This discussion thread invites members of the group to identify the medications they use for Type 2 Trigeminal Neuralgia or Neuropathy. These types of pain usually present as 24-7 throbbing, aching, burning pain instead of volleys of intense electric shock pain seen in Type I (Classical) TN. I will also broadcast this discussion intro to all members of this group and the Opioids group. Please answer three questions:
(1) What medication or combinations of medications has a doctor prescribed for your Type 2 TN or Trigeminal Neuropathy pain?
(2) For each of these medications, was your pain reduced?
(3) What treatments other than medication were you also using at the same time?
I will collect and analyze all responses to this posting, and announce an update to our Face Pain Info pages when I have put the responses in some reasonable order.
For 5 months now I have been on 800mg of Neurontin and 75mg of Anafranil (an antidepressant). It took some time to start working well but I thankfully I manage to go about daily life. My current doctor said Anafranil (Clomapramine) although it is a tricylic antidepressant, it is not commonly used for facial pain as Amitriptyline is better but since it seems to work, I dont want to rock the boat just yet by changing it. Mild side effects so far and I also take vitamins (B12, C, E, Salmon oil). I like ice packs for the burning sensations and heat for my bilateral V2 pains.
forgot to add that I’ve used acupuncture several times with fairly good results. the First 3 times it took away all but the worst pain, a few times the help was minimal but there were a couple of times I was almost pain-free after treatment! ( usually lasted anywhere from 1-4 wks, then gradually returned). however, this last treatment has lasted about 2 months so far.
tegretol did nothing & I had bad skin sensitivity to the sun (I live in the South). topamax did nothing but obliterate my already poor appetite. tramadol was like taking water… no effect. the topical cream helped my facial pain, but not my dental pain. however, I ended up with significant skin reactions… but it did help. I also tried DMSO topically with very good results (basically ‘painted’ the skin along the nerve branches with a Q-tip… relief was quick). it will burn a bit at first, you leave it on for about 10 min, then wipe off with wet paper towel. this helped more than aything before I had decent control with pharmaceuticals. one thing about DMSO: it is a fat emollient. so repeated application (which I did) resulted in some fat loss from my face - not much. can be purchased at vet or feed stores in US. it’s often used for joint pain in animals.
I was started on 150 trileptal twice a day and 300 Neurontin 3 times a day. The Neurontin doesn't do anything as far as I can tell. The trileptal is up to 300 BID now and helps for about 4-6 hours after the dose. I'm getting terrible unilateral headaches now and pain in the gland under my jaw. Ibuprofin probably is the only thing that takes the edge off of that pain. I was given Xanax for my MRI. It made my face feel normal for about 3 hours. I asked my doctor if I can take trileptal 300 3 times a day and Xanax .5mg twice. She hasn't answered me yet.
Take nortriptyline 20 mg morn and 20 mg evening. Also 200 mg gabapentin morn 100 mg afternoon and 200 mg bedtime. It helps bring pain down a bit. Doesn’t help the tightness in cheek area. Could have some improvement but have very swollen hands. Haven’t tried anything else yet.
Cymbalta 60 mg and Tegretol 800 mg are helping me a lot right now.
At first I didn't think the Cymbalta was helping, but when I went off it my pain spiked, so I went back on it. I was quite surprised by what a difference the Tegretol made!! Sadly, it has affected my eyesight dramatically so my neuro is lowering the dose slowly.
1) Prescribed in June 2011- Oxycontin 60mg (every 6 hrs) , Neurontin 800mg 3xday, Valium 5mg 2xday or as needed
2) Yes, if the meds wear off immediately I have a temperature change to very cold in the affected area, sensitivity along with the deep aching, irritability, increase depression, burning, pricking and decrease appetite
3) Acupuncture - no success
Massage - no success
Cranial osteopath by chiropractor - no success
Prior to trying these meds nothing worked. It was very hard to find a doctor to prescribe the opiates. Without them I would be completely disabled.
One more thing Red, my dosage for Oxycontin hasn't changed since day 1 which the doctor seems confused about. I don't think they understand how this condition exactly reacts to certain meds because they are too focused on TN1 and don't know much about TN2. Also, since I live in a state that MMJ is legal that also DIDN'T work. When I'm off on weekends or on vacation I can actually reduce the Oxycontin to about 2 a day so stress has a lot to do with this condition.
Great thread that you have started and I imagine that without an email list to get as many as possible to respond any amalgamated findings are that much more likely to be skewed. Wow, what a job that is going to be! I'm struck by those that report that effective medications stop being effective. From personal interest, I would be interested in knowing the length of time that medication was successful and to what extent. Overall, depressing commentary. I so wish for a medical breakthrough.
If I could turn sleep into a medication, I would do it in spades. Maybe the body could then heal itself. The one fact is that there is huge correlation...for me.. between sleep quality/quantity and well being. Whatever pain I have is much better tolerated. This goes along with others that report on the high significance of stress. I might add that meditation can help reduce stress. My wife is a yoga devotee. I may be speaking out of school to report that she badgers me to practice more meditation. But, none of us should feel guilty for falling short. Our closest and even those that are typically compassionate relations have no idea that we can't move mountains.
