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I am already on Tegretol. It is first line of defence here. 400 mg for the day I still have breakthrough pain . No nobody that I know in my family has ever had MS. I am waiting for a specialist and an MRI .

 

It'll calm down more than likely. I know there is a surgery they can do to sever the communication pathways and after that there is no more pain. I responded very well toTegretol. I took it for one month and I've never had that experience again...I kept a bottle at home just in case for years(I was terrified to experience it again). You There are a lot of conditions people don't realize are auto-immune disorders...Hashimotos, Excema, Asthma, etc. Often times Auto-immune issues are linked to others. The MRI is going to shed some light. The Neurologist is going to ask if you've had vision problems, weakness, eye pain, etc. He'll do a head to toe neurological assessment. It doesn't take long. Keep us posted!

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It'll calm down more than likely. I know there is a surgery they can do to sever the communication pathways and after that there is no more pain. I responded very well toTegretol. I took it for one month and I've never had that experience again...I kept a bottle at home just in case for years. There are a lot of conditions people don't realize are auto-immune disorders...Hashimotos, Excema, Asthma, etc. Oftten times Auto-immune issues are linked to others. Did you have an MRI?

 

I have Asthma. I'm waiting for an MRI because I'm waiting for a specialist still . I do have vascular issues anyway as I do have migraines . There is autoimmune problems in my family yes as far as asthma and arthritis but no MS. But we do have a lot of vascular issues as well . My mother has migraines, I have migraines and my son has migraines . I have hemiplegic and cluster migraines .'

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Im on tegretol as well, i first got carbamazepine and then later the more expensive brand of carbamazepine over here that is called tegretol.

The pharmacy over here tries to get you on a generic brand, didn't work.

Tegretol rocks!

Yet of course it wasn't enough anymore and now on max of tegretol and max of neurontin....

 

I've read as well it is linked to auto immune disease, which i do have as well, but of course my cause is the tumor.....

I've read as well the connection with MS.

but trigeminal neuralgia can be a disease on it's own as well with no connections.

Especially with middle aged women.....sorry vic...lol

Some are lucky to only have one outbreak, and then never again and in others it can be as bad as no more medication helps and even the surgery doesn't help.

 

The surgery is not the absolute problem solving answer because in many cases after time the pain still does return and another surgery is necessary and another.....

the cutting off the facial nerve is also am option but then off course that brings along many other problems as well.

 

There is no one fix, one answer for TN, it isn't called the suicide disease for nothing.

 

I just hope you get that MRI soon! They can see the problem so clearly on the MRI if it's tn....

There is btw also typical tn and non typical tn.....there's a difference....

Edited by sara-pezzini
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Im on tegretol as well, i first got carbamazepine and then later the more expensive brand of carbamazepine over here that is called tegretol.

The pharmacy over here tries to get you on a generic brand, didn't work.

Tegretol rocks!

Yet of course it wasn't enough anymore and now on max of tegretol and max of neurontin....

 

I've read as well it is linked to auto immune disease, which i do have as well, but of course my cause is the tumor.....

I've read as well the connection with MS.

but trigeminal neuralgia can be a disease on it's own as well with no connections.

Especially with middle aged women.....sorry vic...lol

Some are lucky to only have one outbreak, and then never again and in others it can be as bad as no more medication helps and even the surgery doesn't help.

 

The surgery is not the absolute problem solving answer because in many cases after time the pain still does return and another surgery is necessary and another.....

the cutting off the facial nerve is also am option but then off course that brings along many other problems as well.

 

There is no one fix, one answer for TN, it isn't called the suicide disease for nothing.

 

I just hope you get that MRI soon! They can see the problem so clearly on the MRI if it's tn....

There is btw also typical yn and non typical tn.....there's a difference....

 

Yes ,I'm on the generic of the Tegretol, carbamazepine. And yeah I 'm middle-aged I'm going to be 50 this year . And my pain doesn't last for a few seconds or few minutes it last for hours and hours and hours before it breaks .And rather than cutting the nerve I would prefer the microvascular decompression . Because the phantom pain from cutting the nerve has actually even worse problems than the trimengial neuralgia. To fix that apparently they have to put electrodes into your brain.

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Sara Pezzini:

 

There is a brain surgery which is minimally invasive where they disrupt communication with the nerve. They drill a small hole behind the ear on the skull....it's suppossed to prevent that nerve from communicating pain. And yes! I know why people would commit suicide over this. The pain makes you delirious! I didn't scream when I had natural childbirth but I screamed with TN....I'm so glad Tegretol worked for me.

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For me cutting the nerve would also be a very last resort, first try everything else.

The janetta surgery is what my neurosurgeon wants to do if this radiation has no result....

Which is where they separate the vessel from nerve....

 

I'm really curious what your neurologist will say and hope you can get to one soon! There is always a bit of waiting time sadly....

