The only narcotic I take is Lortab and I can only take 2 pills a day. I have seen some of the drugs that people are on and they are on a way more powerful drug in itself or they are allowed to take more than 2 pills a day. If you dont mind sharing I would love to hear about what type of narcartic everyone might be taking. I am seeing a Pain Specialist in a couple weeks and I would like to have some idea of what has worked well for you..Thanks and God Bless!!
Most narcotics only take the edge off - especially with ATN I believe vs. TN1.
I've seen ketamine (also known as horse tranquilizer), percocet, dilaudid, hydrocodone, moraphine, narcotic patches, Opiods of all types. I think since I've been on here almost 2 years, I've seen every narcotic you could name tried on here.
Somebody will respond - but many only take them As Needed - when they are at the worst -
Usual protocol would be an anti-seizure med - with an add on of perhaps a narcotic while the seizure med is being introduced slowly, or in times of Worst Pains.
Research all you can on here and on the website of the Trigeminal Neuralgia Assoc.
Keep learning! I imagine your pain specialist does not have any TN patients. Its rare.
I have scripts for Lortab 10mg and oxycodone 5mg. Each of these are prescribed to be taken one tab every six hrs. I don't need to take them every day. For me the Lortab is more effective than the oxycodone and works differently on the pain. A few years ago I was prescribed methadone for severe pain and it was pretty effective. For the past month and a half I've been taking effexor xr at 225 mg a day, and this has been very good at covering the pain that neurontin & the other 1st line drugs have not addressed. Takes care of a lot of the burning, numbness and shocks/jolts too. For the worst days though nothing really stops the pain although I haven't yet asked for anything stronger, but would if I needed to. Hope this helps you friend. Good luck on your appt.
Hi
In Australia we have Panadine
No Idea if Codine and paracetamol are avaliable in the US. I understand that paractamol went under revive but its the over the counter freely avaliable drug here
any way back on topic
I Take Panadine extra every day
2 in the morning 15 mg codine and 500 mg of paracetamol.
then there is nurofen and nurofen plus
Thats Iburprofen (im sure you have that) but nurofen plus is Ibruprofen plus codine
.
The nurofen plus is quite effective as a low grade pain killer (ibruprofen is no good for asthmatics though and I have that).
So I have 2 Panadine extra in the morning (codine 15 mg and 500 mg paracetamol)
plus a nurofen plus
2 panadine extra at luch if needed (codine 15 mg and 500 mg paracetamol)
in the evenening pandine forte x 2 (30 mg codine plus 500 mg of paracitamol).
Then there is endone 5 mg if required.
If I am reaching for the endone I go to bed
So ATM I am taking quite a lot of codine paracetamol every day.
I am worried about this and bring it up with the doctors who do liver and kidney fuction tests.
All of this is on top of my normal drug intake.
Oh I have a damaged back as well. n top of the TN .
Couple of things:
The Endone is not unlike the lortab ... not the same but not unlike.
My Brain surgeon gave me two peices of advice
One
The narcotics hepl for certain types of pain. BUT TN not so much.
Codine is diferent and does help with TN a lot more.
I have found this to be true.
Codeine is a much much lower drug but helps more. But for say my back pain the narcotics like the endone etc helps way more.
Second.
Caffine
If you take your Narcotics Pain killers etc on some food but with a really strong cup of coffee then the potency will be higher.
Or they will work to thier full effect is more correct.
If you have bad pain and can do it try a strong coffy and your pain meds.
This helps me a great deal.
Oh and always try and eat with any pain killers. on an empty stomach not only will you feel sick but you will most likely not motabolize the medication.
Simon
My doctor won't prescribe any kind of opiate or painkiller. I have tried most of the anti seizure meds, I was severely allergic to Tegretol and had a bad reaction to Topamax, recently stopped taking Neurontin because it wasn't helping at all. I am not taking any meds now. I had MVD surgery 2 years ago, which helped somewhat, but now the pain is back but the episodes are shorter (and more frequent). I don't know what to do at this point. I've been dealing with this for over 8 years and I feel beat. I'm tired of pretending that it isn't that bad. Yes, I know I should feel grateful for what I have, and that I don't have a terminal disease. I shouldn't think this way, but lately I just wish I didn't have to wake up. Sleeping is the only break I get anymore
Suzanne, I feel for you. I went a couple years without narcotics. I was first put on Neurontin and gradually increased to 2400mg daily, I too was also prescribed Tegretol but it I didnt see a difference from it and Neurontin so my Dr. took me back off of it. The lortab does not diminish the pain completely, it only takes the edge off so I can rest during episodes of my worst pain. I too also have many days where I just feel like once I finally get to sleep I wish I didnt have to wake up because I know what I am about to deal with when I do.
