We are patients living with Trigeminal Neuralgia, here for your support.

New to TN. How do you do it?

Hello everyone. It is a true pleasure to meet you all. At this point I have been on the floor crying on and off for 12 hours now so please forgive any typing errors. There is an hour left before I can take my next pain medicine, the Dr has now given me vicodin and a referral to a neurologist. I will not get in to see him till sept 13th. Ironically that is my scheduled start date for my new job.
I started with pain from TN about 2 months ago. It was bad right from the start and very sudden. It got even worse as the days past. However, with relaxation, improving my diet, exercise, accupuncture, and the occasional tylenol it seemed to be improving over the last couple of weeks. Then last night I felt an attack coming on. I immediately took some tylenol. Did not even touch it. Within the next hour I could not walk and was a hysterical mess on the floor. In fact I am still in such pain I am holding my breath while I type this because I dont want to breathe.
Please share any tips you have on getting through days like this. Do they happen often? I was fine yesterday. It was such a sudden attack and I dont even know what set it off.

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Permalink Reply by Erin on August 31, 2010 at 3:05pm

RLee,

Oh my...i have been there...where you are...on the ground ...holding my breath...tears steaming down my face....kids watching in horror.

That was March 2010.

I am no expert that is for sure....everyone is different but I would go to a dr. any doctor asap and get Tegretol (Carbamazepine) if you are not taking it....it should help. I found that no pain killers worked...I was off the floor after 200 mg of Tegretol and breathing without fear 24 hours later...pain free in 2 days....it came back but not to that severity. Slowly increased Tegretol as pains returned. If you are taking Tegretol...you might need to increase.

I wish you luck!
Reaching out helps.
Erin

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Permalink Reply by Ally Castellano on August 31, 2010 at 3:09pm

I am so sorry you are having a bad day with pain. I know exactly the feeling...you don't want to breathe for that may hurt. This may not be practical, but can you just sleep for periods of time? I hate feeling the pain, sometimes it keeps me awake, but sometimes my body is so tired from my life I fall asleep. Is there someone who can sit with you? Did your dr have any other suggestions? Do you know what triggered it? This doesn't help me, but some try heat or ice? I do like calming oils though just for me to smell and try and make peace with your body.

I had a really tough day yesterday. I just wanted to cry all day. Idk what got me through. I try talking to the ones who love me and also try distracting myself, but when I feel like someone is murdering me, that is not possible. Do what you need to do to get you thorugh the day!

You are not alone.

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Permalink Reply by chalkdusty on August 31, 2010 at 5:37pm

Hello, RLee, I'm sorry that you are having a bad pain day. I'm new to this too, so I don't have much to offer in the way of advice. Taking a really warm shower seems to help me. Then I alternate warm compresses with ice packs. Most of my pain is in my upper teeth and is a constant. I have atypical facial pain.

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Permalink Reply by Linda Moore on August 31, 2010 at 7:01pm

I agree with what someone already said...Tegretol (Carbamazepine) is the starting drug. It took several days to build up in my system and those were two horrible days. Call the MD immediately and ask for the Rx. It should settle the pain down before you see the neurologist. I do not think that Vicodin works well on nerve pain. (Just my opinion by the way.) It has taken a while but I am finally feeling that I just might have my life back again! Good luck and let us hear from you...we care!

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Permalink Reply by Sara B on August 31, 2010 at 9:50pm

Hi, I was just diagnosed last month. My Neurologist put me on an anticonvulsant (Tegretol) which helped greatly, after about 3 weeks, and I took percocet for the pain until it kicked-in. I don't need much percocet now at all. Can you see your neurologist sooner?

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Permalink Reply by Debbie on August 31, 2010 at 10:53pm

I am so sorry you are suffering this way. When I was in this much pain, I went to the ER and they prescribed anticonvulsants which took the edge off. They can probably help you in some way so I'd give it a try. Don't suffer because you are waiting for an appointment if you don't have to. Good luck. I hope tomorrow is a better day.

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Permalink Reply by Kathy Porter on September 1, 2010 at 8:39am

Dear RLee,

I am so sorry for what you are going through. I know your pain. My experience with my Dr was that she recognized that I was suffering from TN but prescribed the wrong meds to treat it. I ended up going to the emergency room at my local hospital and it was there that a neurologist on call prescribed the correct meds, Tegretol and Neurontin, which are anti-seizure meds. It took a few days for them to kick in but it did the trick. I would say if you are in that much pain you should go to your ER. You shouldn't have to suffer like that till the 13th.