But i think with your break through pain you will need a higher dose, i think the pain should be completely gone, that's what my neurologist always wants, not wait til the pain gets too much but get in front of the pain not follow it...

I hope you will get more info soon because now everything is still so insecure and i think that creates more stress

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For me cutting the nerve would also be a very last resort, first try everything else.

The janetta surgery is what my neurosurgeon wants to do if this radiation has no result....

Which is where they separate the vessel from nerve....

 

I'm really curious what your neurologist will say and hope you can get to one soon! There is always a bit of waiting time sadly....

But i think with your break through pain you will need a higher dose, i think the pain should be completely gone, that's what my neurologist always wants, not wait til the pain gets too much but get in front of the pain not follow it...

I hope you will get more info soon because now everything is still so insecure and i think that creates more stress

 

I am able to control the breakthrough pain with naproxen luckily but there's only so much you can take of that before rips your stomach apart . I have found a small nap in the day also relieves some of the brain fog . But I also have a sinus infection which could have aggravated it all the more . Now I am on an antibiotic for that .

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Gigiselle,

 

Yes i know, that is the sweet procedure that you're talking about, usually they try the janetta first, but even the sweet procedure isn't guaranteed to work.

I've read many stories of patients who had it done a few times and always the pain came back.

 

None of the options are guaranteed to work and all of them have side effects and sometimes it's weighing of the bad versus the not so bad hopefully....

 

My neurosurgeon informed me very well and was also realistic that there are no guarantees and it's very hard to treat permanently....

 

For me it's hoping the tumor shrinks but even then it's not said that the facial nerve will be in normal position again or that the pain will ever go away.

 

It just sucks! You're lucky to only have had it for one period of time and never have it come back!

 

But vic, your cluster migraines, have you also ever gotten carbamazepine for that? A friend of mine has then and is now on carbamazepine for it....not sure if it works yet though

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I am able to control the breakthrough pain with naproxen luckily but there's only so much you can take of that before rips your stomach apart . I have found a small nap in the day also relieves some of the brain fog . But I also have a sinus infection which could have aggravated it all the more . Now I am on an antibiotic for that .

Oh yes, in the beginning i always took a small nap or rather just feel asleep whenever i sat down haha, but after a while you don't need those anymore.

In the beginning i slept for 10 hours straight at night, now is back to 8 or sometimes 9

So the body does get used to it.

They will also check your bloodwork twice a year to see if the liver can handle the drug.....

 

It seems you are getting everything at once! Sheesh!

hope the sinus infection clears soon and then you'll be able to see better what works and doesn't....

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Gigiselle,

 

Yes i know, that is the sweet procedure that you're talking about, usually they try the janetta first, but even the sweet procedure isn't guaranteed to work.

I've read many stories of patients who had it done a few times and always the pain came back.

 

None of the options are guaranteed to work and all of them have side effects and sometimes it's weighing of the bad versus the not so bad hopefully....

 

My neurosurgeon informed me very well and was also realistic that there are no guarantees and it's very hard to treat permanently....

 

For me it's hoping the tumor shrinks but even then it's not said that the facial nerve will be in normal position again or that the pain will ever go away.

 

It just sucks! You're lucky to only have had it for one period of time and never have it come back!

 

But vic, your cluster migraines, have you also ever gotten carbamazepine for that? A friend of mine has then and is now on carbamazepine for it....not sure if it works yet though

 

 

I never got that far...I was under the impression that pain originates in the brain and when the nerve is severed at the root further communication is interrupted permanently....but--Mine was alleviated with Tegretol...thank goodness! If you don't mind me asking what kind of tumor do you have?

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Yes it's a very complicated disease and one i wish i didn't know anything about!

 

My tumor is an acoustic neuroma...a benign tumor in the inner ear, pressing against the facial nerve (i do have a thread about this myself, let's keep this one about TN)

 

Yes you were lucky, for me tegretol works really well but i need more and more

And even though for me it's a symptom of a tumor this is common in TN patients.

So you're a lucky exception lol

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Yes it's a very complicated disease and one i wish i didn't know anything about!

 

My tumor is an acoustic neuroma...a benign tumor in the inner ear, pressing against the facial nerve (i do have a thread about this myself, let's keep this one about TN)

 

Yes you were lucky, for me tegretol works really well but i need more and more

And even though for me it's a symptom of a tumor this is common in TN patients.

So you're a lucky exception lol

 

Wouldn't the excision of the AN relieve the pressure on the trigeminal nerve?

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Maybe you slept on that side? Or do you grind teeth? Also makes it worse.

 

And are you on the bc pill?

It may not work due to the carbamazepine! Be ware!

 

I do grind my teeth, yes. I think because I went to the grocery store and church and cleaning and stuff.

No , no birth control . I am post menopausal .

 

Tonight is my first night back at work. So we will see how that goes. I have been pretty pain-free today.

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