Has anyone had any experience with taking narcotic pain meds as their only way to control burning/aching pain from TN2? So far I've tried tegretol, trileptal, tramadal and baclofen. None of these have really worked that great for the burning/aching pain and have caused some pretty bad side effects (severe anxiety, panic attacks, depression, rashes, dizziness, nausea, grogginess, etc) Right now the med that works the best at controlling pain without other bad side effects has been Norco (hydrocodone/tylenol). I can usually take 1/2 of a 5 mg tablet and stay pain free most of the day. Some days I don't have to take anything at all. I feel like this is the best medication for me right now but I'm concerned that my doctor won't keep prescribing a narcotic because of the stigma of overuse and abuse of these pain meds. I only take 1/2 a pill when needed so I don't think I'm becoming addicted. Just wondering if any of you folks had any advice or similar experiences. I have an appt with my neurologist in a week to talk about getting a refill or coming up with another plan.
I take oxycodone as needed, and it does help take the edge off the pain. There are more meds to try that are not narcotic, if you decided to go that route again. It's a lot of trial and error, tinkering with doseage, with your Dr, of course. Your neurologist may refer you to pain management, or your gp may perscribe the pain meds you are taking since a low dose is helping you. Don't quote me on that, I'm not an expert. My gp had me sign a pain contract, and has been wonderful about trying different things and dosages. I also take Tegretol, 700mgs and have been fortunate in not having side effects other than sleepiness, which is why I take the larger dose at night. I think you can find more about the different meds used in the face pain info tab up top. I hope you find what you need!
Might I also say, our Dr's work for us, we have the right to be listened to about our treatment. It took someone else telling me this as I had never thought of it that way, I assumed the Dr knew best, but it should really be an effort with both of you working together. :)
I get a topical (=rub on skin, don't swallow) compounded med which contains ketamine (an opioid). Things you swallow don't kick in quickly enough for me, as my attacks last 30 - 45 mins. I have found this new ketamine cream very effective. If I apply it as soon as the warning signs appear, I can ward off an attack entirely. (I can only assume it would have been a full-blown attack without the cream.) It is very expensive and not subsidised by Aus govt, but it only takes a little and I'm keeping it in the fridge to make it last longer. Have noted no side effects. And no - I feel no compulsion to rub it on the right side of my face when I don't have the warning TN signs! For the record, I am already on a low consistent dose of methadone for my fibromyalgia pain, but it doesn't seem to help the TN.
I am able to tolerate Lyrica and Topamax but get the best result if I take both at the same time. I have problems with all of the others. The problem I have with taking these two together is that it makes me very sleepy. I also take narcotics to keep my pain under control, both a long-term medication and a short-term medication. I use these daily. I do see a pain specialist as well as a neurologist.
I know this really wasn't your question but have you tried a tricyclic antidepressant like Amitriptyline or Nortriptyline? I have bilateral ATN in all three branches and both of these meds have helped a lot
Not a medication, but I have a peripheral nerve stimulator implant which completely controls the burning boring pain of TN2. I would be happy to answer any questions you may have about it.
Christine
Thanks everyone for all the great input! I have an appt with my neurologist tomorrow to discuss what med to try now. I haven't tried any of the antidepressant meds yet so that may be an option. Just trying to find something that controls the pain without having such horrid side effects! Seems like so far the treatments have been worse than the disease! From what I've read on this board, that is the story for so many of us with TN. Thanks again for all the advice. Praying for peace and healing for us all!
justjane37- what dose of amitriptyline are you taking? I'm on a low dose but it's not so effective now- am I right thinking that these medications work best at lower dosages?
justjane37 said:
I know this really wasn't your question but have you tried a tricyclic antidepressant like Amitriptyline or Nortriptyline? I have bilateral ATN in all three branches and both of these meds have helped a lot
I've tried every drug and procedure, including a neurostimulator. NOTHING has worked except Hydrocodone. I take 7.5 mg usually 3 times a day with 10 extra per month for really bad days. I've had ATN with attacks of TN for 10 years and been on the hydrocodone for 6 years now (I had to go from 5 to 7.5 about 4 years ago). I take it on an as needed basis, which ic almost every day since any moving air under 80 degrees sets me off. I have had 3 perfect days this summer when I didn't have to take one at all. Nothing else has touched it and I would be a recluse sitting in my bedroom with a tower heater blasting on my face all day without it. With the hydro I am able to work a part time job, go out with friends, go to grocery store, basically live life pretty much as a normal person (except winter when I'm stuck inside even with the heater and the hydro).
Hi Jules. I am on Nortriptyline right now but was on Amitrtipyline for a year. Both have helped me a lot. I have been on a low 25mg dose and the highest I got up to was 75mg. And yes the side effects of both of these meds become too much for me around those doses. But lower is tolerable. Also Nortriptyline does have less side effects like the fatigue and dry mouth.
