Hello! I'm brand new here, so I apologize if this has already been asked. I have been diagnosed with Geniculate Neuralgia after a long time and many incorrect theories as to what my wretched pain is. My neurologist is great, however my primary care physician is incompetent. I have an appointment with him tomorrow and I would like to be able to present him some ideas for medications that have worked for others. I am currently taking Effexor, 60 mg MS Contin, 900 mg Tegretol and a lot of ibuprofen. I would appreciate any feedback on what has worked for pain relief for anyone else. Thank you very much in advance!
Hello,
I take Amitriptyline and it works for me..I also take ibuprofen for break though pain..There are people on here that take a combination of meds and will answer your question better than I can..
Are you in US. Or UK.?
I have a list of many meds I gathered from here… What time would you need it by …central standard US time?
Hi! Anytime before 2pm tomorrow would be great if you have a chance. Thank you!
I'm in the U.S., Arizona specifically.
Kc Dancer Kc said:
Are you in US. Or UK.?
I have the GN pain too and take gabapentin, tramadol, and nortriptyline which helps with burning somewhat. ( tegretol lethal for me)
Good luck-
Some people on one med – lots on more than one med at a time
—many have a generic and many misspelled here!
Some taken every day – some taken as needed.
Some are topical –most are oral—
These are all meds I’ve grabbed and made a list of what people have posted / that people have had success with from around the world. What works for one person – seems not to work for another many times.
I HOPE this helps !!!
Lamictal
Trileptal.( oxzacarbabine) / Tegretol
Lyrica
Gabapentin, same as Neurontin
Trimonil,
Zebinix,
Loratab
Tylenol 3
Ultram/Tramadol
Baclofen
Amitryptiline
Ativan
Ketamine
Moraphine
Carisoprodol
Propranolol
Lidocaine mouthwash /Nose spray / topical cream
phenytoin sodium,
topirimate,
alprazolam
Lidocaine patch
Klonopin
Dilaudid,
Oxycodone
Cymbalta
Cannibis
nortriptyline
methadone
Diazepam (valium)
Diflunisal
Trazadone
Vicodin
For pain, as needed: dilaudid, toradol, valium all at once.
In ER: IV dilaudid + toradol + benadryl (synergistic to enhance effect of other two)
Compound RX from compound pharmacy where they mix it for you:
Here is the ingredients and percentages:
Ketoprofen (toradol) 20%
Gabapentin (neurontin) 6%
Lidocaine 2.5%
Baclofen (muscle relaxer) 2%
Cyclobenzaprine (Flexiril) 2%
A salve of 6%gabapentin, 10% Ketamine, 10% Lidocaine (I mix it with the cannabis salve). This does give me some relief.
- maybe you can request this combo salve w/out the cannabis from your pain docs - it's pretty benign and non-opiate based.
“ I do have a medical cannabis card, and I'm having the best luck with the cannabis salve - I cannot tolerate the side effects of it ingested or smoked - however they are now growing strains with low THC but high cannaboid levels, as studies have found that these are also active agents for pain relief.”
Toradol works for me but just for a few a hours problem is that it makes mereally sleepy and then I can’t go to work. Is been hard cause I work in a call center and I can’t stand the headset I can’t even brush my hair is really painful and with just 400mg of tegretol it hasn’t been working :(. Help!
I cannot thank you enough for the list of meds!! Mr doctor claims he's at a loss for how to help me, so this will be incredibly helpful!
Kc Dancer Kc said:
Some people on one med – lots on more than one med at a time
—many have a generic and many misspelled here!
Some taken every day – some taken as needed.
Some are topical –most are oral—
These are all meds I’ve grabbed and made a list of what people have posted / that people have had success with from around the world. What works for one person – seems not to work for another many times.
I HOPE this helps !!!
Lamictal
Trileptal.( oxzacarbabine) / Tegretol
Lyrica
Gabapentin, same as Neurontin
Trimonil,
Zebinix,
Loratab
Tylenol 3
Ultram/Tramadol
Baclofen
Amitryptiline
Ativan
Ketamine
Moraphine
Carisoprodol
Propranolol
Lidocaine mouthwash /Nose spray / topical cream
phenytoin sodium,
topirimate,
alprazolam
Lidocaine patch
Klonopin
Dilaudid,
Oxycodone
Cymbalta
Cannibis
nortriptyline
methadone
Diazepam (valium)
Diflunisal
Trazadone
Vicodin
For pain, as needed: dilaudid, toradol, valium all at once.
