Im having a tough time at the mo with my tn, type 1 and type 2 mainly on right side but type 1 on left. My doc back from holiday tomorrow yippee! Im looking for suggestions for painkillers that work well for you guys as i have not had much luck in past. I live in the UK so not sure if we have same meds as States...
Hi Peaches
I use 37.5 mg of Tramadol in the afternoon when pain starts to escalate. I think it potentiates gabapentin until the next dose. Also takes the edge off but as far as I know and have read, painkillers don’t really work. Tramadol is a synthetic opiate with acetaminophen (I.e. Tylenol) and a bit of amitriptyline and nortriptyline and is known to help TN2. I also use it when traveling or entering large noisy places or if I am socializing a lot (which is not much these days). Hope this helps a bit.
Best
Bellalarke
This is a large percentage of TN meds for TN treatment and actual Pain meds that I gathered from this site in the last two years. Many are on a combination of meds
DRUGS THAT WORK
For Pain and for TN Therapy
These are not grouped into any order or by type of med
Gabapentin = neurontin
Amytriptolyn (sp?).
Carbamazepine = Tegretol
Oxycodone
Lamictal
Tramadol=Ultram
Klonopin = Clonazapam
Trileptal= oxcarbazapene
MUSCLE RELAXANTS
Baclofen
Nortriptyline, which is a close relative of amitriptyline
Methadone
Cymbala
Lyrica
Tylenol 3 with codine
Dillaudid
Toradol
Lortab
Topical on your face
Voltaren gel
Lidocaine Patches
Lidocaine cream
--for inside of mouth Lidocain mouthwash
Hi Peaches.
I live in Scotland too, I believe your are in the highlands. I am on carbamazipine and duloxetine. ( though I take duloxetine for fibromyalgia). As far as I know none of the regular painkillers work for T.N.. but I am getting some relief from these meds. They don't take the pain and numbness away entirely but at least I can function to some degree. I also have Tramadol, Paracetamol and Ibuprofen but this does not work for me.
Further to your previous post, my neurologist is in The Institute of Neurological Sciences, Southern General Hospital, Glasgow but this might be a bit far for you to travel to.
Hope you get some relief soon.
Ann
Peaches, I see I need to clarify. I use the tramadol as my add- on for pain. I couldn’t take carbamazepine, so take gabapentin (was up to 3,600 mg for awhile but knocked it back down to 2,700. The other 900 did not make that much of a difference pain- wise and it just made me feel awful and essentially non- functioning.) I’ve also added trileptal (a first cousin of carbamazepine) and am at 450 and holding for now. Had vision blurriness, etc… I am more or less used to the anti- convulsants, it took a long time and I was pretty miserable but eventually i got used to them, but I don’t like them. However, the alternative of the mounting pain everyday is not a viable option either. Choose something and stick with it for awhile.
Best of success with your doc back from vacation.
Bellalarke
I take gabapentin 2700mg per day in 3 900mg doses and this works fairly well in bringing pain down to functional (i.e. non-insane) levels. However as time goes on and the pain gets worse I am requiring 1-3 50mg tramadol pills during the day if it flairs up badly inbetween gabapentin doses.
I would agree with Bellalarke in that the tram potentiates the gaba. Before they figured out it was nerve pain I took the max medical dose of tram alone and it barely took the edge off. So I think that tram only works properly in combination with other things, but then that is only my experience.
Standard painkillers like paracetomol, ibuprofen, co-codomol don't do anything at all so I don't bother taking them.
Sounds like Neurontin/Gabapentin might be worth a try for you, can it be taken in combination with Carbamazepine does anyone know?
Also, I am seeing a neurologist soon to follow up and discuss new meds, so will be following this thread to see what else is mentioned.
Unsure said:
I take gabapentin 2700mg per day in 3 900mg doses and this works fairly well in bringing pain down to functional (i.e. non-insane) levels. However as time goes on and the pain gets worse I am requiring 1-3 50mg tramadol pills during the day if it flairs up badly inbetween gabapentin doses.
I would agree with Bellalarke in that the tram potentiates the gaba. Before they figured out it was nerve pain I took the max medical dose of tram alone and it barely took the edge off. So I think that tram only works properly in combination with other things, but then that is only my experience.
Standard painkillers like paracetomol, ibuprofen, co-codomol don't do anything at all so I don't bother taking them.
Sounds like Neurontin/Gabapentin might be worth a try for you, can it be taken in combination with Carbamazepine does anyone know?Also, I am seeing a neurologist soon to follow up and discuss new meds, so will be following this thread to see what else is mentioned.
I used to take gaba but my docs took me off it to start the oxcarbamazepine. I do take tramadol but find that mostly it doesn't even touch the sides.
My neurologist didn't get in touch with me after been back from hols yesterday and i couldnt get through to his secretary so im going up the wall! I even went into my dentist to get him to check my teeth again just incase its coming from them!
Im needing to get a new doc I think :( and who's got the energy for that when we feel like this!
I have learnt more from this site in past few days than from medical profession ever so thank you!!
Yep I've been to the dentist a few times, I think some people have even had unnecessary teeth taken out I have read.
I am not finding sufficient relief from gaba/tram so am going to try asking for pregabalin, have you looked into that at all?
Yea i just wish it was something as simple as teeth problems i would be the first to get a set of nice shiny false teeth!
No havnt tried pregablin at least i don't think so they tried a lot of meds at the beginning when they didn't know what it was, What sort of drug is the neurontin? Im going to mention these to doc thats if i catch him!
Painkillers don't work for most people. It's the anti-convulsants, anti-depressants, and muscle relaxers that help. But mostly the anticonvulsants.
Neurontin = Gabapentin, it is a brand name
I have been told pregabalin is basically a similar drug to gabapentin except it is a bit stronger, so lower doses give higher effects, something along those lines anyway
Pregablin is Lyrica by trademark. It was the first med I tried when we still didn’t know that it was TN2, or atypical TN. I took it for a month and found no relief, just some vision issues. I have been called in to my GP’s office to review bloodwork I had done last week. So probably a problem with the trileptal. I am seeing my neurologist May 9th for a spinal tap. On it goes…
If you are not getting good care with your present neurologist, by all means, seek a second opinion. I got no where with the first one. Second one is good but she lives quite a distance from me so my GP coordinates al to of my care. She’s great too.
Best of luck finding someone you can work with.
Hi Shindig, great to see you back online again. How are you feeling.
Ann
shindig said:
Asking for a narcotic isn't a great idea. In their eyes they think you're an addict.
I was on 2400mg gabapentin and didn't get much relief from it. I switched to oxcarbazapine and nortriptyline which were better for me, but they take a week to take effect. I had to keep increasing them until I got to the max dosage of nortriptyline, then lowered it to 100mg and added 60mg Cymbalta.
Then after talking about how long it takes for the drugs to take effect and I still have flare ups and it's hard to fall asleep, he added oxycodone.
Also the oxycodone is the least effective med I take for pain. It doesn't work well for nerve pain but it's better than nothing I guess
The Neurontin is an anti-convulsant , first line med -- but a pain med can be successfully added to this if needed.
BUT sometimes people can and do use various narcotics and pain meds for temporary or long term relief...
so don't leave them off your list and try them if you need -- they are usually an add on to the main med -
or used for as needed....the problem (as you know as you have been trialed on many meds) is that we are like snowflakes -- we are all cold and flakey - but also very different in our meds and dosages and metabolism etc etc. So be open and keep asking questions!
On my first flare up - they used narcotic in my IV, and it did kill the pain for 2 hours, it was the best 2 hours of that day!
Hi Peaches, I would ask him to start you on a low dose of hydromorph contin and an immediate release of dilaudid for breakthrough pain and then they can titrate as necessary to the point where you get the most pain relief with the fewest side effects. I also take mitrazapine 15 mgs at bedtime . I have found that hydromorphone works the best for my TN with little or no side effects. I used to get horrible side effects from the nerve drugs like gabupentin, Lyrica etc. and it was not worth it for me because they did not provide much pain relief anyway!
Just my thoughts anyway, Good Luck, Dave
Thats great i have a long list of meds to go in with. Im getting quite desperate now it seams to be getting stronger every 2 days ;(
When you guys get flare ups how long do they normally last?
Im sure my flare up has been caused by my gran passing away 3 wks ago,with all the emotions and stress although i was getting symptoms for 2 months running up to now.
In my experience, once a certain level of pain has been with me, that same level is reached very quickly again durning times of stress. It takes me about 48 hours of being really quiet and not talking and doing as little as possible to get to tolerable.
TN is a progressive and active disease. You need to get the level you’re at now stopped dead in its tracks with medical intervention. Go to your Emergency.
Anti- convulsants are the place to start. Don’t chuck them if they make you feel weird, dull, dopey, at first. The body adjusts somewhat. And so does our level of expectation.
So sorry you’re here with pain.
I take 3000mg of gabapentin plus 800mg oh tegretol daily. My neuro said you can basically take as much neurontin as you can stand the side effects for but taking more than 3 at a time is useless because your body can’t use more than 900mg at a time. Functionally I usually take more than my normal 3000mg of neurontin because my doc said take more immediately if I’m having an attack. Sometimes it actually works and stops it, but it also usually sends me to bed right away because I’m either tired or dizzy or both.
My pain management doc put me on8mg of dilaudid everyday. I’m going to ask to get off it though because I don’t think it does all that much for the pain, but now if I need to go to the ER they won’t give me much of anything because imalready on too much according to the federal government.
I have norco which is 10mg hydrocodone and 325mg acetiminophen but again, I rarely take them as they don’t really touch the tn pain. They mostly just knock me out.
Cymbalta and lyrica both made me all speedy and I felt like I was crawling out of my skin. Awful.
I recently tried lidocaine patches and they didn’t work for me either. I made a post about it including pictures.
I do take soma sometimes (muscle relaxer) and I do think that helps.
As you can see, many of us have tried a lot of different things with varying degrees of success. It’s all about finding the right combo for you. Tegretol and gabapentin are sort of the gold standards for tn though and they are both anti convulsants.
If your doctor in any way steers you away from narcotics/pain pills and you want to give them a try (don't have to stay on them for life in most cases)
-- then your next step is to find a pain management doctor -- it never ends!
Attacks can last seconds/minutes/hours/days ---
peaches said:
Thats great i have a long list of meds to go in with. Im getting quite desperate now it seams to be getting stronger every 2 days ;(
When you guys get flare ups how long do they normally last?
Im sure my flare up has been caused by my gran passing away 3 wks ago,with all the emotions and stress although i was getting symptoms for 2 months running up to now.