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Old 08-04-2012, 07:27 AM #1
Dansend Dansend is offline
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Default Strange symptoms with ATN

All of this started more than a year ago with a severe burning in the left corner of my mouth where the jaw hinges. I went to my dentist my general practitioner oral surgeon and they'll found nothing. the burning progressed what I perceived as a swelling and now I have sensations of tingling air movement through my lips and lower jaw and teeth along with the constant burning. The neurologist put me on Neurontin 300 mg three times a day all of the symptoms have become less severe but they continue throughout the day. The burning sensation shoots up my left cheek and across my lower lip and jaw and is accompanied with that weird strange sensation of airflow. This is nonstop all day long and it goes away when I sleep. With everything I am read, I have found no one else with these symptoms with ATN. Has anyone else experienced the sensations other than the burning??
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Old 08-04-2012, 02:15 PM #2
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Though your symptoms are a bit more severe than mine, I can relate. I have MS and assume (no Dr has confirmed my self-dx) that it has caused damage to the trigeminal nerves and thus causes sx similar to TN. It seems to me the biggest difference is that my, and apparently your, pain can start in the morning and not relent until sleep. I often woke up with it again in the morning.

The only thing that has brought me any relief is Lyrica. I take one tabl twice a day. Have you tried that? If I skip a dose or miss a couple of days, the pain returns. So it's better the longer I stay on them. It's been a couple years, and I'm nearly pain free.

I also after years of pain in the right, now have pain in my left too.

Hope you find some relief.
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Old 08-04-2012, 02:37 PM #3
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Thanks Catch, no, I have only tried the Neurontin. I am only a month into the diagnosis after 17 months of exploring through all the doctors. After the mri's, blood tests and panoramic xrays, the nerosurgeons came to the ATN conclusion. All of the sensations I am experiencing are really confusing and frustrating. Although I can seemingly experience the burning, frizzing, pulsating airlike sessions, none of the medical folks can see, feel or identify anything in any of the exams or tests. I got a lot of raised eyebrows for a long time.

Thanks for your response. Good luck and take care......
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Old 08-07-2012, 12:23 AM #4
BethO2L BethO2L is offline
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Welcome,, even though it's under these circumstances..

I have been a support group leader for many years and no one has ever described their TN the same way as I do mine...it may be that you really are having fairly "normal" ATN symptoms but how you perceive the pain and describe it may just be different than how others do.

I am not saying that your pain is any less or any less difficult to deal with,,I'm just saying that I would not loose too much sleep over your perception of it,,I would be more concerned about getting the pain manageable.

Most people with TN end up taking a "cocktail" of meds to control it,, especially as the disorder progresses.. I think that since you are taking Neurontin that adding Lyrica may be a good option to try and control the more Atypical pain....

Also,, are you taking Neurontin or are you taking the generic form??? I have found that with ALL my TN related meds,,I must take the real med not the generic...I find that the generic form of these meds do not work well for me...so keep that in mind.

I do take Neurontin and Lyrica together, which is unusual but for me they are very effective together,,so it may be something to consider. The best advise is to talk to your MD and see what he suggests...if you are tolerating the Neurontin well you can easily add to that dose. Raising it to 3600mg is well within "safe" ranges (I have been up to 6000mg but I don't suggest it!!!).
Another thing to consider is that Neurontin wears off more quickly that Tegretol...so perhaps breaking up your dose to 4 times a day instead of 3 might help.... It is very common for TN patients to change their med schedules to fit what works for them..so even if you stay at 2700mg daily if you break it up into smaller doses more frequently that could help give you better pain coverage...

Hope some of that helps...again,, I think your description of your TN is not that uncommon it's just not exactly how everyone else describes it...but then again no one describes it exactly the same way...

Good Luck and hope the pain becomes more manageable.....Beth
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Old 08-07-2012, 02:01 PM #5
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Quote:
Originally Posted by BethO2L View Post
Welcome,, even though it's under these circumstances..

I have been a support group leader for many years and no one has ever described their TN the same way as I do mine...it may be that you really are having fairly "normal" ATN symptoms but how you perceive the pain and describe it may just be different than how others do.

I am not saying that your pain is any less or any less difficult to deal with,,I'm just saying that I would not loose too much sleep over your perception of it,,I would be more concerned about getting the pain manageable.

Most people with TN end up taking a "cocktail" of meds to control it,, especially as the disorder progresses.. I think that since you are taking Neurontin that adding Lyrica may be a good option to try and control the more Atypical pain....

Also,, are you taking Neurontin or are you taking the generic form??? I have found that with ALL my TN related meds,,I must take the real med not the generic...I find that the generic form of these meds do not work well for me...so keep that in mind.

I do take Neurontin and Lyrica together, which is unusual but for me they are very effective together,,so it may be something to consider. The best advise is to talk to your MD and see what he suggests...if you are tolerating the Neurontin well you can easily add to that dose. Raising it to 3600mg is well within "safe" ranges (I have been up to 6000mg but I don't suggest it!!!).
Another thing to consider is that Neurontin wears off more quickly that Tegretol...so perhaps breaking up your dose to 4 times a day instead of 3 might help.... It is very common for TN patients to change their med schedules to fit what works for them..so even if you stay at 2700mg daily if you break it up into smaller doses more frequently that could help give you better pain coverage...

Hope some of that helps...again,, I think your description of your TN is not that uncommon it's just not exactly how everyone else describes it...but then again no one describes it exactly the same way...

Good Luck and hope the pain becomes more manageable.....Beth
Thanks Beth, the advice helps a lot. This has been very frustrating to this point but I am learning to cope. I am on the generic form of Neurontin and it has made a difference. I just don't think I am taking enough and I'll have that discussion with the Neurologist soon. It's just 300mgs 3 times a day.

I am managing the pain as it is at a tolerable level, it's now trying to also manage the associated sensations. They actually seem to be on a schedule moreso than me.

Again, thanks for your post.

Dan
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Old 08-08-2012, 02:04 AM #6
BethO2L BethO2L is offline
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I always assume that people are doing the basics when they post here but I wanted to cover some things that you should keep in mind.

Always make sure to be taking a good B complex vitamin,,invaluable for helping to rebuild the mylean sheath around nerves,,,,a good multi vitamin complex with high levels of selenium,, get lots of sleep even if that means getting some ambien from your MD, it's well worth it,,,avoid stressers,,,get rid of aspartame, MSG, caffeine and as much sugar as possible and if you are a smoker try going to an electronic cigarette they work well and many chronic pain sufferers (like me) are smokers.
And here is one that most people don't know,,get rid of all tooth whitening products,,they can over sensitize the teeth and create all kinds of additional pain....if you are concerned about white teeth use peroxide and baking soda,,it works well

The last one I highly suggest that no one ever does is learn to meditate,,even if it's as simple as learning to regulate your breathing,,it can make an enormous difference in managing pain,,I honestly could not have survived if I did not regularly meditate. It can be as simple as picking up a CD at Barnes & Noble and learning basic breathing control to something that really helps you relax and breath through pain,,I believe it's a must for TN patients.

Good luck,,let me know if I can help with anything and if you need to talk feel free to private message me and we can try and connect sometime,,,,
I hope some of this info helps reduce the pain,,even a little......Beth
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