soup becomes a mainstay. this is when you have to alter your diet, as anytime you now eat anything "spicy" in any form, you can flair this off and feel this again. So my 200mg taken 6 times a day - is now with the 100 mg tablet chewed, because I do not want to have that happen to my tongue again.
). For instant, the sensation destroys attention span and, in addition, I have many other symptoms at this point (more symptoms have popped up gradually over 5 years.)
Re: Trigeminal neuralgia 
