My pain is so bad that I've literally been on Percocet almost every day for a year and a half. Just wondering if anyone else takes this? It's the only thing that seems to help with the pain, but even then it only takes about 10% of the pain away which, anyone with TN will know isn't much. But I've literally tried everything else/or I'm allergic to all the other stuff.
Put Percocet in search box…and also
Have you tried medical MJ.? Can take the edge off without narcotics.
Here i gathered.....mannnny of our favorite meds, some in combos....maybe something you haven't tried. : )
http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion...
Here are our favorite topical pain relief meds too
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-...
Hope this helps!
Kc Dancer, I don't have pain in my mouth so neither of those links are really beneficial to me but thank you.
Bri, I've tried everything for my TN.
Percoset, Hydrocodone occasionally work about 10%, But with TN you're running to find anything that will get rid of the pain. Though I think the opiods sometime cause the pain to arise. I was using a regular dose of codeine and Tegretol in France where codeine is available without prescription. My neuroligist called the codeine a placebo, baby aspirin, ineffective against a pain likeTN.
Marijuana does cut down the time a seizure lasts.
Meditation does work as well in cutting down the time, but I think you must have some training with a master to do it right. Otherwise you are just meditating on the pain. Meditation through pain is called "crossing the abyss" and, to carry on with the metaphor, you cannot look down.
Sadly Carbamazepine does work when one gets to the base dose (800 mg for me).
However, and I am speaking my own experience, this drug is so strong it can change/destroy your life. It causes extreme fatigue, listlessness, idleness, confusion, an inability to plan for the future. It makes it very difficult to work, especially if you write or paint, any sit down job where the effort is from you alone.
After 4 years I have thrown in the towel and am applying for disability not just for the TN but for the side effects of the drug.
This disease is a drag, the only silver lining isn't fatal. So do whatever you think works.
percocet helps me. it's the only thing that's helped and i've tried it all, medications surgeries...
at best it reduces my pain by 20-25%. the problem for me is that i become tolerant to percocet in a millisecond.
i hope you find something that gives you greater relief
Hi Bri,
I’m on Tegretol slow release, this worked better for me in comparison to the regular Tegretol. Tegretol takes time to work in your system, and if you’re still experiencing pain at a lower dose, your usually told to increase ( with doctors instructions on how to do so) over a period of time…therapeutic doses range from 400mg-600mg for me, 800mg slow release was my magic number on my right side. I was able to work and have no real impact on my quality of life.
As my pain escalated on my left side ( I’m Bilateral) I was up to 1600mg ( my max dose) before hitting 1600mg, we tried adding Baclofen, gabapentin and and many other meds…I should add that my left side is med resistant, meaning I’ve tried all the meds possible with little to no relief…I had an MVD in 2013 which allowed me 4-5 months pain free BUT not TN free I eliminated 2 out 3 meds.
Currently I’m on 1400mg Tegreol CR and 240mg Dilantin. I find the Dilantin helps with the electric shocks.
I’ve also just started ( in December) Botox injections. I’ve noticed slight improvement, but am told to try a few more times as it can get better results with time. My next appointment is in March.
A few of my TN friends from the TNAC who live in Vancouver,BC have seen great results for themselves.
Depending on what type of pain you predominantly have there are a multitude of meds to try, assuming your allergies don’t interfere.
None of the narcotic type meds have ever touched my TN pain including Percocet, Demerol, morphine etc
I have classic TN on my right and predominantly TN2 with TN1 on my left.
I use the Magic Bag ( microwaveable heating pad) as well as Emla, a lidocaine mixed cream both available at Shoppers Drug Mart. They help to soothe and allow me to cope better most days. I also use oragel on my bottom teeth, gums and side of tongue, it burns but within seconds it can also help a bit.
An oral pain specialist may be able to break a cycle of intense pain by administering freezing into your mouth, just like at the dentist. This has worked for me twice. Might be hard to find someone like that though…( I’m in Edmonton)
Unfortunately it’s trial & error which truly sucks.
Hope you and your doctor can find something, either alone or in combination that works to give you some relief. It’s a struggle we all share…
(( hugs )) Mimi
the FIRST link is for 100s of medication …2nd is for topical. : ) stuff to put on your face. : )
Bri said:
Kc Dancer, I don’t have pain in my mouth so neither of those links are really beneficial to me but thank you.
Unfortunately I do. I am at 30 mg of Oxycontin twice daily and 10 mg of Oxycodone, five times daily. Then there are about 15 other scripts (various medical issues). We had found a combination of meds that really worked well or me but they kept making me very sleepy so they said I couldn't use them. I was using Lyrica and Topamax. I felt so much better that I thought that I could start weaning off of the narcotics! But the doctor said no, because I had to be able to work and I was too groggy to drive (I was driving a long distance to work everyday at the time). So, they stopped the Lyrica. As it is I have to take Modafinil to keep me alert during the day due to a sleep disorder.
So, it can work, well for Type 2, but the problem is that your body develops a tolerance and then they raise the dosage. It's a vicious cycle. It's a tough choice. At the time it was suggested for me, I had not been diagnosed and would have done anything for relief.
Yes, that’s what they give me. It helps a little.
percocet works for me. I take 4-8 10/325 a day, usually at about 11 a.m. and 5 p.m. I also take Lyrica, Nortriptyline, Zoloft, Xanax, Vyvanse and more. Medical Marijuana just knocks me out quicker sometimes. I lay down every day about 5 p.m. and take 200mg of Lyrica, 50 mg or Nortripyline, 1 mg of Xanax and 2-3 10/325 Percocet. I have tried EVERYTHING and this works the best for blinding pain. Unfortunately it takes time to be effective. When the pain is unbearable, I tale 1-2 every 90 minutes for about 4 hours and it creates a period where I can lift my head. Percocet is bad for Migraines so I will take Maxalt as well. I live in misery 24/7 for the past three years. I am almost ready to take the shotgun out in the woods! I find breathing exercises, meditation and a dark quiet space also help. I have been on Disability for threes years and have a trial with Social Security this year after waiting 2 1/2 years for a court date. I had to leave a $200,000 a year job and live on savings and LTD. I am a single parent with 2 teenage sons and 2 dogs. I stay i bed 18 hours a day. My personal hygiene, appearance weight (up 50 pounds) has my psychological aspects of this misery equal to the pain. I have become a total recluse and my poor kids have had to do without my energy every day. I have tried a dozen procedures and out of the box thoughts and all failed. The only things II have not tried but been cleared for is ketamine infusion therapy, 30 days of an IV or happy juice and facial mapping making a pacemaker for the face. Once my Disability is approved for life I will try some living well exercises. The kids will be off to college and I am going to move up North from Los Angeles to the Oregon border and just sit quietly for a year and see what happens. As soon as I breath, talk, drink, chew, swallow or move, I am in pain the builds to horrors dozens of times a day. If Percocet works, go for it. You will become addicted and should talk with your doctor about stopping if you do.
I am on oxycodone and it helps me to be able to work. It reduces the pain enough I can function. There are studies that show a combo of gabapentin and oxy is effective for neuropathic pain.