6 Months pain free and now ... it's BAAAACK

Six months ago my neurologist put me on Lamotrigine since Neurontin was making me too tired and spacy to function. Miracle of Miracles, it worked! It has kept the pain at bay all these months for which I've been very thankful. I realize that everyone has their own individual experience with various drugs and that no one will have the same result as the next person.

Yesterday, the pain returned; About a 5 on a scale of 1 -10. I'm not sure what triggered this attack which continues today. I'm pretty sure I was clenching my teeth the night before as I slept because I woke a couple of times with a sore upper tooth. Or it could have something to do with a big swing in our weather. From a warm day of 85 to a drop into the low 50s and rain. Weather has seemed to affect my TN in the past. Maybe it has to do with the barometric pressure?

My doctor had told me I could take an extra Lamotrigine pill with each dose should I have break-through pain. That extra pill that I've taken 4 times now hasn't done anything but my fear now is that I have to chase the pain rather than prevent the pain. I haven't been on this site for some months, except to read and catch-up with some of you. But I haven't posted because I thought it might sound insensitive to say, "Hey, guess what, I don't hurt and haven't hurt for 6 months!"

Now, I'm seeking info that might help me tackle this new attack. I see that surgeries often alleviate pain for long periods of time but has anyone found long-term relief from medication only to have a flare-up months later? If so, did the pain resolve itself or did you have to go to another remedy altogether?

Thanks for any replies.

1 yr pain free now is back!!! 7 months the first month it it was sooo painful,now i just get

pain off and on i had this attack theres nothing anyone can do i had it for 6 yrs now to late to get surgery

i just have to take pills all my life!! thats what he said the doctor!! i hope you get pain free god bless!!

Hi Karen,

It sounds like you have Type II Atypical TN. The most recent research shows that the surgeries are not effective on Atypical. The procedures can do nothing, work for a while and the pain is back or make the pain worse. Then take into consideration recuperation time, possible complications like cerebral spinal fluid (CFS) leak and having to go through all that for no relief.

I'm Atypical and have two surgical evaluations. Both times the neurosurgeon would not do the surgery because I'm Atypical and it wouldn't work or help. I'm maintining on Neurontin/Gabapentin and Vicodin. I still have flare ups that send me to the emergency room...but I'm glad I didn't get a neurosurgeon who was more concerned with getting surgical experience than the best interest of the patient.

Wishing you all the best.


Sally, I am sure you are just as frustrated. I hope you get pain free as well. .So many people here who have had the surgeries say that it was not a cure, that TN might be a condition that has to be handled/controlled just like diabetes. I'll take meds all my life rather than have the pain for sure. I won't have the sugery if I will have TN pain AND surgery pain and whatever side affects happen after surgery... but that's an individual decision for each person. I wish you both the best.

Blessings, Sheila

sally choate said:

1 yr pain free now is back!!! 7 months the first month it it was sooo painful,now i just get

pain off and on i had this attack theres nothing anyone can do i had it for 6 yrs now to late to get surgery

i just have to take pills all my life!! thats what he said the doctor!! i hope you get pain free god bless!!

Hi Karen;

I'm so sorry. I'm sure you are almost in a panic, wondering if your pain will get worse or stay worse, or if you will be in terrible pain again. I'm sure you are mourning the days that were pain free. That's where I am right now. My TN was pretty much contained with my meds except for occasional breakthrough pain, has been for 14 years, but about twice a year it breaks through badly enough to go to the E.R. Now I have been in constant level 7 to 10 pain for 29 days, so I can see it's time to find a new combination of meds and alternative treatments to get control of it again. You might want to join the Opiate Therapy group. There are charts there about various medicines and their level of pain control, and we've also started a discussion about anti-inflammatories and alternative treatments other than pharmaceuticals. (That one is in the Atypical TN group). You don't have to actually join to be able to read the info in those groups, only join if you want to comment. The groups are under the word "more" at the top menu, where you see the line of words that says "main, my page, discussions," etc.

I think that at some time, everyone might have to change med combination and treatment combinations as their body changes.

Surgery is not the magic wand either. I have only met 3 people here that had the surgery without complications and where it stopped the pain. There are many here who have had the surgery up to 4 times and still it didn't work. No one tells you about the issues that come after surgery, except the people in this group who have been through it. I hope you find your solution soon.

Blessings, Sheila

In the past (for years), before I'd even gotten a diagnosis and when I thought I was having sinus infections, my episodes of pain would always last ten days. That was another reason why I thought it was a sinus infection. I would wait a few days before going to the doctor, get antibiotics, take them and I'd feel fine in a week so I naturally thought the antibiotics were working.

