I read in the book Striking Back that some folks have had meds such as trileptal, tegretol, etc put into a cream form at a compounding pharmacy and this way they don't experience nearing as much side effects. Has anybody on here tried that and if so, how did/does it work? Has anyone tried Ketamine cream?
Yes, I have some now. The medication is abbreviated but this is the combination: KETA/GABA/BAC/AMIT/CLON/TRAM/BUP. I have ATN so I wonder if someone with TN could touch the area of pain without further pain. I've been pleased it has helped reduce pain. Since my pain is in varied locations I don't like putting it in my hair. Often my pain is above my eyebrow, all over my forehead so it works well there. At my last medication refill appointment the doctor asked if I wanted to try and and I'm glad she suggested it.
where do you find a compound pharmacist?
Yes, it saved me, totally. I am a huge proponent for creams! Ironically, I had ignored the one my doctor has given me because I just couldn’t think of how a CREAM could get down and deep on my crazy nerves…but it does…it takes the edge off and makes living with TN much, much more bearable…I have bilateral type two, by the way. Good luck to you! I think Bah and I have the same ingredients, just for your info. 
joan said:
where do you find a compound pharmacist?
Joan, your doctor should recommend one. Mine has one he uses and faxes my prescription directly to them. I think they may have to, as some of the ingredients are pretty hardcore (ketamine)…
Yes. I have done this. Its a mixture of different meds in a cream. The label on mine just says Custom Rx Gel. I had to ASK my neuro for it. He never even thought to prescribe it. After all these years he doesn't think to prescribe it !! Can you believe that ?? I have sense switched neuros. I got mine from The Compound Shoppe in Birmingham, AL. The label reads: GABA/AMITRIP/LIDO/KETO/FLURBI/BACLO. I would think any compounding shop can do it though. A prescription is needed. It does help me. I will also tell this......which I learned from the pharmacist....not the neuro. He said rub it on the part of your face in front of your ear lobe. Also, rub it behind the ear on the boney part of your head behind the ear. I found that the pharmacist was right ! It did help more. Of course, rub it on the part of your face where the pain is too. But the other two place mentioned here really helped a lot. One other thing I use. The Gallaxia cream which is non-prescription also works. Especially if its a milder pain. For me it works really well. No prescription needed. Its made by someone in Calif. I was skeptical at first so they just sent me a jar of it. To my surprise it helped with the crawling, tingling, bees-like stuff. I cant vouch for working on TN lightning shocks. I really doubt it would. But for the other sensations it helps me. You can look it up online.
I googled Gallaxia Cream and only this sight comes up...can you tell us where you get it from? Please post the address in California that you send for it. I would really appreciate it!!! Thanks!!!
So for example you would take the pills you would take orally and have them put into a cream?? And not take them orally?
I had the spelling wrong. Its GALLIXA. Go to gallixa.com Cost is $24.95.
I've used it. The compounding pharmacy is Optimal Pain Control in Russellville, Al. 888-■■■■■■■■. The compound ingredients on the label are DICLOF/BACLOFEN/CYCLOBENZ/GABAPEN/ORPHEN/TETRAC. 3%-2%-2%-6%-5%-2% CREAM. Your doctor will need to contact them and they will send it to a local pharmacy. I hope this helps.
I have and it helped some, but not enough to stop my meds. Do have a couple of comments:
Usually your doctor has a pharmacist they work with, they fax it to them and it gets mailed to you. Mine came in one large pump container. Next time I ordered, I asked for 2 dispensers, one under 3 ounces that I could carry in my purse and can go thru airport security. It's nice to be able to care one with you. I've noticed at the Walgreens up the street from me that they now do compounding (whether they do it there or send it out I don't know).
Also it was EXPENSIVE, fortunately my insurance covered most I think I paid $50-100 for it. On my EOB it said it was $1200 - so you might want to check the cost before you have it done.
RustyD said:
I've used it. The compounding pharmacy is Optimal Pain Control in Russellville, Al. 888-482-3972. The compound ingredients on the label are DICLOF/BACLOFEN/CYCLOBENZ/GABAPEN/ORPHEN/TETRAC. 3%-2%-2%-6%-5%-2% CREAM. Your doctor will need to contact them and they will send it to a local pharmacy. I hope this helps.
I use a compound cream that contains Ketamine, lidocaine, DMSO, imipramine and cyclobenzaprine. I have severe geniculate neuralgia in both ears as well as hemifacial spasm and synkenisis and I'm in constant pain.
Originally the cream contained gabapentin, nifedipine, Baclofen and tetracaine but it was just too sticky. After a couple trials with different combinations we settled on the current formula.
These creams are VERY expensive. My prescription is for 22 days and my insurance pays just under $1200. The compound pharmacy has a program that subsidizes patients who can't afford their copays so I only pay $35 of the $400+ copay. I use the cream several times a day and I'm always ready for the refill that arrives on the 21st or 22nd day.
This cream is still a little sticky but after an hour and a half you've absorbed all of the active ingredients and it can be washed off.
I also use Voltaren and a cream that contains both lidocaine and prilocaine. I mix the two creams together in the palm of my hand and slather it on areas where I have small fiber neuropathy and neuralgia pain. It's also good for migraines, neck and shoulders and pain that I have at head injury sites. As it dries I keep applying more until everything is numb and then it's much easier to use my coping skills to defuse some of the actual nerve pain.
These creams are available at any pharmacy and are much less expensive. They work well in my hair and once they dry they don't get on my clothes or bedding.
None of the creams numb all the pain but it does remove most of the outer layers of pain and combined with lyrica, low dose morphine, and Baclofen they allow me to sleep for 4-5 hours a night. I'm very fortunate that there are several compound pharmacies in the Portland area and the pharmacists are very helpful. They've worked closely with my doctors to develop a cream that works well for me.
I hope this helps.
Karen
I have tried a cream called Arnica right off the shelve.
I did. Two different applications. One went on the back of neck. The other was for over my front tooth where
the pain is focused. Expensive. No benefits to get excited about. But, we're all different. Ketamine was not apart of the compound. My rather lame recall is that this drug is something used mostly by veterinarians. Be careful to not be too adventuresome, yet I understand the strong will to declare war on our pain. At night pain is not an issue.
For day relief, not nearly enough relief to bite into a sandwhich. More just a numbing with a bad taste in my mouth.
Now, if there's a cream that would allow me to eat at will and not have to be concerned with ramping pain in my upper front teeth, I'm ready for a food fest.
I've tried ketamine. but not the cream. works wonders. I've heard that creams are a bit slower than pills since they are transdermal.
But in my honest opinion, I think creams are more effective. Less obvious that answer but true from my experience
I have the cream mixed up by a compounding pharmacy. The neuro said to use it for TN, but the label says for migraines. I experience severe pain when I apply, but it subsides after awhile. I was told to put in on both sides of face not just TN side, neck and shoulders. Will keep using to see if it's effective. I am desperate for any relief.
I am a huge supporter of topical meds for I cannot take the oral meds so much. I use a compounded Ketamine 10%, Voltran gel-Diclofenac 1%, Gallixa, and a homemade herbal pain nerve salve that I engineered thrust pharmacopeia studies. They are all helpful for ATN pain in my opinion.
I had a cream made at a compounding pharmacy with Ketamine, baclofen, lidocaine, gabapentin and several other meds in it...but I didn't really find it to be effective for me. Plus insurance did not cover it and it cost over $130.
BTW - Ketamine is an anesthetic agent that is still is use in hospital ORs in specific circumstances because it has a very strong pain relieving property without affecting respiratory drive....and it is also used in veterinary clinics. And of course it is widely abused by all the idiot drug users out there. It is a relative of PCP and thus can have deleterious, psychotic side effects.