[dllfo]

Earache, upper/lower teeth on left side hurt. Anyone else??? Tegratol almost working, 600 mg today

[Burntmarshmallow]

I think Lastnerve has ATN . I will have to double check to be positive.
Good to know that meds are helping a bit for the pain . tho the phrase " almost working " isnt the best news.
Keeping you in my thoughts . I am sure others will reply soon.

PEACE
BMW

p.s. edit to add I wrong It is emsacco that has ATN

[Mylastnerve]

Originally Posted by Burntmarshmallow

I think Lastnerve has ATN . I will have to double check to be positive.
Good to know that meds are helping a bit for the pain . tho the phrase " almost working " isnt the best news.
Keeping you in my thoughts . I am sure others will reply soon.

PEACE
BMW

p.s. edit to add I wrong It is emsacco that has ATN

No, you're right, BMW, I do have ATN - I take a number of drugs to try to control mine, and I am getting a nerve stimulator soon. How can I help?
Lily

[dllfo]

Hi Lily, Dave here. My ATN seems to come and go...somewhat. It came back a few weeks ago and has stayed. 1000mg a day of Carbamazeine does not completely stop it. ATN pain can push through the Carb. on some days.

I read that Opiates have some success, but I cannot use them anymore due to life threatening Respiratory issues. Sooooooo I am not sure what to try next. You have something for your nerves? A stimulator? Dare I ask what it does for you/us??

Yesterday, I had something VERY unusual happen. On the upper left side, between the 3rd tooth in and the wall of my mouth was .... something like a polyp? As big around as my little finger and it felt like it was about a half inch long. Just hanging down. I used my tongue to push on it. It felt like liquid inside. After my tongue pushed it around, off and on, for about an hour, I noticed it was changing shape. It was a similar size, but horizontal to the roof of my mouth. This morning it is almost gone. It was never painful to touch or "push on".

Anyone have ANYTHING like that?

[emsacco]

Originally Posted by dllfo

Earache, upper/lower teeth on left side hurt. Anyone else??? Tegratol almost working, 600 mg today

I have atypical face pain that is primarily on the lower left side of my face. I was treated with Gabapentin and then changed to Lyrica. I also take Cymbalta and until my SCS was implanted I also took Topamax. I was given various blocks and also had a radiofrequency ablation to two nerves in my face during the two years of pain prior to my implant.

I had my spinal cord stimulator implanted in June. My doctor felt that he could get coverage through my spine to the lower part of my face. He was right!! I have reduced my medications to night time only.

Are you seeing a pain management doctor? They seem the best to help manage this pain. Let me know how I can help?

[Mylastnerve]

Originally Posted by dllfo

Hi Lily, Dave here. My ATN seems to come and go...somewhat. It came back a few weeks ago and has stayed. 1000mg a day of Carbamazeine does not completely stop it. ATN pain can push through the Carb. on some days.

I read that Opiates have some success, but I cannot use them anymore due to life threatening Respiratory issues. Sooooooo I am not sure what to try next. You have something for your nerves? A stimulator? Dare I ask what it does for you/us??

Yesterday, I had something VERY unusual happen. On the upper left side, between the 3rd tooth in and the wall of my mouth was .... something like a polyp? As big around as my little finger and it felt like it was about a half inch long. Just hanging down. I used my tongue to push on it. It felt like liquid inside. After my tongue pushed it around, off and on, for about an hour, I noticed it was changing shape. It was a similar size, but horizontal to the roof of my mouth. This morning it is almost gone. It was never painful to touch or "push on".

Anyone have ANYTHING like that?

Hi Dave,
Yes, ATN can be really difficult to deal with - especially the part where the pain just stays and stays. Mine is V1/V2 (forehead and cheek), but otherwise similar. I haven't had anything like you had in the mouth, that kinda sounds like a blister of some sort.
I take trileptal, cousin to tegretol, and also take gabapentin and nortriptyline to try to keep it at bay. Also opiates - but mine breaks through nonetheless, so I don't know what help I can offer. I went in to talk with my neurosurgoen again to talk about options (it's a bad sign when you know all of the people in the office!), and he offered to put in a neurostimulator. Officially it's called a Peripheral Nerve Stimulator, and the leads are strung under the skin in the face. It is really a Spinal Cord Stimulator, used "off label", to interrupt the nerve signals in the face. It will be put in on the 1st of September. It will be the first one that my NS has done. I am one of many that BMW has lured to this site to discuss this option, bless her heart. This is a relatively new option for people with TN/ATN/AD (and for their NS's), one that they can possibly try before they go for the really big surgeries, like Motor Cortex Stimulation and Deep Brain Stimulation. So I will be giving it a try. I am optimistic that it can help me, it does work for certain pain that I get, and we are going to try and tweak it a bit more once it's in to see what else we can make it do. I had a trial with it a few weeks ago. They do that before they put it in permanently.
I hope that this helps explain these things, and who knows, maybe it will be one of the things that eventually gets tried on you. For me, ATN has been really hard to get control over, which hopefully is the exception rather than the norm. Do you have a neurosurgeon yet? Hopefully you won't ever need to get that far!
Lily

