Anyone know the newest drug out for TN?

I’ve tried just about every drug out there always hoping the
Miracle drug will find me. I always come back to Neurontin. My originL
Personality is gone. I would love to stop alldrugs just to see who I am

boy do Ihear you on that, I just went back t topamax it s like a miracle drug for meBUTfter awhile im become very depressed and tearful so Im going to try taking it off and on sort o f juggling Im also taking Nucynta for pain

I don't know if it qualifies as a miracle drug, but Oxcarbazepine (Trileptal) is now regarded as the second drug of choice behind Carbamazepine (Tegretol), in work published by the International Association for the Study of Pain (IASP). Many patients have good outcomes with Neurontin (Gabapentin) as well, either as monotherapy or in combination with one of the other anti-convulsants.

Go in Peace and Power

Red

I tried trileptal a while back but can’t remember why I didn’t like it. Seems like I always come back to neurontin. For me myMiracle Drug will provide pain relief and clarity of mind. Thanks Red for e mailing.

I have been on Neurontin, Tegretol, tomamax, lyrica and amitriptyline. I have opted to have more pain in order to be off drugs and have my mind back. I use ketamine, ketaprofen and lidocain creme from a compound pharmacy. I rub it on my face three times a day. On drugs I was a slug. Off drugs I am independent. I can read, concentrate and drive.

I am interested in the cream you have compounded. Can you tell me percentages? Does it help you? any rashes from it? Does the lidocain cream numb your face at all?

Thanks!

Shinemoon said:

I have been on Neurontin, Tegretol, tomamax, lyrica and amitriptyline. I have opted to have more pain in order to be off drugs and have my mind back. I use ketamine, ketaprofen and lidocain creme from a compound pharmacy. I rub it on my face three times a day. On drugs I was a slug. Off drugs I am independent. I can read, concentrate and drive.

Curious how the Nucynta works for pain for you?

June Scott said:

boy do Ihear you on that,,, I just went back t topamax it s like a miracle drug for meBUTfter awhile im become very depressed and tearful so Im going to try taking it off and on sort o f juggling Im also taking Nucynta for pain

The compound is 10% lidocaine, 10% ketamine 10% ketaprofen I selected a base of vani cream to mix it in. They once dispensed it in a Vaseline like substance that was not suitable for a woman's face. They had five bases and let me try each before they mixed it after the Vaseline batch. Walgreens charged me 160.00 for a batch. The local no name pharmacy charged 65.00 so shop around. It does not make my face numb. It has a calming effect. If face was an 8 before I rubbed it on it would go to a 6 or a 7. I also use Nucynta for the really bad times. It is the first pill that doesn't make me throw up or want to throw up. I can read or watch TV with it. I only take one 50 mg when it's bad to get a little relief. One will give me a couple hours. I can take it 3 times a day however I am afraid if I do it might lose it's effectiveness for break thru pain. I must take it before 5:00 pm as it gives me insomnia if I take it any later. I took it at 8:00 the first time and was awake and miserable at 2:00 am. My insurance won't cover Nucynta or the compound. I am still looking for a drug that will work after 5:00 when I just want to be knocked out that I won't throw up or have other reactions to. I have had morphine, codeine, Vicodin, tramadol, tylox, fentynal patch,

There are two new drugs in trials. One was developed for migraine and provides a targeted resp0nse against a gene in the trigeminal system, which is not general to the body. Joanna Zakriewska wrote of it in very glowing terms for the TNA newsletter a few weeks ago. A second technique is an attempt to do spot repairs on myelin damage using neuron stem cell extracts. It's been demonstrated in mice in the lab, and efforts are being made to move it into human stage I trials.


I check on these trials from time to time, and anybody can survey the trials database at NIH. I'll report anything promising that I come across...

Regards, Red

Hi,

I have posted this before and I'm not sure if your pain will respond to this, but my doctor had a pharmacist make me a nasal spray of lidocaine and ketamine. It's 4% lidocaine and 2.5% ketamine. It helps so much for a short amount of time, but that brief break in the pain is wonderful. I suppose it's very similar to the cream, but my pain has always felt like it was in my sinuses, so this goes right to where I need it. I think this is the third time I've posted this and I'm not pushing it. I just want everyone to know about it because it has worked so well for me.

I hope everyone has a lovely weekend.

