Well I just go to a regular DR. I’ve tried Tegratal, amatriptaline, Topamax. Now the Neurontin is what I handle best but I still get a lot of pain everyday. He just wants to do two .5 mg of klonopin a day and thinks I’m on too high a day mg of the Neurontin, 3,000mg. All of that is just not enough to handle this pain. I thought maybe a neurologist could help manage my pain better.
Can u go to a pain management dr.? I’ve found them more helpful with “cocktail” combos of meds. Oxcarbazapene, baclofen are working with norco or tramodol. And an occasional bit of weed if needed. I was on neurontin for a long time 2200 mgs a day with breakthrough pain. The ox and baclofen aare relatively low doses.
Have you tried lidocaine face patches? That is how I had less meds… Call your regular doc. If you want MVD. or specializing in TN…FIND the best neurologist !
and don't let them tell you the MVD won't help with ATN either. Mant srudies show its very helpful, hav ethe doc look it up or better yet print some out and show them
I am very creative when dealing with TN pain especially. Enuf said. One thing to watch out for -- even if you have smoked in the past for recreational purposes. Go slow. Being in pain and thinking about how TN pain could be with you the rest of your life could put you into shock. I mean literal medical shock. Especially for TN newbies. So make sure to dip your toe in first and see how you react. Not medical advice of course... just saying. This goes with all creative ways of dealing with TN pain. Just try one new thing at a time so you don't go on overload even with something like aromatherapy. Sending your warm wishes from the cold midwest of US. Tina
I will ask for Lidocaine patches. I guess a Pain Management Dr would be best for me, because I am afraid to get any kind of procedure done. I've had gastric bypass 12 years ago and had bad complications and then this... complications of a simple tooth extraction resulted in ATN! I hate I will have this the rest of my life! I hurt all of my waking days unless I stay drugged up on Neurontin 3000 mg and Klonipin, which I'm not prescribed enough of, I can not take any kind of pain pills or ox due to a stomach ulcer I have. What a way to live life.
I do not have a diagnosis of ATN but have many diagnoses from different docs from nueropathic pain to TMD. I have terible burning in my ttohand sometimes get burning in my palatte and gums which feels like fire in my mouth. Sounds like ATN to me. How much nueorontin are you on and how much klonopin? I have been on those with no relief. Was wondering if a higher dose would help me. If I knew that M would help me I would take it. It is not legal where I live and I would be afraid of getting something that was dangerous, but i would find a way to get some that was safe. If the lawmakers in this country had the pain you know they would legalize it! If you tell your nuero about the M can you get in trouble? Better check that out before you tell him. Good luck.
Gizmo
me said:
I have ATN. And It helps the pain instantly. But not for long. I still have to take Neurontin and klonopin but usually less of the pills with marijuana. It's not legal here. I'll be going to a neurologrst soon. Should I tell him I use M for my pain or not? I don't want him to think I'm a drug seeker.
As a resident of Washington State, I have been exploring medical marijuana products. My naturopath recommended products with a high ratio of of cannabidiol (CBD) to tetrahydrocannabinol (THC) content; I found the range of products a little overwhelming, and you might find it hard to find a clinic with this sort of refined product.
In general, I find that it does help to relax my nerves bringing on an aura of overall calm. I have MS so it is important for me to maintain a certain amount of function because I at least need to be able to walk, too much psychoactive stuff is better suited to just before bedtime (my personal recommendation). I think that there is a use for marijuana to help with TN, but for me it is addition to my other medications. I have not tried the cannabidiol nasal spray, but it is something I'd like to try.
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Medicare shouldn't know anything unless you try to use Medicare to pay for it. When seeing a MM clinic naturopath to be MM qualified in my state, I used my Medicare card to show proof of healthcare coverage. But in my case I paid for the products in cash.
The real question is whether it is possible to track these purchases, and deduct the cost from our taxes?! I think so...any accountants out there?
I am going to get my medical marijuana card tomorrow because it does help! Significantly for me at least, without the side effects of carbamazapine or gabapentin.. I watched my mother get messed up from opoids so I'm steering far clear of those and pot seemed to relieve the stress that help agitate my pain. I save it as a treat as I have no desire in being a stoner -- I compare it to have a beer every few days or something.
Marijuana is advocated for neuralgic pain. However, if it's not legal there, it would depend on the attitude of the neurologist.
