Best practice with infrequent attacks?

General General TN & GPN (Old Site)
1

I'm a lurker here because my TN is thankfully managed effectively with 600mg (split dose) carabamazepine a day. I'm having pain now, for the first time in a year, and have been taking tramadol for almost three days. I am terrified of this developing into a full blown attack, but should I try to get through it without the tramadol? I can't remember how long my neuro said I should take tramadol for. He also said to check in only if I had more than two attacks a month, so I haven't reached that point.

I'm alternating with paracetemol as I was told this makes the tramadol more effective. Just wondering what collective wisdom might be on managing an attack after a long remission. In a way, the memory of past attacks is worse than the pain I currently have, if that makes sense? I'm also wondering what I might expect from an attack after a year without pain - in the past they lasted 3-4 days, I think, but my carabamazipine dose was often increased as a result.

2

If your medicine is not holding down the pain I would call the neuro and see if you should increase the meds Go and see him if you are in to much pain Tn is so unpredictable I would call or go in to the doc. good luck I recently went off my meds to see if the TN would come back it did with a vengence I ended up going on a stronger dose of Gabapentin I am getting break through pain if it is not to bad it is nice to be able to tell that I am still getting attacks I was diagnosed in Jan 2012 I keep hoping it will just magically go away LOL the break through pain has been getting worse and if it gets any worse I will be calling the doctor to increase meds. good luck

3

Mine are infrequent and I also take 600mg of Tegretol. I do go on and off of it when I feel an attack. If I try to go it cold turkey with out meds, it is so much worse. I would say take the meds. I can also say that my pain attacks started coming on 4 yrs ago and this year is the worst. They used to last 3-5 days once a year, then went to 2x a year, and now I've had 7 this year. So from my experience, they will come more often. I too remember the 1st ones alot worse then the pain I get. I think it is cause when we first experience that pain it gets burned in our minds how awful it is and any after that we kinda know what to expect. Now some days the pain does come on brutally. I hope this was a lil helpful.

4

Nobody can predict how bad or when their attacks will be.

BUT - in the interim - you can ask for Topical lidocaine patches or cream Rx to calm the nerves instead of

or along with the Tramadol.

5

My First Tn episode happened in Dec 2011 it lasted about about a month or more and went from frequent shocks a day to a few shocks a day ocne I got dianosed and put on gabapentin it got better but since I have had several episodes lating just few days some longer because I had not had an episode in a month my Neuro wanted to take me off the meds to see if I was in remission I kind of wanted to see what would happen also but with in less than 2 weeks it was back with a vengence that was in the middle of August and has not stoped It gott a little better on the meds when they started to take effect but it is getting worse It has been about A month now I wonder when this episode will end.

6

I'm new to all of this.

What seems to be the best medications to use reduce the TN shocking sensations?


Whenever I chew, I get these horrible electrical shocking sensations on the right side of my face.

7

Hi KC I wanted to know how the Topical Lidocaine works most of my pain is in my gum line and teeth V2 branch with an ocasional flare up in the forehead V1 Branch My eye get watery and feel like it squinting and forehead feels like it is cramping up.
I use oragel it helps for a little while enough to give me about half hour break
Kc Dancer Kc said:

Nobody can predict how bad or when their attacks will be.

BUT - in the interim - you can ask for Topical lidocaine patches or cream Rx to calm the nerves instead of

or along with the Tramadol.

8

I would go to my doc now and explain that you feel a flare up coming and you want to be prepared before it happens, before it gets out of control and you can't drive to the doc or pharmacist. The fear of being unarmed against an impending pain attack can cause you even more pain and stress/anxiety. Tell the doc that you want to ward off a situation becoming an emergency. They might want to give you a small count of pain med, but you have to have something to avoid having to go into the ER. Nobody can track down their doc in the middle of the night or on a weekend, least I can't. It's asking for an insurance against an unbearable amount of pain that is impossible to gauge the timing of, so ask now before you're in the middle of it and helpless.

9

Tramadol is NOT a narcotic so I would keep taking that, it's not addictive. I have been on the max dose for tramadol for 2 years and never had a problem except it sometimes keeps me up at night. I'm with Colleen. It's a lot cheaper to go into the doc office or just email or call to get an increase in meds than ti the ER. Also I am also on Lidocaine gel and it helps for the breakthrough pain. My neuro told me that it's better to get the in front of the pain before it gets so bad. Although vicodin or percocet may not work as well, if the doc suggest them, I would go with that as well. It's a lot cheaper than the gel and may work for breakthrough pain. Keep on top of the pain because it's so much easier to keep it from getting bad than to get a full blown attack to lessen.

10

I also take tegretol for TN1 but was told that tegretol actually reduces the effect of tramadol and shouldnt take it together.I found when i have a bad attack no pain relief works at all.I took oxycodene,panadol nurofen with codeine and had no effect at all.Apparently thats how they can tell it is nerve pain when nerve drugs work and painkillers don't.

i am taking 250mg tegretol at the moment.I had been trying to reduce but when i get lower than 200mg i get pain with in a day or two.

11

Lidocaine cream/patches work topically on the nerves by putting them ON the face/cheek/temple

- for gums and INSIDE the mouth/ear/ - there iis a lidocaine mouthwash and a lidocane nose spray -

I think outside the face - it was just a miracle for me - it doesn't numb me - but it settles the nerves magically! It is The BEST quick fix that is an Rx that I found on a really old posting here. Ask your doctor - it can be called in without an office visit

The patch can be worn up to 12 hours - and I'm sure the others can be used as often as you need - its related to novacaine



KATTHOMPSON4 said:

Hi KC I wanted to know how the Topical Lidocaine works most of my pain is in my gum line and teeth V2 branch with an ocasional flare up in the forehead V1 Branch My eye get watery and feel like it squinting and forehead feels like it is cramping up.
I use oragel it helps for a little while enough to give me about half hour break
Kc Dancer Kc said:

Nobody can predict how bad or when their attacks will be.

BUT - in the interim - you can ask for Topical lidocaine patches or cream Rx to calm the nerves instead of

or along with the Tramadol.

12

I need to update. You can develop a dependecy on it and must be slowly tapered down. Tegretol can reduce it's effects.

tkal said:

Tramadol is NOT a narcotic so I would keep taking that, it's not addictive. I have been on the max dose for tramadol for 2 years and never had a problem except it sometimes keeps me up at night. I'm with Colleen. It's a lot cheaper to go into the doc office or just email or call to get an increase in meds than ti the ER. Also I am also on Lidocaine gel and it helps for the breakthrough pain. My neuro told me that it's better to get the in front of the pain before it gets so bad. Although vicodin or percocet may not work as well, if the doc suggest them, I would go with that as well. It's a lot cheaper than the gel and may work for breakthrough pain. Keep on top of the pain because it's so much easier to keep it from getting bad than to get a full blown attack to lessen.

13

I like the gel as well but it's expensive if you don't have insuranse.

Kc Dancer Kc said:

Lidocaine cream/patches work topically on the nerves by putting them ON the face/cheek/temple

- for gums and INSIDE the mouth/ear/ - there iis a lidocaine mouthwash and a lidocane nose spray -

I think outside the face - it was just a miracle for me - it doesn't numb me - but it settles the nerves magically! It is The BEST quick fix that is an Rx that I found on a really old posting here. Ask your doctor - it can be called in without an office visit

The patch can be worn up to 12 hours - and I'm sure the others can be used as often as you need - its related to novacaine



KATTHOMPSON4 said:

Hi KC I wanted to know how the Topical Lidocaine works most of my pain is in my gum line and teeth V2 branch with an ocasional flare up in the forehead V1 Branch My eye get watery and feel like it squinting and forehead feels like it is cramping up.
I use oragel it helps for a little while enough to give me about half hour break
Kc Dancer Kc said:

Nobody can predict how bad or when their attacks will be.

BUT - in the interim - you can ask for Topical lidocaine patches or cream Rx to calm the nerves instead of

or along with the Tramadol.

14

I was just diagnosed last month after going through 4 dentist visits thinking it was dental related. I FINALLY realized that the pain felt more like electric shock. Doc diagnosed me immediately and currently I am on 400 mg Tegretol (split dose) daily. It keeps the shocks under control for the most part. I still feel a little tingly/burny sensation sometimes, but not pain. I DID have some milder pains for a few days after riding on a 4-wheeled work cart. I agree, the milder pains make you suck your breath in and brace for the bad ones. I think the 1st pains all of us had damaged us mentally. If you are having pain, I would definitely go back to the doc though. Good luck to you! Oh, I almost forgot, my doc wants me to stay on the meds for about 3 more months and wean myself off just to see if it comes back. I am so freakin' nervous that those horrible shocks will come back! I will make sure I still have some of my meds in case the pains DO come back. Then I can start right back on them!

15

Thanks, all, for the helpful comments. I e-mailed my neuro who advised temporarily increasing the Carbamazepine, and using the Tramadol only for acute pain. The pain ended after five days and (thankfully) never got beyond numbness and a vice-like grip on my jaw. Hoping to once again get through a year pain-free. I do have a good stock of Tramadol though, just in case.

16

Jess, your journal entry was like 'reading my own words'. I officially was diagnosed with TN by my PCP in early August after the brutal initial first attack in June. I've never experienced such pain in my entire life. I didn't know that this type of searing, burning, electrical jolt type of pain existed until it happened to me. He prescribed 2 meds. Tegretol and Tramadol, which I had filled, but decided not to start since it seemed like the pain episodes were coming on less frequently and were less severe until today.

Bamm! You ARE correct - that I also wonder if these episodes are as painful as the first ones, but we DO know what to expect and aren't caught so off guard. I am going to reconsider starting the medication as I'm fearful that the attacks will be more frequent and just as severe as the ones in the past. Is that what you suggest? My doctor, whom I saw this past Wednesday told me to use my best judgement as far as the meds go and he left a standing order for an emergency injecftion of Tramadol should the jolts start and not stop. He said that with TN, that is always a possibility. Yikes.

I trust you will have a good stretch of less pain. Check back with me and let me know how you are doing.

Blessings,

Nannie

Jess said:

Mine are infrequent and I also take 600mg of Tegretol. I do go on and off of it when I feel an attack. If I try to go it cold turkey with out meds, it is so much worse. I would say take the meds. I can also say that my pain attacks started coming on 4 yrs ago and this year is the worst. They used to last 3-5 days once a year, then went to 2x a year, and now I've had 7 this year. So from my experience, they will come more often. I too remember the 1st ones alot worse then the pain I get. I think it is cause when we first experience that pain it gets burned in our minds how awful it is and any after that we kinda know what to expect. Now some days the pain does come on brutally. I hope this was a lil helpful.

17

My doctor has me on 300 mg of gabapentin, twice daily. It has significantly reduced the shocking sensations in both frequency, duration, and in severity.

I used to get at least 6 episodes per day, and they would be extreme for the first 2 minutes and then quickly trail off, but had some residual shocks at the corner of my mouth, in my eye socket, and in my ear for about an hour or two.

Now, there are days when there are no episodes at all. Today I felt one at breakfast, but it was weak, and very short. I haven't had any others today, so far. And I went at least a week with no episodes before that one this morning. I was in a hurry and ate my meal too quickly.

That is the other technique I use:

Eat slowly, and try to not chew on that side. Eat soft food, when possible. Eat cool or cold food when possible. And eating something bland or at least a food that you don't find exciting seems to help. The more liquidy the food is, the better. The less chewing, the better.

Well, that seems to work for me, anyways, at least at this point in my disease. T.N. just started for me in September 2012, so I am only at the beginning of this disease's progression.

I'm going to try to stay in front of it as much as possible.

But a side effect of my method is that I am starting to lose weight because I am not eating as much since I have become a bit afraid to eat and set it off, and that could eventually become a problem for me.

18

i just canceled an appointment with my neurologist last week because i have a new patient appointment with a neurologist @ mayo clinic later this month ... i canceled because i was afraid my insurance would not pay for seeing both doctors the same month ... my dilemma now is, the breakthrough pain i am experiencing ... i feel like i am going to get a lecture for not coming in last week ... oh well ... i can call in the morning and see if doc will call in the patch/cream that KC is talking about ... i called in and got the other meds without going in

19

Rebecca what meds are you on? How long have you had TN? How long ago did you have Gamma Knife?

20

i had the gamma knife on April 6, 2012 ... currently i am taking gabapentin 600 mgs, two tablets, four times a day ... i also take baclofen ... it has been working the past six months but now i am having breakthrough pain ... i have had TN since 2003