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Permalink Reply by RLee on September 1, 2010 at 8:18pm

I went to the ER yesterday because it got to be just to much. Three injections of pain medication barely made a dent. I have been referred to a new neurologist who can see me sooner, an ent, as well as a dental surgeon. It seems they are confused about why my pain last for such long periods of time. This will be the 3rd dental specialist I have been to. TN or not I would love a solid diagnosis. I have read a lot of stories of people going through years of misdiagnosis and my heart always goes out to them. Its a horrible feeling to know something is wrong but now how to treat it. At this point I am so heavily medicated I cant even play with my son or I get dizzy and fall down. Vicodin, ibuprophen, flexeril.

I wanted to thank everyone for the kind replies. Coming home to them was better than the chocolate cake I treated myself to on the way. :)

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Permalink Reply by Liz K. on September 1, 2010 at 8:20pm

Hi Rlee,
I've been there with the screaming in pain on the floor. There is no way to predict when the bad attacks will happen. I am glad you are seeing a neurologist. Ask your doctor to do something about seeing one earlier. My TN was what I thought was bad when it first started, but now I know it wasn't. And mine was easily controlled and controlled for about 3 l/2 years before I started having severe attacks like you describe. I wish you the best of luck and pray your pain will get better. And TN can stop suddenly just like it starts. But you are doing good to research it. I didn't do any research because mine was so easily controlled. And both my neuros told me that it would probably get worse. And each attack was worse and lasted longer, and the remission were shorter between attacks. I had an MVD after my prolonged attack of about 7 mths. Your TN sounds typical. Do you have the sharp, stabbing, electrical pain? I'm on chat now if you see this post.
Liz

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Permalink Reply by Liz K. on September 1, 2010 at 8:22pm

Rlee,
I read some of the posts and agree. I was initially prescribed tegretol and that worked. Are you on pain medicine only? It sounds as if your dr knows what you have so he may prescribe an anti-seizure drug. I take neurontin, trileptal and tylenol 3. I had to be taken off tegretol because of some blood issues.
Liz

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Permalink Reply by Pam B on September 1, 2010 at 9:52pm

I am so sorry you are in so much pain! I also have been there, on the floor screeming while my husband is slamming all the windows and doors in fear the neighbors will call the police thinking he is killing me or something becuase of my screams! You can't help but scream and cry and then the darn tears make the shocks happen even more! You just can't win, cuz you can't wipe the tears off because the touch of a tissue will make it feel like you have bare wires on your face! Like everyone has said, I will say too, get to ANY DR and ask DEMAND some kind of seizure med. JUST DO NOT LEAVE UNTIL THEY GIVE YOU SOMETHING! pain meds don't help, they only help me calm down enough emotionally to be able to handle the pain. It does NOTHING for the pain! Good luck and WELCOME and I am sorry we have to meet under these conditions ;-(

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Permalink Reply by Tonya L on September 2, 2010 at 1:38am

Hi. Welcome to the site. Depending on how long you've had TN, you can go into remission for days, weeks, months and even years. Mine came on sudden like yours. I was unaware that what I had been experiencing for years, since a brain surgery for tumors, was in fact TN, just a low "dose" of it and storms always seemed to make it worse. For me, I am on strong pain pills but prefer not to take them often due to their addictive nature. I am also on Tegretol, Neurontin and Klonapin. Tylenol is great but during the "bad ones", you're right, it won't touch it. Try a heating pad, hot towel, etc. Heat helps mine right away. Does not stop it completely but calms me and the pain somewhat. I have never taken vicodin so I don't know how that is for TN. I'm on Dilaudid 4mg. I started out with Hydrocodone 10mg then went to Dilaudid 2mg then 4mg. It actually helps mine but then again, I don't like taking it often. I stay woozy enough with all the others medications. What set it off? Honey, it could be something as simple as brushing your teeth, the a/c in your car, putting on your makeup and yes, eating. In my case, laughing or yawning even sets off attacks. I pray you feel better soon and by all means, do NOT be afraid to go to the ER!! Sometimes, that IS ALL that will work! Again, welcome and you are in my prayers!