Karen

Thanks...Does it make your throat numb at all from swallowing it?

It doesn’t make my throat numb. It has dripped down and made my lips numb. Years ago an ENT made me a lidocaine spray which helped. I told a new neurologist and she added the ketamine and it is truly amazing.

I'm new to all of this but have been on 1200 mg of Neurontin and find that it helps but doesn't help enough. I have been having a hard time sleeping because of the pressure and pain (I have constant symptoms that vary in intensity). I had a consultation with my chiropractor who is also big into natural wellness. He recommended a powdered formula that he sells called the PM Blend. Among other things, it has Gaba, magnesium cirrate, milk thistle extract, and Vitamin D3. Well, all I can tell you is that taking even half a scoop of that at night takes away almost all my pain and pressure and allows me to sleep. It does make me drowsy also so unfortunately I don't have any answers for you for during the day. If you want the information about the PM Blend, let me know!

Thanks. I would like to know more about the PM blend. It is great to learn how some non pharmacological things work...but it is hard to know what and in what amounts.

Mom2Josh, another option would be to taper up on your Neurontin, observing side effects (naturally with concurrence from your neuro). You're nowhere close to a maximum dose.

Regards, Red

i'm taking the CYMBALTA.. and while it's an antidepreesant i feel i'm MORE depreesed. but i guess it's because of despaie of the pain.

is the topamax a drug to take daily ?

i wonder why i wasn't offered that. guess it's not a first line med for ATN

Richard,

I'm not really wanting to go up on my dosage b/c of the side effects - fatigue, increase in appetite etc. I already feel like I'm hungry all the time and can't lose weight even low I'm on a really healthy diet! That's why I'd love to find more natural ways to control this. But it's good to know that if I have to increase my meds, i can.



Richard A. "Red" Lawhern said:

Mom2Josh, another option would be to taper up on your Neurontin, observing side effects (naturally with concurrence from your neuro). You're nowhere close to a maximum dose.

Regards, Red

I agree, it's nice to have some natural aids! The PM Blend is sold by my chiropractor as a nutritional supplement to aid in weight loss but as he explained to me, it can be very helpful to relieve nerve pain that isn't being helped already by Neurontin (since it has gaba), help relax you to go to sleep, and help protect the liver and kidneys from the affects of using powerful medications long-term. Here is the website where you can buy it: http://www.metabolicbootcamp.com/content/new-pm-blend-lemon-lime-1-kilogram It is a blend of: L-Glutamine, Gaba, Organic Stevia Extract, 5-HTP, Milk Thistle Extract, and Melatonin. It sells for $59.00 which lasts about 2 months. It's a powder that you dissolve in water or another liquid. I started at 1/4 scoop to make sure my body did ok with it, and then gradually worked my way to a full scoop. That's what I would recommend for you to do also. That's about the extent of it. I hope that helps! I love knowing that no matter what kind of a day I've had, I'll be able to sleep peacefully at night. =)

Thanks. I would like to know more about the PM blend. It is great to learn how some non pharmacological things work...but it is hard to know what and in what amounts.

Topmax was perscribed as an add on to neurontin after a dental cleaning after MVD surgery stirred up the nerve. It did not help the pain.

Nir Morita said:

i'm taking the CYMBALTA.. and while it's an antidepreesant i feel i'm MORE depreesed. but i guess it's because of despaie of the pain.

is the topamax a drug to take daily ?

i wonder why i wasn't offered that. guess it's not a first line med for ATN

I sometimes get some very unhappy feedback when I make this point, but I feel ethically obligated to do so anyway: THERE IS NO SUCH THING AS "NATURAL" when you are exposed to a substance which has been concentrated for its effects.

That point is consistently missed or outright lied about in the so-called "supplements" industry. Even when components are not chemically altered, when a substance is extracted from plants, herbs, etc., refined or concentrated to levels higher than those which occur in nature, you are dealing with a MEDICATION, not a natural substance. And very often you are dealing with a medication whose level of concentration can vary between manufacturing lots or even between tablets in the same bottle, because the "supplements" industry rarely standardizes its manufacturing processes at the plants they are operating in Mexico, China, or Malasia.

Thus hopefully constructive advice: if you're going to try non-mainstream medical approaches to pain control, then at least so inform your primary care physician, so they can check for interactions with other meds, or danger signs that should be checked in periodic blood tests.

Regards, Red