In ER: IV dilaudid + toradol + benadryl (synergistic to enhance effect of other two)
Compound RX from compound pharmacy where they mix it for you:
Here is the ingredients and percentages:
Ketoprofen (toradol) 20%
Gabapentin (neurontin) 6%
Lidocaine 2.5%
Baclofen (muscle relaxer) 2%
Cyclobenzaprine (Flexiril) 2%
A salve of 6%gabapentin, 10% Ketamine, 10% Lidocaine (I mix it with the cannabis salve). This does give me some relief.
- maybe you can request this combo salve w/out the cannabis from your pain docs - it's pretty benign and non-opiate based.
“ I do have a medical cannabis card, and I'm having the best luck with the cannabis salve - I cannot tolerate the side effects of it ingested or smoked - however they are now growing strains with low THC but high cannaboid levels, as studies have found that these are also active agents for pain relief.”
Oh gosh, I'm so sorry to hear that! I understand, though. If my kids even touch my ear or I try to lay on a pillow I feel like screaming!
Tats85 said:
Toradol works for me but just for a few a hours problem is that it makes mereally sleepy and then I can't go to work. Is been hard cause I work in a call center and I can't stand the headset I can't even brush my hair is really painful and with just 400mg of tegretol it hasn't been working :(. Help!
Thank you! What did Tegretol do to you? It currently has my liver enzymes in the near danger area, which is unfortunate since it actually helps somewhat.
Bellalarke said:
I have the GN pain too and take gabapentin, tramadol, and nortriptyline which helps with burning somewhat. ( tegretol lethal for me)
Good luck-:)
Tegretol made me feel like I was living “in a cape of death”. One of the most terrible feelings I ever endured and it took a long time to go away after I stopped it. So I went to gabapentin and am currently 3,600 plus 10 nortriptyline and 75-110 tramadol. I can take more tramadol if I want but I find if I take the 75 around noon, I am good to go for the rest of the day. Its not good to wait until pain sets in an mine does arpund 1:00 pm like clockwork. If I am traveling or out and about much I up that . I also had a trial of trileptal (first cousin to tegretol but within weeks sodium levels feel dangerously as did blood count and sugar, so I stopped it immediately although it was helping with pain but too dangerous and I felt just awful) . I’m doing not so bad at high gabapentin but when the cold weather returns it will be killer again. I have neurosurgical consult this summer.
Good luck, let us know how it goes.
Bellalarke
RueAnn said:
Thank you! What did Tegretol do to you? It currently has my liver enzymes in the near danger area, which is unfortunate since it actually helps somewhat.
Bellalarke said:I have the GN pain too and take gabapentin, tramadol, and nortriptyline which helps with burning somewhat. ( tegretol lethal for me)
Good luck-
BTW, I need to keep my ear on left side covered at all times. It helps. Also can’t put an ear bud on that side or hold phone to head.
Let us know what happens -- if he can't find something on this list -- better get a new doctor!!!!
Thank goodness for a methadone prescription! I've read that works for many folks and it's the only pain med I haven't tried. Here's hoping for some relief until radiation or surgery. Thank you again! It helped immensely to present him with a list of what has helped others with TN and GN. You rock!
Kc Dancer Kc said:
Let us know what happens -- if he can't find something on this list -- better get a new doctor!!!!
You are welcome…Please do muchhhh research on radiation… MVD surgery if you are a candidate… Seems to becoming better at higher success rates than ever before… Let us know how methadone works!
My husband is terrified about the radiation, even more than the MVD surgery. Have you had either? The radiation seems to have a much lower success rate. I'm just now learning about both. I plan on researching on here what people have had more luck with, and what the side effects are. Have a great night!
If the radiation is Gamma Knife or Cyber Knife - here is what long time researcher here / moderator posted recently under the groups tab -- under Failed Procedures Group
In the standards of the International Radio Surgery Association, statistics are offered which indicate pain recurs for about 50% of all GK patients within three years. I haven't seen statistics beyond 3 years. But all other forms of surgery tend to stabilize out at about 5-7 years with additional pain recurrence in about 2% per year of additional recurrences after that. I encourage you to validate these figures against the experience of the surgeon(s) who did your two procedures. Likewise be advised, that two uses of radiosurgery against TN are generally regarded as a lifetime limit, to avoid damaging surrounding brain stem or cranial structures.