Thanks again Red. Once again you are willing to advocate and be instrumentally helpful.
Originally on Tegretol, had reaction, severe pain in my legs, could barely walk...Tegretol started a long journey of finding out what caused my TN and other issues I have. I was only on tegretol for 3 months, then switched to Lyrica.
Lyrica made me a zombie, with extreme dizzyness, it got rid of the lightning strikes, but nothing for the ATN (boring ear pain and teeth pain)
Had a glycerine rhizotomy 6 months after diagnosis, went off Lyrica because lightning strikes were gone.
Took and currently take as needed fiornial with codeine, and celexia for the boring ear pain that I still have on occasion.
I had a successful MVD, but an auto immune disorder I now have is causing the ear pain and occasional tooth pain and I am on prednisone which seems to stir up the ATN pain.
I would say for the ATN the combo of a narcotic and antidepressant was what really helped the most.
Acupuncture - mixed results depending on the following factors:
(i) points the doctor used - the more points (even distant points on hands, feet and along my upper spine) were used the better results.
(ii) thickness of needles - thicker needles made my face super sensitive, thin needles worked better
(iii) timing - when I had treatment during an acute pain episode I sometimes gained quite significant pain reducement for up to 24 hours. When I was treated when I didn't have a breakthrough pain it was hard to tell if it was doing anything or not.
Vitamin therapy (B vitamins prescribed by neuro) - impossible to say if it did anything
Facial massage - it helped but not significant pain reducement
Physiotherapy - it helped but not significant pain reducement
Marihuana (Sativa) - worked well at minimal dosage, improved sleep
I so agree with this statement. sleep qualiy is a huge factor for me. I recently came across an actual research study on sleep vs hydrocodone for pain relief. study showed sleep more efficacious! I completely agree.
from wm phillips:
If I could turn sleep into a medication, I would do it in spades. Maybe the body could then heal itself. The one fact is that there is huge correlation…for me… between sleep quality/quantity and well being. Whatever pain I have is much better tolerated
You can take Xanex with Triptal and Lyrica..and Amiltriptaline, and Lexatin...I take these every morning and every night...and triliptal I take another 100 in the afternoon...They actually do not have any effect ie drowisness, etc...and they do help a lot with the pain Beano B. said:
I was started on 150 trileptal twice a day and 300 Neurontin 3 times a day. The Neurontin doesn't do anything as far as I can tell. The trileptal is up to 300 BID now and helps for about 4-6 hours after the dose. I'm getting terrible unilateral headaches now and pain in the gland under my jaw. Ibuprofin probably is the only thing that takes the edge off of that pain. I was given Xanax for my MRI. It made my face feel normal for about 3 hours. I asked my doctor if I can take trileptal 300 3 times a day and Xanax .5mg twice. She hasn't answered me yet.
Trileptal 900mg a day ~ 3 150mg 2x day I feel like this drug helps the most
Neurontin 300mg at bedtime (recently reduced this from 900mg a day taken 3 x a day when starting the Lyrica.) - I wanted to return to work and I couldn't think straight on neurontin combined with Trileptal.
Lyrica 75mg 3x day
If I'm having a bad day I'll take something over the counter (like advil, aleve, tylenol) for inflammation a couple of times a day just to make sure I'm covering all the bases.
When my pain was really out of control while increasing the doses of meds I took Vicodin although I did not feel like it helped my pain only made me care a little less about it or cope better I suppose.
side note~ I need a clearer head to travel for my job so somedays while working I reduce the Trileptal by 1 tablet in the am. If I do this several days in a row I pay for it on my days off.
(1) I am taking 50 mcg/hr Fentanyl patch for over three years to maintain a slightly lower pain level and 10-325 hydrocone-APAP (commonly known as vicodin) for breakthrough pain with an average of three per day. (2) I also take 50 mg Amytriptyline once per day because the doctor believes everyone with pain should take it even though it only prevents shooting or short electric shock like pains which occur at extremely high pain levels for me. Numerous meds trials with three different pain clinics during four years tried everything from Lyrica, Trileptal, Elavil, Cymbalta, Dilaudid (hydromorphone) and morphine with no success. I even tried medical Marijuana with no success. Many meds like Oxycodone and Neurontin produced no relief but serious side effects such as dizziness and headache. The fentanyl patches definitely help and the hydrocodone tablets help about 30% of the time or only at lower pain levels. (3) Accupuncture, reflexology, upper cervical chiropractic, integrated manual therapy, and TMS treatment did not help. tDCS provided minor relief when the correct location was finally determined by LORETA processed EEG. My current hope is that because Quantitative EEG with LORETA processing has shown my over-active brain activity locations and power spectral level that this new technology as routinely used in Europe will be adopted soon in the U.S. One of the successful clinical trials report abstracts of these objective pain measurements is: