This is a cream which my neuro prescribed -- I get rigid locked-up muscles in my neck/trapezius area when the pain is bad, so the combination of muscle relaxers and nerve agents helps, some.
It's not a miracle, but it at least helps me sleep when I'm in pain (ketamine will KNOCK YOU OUT, be careful not to overdo it and apply more than prescribed), and it helps with my peripheral neuropathy and actually does a lot for my hands/feet.
I have Ehlers-Danlos Syndrome (which makes me more prone to neuralgia/neuropathy in the first place), and I'm lidocaine-insensitive because of EDS (whichever mutation causes my type also seems to create a far higher prevalence of lidocaine insensitivity than in the normal population), which is why I'm using bupivicaine (Marcaine) as the last ingredient. Most people would use lidocaine instead -- but it's worth trying a different formulation if the first one you try isn't effective.
Mine is from "Institutional Pharmacy Solutions" -- your doctor calls in the script and they mail it to you. For me, one bottle lasts a couple of months.
I use one as well - I'm with Kaiser, so they farm it out to a local compounding pharmacy rather than do it in-house, but I still get my co-pay, which is great. It is made up of 6% Gabapentin, 10% Lidocaine, 10% Ketamine. I use it along with Gallixa for my ATN. I put the Gallixa on first, then the compounded creme. They really work the best when used together. I have read anecdotally here on the site that Gallixa works best for ATN rather than TN. When I put them on together, I can even go out on cold days, which is a real blessing.
Lily - I am with Kaiser also. How did you get them to send it out? I had to get the Rx from my Kaiser Dr. and take it to a compounding pharmacy myself...and self-pay. Glad it is helping you....sure wish it would help me. But they are calling my TN neuropathic.
Hi Mustex... Do you know what is in the cream? Mustex said:
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.
very interesting, I didn't know that about Ketamine.... thanks so much!! Not Again said:
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.
Thank you ALL for your responses, I have learned so much, I will have to reread and takes notes on everything everybody said. All you guys Rock for taking the time to educate me on all this and I wish you all the very very best and many many Painfree days ahead!!!
My first question would be : Where do you FIND a compounding pharmacist? One of mt dr.'s in CA complained that "nowadays, all the pharmacies do is 'pill counting'" -- it used to be that all pharmacies did tons of compounding of meds. [we were having trouble locating a particular form of a med at the time]
I see taht many posts have followed, w name o f compounding pharmacies, etc.
I may ask my neuro for some of my meds in that form now!
Another topical I've had a bit of success with, amazingly, is Rescue Remedy Cream,a homeopthic.... it can actually help with nerve pain; a friend recommended it , he'd found it useful for spinal nerve pain!
I have a compound cream. Ingred. are amrtripytline, diclofena, gabapentin and lidocaine. Mine comes from Biomed located in West Chester, Oh Phone 513-■■■■■■■■. I use it in twice a day to try to prevent severe attacks. If I am having a severe attack it really does not help. Nothing does. I just have to try to get over it. I'm not sure how much good it does but I keep using it hoping it is preventing severe attacks. My insurance has informed me they are no longer going to cover it. I pay a 70.00 co-pay but they charge the Insurance 800.00 for the compound cream. It really doesn't not have any side effects like the meds you take orally. I have not been able to reduce any of my meds with this cream so I'm not sure if it is really working
I've read on here these compounds costing so much. $800. $1200. I have about the same ingredients as what Lee 52 has in his. Amitrip, gabapentin and lidocaine. Mine is $30
I get mine from The Compound Shoppe in Birmingham, AL. I'm sure you can look them up online somewhere. Or in yellow pages. They'll jus mail it out to you. Need a prescription though.
Myshka said:
what an interesting question.
My first question would be : Where do you FIND a compounding pharmacist? One of mt dr.'s in CA complained that "nowadays, all the pharmacies do is 'pill counting'" -- it used to be that all pharmacies did tons of compounding of meds. [we were having trouble locating a particular form of a med at the time]
I see taht many posts have followed, w name o f compounding pharmacies, etc.
I may ask my neuro for some of my meds in that form now!
Another topical I've had a bit of success with, amazingly, is Rescue Remedy Cream,a homeopthic.... it can actually help with nerve pain; a friend recommended it , he'd found it useful for spinal nerve pain!
Yes, I have. I love it! It's a blessing! The cream helps a great deal if I use it regularly - up to 3-4 times a day as needed. The only problem is that you can't wear makeup (foundation) with it. Personally at this point - I don't care as long as it works. I tend to have flareups that affect my nose and face under my eye and it helps relax those muscles that get tensed up. I actually have to even put a little in my nose - crazy - but I do. You just rub it on where you need it. For me - it's on my chin - right up close to my lip, around my jaw area sometimes my cheek area my upper lip, sometimes my upper lip, nose, and the facial area under my eye. Sometimes my temple area. You just rub it in where you need it for a minute or two and leave it on. You can wash it off after about an hour. Wash it off your hands unless your hands are affected too.
I couldn't believe it took so long for someone to get it for me - to suggest it. With my chin and lower lip it tends to make things more numb but it decreases the sensitivity (pins and needles feeling I have all the time) and tightness as well. Makes things easier to deal with. I was like you mean I dealt with this for two years before someone got this to me????
Each combination is different depending on your needs and what meds work for you and what your sensitivities are. The compounding pharmacy is out of state for me. - they mail it to me. It's DermaTran Health Solutions.
What about side effects? I had horrendous side effects to my meds in tablet form... do you find side effects less noticeable using cream rather than ingesting the drugs?
I tried this for my ATN and I think because I have very sensitive skin on my face I could not tolerate it. It made me burn. I can't even wear sunscreens on my face. Mine did have ketamine in it and also gabapentin, not sure, but some lidocaine. It is very expensive, not covered by insurance, mine anyway which is a Medicare plan. I say try it. Some rave about it being so helpful. We are all unique to how we respond to something. Sharon
I find no noticeable side effects with topicals. Ketamine at higher doses can give me a 5 min lighthead. But worth the pain relief. The stuff builds up and works better over time. I guess because it deadens the nerve endings. I know someone else that has sensitive skin and can not tolerate it. No side effects at all from the natural stuff like Gallixa. I dislike the base gel my K comes in its dry and cakey hard to rub into my face that is attacking me. I had no luck getting the Kaiser pharmacy to get the compound pharm. to change it to something more spreadable. So I mix it with my favorite face cream and now it’s better to spread.
Where there’s a will there’s a way, Tree
I have had a cream like this made up for me by my pain specialist. It was custom made. Like others on here, I received it in the mail. In my case it was very inexpensive. I only had a $10 copay for two very large bottles. I thought it was helpful, but the Lidoderm patches were more helpful. The good part about the cream was that I could get into places that I normally could not get the Lidoderm patches onto.
There are other compounding pharmacies in and around Portland. Besides the one in the Lloyd Center, there is Community Compounding, 11030 SW Capitol Highway, Portland; Pacific Compounds Pharmacy, LLC, 327 SE 3rd Ave in Hillsboro; and The Beaverton Pharmacy, 12250 SW Canyon Rd in Beaverton OR97005.
We have only one compounding pharmacy in al of Portland, Oregon. Some people I know have mentioned mail order compounding pharmacies.
Some one was kind enough to liast all the ingredients in the topical, compounded cream.
So I see it had DMSO in it.
DMSO is hte carrier that bring the meds through tthe skin.. and it will bring whatver else is on your skin with itm, too!
[We used to use it back in my 'previous life' as a dancer', by grinding up apsirin, mising w/ DMSO, and applyin git locally to strains!]
So in case it has not been mentioned: make sure the skin is clean,and then don't put anything on the skin( lodtions, etc.) ( if it has DMSO) that you don't want absorbed.... for me, that woud lbe *nothing* ;-)