I know now that I think after being on here 2+ years that only those who are not MVD candidate would consider radiation first.... or those who are by all means afraid to have cranial surgery.
If you do Gamma first - then an MVD -- the MVD 90+ % rate goes down
Can you get the book - did I mention "our bible" here 'Striking Back" by Dr. Ken Casey? MUCH great info and treatment info on TN / ATN
the one thing about the book is that the MVD rates for success have gone up since published.
BUT
The way to put those odds in your favor is to find somebody who has done hundreds and hundreds of them
I flew to Michigan to have Dr. Casey --- He learned under the inventor of MVD
1.5 years later now - I have 2-5 percent pain once or twice per week.
I would do it all again
Not a picnic - but 3 weeks in bed, and got off those damn meds
The MVD rates are even higher in the first 3-7 years of onset of disease.
Enough for now--- I'm not MVD salesman! I researched here and at the official TNA/face pain site for months (about 5) before booking my airplane!
I had MVD 1 year to the week of first onset.
Dr. Casey will correspond over email and I imagine have done thousands of TN procedures - both kinds.
read/learn/ask --- over and over and above all ---- remember that those who have had great long term success rates with any procedure don't generally come back here -- so postings here are skewed as largest percentage are here for more support for failed procedures or looking for new options because remission has ended.
Keep Posting!
You have been such a great help and wealth of information for me. I truly can't say thanks enough! I am so glad to have the figures you shared on each procedure. I had no idea the rates went done if you had Gamma first, and that it can only be done twice. I have 'Striking Back' on my Amazon list now! Out of curiosity, how bad was the pain for the 3 weeks after the surgery, as compared to the pain you were in before? I am leaning towards MVD surgery, but still have to go in for a radiation consult. I can't imagine deciding to go through radiation, then have it not work. It seems almost better to be scared to death, but go ahead with the surgery to get it over with and move on with my life. I can't imagine a pain free or med free life any longer.
Thank you again! I'm so grateful for all the info! Have a wonderful night!
Kc Dancer Kc said:
If the radiation is Gamma Knife or Cyber Knife - here is what long time researcher here / moderator posted recently under the groups tab -- under Failed Procedures Group
In the standards of the International Radio Surgery Association, statistics are offered which indicate pain recurs for about 50% of all GK patients within three years. I haven't seen statistics beyond 3 years. But all other forms of surgery tend to stabilize out at about 5-7 years with additional pain recurrence in about 2% per year of additional recurrences after that. I encourage you to validate these figures against the experience of the surgeon(s) who did your two procedures. Likewise be advised, that two uses of radiosurgery against TN are generally regarded as a lifetime limit, to avoid damaging surrounding brain stem or cranial structures.
I know now that I think after being on here 2+ years that only those who are not MVD candidate would consider radiation first.... or those who are by all means afraid to have cranial surgery.
If you do Gamma first - then an MVD -- the MVD 90+ % rate goes down
Can you get the book - did I mention "our bible" here 'Striking Back" by Dr. Ken Casey? MUCH great info and treatment info on TN / ATN
the one thing about the book is that the MVD rates for success have gone up since published.
BUT
The way to put those odds in your favor is to find somebody who has done hundreds and hundreds of them
I flew to Michigan to have Dr. Casey --- He learned under the inventor of MVD
1.5 years later now - I have 2-5 percent pain once or twice per week.
I would do it all again
Not a picnic - but 3 weeks in bed, and got off those damn meds
The MVD rates are even higher in the first 3-7 years of onset of disease.
Enough for now--- I'm not MVD salesman! I researched here and at the official TNA/face pain site for months (about 5) before booking my airplane!
I had MVD 1 year to the week of first onset.
Dr. Casey will correspond over email and I imagine have done thousands of TN procedures - both kinds.
read/learn/ask --- over and over and above all ---- remember that those who have had great long term success rates with any procedure don't generally come back here -- so postings here are skewed as largest percentage are here for more support for failed procedures or looking for new options because remission has ended.
Keep Posting!