In the middle of an 'episode'

1

Well, first off, I just joined here. Glad there is a place like this out here in the vast web’ness.


I'm Jon, from Yakima WA... I believe all of my nerve problems started at age 15 (aged 36 now) but I thought they were dental issues. Lost a lot of good teeth, only to have this problem get worse. Then, last year it REALLY hit....

My last major episode was last year between Jan and March, which is when the doctor and dentist hopping began, to find out what the heck was going on. It took a dentist to tell me I probably had 'TN'. I really didn't want to hear that. Like most of us, I wanted to hear that he'd found a simple shoelace untied way back in my mouth, and could be repaired. ...easily, and for only a dime.

Started taking my meds. Depakote, which I really don't like....but that's hopefully changing soon.

About 10-11 days ago (lost count) I started having another episode. First it started with not being able to chew on one side; which turned into not being able to move my tongue too quickly, then I couldn't even talk, eat, drink or anything. It was horrible.

At the moment, I'm nearing the end (I Hope) of this one. I can eat a bit now, I can drink now and even get a few words out... (like 'thank you' and 'I love you' to my darling caring wife).... but now I can't sleep. It's been about 6 days since the pain 'triggers' itself, or I move my tongue in such a fashion that my right side catches fire and wakes me up. I can calm it down a bit by rubbing my face with a cold towel, but my skin looks horrible!

Anyway, I believe I've had TN for many years, but am only starting to realize what it is and how it's affecting me. How do my episodes stack up to yours? I know some of you out there have it MUCH MUCH worse than I, and my heart goes out to you for sure.

Lastly; what pain killers are you guys/gals taking? I know Vicodin didn't do anything for me. I even got 20mg of methadone once and that wouldn't even touch it... (I know, right?)

Thanks in advance;
Jon

PS; feel free to throw out any advice on other meds as well.
2

Hi Jon,

I’m new here as well and I don’t think my pain episodes measure up to what you’ve been going through but the great thing about pain is (there’s a great thing???!!!) you can’t remember what it feels like. You only remember that you had it and wanted to die while you were having it, right?

I believe I’ve had TN since my mid twenties but it wasn’t diagnosed until 2004 when I was nearly 50. Until then, I thought I had a lot of sinus infections on one side of my face. I don’t have electrical shock pain as is often described in material on TN. My pain is more like pounding, aching, radiating pressure, sometimes with heat. The worst attacks have felt like someone was twisting a hot poker into the side of my face. I have no physical signs when I have an attack; no redness or swelling like some do.

For years I’d have an attack (again, what I thought was a sinus infection) that would last, like clockwork, for ten days. I’d get antibiotics for the “infection,” take ibuprofen for the pain and after ten days I’d feel better. Then, a year ago, I had some invasive dental work over a few weeks’ time that triggered another attack after no attacks for nearly 5 years. It lasted ten days again. Then another attack in January sent me to my doctor because it was more intense. I was prescribed neurontin, 600 mgs. twice a day. I was also prescribed a muscle relaxant called Tizandadine. Well, the neurontin made me feel woozy and drugged and had me walking around like a drunk. The first time I took it, I went to bed and when I woke up a few hours later to use the bathroom, I literally reeled my way head first into the bathroom door jam. OUCH! I was/am unable to take the neurontin until after work (I work 4 am til noon as a radio host and news anchor) but I still managed to get in the two doses. That episode lasted ten days too.

Earlier this summer, I started to get more frequent attacks of pain that would last for a few days, then go away for a few days. This proved harder to treat so I mainly just took Aleve or Advil. Then about a month or so ago, the attacks came more often and I had a couple of real doozys. I would characterize the pain the same way but the intensity was unbearable and usually came just as I lay down to sleep. That’s when I joined this forum. The pain was so awful two times that all I could do was cry and the days following those two attacks were a waste because I could barely function. I was absolutely wiped out and it was all I could do just to get out of bed. Plus, I was afraid to go to bed at night for fear I would have an attack. Not a good thing when one has to get up at 3 AM for work.

Following the worst episode I had four days of itching and feathery spider web sensations on the right side of my face. Then the pain returned for three days. That takes us to today when I’ve had very little pain (knock on wood). I’m seeing a neurologist on Monday to discuss treatment options.

I wrote this much to show you that what I’ve learned here is that many of us don’t share the same symptoms or triggers. In fact, I have no idea what triggers my attacks. They just seem out-of-the-blue to me. But I hope you learn from what others write. I’ve already learned a great deal and thank everyone here for sharing their experiences and expertise.

Jon, here’s wishing you a pain-free day.