Since you can't get it legally anyway, I would advice against mentioning it but that's just how I feel. In my state, I got my diagnosis first and then I brought that diagnosis to a medical card facility which determined if I was legible or not (I am). If it helps, it helps, that's all I got to say about it. I was never a fan of pot but it helps a little bit and even a little bit of help is better then none -- all of us with TN are desperate for pain relief, and marijuana helps. Doesn't cure it, but it does help.
me said:
I have ATN. And It helps the pain instantly. But not for long. I still have to take Neurontin and klonopin but usually less of the pills with marijuana. It's not legal here. I'll be going to a neurologrst soon. Should I tell him I use M for my pain or not? I don't want him to think I'm a drug seeker.
I have ATN. I've also had a TN episode lasting 10 days or so which a dentist cured with a simple bite correction. Both are hell. I live 5 minutes from the fist MM dispensary in NJ. IN MY TOWN! Under Governor Christie's MM law, you have to be on death's door to qualify. Here's hoping Bridgegate sends him packing. Can it help to tell your neurologist that you've tried it? In general I think it's best to be completely open with your doctor. If his reaction is disappointing, maybe he shouldn't be your doctor. Are there drug interactions with marijuana that we need to be aware of? Just a thought.
me said:
I will ask for Lidocaine patches. I guess a Pain Management Dr would be best for me, because I am afraid to get any kind of procedure done. I've had gastric bypass 12 years ago and had bad complications and then this... complications of a simple tooth extraction resulted in ATN! I hate I will have this the rest of my life! I hurt all of my waking days unless I stay drugged up on Neurontin 3000 mg and Klonipin, which I'm not prescribed enough of, I can not take any kind of pain pills or ox due to a stomach ulcer I have. What a way to live life.
Gizmo, I take 600 mg 5 times a day and .5 mg Klonopin two times a day. All that helps manage the pain, but it is not enough. Many nights I cry of the pain, at that point I can smoke M and it takes the pain away instantly but only lasts for an hour or two. Most of the time my ATN feels like a bad ass toothache. BTW, I go to a neurologist today and I don't think I will tell about the M. That's too bad too, because I'm 50 and never smoked for all these years, so I'm not a pot head, but I know he will just think I'm another drug seeker if I do.
gizmo said:
I do not have a diagnosis of ATN but have many diagnoses from different docs from nueropathic pain to TMD. I have terible burning in my ttohand sometimes get burning in my palatte and gums which feels like fire in my mouth. Sounds like ATN to me. How much nueorontin are you on and how much klonopin? I have been on those with no relief. Was wondering if a higher dose would help me. If I knew that M would help me I would take it. It is not legal where I live and I would be afraid of getting something that was dangerous, but i would find a way to get some that was safe. If the lawmakers in this country had the pain you know they would legalize it! If you tell your nuero about the M can you get in trouble? Better check that out before you tell him. Good luck.Gizmo
me said:
I have ATN. And It helps the pain instantly. But not for long. I still have to take Neurontin and klonopin but usually less of the pills with marijuana. It's not legal here. I'll be going to a neurologrst soon. Should I tell him I use M for my pain or not? I don't want him to think I'm a drug seeker.
MM is not legal in my state for neurological pain. Like thehoward said, you have to be at death's door or have severe seizures. A huge dispensary just opened near me and they have a lot of information and it seems like it would be helpful for all of us. If they could just make it completely legal and treat it like any other drug it would really help so many of us. A few years back I had surgery for my deviated septum. I had a lot of pain that the opiates weren't controlling. My surgeon wanted to prescribe me cocaine. How is it that cocaine, a Schedule II drug, can be prescribed by pretty much any doctor when medically necessary (yes, I know this is rare and not done often, but my point is that it's legal) but MM is still not legal? I said no to the cocaine because the thought of it scared me. I'd be open to MM if it were completely legal. It would get rid of so many of my medications. One of my biggest issues is non-stop vomiting. I have 3 different medications for that alone. For TN I take 2. Pain:1. That's 6 prescriptions I could potentially do away with.
I've recently gotten a card from my doctor, I live in an MMJ-legal state. I can't tolerate THC, however, so I have been exploring the world of high CBD/ultra-low THC MMJ, to see if it would help. I have been able to locate, with much searching, a source with a 20:1 CBD to THC ratio, which is a pretty darn good ratio, and I have been talking to the owner of a really large dispensary who probably sees my as the kind of ideal patient that he wants to see helped by the first batches of ultra high CBD that he wants to bring in and market, since this is such cutting edge stuff. He tells me that the ratio will be 50:1 when the batch is completed, which I am very interested to try.