Have you ever seen a pain specialist, if not, maybe they could offer you additional relief. I was told that I should never have any type of sugery for my TN which is Atypical and bilateral..so I have no other course to take except to try and find a good drug regimen in hopes of some type of relief.
Suzanne Marriott said:
My doctor won't prescribe any kind of opiate or painkiller. I have tried most of the anti seizure meds, I was severely allergic to Tegretol and had a bad reaction to Topamax, recently stopped taking Neurontin because it wasn't helping at all. I am not taking any meds now. I had MVD surgery 2 years ago, which helped somewhat, but now the pain is back but the episodes are shorter (and more frequent). I don't know what to do at this point. I've been dealing with this for over 8 years and I feel beat. I'm tired of pretending that it isn't that bad. Yes, I know I should feel grateful for what I have, and that I don't have a terminal disease. I shouldn't think this way, but lately I just wish I didn't have to wake up. Sleeping is the only break I get anymore
Simon,
You are exactly right a little food and caffiene does help the pain medicine work more effectively. I cannot take codien because I am allergic to eat and unfortunatley I cant take Ibuprofen because I have a lot of stomach issues. I have been told by 2 major hospitals in my area that I am not a surgical candidate so my only means to deal with this is to find a good drug regimine in hopes of some relief. Thanks for your reply.
SimonL said:
Couple of things:
The Endone is not unlike the lortab ... not the same but not unlike.
My Brain surgeon gave me two peices of advice
One
The narcotics hepl for certain types of pain. BUT TN not so much.
Codine is diferent and does help with TN a lot more.
I have found this to be true.
Codeine is a much much lower drug but helps more. But for say my back pain the narcotics like the endone etc helps way more.
Second.
Caffine
If you take your Narcotics Pain killers etc on some food but with a really strong cup of coffee then the potency will be higher.
Or they will work to thier full effect is more correct.
If you have bad pain and can do it try a strong coffy and your pain meds.
This helps me a great deal.
Oh and always try and eat with any pain killers. on an empty stomach not only will you feel sick but you will most likely not motabolize the medication.
Simon
I am the same way sleeping is the only time i feel normal I have been dealing with this for almost 3 years the first time it happened I had an mri and nothing was wrong and the pain went away I was never explained to that it would come back it was gone for a year and came back then went away and this year it has been back twice right now it has been at its worse and i am on 300mg of oxcarbazeoine 3times a day and I feel it is doing nothing I do not have a neurologist because the one I recently went to was horrible and basically told me to suck it and be glad i didnt have a terminal illness I feel no one understands the pain I am 35 I have two small children and I am a teacher I feel like my whole life has my dreams have been ripped right away from me:( I also need something more for the pain and a good neurologist I pray everyday and try to keep strong for my kids they r my world!!!!
Suzanne Marriott said:
My doctor won't prescribe any kind of opiate or painkiller. I have tried most of the anti seizure meds, I was severely allergic to Tegretol and had a bad reaction to Topamax, recently stopped taking Neurontin because it wasn't helping at all. I am not taking any meds now. I had MVD surgery 2 years ago, which helped somewhat, but now the pain is back but the episodes are shorter (and more frequent). I don't know what to do at this point. I've been dealing with this for over 8 years and I feel beat. I'm tired of pretending that it isn't that bad. Yes, I know I should feel grateful for what I have, and that I don't have a terminal disease. I shouldn't think this way, but lately I just wish I didn't have to wake up. Sleeping is the only break I get anymore
Colleen, thank you for replying. I am glad you havent had to ask for anything stronger yet, thats a huge plus. I take Lortab daily because it is the only thing that allows me any relief so that I can rest. I unfortunatley am not a surgical candidate and suffer from bilateral pain.Good luck to you also, thanks!
Colleen said:
I have scripts for Lortab 10mg and oxycodone 5mg. Each of these are prescribed to be taken one tab every six hrs. I don't need to take them every day. For me the Lortab is more effective than the oxycodone and works differently on the pain. A few years ago I was prescribed methadone for severe pain and it was pretty effective. For the past month and a half I've been taking effexor xr at 225 mg a day, and this has been very good at covering the pain that neurontin & the other 1st line drugs have not addressed. Takes care of a lot of the burning, numbness and shocks/jolts too. For the worst days though nothing really stops the pain although I haven't yet asked for anything stronger, but would if I needed to. Hope this helps you friend. Good luck on your appt.
Kc Dancer, you are right the narcotics only take the edge off, In my case thats the only way I am able to get any rest. Thank you for replying.
Kc Dancer Kc said:
Most narcotics only take the edge off - especially with ATN I believe vs. TN1.
I've seen ketamine (also known as horse tranquilizer), percocet, dilaudid, hydrocodone, moraphine, narcotic patches, Opiods of all types. I think since I've been on here almost 2 years, I've seen every narcotic you could name tried on here.
Somebody will respond - but many only take them As Needed - when they are at the worst -
Usual protocol would be an anti-seizure med - with an add on of perhaps a narcotic while the seizure med is being introduced slowly, or in times of Worst Pains.
Research all you can on here and on the website of the Trigeminal Neuralgia Assoc.
Keep learning! I imagine your pain specialist does not have any TN patients. Its rare.
I also have Atypical TN (although mine isn't bilateral). I was told by a neurosurgeon earlier this week that I'm not a candidate for glycerol injections (recommended by my neurologist) or gamma knife due to my age (I'm 35). I am a candidate for MVD, but I haven't had a chance to digest that option yet. I'm basically in the same boat as you in that I'm just trying to find an effective medication combo. I'm currently on 2400 mg of gabapentin and the occasional Rx for a low dose or Lortab (1/2 or 1 tab of 5/325 every 6 hrs as needed), the latter of which is very reluctantly prescribed as my neurologist. I wouldn't take opiates if someone could find an effective combination of non-narcotic medication that managed my pain at a level that I could tolerate and function. Unfortunately that has not been the case so far. Good luck to you with your pain specialist appointment. Hopefully they will be able to provide you with some relief.
Folks there is an opiate therapy group here on Living with TN that has 70 members. That may be a place to widen this discussion thread...
Regards and best,
Red
Suzanne,
Maybe you should find a new doctor, maybe try a pain clinic. I take Morphine for my TN1/TN2. It usually doesn't take the pain completely away, but it lessens it enough so that I can function. It seems that opiates don't work for everyone, but for me, and for a lot of other people, they are a life saver!! Also, as Red pointed out, we have the opiate therapy group. This group has helped me get over the whole stigma and worry about taking opiates.
Suzanne Marriott said:
My doctor won't prescribe any kind of opiate or painkiller. I have tried most of the anti seizure meds, I was severely allergic to Tegretol and had a bad reaction to Topamax, recently stopped taking Neurontin because it wasn't helping at all. I am not taking any meds now. I had MVD surgery 2 years ago, which helped somewhat, but now the pain is back but the episodes are shorter (and more frequent). I don't know what to do at this point. I've been dealing with this for over 8 years and I feel beat. I'm tired of pretending that it isn't that bad. Yes, I know I should feel grateful for what I have, and that I don't have a terminal disease. I shouldn't think this way, but lately I just wish I didn't have to wake up. Sleeping is the only break I get anymore
Here in the US doctors are so afraid to prescribe narcotics because of the strict drug laws which leaves those in pain in a terrible position. We are often seen as "drug seeking" to get high. It's awful.
SimonL said:
Couple of things:
The Endone is not unlike the lortab ... not the same but not unlike.
My Brain surgeon gave me two peices of advice
One
The narcotics hepl for certain types of pain. BUT TN not so much.
Codine is diferent and does help with TN a lot more.
I have found this to be true.
Codeine is a much much lower drug but helps more. But for say my back pain the narcotics like the endone etc helps way more.
Second.
Caffine
If you take your Narcotics Pain killers etc on some food but with a really strong cup of coffee then the potency will be higher.
Or they will work to thier full effect is more correct.
If you have bad pain and can do it try a strong coffy and your pain meds.
This helps me a great deal.
Oh and always try and eat with any pain killers. on an empty stomach not only will you feel sick but you will most likely not motabolize the medication.
Simon
My first episode I was on percocet for three weeks and it worked but only if I took it exactly every 3 hours. My second episode, it didn't help that much and finally saw a neurologist. I really thought it was my teeth but then on trileptal pretty much confirmed my neurologists diagnosis when it took away the pain. But I would take anything that was offered and I hope that my docs don't think I am drug seeking when I need something else. On a side note, my teeth no longer hurt! All that money on root canals (10 root canals and 2 surgeries on 8 teeth). When it was TN! I wonder how many TN attacks I have actually had.
Tkal, you might find our demographic results on dental treatment to be of some interest. Here's the local link:
http://www.livingwithtn.org/page/who-gets-tn
Regards, Red
I also take narcotics, fiorinal with codeine, which is for migraines, but helps with the pain..also coffee is my God, I drink 4 pots a day now and it takes the pain away..will have to check out the opiate group as well, thanks Red for the heads up
Wendy
Very interesting Red, I'm not surprised that the mean age is around 40 instead of 70 like they once thought. I am 44 but believe I've had this for at least 3 years, probably longer.
Richard A. "Red" Lawhern said:
Tkal, you might find our demographic results on dental treatment to be of some interest. Here's the local link:
http://www.livingwithtn.org/page/who-gets-tn
Regards, Red