Jules said:
justjane37- what dose of amitriptyline are you taking? I'm on a low dose but it's not so effective now- am I right thinking that these medications work best at lower dosages?
justjane37 said:
I know this really wasn't your question but have you tried a tricyclic antidepressant like Amitriptyline or Nortriptyline? I have bilateral ATN in all three branches and both of these meds have helped a lot
I just posted in Success Stories, but before I had my spinal stimulator implanted, medical marina with low THC was very effective. I preferred it to Dilaudid (which I had a scrip for), or even IV dilaudid.
ive had ATN, GPN and ON for years. Norco worked for a little while,tramadol too. Norco will give you rebound headaches and so will Lortab. Percocets work the best for me and have all along. You have to establish a good relationship with your doctor to keep on percocets. I was accused of abusing drugs and I never had or have, I want to be off drugs and be normal again. This sucks!!
The burning is from stabs that happen so fast it causes burning instead of stabbing. The burning is the worst. To get rid of it I use Percecet, Xanex (really helps calm the nerves physically) Ambien, Botox and a prescription pain rub with meds I cannot tolerate like flexeril and numbing stuff. Voleratan Gel.
Neurologists cant help you with this, they will have you try Lyrica, carbamazepine, gabapentine which is the same med..find a spine pain manger and get blocks done. I have the Trigeminal Nerve block, Occipital Nerve radiofrequency and other spine radiofrequencies.
I know the med THC would work. Its all about relaxing the muscles in the head. How did you get that script though? Dilaudid also knocks it right out!! I cant get a script for that either!
Stephanie Rudin said:
I just posted in Success Stories, but before I had my spinal stimulator implanted, medical marina with low THC was very effective. I preferred it to Dilaudid (which I had a scrip for), or even IV dilaudid.
Mary, did they remove the stimulator? I didnt think it would work, it just doesnt make sense to me and seems it woud cause more nerve damage.
Mary L said:
I've tried every drug and procedure, including a neurostimulator. NOTHING has worked except Hydrocodone. I take 7.5 mg usually 3 times a day with 10 extra per month for really bad days. I've had ATN with attacks of TN for 10 years and been on the hydrocodone for 6 years now (I had to go from 5 to 7.5 about 4 years ago). I take it on an as needed basis, which ic almost every day since any moving air under 80 degrees sets me off. I have had 3 perfect days this summer when I didn't have to take one at all. Nothing else has touched it and I would be a recluse sitting in my bedroom with a tower heater blasting on my face all day without it. With the hydro I am able to work a part time job, go out with friends, go to grocery store, basically live life pretty much as a normal person (except winter when I'm stuck inside even with the heater and the hydro).
topomax is an upper. They actually use it wth phentermine in some diet pill. Wonder why your sleepy? Lyrica is for diabetic nerve pain in the feet, pins and needles and I never gave it a shot. I knew it wouldnt work.
Cathy in MD said:
Hi,
I am able to tolerate Lyrica and Topamax but get the best result if I take both at the same time. I have problems with all of the others. The problem I have with taking these two together is that it makes me very sleepy. I also take narcotics to keep my pain under control, both a long-term medication and a short-term medication. I use these daily. I do see a pain specialist as well as a neurologist.
Stella, I did have to have the neurostimulator removed but my case was because of a bad metal allergy to metals other than titanium. I was told the stimulator was 100% Titanium but turns out the electrodes were a titanium alloy. My cheek was all red and swollen and painful -- went through a couple of rounds of antibiotics for what the doctor thought was an infection. I kept saying I thought it was a metal reaction, then when water blisters started coming out of the scar, doctor realized it was bad reaction and it had to come out. Even the stimulator company rep did not know there was metal alloy. My doctor has implanted hundreds and only one other person had that bad of a reaction. There are several people on here that have had very good results with the stimulators. Don't let my weirdo case scare you!
I take Tylenol 3 for the pain. I am not fond of Norco because it makes it difficult for me to urinate. I suggest you take your Rx bottle with the pills you have on hand, with you to your appointments. I think it reassures docs who are worried about abuse to see the supply you have on hand. A surgeon Rx'd Norco for post-op shoulder pain I took the pills with me to the follow-up. I offered to trade them for an Rx for Tylenol 3. He had no problem with that. I wish there was something available for the pain that didn't prevent me from driving. Best wishes!
I have taken the same meds. I dont' feel any of them help much. I really want off the Tegretol. Hate the side affects. Having MVD surgery this Fri 18th. Very scared that it won't work. I seem to have problems getting Drs to prescribe anything. I seem to have problems even reaching my Drs. Some take as much as 2 wks to get back to me. I have asked to try other meds but w no result and that is why I have decided to go on w the MVD surg. NO one will get back to me on anything. And if and when they do they do not want to prescribe pain meds. Says it is easy to get hooked on them. I had a back surgery and had suffered for over 3 yrs and was on hydors that whole time. After the surgery I had NO problem getting off of them. Can't sleep either and no Drs will try any sleeping aids. I just don't get it. The meds are out there but no one wants to try them.
Moose, I sent you a friend request. I went through the same thing. You have to be insistant with your medications and go through hundreds to discover a combo that works. Also, find a good GOOD pain manager!! Dont do the MVD yet, they are not taking you seriously enough to cut your skull open!