Ideally I would like to be able to use something with a bit more THC, because I do think that it helps, but I can't, so I will see how this goes - I have TN-2, BTW.
For those who don't know what CBD is, my very basic understanding is that there are two base components, THC and CBD, THC being the psychoactive component, and CBD being very interesting in that it's been discovered that we all have cannabinoid receptors, much in the same way that we have opioid receptors - so scientists have been doing some major research into the effects of CBDs. They have discovered that CBDs have, among other things, some very strong anti-epileptic properties, hence their use on children with Dravet Syndrome and other seizure disorders. It has also been found to work on certain types of pain. So, after I saw the special "Weed", by Sanjay Gupta, I saw that someone had actually been able to get to the ratio that I had been looking for all these years, so I got a card again and searched it out (it wasn't easy - growers seem hell bent on sending THC levels into the stratosphere). I figured that since I take so many anti-seizure meds, and it works on pain, that maybe this could help.
The one HUGE caveat...I was told by my pain management doctor that if I chose to continue with the MMJ, that I would have to discontinue all opioids. The fear being that the sedating effects of the marijuana would work in conjunction with the opioids. But it's the THC that is sedating - I would expect that the doctors would want to start eliminating the anti-seizure meds - that is what the doctors are doing in the cases of the children that are being treated for the seizure disorders, although I understand that it is a different condition with different parameters, but perhaps you understand what I mean. In any case, if you are part of a large managed care system in a chronic pain program, you will be asked to make this choice, to cover their liability a$$es at the expense of your physical comfort.
On that bright note, sorry for the long windedness, but I hope that this is educational at least :o)
Lily
Try it anyway.
shepherdgirl said:
I so wish I could try it. although our state says it's legal, our sheriff who is a friend of ours, will not allow it saying under federal regulations it is against the law. I would try it in a minute if I thought it would help. I look forward to responses.
Well finally went to a neurologist today. I feel like it was a flop!
The dr acted like it prolly was not nerve damage from a tooth exstraction. All Drs try to cover each other’s ass! Well I KNOW that is what happened. And then his exam was all about type 1 TN…which is not what I have…the sharp stabbing pains that come and go…NO! Mine is type 2…constant dull aching tooth ach like pain. I heard that most drs even some Neuros don’t even know much about the type 2. I am so down right now.
Well did he change or add any medication or offer any decent advice about going forward that makes some sense?Aren't both types of TN treated in a similar fashion?Maybe it's time to look for a better Neuro if he's not someone you trust and respect..
me said:
Well finally went to a neurologist today. I feel like it was a flop!
The dr acted like it prolly was not nerve damage from a tooth exstraction. All Drs try to cover each other's ass! Well I KNOW that is what happened. And then his exam was all about type 1 TN...which is not what I have...the sharp stabbing pains that come and go...NO! Mine is type 2...constant dull aching tooth ach like pain. I heard that most drs even some Neuros don't even know much about the type 2. I am so down right now.
I know exactly how you feel. I saw 2 nueros, 2 oral/facial pain doctors, and they all said i don't have TN because I don't get lightening strikes. I told them you don't have to have lightening strikes and they ignored what I said. I learned about TN and ATN just from googling facial nueralgia. I can't believe that these doctors treat TN and don't know about ATN. M aybe they need to read this site to learn about it. Don't give up. I will keep trying to find a decent nuero who understands and treats ATN. You should too. Where do you live? I am in Boynton Beach, Florida. If you are anywhere near me we can let each other know which nuero not to go to. Gizmo
ell finally went to a neurologist today. I feel like it was a flop!
The dr acted like it prolly was not nerve damage from a tooth exstraction. All Drs try to cover each other's ass! Well I KNOW that is what happened. And then his exam was all about type 1 TN...which is not what I have...the sharp stabbing pains that come and go...NO! Mine is type 2...constant dull aching tooth ach like pain. I heard that most drs even some Neuros don't even know much about the type 2. I am so down right now.
I am in a state that does not currently have MM. There is a bill that may be passed in the near future. However, I have tried it and I have had a very positive response. I was aprehensive to try it, but my husband was determined for me to find something, anything that would work. It is much easier on my system then narcotics and I have found that it doesn't take much to help calm down the TN nerve.
I also found that when my muscles would "freeze" up and I couldn't move my face, talk or eat, smoking makes it possible to function.