Medication and Pain levels

[allih]

I'm fairly new to TN and am wondering about my medication and pain levels. I have bilateral type 2 TN with almost constant pain in the lower 2 branches of the nerve on both sides of my face. It flares with a burning pain off and on all the time.

My medication lessens the intensity to a tolerable level. It is still painful, extremely annoying and distracting. I take 1200-1800 mgs of Neurontin a day I'm worried about my meds because I also take Effexor and Topamax plus some others that I take as needed for other medical issues. I'm on so many drugs I wonder what I am doing to my body. But the pain is so distracting that its all I can think about at times. This is a higher dosage than what I took when I was taking this for migraines and pain management for a shoulder injury.

I'm used to being in pain from years of dealing with migraines but if I can at least block out this it would be one less thing I have to deal with. I want to talk to my neuro about increasing the Neurontin if it is worth doing it now. But if it is better to wait and increase the dosage when the breakthrough get worse then I will do that. So basically, I'm curious to know if your meds completely block the pain or does it just reduce it to a tolerable level? Can I have a life that doesn't include always dealing with pain?

Alli

[baywatcher]

alli, I think of the pain as a pretty steady little line just below the level of concern or interruption of activities. Then, along that line are spikes. These can be caused by being overtired, not eating properly, taking on too much, or maybe some environmental stressor like change in altitude or weather extremes. I try to keep the medication as low as possible, accepting some pain that is nagging perhaps but not acute. Then, of course, comes the spike and that's not enough meds to block it. So maybe a temporary increase is called for (as well as attending to the cause and getting life back to a normal position). I do like to drop the meds back to the lower level asap because I anticipate being on the drugs for a long time. I don't want to destroy their usefulness.

Could I take enough medication to block the spikes? I don't know but I don't want to just go up in a general way like that.

I've really liked the pain control I get with Trileptal and the minimum side effects that I have with it.

I assume that fiddling with dosage and timing and things like that are the way lots of us get through the days. At least my doctor doesn't mind. Nancy

[EE03]

Me again, I'm taking Lyrica (75mg twice a day) and I've upped it from 25-50 mgs when needed (like now)! I ran it be my neuro and he didn't have a problem with it so I guess its safe to do. I also want to maximize the drugs usefulness and want to stay on as low a dose as possible to sustain, and it usually means dealing with some pain, but not the killer kind. When the breakthrough gets to be too much, I up the dose. When its manageable, I drop back. I hope this helps and makes sense!!

[Grant]

I find that my medication has had to increase as the TN has progressed. I hope I am relatively unusual but I am now on 4000mg of Keppra per day and 150mg of Lyrica twice per day but over the weekend my attacks have gone to a new high. I am now only getting about 2 minutes between attacks so I am back off to my Neurologist tomorrow.

[gidge]

well we were trying to decrease my tegretol after my MVD and I did manage to decrease it twice for a total of 100mg but am stuck at that stage...if I try to elminate anymore then that I get wicked attacks....at this level I am having some breakthrough but am being stubborn and not adding any further back in because I am determined that I can manage on this much (700mg/day)

I still have some hope that i am still healing as it's still all itchy underneath my surgical area which my surgeon said is "unique" at this stage.....and well just cause I have to believe there is hope.....in the meantime I hope there is something better medicine wise and treatment wise coming down the pike, I've tried all the other meds and had reactions to them so for now I'm stuck with Tegretol...as sick as it makes me I'm grateful for it because I'll take it over the pain any day:D

[JeanC]

I'm fairly new to TN and am wondering about my medication and pain levels. ... So basically, I'm curious to know if your meds completely block the pain or does it just reduce it to a tolerable level? Can I have a life that doesn't include always dealing with pain?
Hi, Alli,

I just wanted to add my two cents' worth here. Since you're TN2, i.e. not classic, it will be harder for your neuro to know which meds at what doses will help and whether you can get full control of the pain, but there are a lot of meds out there and hopefully some combination/dose will get it to a tolerable level for you. Talk to your neuro and see if you can make some adjustments and get control of the pain - i.e. to a level where it doesn't interfere with your life so much. Then if you can get and keep the pain under control for a while, you may be able to taper the meds down a bit, so you'll have room to add again later if necessary. If you can't get things under control with your current combination at any levels, then there are a lot of others to try in a number of combinations - check out the following for a list -

Medical Management (http://brain.hastypastry.net/forums/showthread.php?p=16668)

Only you and your neuro can determine doses and combinations especially considering you're on other things for other conditions. It sounds like your neuro is willing to work with you so go for it and see if you can get your smile and laugh back with the meds. If it's helping some now, it may be a little more will get you some of your life back, but work with your doctor and keep a pain diary so you can report on whether it's helping, how much, side effects, etc.

Striking Back will help with your questions when it gets to you. In the meantime - we're here for you. Good luck to you and keep us posted.

Jean

[allih]

Thanks for your replies. I'm going into see my neuro next week so I will talk to him about my meds and see if maybe I need to change to a different med or just increase my dosage.

It seems from what I've read from the posts here, that it takes fairly high dosages or a combo of meds to keep this under control. It's definetly time to discuss some kind of a change.

Alli

[KIMMERS]

Alli, welcome, but as we all really want to say, sorry that you're really here in the first place. We're glad you found us. You'll find this site full of wonderful people and information. I read what meds you're taking, I was on a cocktail like that a few years ago before I had stimulators implanted. I couldn't function on the Neurontin, I was up to labout 3400 mg a day. I don't like repeating my story over and over because those who know me, probably get tired of hearing it, but I too, have bilateral TN/Atypical Face Pain. I've had it for 14 years and have had one successful MVD and one failed MVD The successful MVD only lasted 9 years. For me, pain management was the best way to go. I saw neurologists for several years and in the end, all they could say was "I don't know what else to do for you." So, three years ago, I found a wonderful dr. in pain management and I will never give him up. My pain I would have to say is very well managed right now, with little help from meds. I'm not in a fog like I used to be. Hang in there. I know what it's like to not be able to smile/laugh without triggering pain. You will hopefully come up with a great combination of meds with your dr. He sounds willing to help you.