Best,
Karen Brown

3

Hi Jon, it sounds like you have TN to me…I was diagnosed 4 years ago…I have had gamma knife surgery, did not work…and 4 balloon/glycerol procedures all in the last 4 years…right now I am on tegretol to keep the pain under control. I am very close to having micro vascular decompression surgery or MVD but I am giving acupuncture a hearty run first…TN is a tough road but this website will make your voyage easier, there are a lot of good people here that can help you understand your illness…vicodin , methadone etc will not help…narcotics do nothing for most TN sufferers…Good Luck Vic in San Diego

4

Hi Jon,
I’m sorry you are having such terrible pain. I didn’t have pain in my teeth but I had shocking, electrical, lightning quick pain. Luckily I didn’t go through unnecessary tooth pain. And although at the time of diagnosis I thought my pain was bad little did I know how bad it could get. The pain moved closer to my upper lip and my nose and continued to increase. That is also when I couldn’t eat, drink or talk without severe pain. When my pain moved and suddenly got worse, the episode lasted for 6 mths until I had MVD surgery. I am doing a lot better since surgery about 15 mths ago but it is getting worse again. I take 3600 mg of neurontin, 450 mg of trileptal and tylenol 3. What anti-seizure drugs do you take in addition to pain killers?
Liz

5

Karen Brown said:

Jon, here’s wishing you a pain-free day.



Best,

Karen Brown

Thanks. :slight_smile: I truly am beginning to wonder if diet plays more of a role than I thought. I’ve read quite a bit that differs with my logic, but there still isn’t much 100% solid info out there for us. I get more useful information from ‘regular’ people that are truly suffering.

Today has been better. Started off tough, but as the minutes clicked off, the pain slowly backed off. …and my head slowly found a pillow. I had been up for over 100 hours when I wrote the first post… happy to say I’ve gotten a little sleep. It was like a little ride to heaven.

6

Vic Maidhof said:

Hi Jon, it sounds like you have TN to me…I was diagnosed 4 years ago…I have had gamma knife surgery, did not work…and 4 balloon/glycerol procedures all in the last 4 years…right now I am on tegretol to keep the pain under control. I am very close to having micro vascular decompression surgery or MVD but I am giving acupuncture a hearty run first…TN is a tough road but this website will make your voyage easier, there are a lot of good people here that can help you understand your illness…vicodin , methadone etc will not help…narcotics do nothing for most TN sufferers…Good Luck Vic in San Diego

Wow. You’ve truly been through the wringer, my friend. I’ve been told to get all of those procedures by several people. I’ve read both sides, and truly not sure what my next step is. I’m 36 and really want to enjoy my life. Not go from prep room to prep room. I realize ‘they’ are getting better with nerve disorders everyday, so maybe I’ll luck out in my lifetime. hehe.

Thank you for sharing your story.

7

Sabrina;

Now that is interesting. Back to the diet thing. I thought about changing my whole diet, totally. …but it really is tough to ignore those great deals from Dominoes, and they bring it right to your house!! hehe.

The dentist that dx’d me with TN gave me some flexeril, and it certainly did help. I did feel a bit like Dovovan on them though (the reason for 'Mellow Yellow was flexeril, I guess) so I may ask for more ‘Mellow’.

Of course, my depakote makes me want carbs like nothing else. An hour after taking them, I could clean out the local McDonalds pretty easy.

I HAVE heard that the dreaded ‘Oxy’s’ will take away our pain. Since I work from home, I wouldn’t have to worry about driving, so an Oxy to rid this stinkin pain would be ok to me!!

I have read both ‘Striking Back’ books and it was like a review session. …but thanks. I did learn some from them as well. I’m going to look into neurontin. I wonder how much I’ll get charged for it… hehe.

Thanks for the reply!

Sabrina Ellis said:

Hi Jon, I am on neurontin 800mg in the am and 1600mg at bedtime.I have found that not eating during the day helps me the most.I eat after I have taken my bedtime medications and it does not cause such severe pain then.I am also on flexeril 10mg 2 times a day.\Neurontin makes me drowsy and effects my memory so that is why I take the largest dose at bedtime.I can’t drive if I take the 800mg of neurontin in the afternoon,as my neurologist ordered it.I didn’t want to hear I had tn either and had 3 teeth pulled over a period of time.I truly believed before each tooth was pulled,I would be pain free afterwards.I wanted to get more teeth pulled but one of my doctors told me not too,and referred me to a neurologist where I was diagnosed with Atypical Trigeminal Neuralgia.I never thought I wanted to be toothless at 45 but believed if it would help the pain it would be worth it.There are many medications to try for tn and no one ever knows if it will help them until they try it.I hope you are able to find a good neurologist to treat you because you are in such severe pain.There is a book you may want to get for you and your wife to read called “Striking Back” which explains tn symptoms,treatment,and medication etc.

8

Liz;

I’m taking no pain killers, which is one reason for posting. I’d like to know what works. Opiates don’t seem to touch this pain. In fact, I could have sworn I heard the pain actually laughing at the opiate. :slight_smile:

I’m currently on Depakote. 1000mg’s, twice. At first, it took the pain away and I was 16 again. However, I gained a lot of weight from it, and it made me retain a LOT of water… more water than I thought I could hold.

This last episode opened my eyes. My legs had been puffed up with water, but when I couldn’t drink anything at all, they sure shrank! hehe. I can also now easily take off my wedding band. It must be something to do with how my meds deal with sodium. I’m not smart enough to know this stuff…yet.

Your episode makes mine look like small potatoes. 6 months! Wow… however, when one begins to add up all the time they sit and wait for the pain to go away, I’m sure we’re all up there somewhere.

Thank you dearly for sharing.

Liz K. said:

Hi Jon,
I’m sorry you are having such terrible pain. I didn’t have pain in my teeth but I had shocking, electrical, lightning quick pain. Luckily I didn’t go through unnecessary tooth pain. And although at the time of diagnosis I thought my pain was bad little did I know how bad it could get. The pain moved closer to my upper lip and my nose and continued to increase. That is also when I couldn’t eat, drink or talk without severe pain. When my pain moved and suddenly got worse, the episode lasted for 6 mths until I had MVD surgery. I am doing a lot better since surgery about 15 mths ago but it is getting worse again. I take 3600 mg of neurontin, 450 mg of trileptal and tylenol 3. What anti-seizure drugs do you take in addition to pain killers?

Liz

9

Thanks to all that have replied thus far. Hopefully this thread can help others as well.

It’s that little tid-bit of info that usually helps us on the right track.

If it were up to me, anyone clicking into this thread in pain, would leave with no pain at all.

Good luck to us all…

10

Well, my episode seems to be slowly passing. I can eat a bit more now, which is nice. It’s still painful, but I can get food and drink down. I can talk a little better as well.

Hopefully, I’ll be able to get in to the doctor soon and get on a new med. Slow goes it…

Thanks to all that have replied here thus far…

11

Hi Jon,

So sorry you are dealing with this nasty illness. Mine started Jan. 2010 with an ear infection and sinus infection… so they thought. Then pain continued month after month increasing all the time until finally a ER Dr. told me he thought I had TN. Mentioned it to my dr. and she said it made sense. Started me on Gabapentin which I had nasty side effects from. I now take 800 mg of Tegretol in the morning and 800mg at night. A month ago my MRI showed a tumor growing either on the base of brain stem pressing on my trigeminal nerve or actually growing on the nerve. Waiting on the neurosurgeon now to decide what is the best option from here. Radiation, Chemo, or brain surgery to remove it. Have recently started also taking Morphine because the pain has gotten so bad it never stops or lets up. This is a wonderful site where you can get support and lots of useful information. We are all here for you… Best of luck
Shelley

12

Oh my lord. My thoughts go out to you… your problems make mine seem like a walk in a park at the beginning of Spring. I truly feel for you and hope that there is something in your future that will give you relief!!

I don’t know what else to say except …wow! May luck be by your side.

Jon

Shelley Jay said:

Hi Jon,


So sorry you are dealing with this nasty illness. Mine started Jan. 2010 with an ear infection and sinus infection… so they thought. Then pain continued month after month increasing all the time until finally a ER Dr. told me he thought I had TN. Mentioned it to my dr. and she said it made sense. Started me on Gabapentin which I had nasty side effects from. I now take 800 mg of Tegretol in the morning and 800mg at night. A month ago my MRI showed a tumor growing either on the base of brain stem pressing on my trigeminal nerve or actually growing on the nerve. Waiting on the neurosurgeon now to decide what is the best option from here. Radiation, Chemo, or brain surgery to remove it. Have recently started also taking Morphine because the pain has gotten so bad it never stops or lets up. This is a wonderful site where you can get support and lots of useful information. We are all here for you… Best of luck

Shelley

13

Well thanks Jon, Nothing about this illness is ever a walk in the park. As time goes on it seems like you start to learn to deal with everything and try and make it work. There is never anything good with TN but we learn to cope and have wonderful support hear. Sometimes just venting here when we are having bad days is a great thing instead of taking it out on our loved ones. I am always here if you need to talk.

Hugs
Shelley

Jon Moore said:

Oh my lord. My thoughts go out to you… your problems make mine seem like a walk in a park at the beginning of Spring. I truly feel for you and hope that there is something in your future that will give you relief!!

I don’t know what else to say except …wow! May luck be by your side.

Jon

Shelley Jay said:
Hi Jon,

So sorry you are dealing with this nasty illness. Mine started Jan. 2010 with an ear infection and sinus infection… so they thought. Then pain continued month after month increasing all the time until finally a ER Dr. told me he thought I had TN. Mentioned it to my dr. and she said it made sense. Started me on Gabapentin which I had nasty side effects from. I now take 800 mg of Tegretol in the morning and 800mg at night. A month ago my MRI showed a tumor growing either on the base of brain stem pressing on my trigeminal nerve or actually growing on the nerve. Waiting on the neurosurgeon now to decide what is the best option from here. Radiation, Chemo, or brain surgery to remove it. Have recently started also taking Morphine because the pain has gotten so bad it never stops or lets up. This is a wonderful site where you can get support and lots of useful information. We are all here for you… Best of luck
Shelley

14

I think that I’m also lucky that my dentist resisted extractions and root canal fillings. He did grind down some teeth to reduce the pressure and warned me that I was grinding/clenching my teeth at night. I’ve now stopped sleeping on my face and I find that this has helped. I’ve had a few pain-free days until I bit on a hard cracker last night & went through the roof, then had a bad night.

What I’ve learned from the short time I’ve been in this group is that TN is probably something I have to live with long-term & that there will be good and bad days. I have to accept it get on with life, there are many people worse off than me. I’m trying to pay more attention to my body, trying to relax tense shoulder muscles and gently stroke my clenched cheek muscles & avoid my triggers. It helps to have somewhere where everyone understands TN.

15

Shelley,
Let us know what the surgeon decides. I know you must be very anxious knowing you have a tumor. I have you in my prayers.
Liz

Shelley Jay said:

Hi Jon,


So sorry you are dealing with this nasty illness. Mine started Jan. 2010 with an ear infection and sinus infection… so they thought. Then pain continued month after month increasing all the time until finally a ER Dr. told me he thought I had TN. Mentioned it to my dr. and she said it made sense. Started me on Gabapentin which I had nasty side effects from. I now take 800 mg of Tegretol in the morning and 800mg at night. A month ago my MRI showed a tumor growing either on the base of brain stem pressing on my trigeminal nerve or actually growing on the nerve. Waiting on the neurosurgeon now to decide what is the best option from here. Radiation, Chemo, or brain surgery to remove it. Have recently started also taking Morphine because the pain has gotten so bad it never stops or lets up. This is a wonderful site where you can get support and lots of useful information. We are all here for you… Best of luck

Shelley

16

Pat ,
Maybe not. There are probably a lot of people who have done well with their TN and are not on this site. That was me for 3 l/2 yrs. Have you had a MRI or surgery? But it is wonderful that we have the support we do for those of us who have not been as fortunate with our TN.
Liz

Pat Gascoigne said:

I think that I’m also lucky that my dentist resisted extractions and root canal fillings. He did grind down some teeth to reduce the pressure and warned me that I was grinding/clenching my teeth at night. I’ve now stopped sleeping on my face and I find that this has helped. I’ve had a few pain-free days until I bit on a hard cracker last night & went through the roof, then had a bad night.


What I’ve learned from the short time I’ve been in this group is that TN is probably something I have to live with long-term & that there will be good and bad days. I have to accept it get on with life, there are many people worse off than me. I’m trying to pay more attention to my body, trying to relax tense shoulder muscles and gently stroke my clenched cheek muscles & avoid my triggers. It helps to have somewhere where everyone understands TN.

17

Thank you Liz… I am anxious but at the same time at least I have answers as to what is causing my TN. Lots of mixed emotions at this point. I will keep everyone updated. Fingers crossed for pain free days for everyone.

Liz K. said:

Shelley,
Let us know what the surgeon decides. I know you must be very anxious knowing you have a tumor. I have you in my prayers.
Liz

Shelley Jay said:
Hi Jon,

So sorry you are dealing with this nasty illness. Mine started Jan. 2010 with an ear infection and sinus infection… so they thought. Then pain continued month after month increasing all the time until finally a ER Dr. told me he thought I had TN. Mentioned it to my dr. and she said it made sense. Started me on Gabapentin which I had nasty side effects from. I now take 800 mg of Tegretol in the morning and 800mg at night. A month ago my MRI showed a tumor growing either on the base of brain stem pressing on my trigeminal nerve or actually growing on the nerve. Waiting on the neurosurgeon now to decide what is the best option from here. Radiation, Chemo, or brain surgery to remove it. Have recently started also taking Morphine because the pain has gotten so bad it never stops or lets up. This is a wonderful site where you can get support and lots of useful information. We are all here for you… Best of luck
Shelley