I don't know why my episodes were always ten days but that changed when the pain re-emerged following dental work 19 months ago. Then the pain came and went and then came and stayed until I started on the Lamotrigine (Lamictal). I'm hoping this round of pain lasts for ten days as well and then goes into hibernation. What's different this time, for me anyway, is that I have times during the day when the pain goes away or gets worse all of a sudden. Yesterday, a couple of times, I'd get a burst of pressure, throbbing and stabbing pain that would last for about ten minutes, then it would go back to the level it was at before (from a 5 to an 8 and back to a 5 or 6 on the 1-10 scale). Today, I awoke pain free. (It was wonderful!). Pain started seeping in about an hour later and now it's there as a constant but mostly bearable while I'm at work.

I'm finding that there are no absolutes with this condition and that even when I feel great, there's always this underlying fear that it will/can return at any time. I think only folks here on this site can understand the weight of that fear and how it plays a part in one's outlook.

Thanks for all the replies. They're very helpful.

I have Type 1. I had Gamma Knife last year. It took out 85% of the pain. Recently the pain came back. (It sucks when you are mostly pain free then get hit with it full force) I can understand how you feel. I take Cabitrol and have upped my dose. I see a neurosurgeon on the 13th. I am all for the next surgery. I was told the Gamma was effective 80% of the time. I have also been told the second surgery almost always has great results. I am willing to risk it. I don't know what your insurance situation is but if you can, look into it.

I feel your pain. I hope you find some relief soon.

It is comforting to read all of your input. It never fails that someone reads my mind and provides helpful solutions or suggestions that always seem to be just what is needed to calm me and encourage me to keep taking deep breaths.

We are not alone and this site provides me with so much more than I will ever be able to contribute.

I love the positive energy from your comments.

dear karen, same thing is happened to me… i was taken carbamazepine. i had little pain about 4 months…since yesterday i am in pain and very hungry. let god help us. i wish you good luck…

Dear Karen,

The body develop resistance to certain medications after a while.

My story is about the same.

First tegretol 200 mgs was all I needed. But after 6 months the pain came back. Then, the Dr added Neurontin 200 mgs. I was good for another 6 to 8 months. Then he increease d Neurontin and added topamax. etc etc.

I have been pain free for up to 9 months, but it always comes back and the medication needs to be changed or increased.... Oh! I long for the days when tegretol was my only medication.

Now, I spend over $240 a month in 5 different medications. I wish I could be back on Tegretol, the most effective medicine for me so far, but now it doesn't do anything for me.

Wishing for a natural remission. Praying for pain and medicine free days, hope some day I will achieve it. Iknow it can happen.

Keep positive, the arsenal of medicines is very broad and effective.


Update ... my recent episode that I wrote about in this thread ended after three weeks. I don't know why just like I don't know why it started. Thank goodness too because a week after it ended I developed a really bad cold that turned into a respiratory infection, possibly pneumonia. My head was horribly congested for ten days and I was so afraid the TN pain would flare up with it. It didn't and I was sooooo thankful.

Now, a week past reovery from that, my TN pain has returned but has taken a different form. The pain runs from the very top of the right side of my head, down the right side of my face and down the entire length of the right side of my throat. This is a very achy pressure-like pain that was intense last night, much less and bearable this morning. I've never had pain in my head and throat before. Does anyone else have pain that morphs from place to place and vary in the type of pain it is (sharp stabbing versus dull throbbing)?

My pain has come and gone a few times as well as shifting from upper to low jaw and so forth. I think for lots of folks that’s just the way it is. I heard once that it can possibly be due to the nerve having the sheath heal a bit and grow back then get compressed and worn off again.

I take the periods of remission as a blessing in between the periods of total suckage. I manage to be able to maintain optimism that another period of remission is always around the corner. It may take months but I confident it’ll happen again.

y disorder is ATN. I take Gabapentin 600 mg 3x a day and Lamotrigine (Lamectil) 100mg 2x a day. Pain s minimized but ATN climbs over the fence occasionally and I have bad episodes. If I talk too much my jaw feels like a rusty hinge that needs oil And .Oxycodone is the "brake glass when necessary’ fire extinguisher. 'though i’m beginning to take one after work and some on the weekend. It takes the edge off (but not always).

Sometimes I have pain in just one nerve. I can slightly touch it on the front of my head and it sends a zap all the way to the jaw/gum area. I try to sleep at night with the happy side of my face on the pillow. I've been waking up lately with a low level throb in my cheek. The other day, I got up way too fast and it set off that electrical switch that stopped me in my tracks. I do have different areas of pain morph as you mentioned. But I have an almost constant low level throb in the middle of my cheek that gets very irritable when I talk or eat too much. When I take Oxycodone there is no pain , but when it wears off that cheek throb is elevated i'm sure that due to work it performed while I was drugged up.

I'm think that my friend, ATN is wearing down my med prevention and I spoke to my Doctor about it the other day. I'm going to try an additional hit of Gabapentin each day.

I meditate on the lower levels of pain. I try to think of it as a massage. Sometimes it works on the physical plane but it always helps on the inner plane.

I can't help you with the medication question, but I wanted to share that my ATN flares up badly with barometric changes. I hope you are feeling better. I also notice myself clenching my teeth and having flare ups the next day.