Take care,

Kim

[EE03]

UPDATE: okkay, I found out this morning that Lexapro I take is an adjunct to Lyrica and both are supposed to be working here on both my conditions so, perhaps that the reason I'm on such a low dosage. Just another light bulb moment here!!! I wish they would all occur at the same time.

[allih]

I took a look at the Medical Management link and it said that you can take Neurontin 3-6 times a day. I was taking it twice a day, morning and evening. Soooo, I've decided to breakup my doses and spread them out through the day and see if that helps to manage the pain better.

I really, really wish that my doctor had been a little more proactive when I started complaining about this. He basically told me what this was and gave me the Neurontin but no real instructions or info. Of course this is just one more item on my very long list of maladies, so I'm giving him the benefit of doubt and assuming he is waiting til my next appontment to see how I'm doing.

Alli

[JeanC]

I took a look at the Medical Management link and it said that you can take Neurontin 3-6 times a day.
Alli, those are my notes from a pain management doc's presentation at a conference - those are not recommendations and I'm not a doctor. It was to point out the number of drugs that are available for TN pain beyond the usual half dozen or so we we've all been prescribed at one time or another and the ranges of doseage that are possible - depending on the patient. You should always check with your doctor before changing your meds beyond what he's told you, especially with these antiseizure medications. Please also read the link for Neurontin/Gabapentin in the drug info link

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202732.html

where it says,

"Proper Use of This Medicine

Take this medicine only as directed by your doctor, to help your condition as much as possible. Do not take more or less of it, and do not take it more or less often than your doctor ordered."

I only pointed out my post about med mgmt so you'd know you've got a lot of options to try if the Neurontin doesn't help and you've got a lot of room yet with the Neurontin, but please talk to your doc first - you should be able to call and get some direction while you wait for your appointment. Once you're up to a dose that helps (it may take a while as you should titrate up slowly) - he should give you some guidelines for dealing with breakthrough pain or flareups.

And, yes, if your neuro is not familiar with TN, ask if he can confer with someone who is or refer you, though you don't want too many cooks messing with your head. Call the TNA and ask them to send him a professional packet (they have these for dentists, and I think they have them for MDs, too, but not sure) or tell him to get a copy of Striking Back for himself - it's coauthored by a neurosurgeon. It was updated in 2004 and is more up to date than most of what you'll find on the internet.

Please read the Sticky threads at the top of the TN forum - the Tips for Newcomers to TN Forum (http://brain.hastypastry.net/forums/showthread.php?t=2338) and Useful Websites (http://brain.hastypastry.net/forums/showthread.php?t=1792) if you haven't already. And if you don't get your book soon, call the TNA and ask if it's been sent out.

Jean

[IRead2]

Hi Alli,
I take 2400 mg of Neurontin a day for constant, burning pain. After I reached that dosage, my neuro instructed me to take it 4 times a day in even doses, but I found that pain returned after about 4 hours. With my neuro's permission I now take 6oo mg at 5:30 a.m. [I wake up early.], 300 mg at 9:30 am, 600 mg at 1:30 pm, 300 mg at 5:30 pm; 600 mg at 9:30 pm. I find this schedule works better for me. I'm not recommending it for you without your doctor's approval. I just thought you might be interested to know that other dosage schedules are possible. I do hope you'll soon find the right strength and combination of meds for you.
Pat

[allih]

Hi Jean,

I have a call into my doctor about my dosage. The bottle does say to take it 2-3 times a day so I think I am still within his guidlines. But I am definetely going to ask him about spreading it out more. I think it will help if I can spread the meds out through the day. You are right about checking first. I should do that before I start messing with my meds. Thank you for your concern. :) This is such a royal pain that I just want to find some relief and I got a little ahead of myself.

I hope we all have a relatively pain free weekend and enjoy the prelim to Thanksgiving.
Alli

[irishchick]

Hi Alli, when I was taking neurontin, I found that it didn't last as long as the tegretol had, so I asked my neuro for a dose that could be split into 4x per day. She had to look up what she could do, but we did it. I also found that not all pharmacies had stock of the different dose, but they ordered it for me monthly after an initial delay. FYI- there was a price difference between the different doses, even though the amount of mg per day was the same.

Karen

[allih]

Yes, I'm noticing that Neurontin is wearing off. I saw in the book Striking back that it only lasts about 7 hours so it's no wonder it's not working as I would wish. My neuro should be calling me back sometime today so I can get some answers on increasing my dose at least up to 2400mgs a day. I think that should help for now.

I've noticed that for a few hours after I take my morning dose, I'm fine... it's later in the day as it wears off and I try to get by, that the pain breaks through. After my evening dose, I'm fine again. Obviously, I need more during the day.

I just love the learning curve on pain management. :(

Alli

[IRead2]

Hi Alli,
Relief from Neurontin has never lasted 7 hours for me, more like 4 hours. According to my info, Neurontin comes in 100, 300, 400, 600, 800 mg capsules and 250/5 ml solution. I hope you and your neuro can find a dosage and schedule that gives you better relief. I didn't begin to feel any relief at all until my dosage reached 1800 mgs per day.

You're right about the pain management learning curve. Good luck!
Pat