[Bassetcase]

Hi Dllfo,

Yes, I also have the ATN diagnosis. Severe pain in the right ear and surrounding area only (so far). I sometimes go for 3 months without an episode, then may have one 3 days in a row lasting 4-8 hours at a time. Carbatrol (extended release tegretol) works better for me than the regular tegretol. I only take the meds when I am experiencing an episode. My heat bag placed on my ear works better than the meds.

If you have time to go back and read some of my posts, you may find some more similarities.

Good Luck,
Rhonda

[EE03]

Originally Posted by dllfo

Earache, upper/lower teeth on left side hurt. Anyone else??? Tegratol almost working, 600 mg today

I have ATN along with classic TN. Early on my episodes would come and stick around for a month, then 2, 3, 4, and now its pretty much constant. The symptoms wax & wane in severity, but it always affects one side of the face more than the other. The lesser effected side still goes on in spurts, and then quiets down. I had great pain control using Trileptal and Effexor, but eventually had to wean off of them due to side effects. All other meds I've used for it have only controlled the pain to a point, resulting in breakthrough pain. Atypical is hard to deal with. Have you got a copy of "Striking Back?" If not, its available through the Trigeminal Neuralgia Asso. and is a good source of info regarding medications for the condition. It may also be available through Amazon, at least I think I remember others mentioning it.

As for the blister thing you describe, I've never experienced anything like that. I have had my face swell due to TN though. My doctor could visibly see it and didn't know what to make of it at the time. This is a strange condition. Take care

[alohajudy]

Originally Posted by EE03

I have ATN along with classic TN. Early on my episodes would come and stick around for a month, then 2, 3, 4, and now its pretty much constant. The symptoms wax & wane in severity, but it always affects one side of the face more than the other. The lesser effected side still goes on in spurts, and then quiets down. I had great pain control using Trileptal and Effexor, but eventually had to wean off of them due to side effects. All other meds I've used for it have only controlled the pain to a point, resulting in breakthrough pain. Atypical is hard to deal with. Have you got a copy of "Striking Back?" If not, its available through the Trigeminal Neuralgia Asso. and is a good source of info regarding medications for the condition. It may also be available through Amazon, at least I think I remember others mentioning it.

As for the blister thing you describe, I've never experienced anything like that. I have had my face swell due to TN though. My doctor could visibly see it and didn't know what to make of it at the time. This is a strange condition. Take care

I am new to this forum. I've been diagnosed with ATN. I've had facial pain (deep ear, cheek and more recently upper jaw) for a year, it's constant, aching, and has increased in severity of pain. There's a slight burny aspect to it. I am in Hawaii, and need to find out who is good to treat this? I'm willing to go the mainland for treatment. Also, I never heard of the Nerve stimulation implant...I need recommendations..

[Burntmarshmallow]

There is a stickie up top that tells about neuro stim/PNS
here is the link...

http://neurotalk.psychcentral.com/thread124048.html
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this is on page 3 how to find a doc that dose this type of surgery...

We wanted to add some links in hopes this may help others find a Doctor in this area of surgery . Not sure if there is any top doctor that deals with just PNS OR Face Pain Stimulation only. I think most also do SCS and Neuro Stims for backs neck and other areas. It would be wise to ask this when contacting your pain management specialist , or Doctor. At least if they have knowledge of T.N , Neuro Stim for face pain etc....

http://www.poweroveryourpain.com/sb/pain_specialist

http://www.mymedpages.com/pf/search.do
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Neuro stim/PNS is a last option after meds and surgeries have not worked, yes you would need a recommendation/referal. PAIN Doc or neuro can do this if it is an option for you. This IS NOT approved by the gov yet as treatment .you must go threw interviews/tests before being approved or allowed to have a trial and after the trial you must again wait for approval to have the final implant. read threw the thread I know it has turned into a long read but I think it has good info.
We are glad you found us alohajudy
this place has many great understanding people that help, share info , support and listen. I hope you have a wonderful weekend and you find some way to better control your ATN pain. remember we are here for you .
PEACE
BMW