trigeminal neuralgia?

[Seraphim]

I had a completely pain free day Friday. A little pain yesterday. Completely pain-free day today .

[Seraphim]

I guess I would say I've been almost completely pain-free for five days. woo! Maybe the specialist is right and this thing will go into remission.

[sara-pezzini]

Great to hear! Maybe it's going in remission but it's also the carbamazepine that's working. It feels as if there is zero pain but it may be surpressed, so don't go off them to soon!

But it's really wonderful if it is gone with this dosage and no more is needed!

It's also working because your body doesn't know the carbamazepine yet, the longer you're on it the more you need, and the less it works.

So I'd say stay on it for a while and then slowly get off them.

And then hopefully it's gone again!

[Seraphim]

The specialist wants me to stay on until September. My other episodes seemed to be about 4 months long and disappeared. Then I had 12 months in between episodes and then a six-year remission between episodes. So he's hoping in four months this one will be gone.

[sara-pezzini]

I think it may work out that way again! Another 3 more months of meds and i think it will be a little scary then to come off them.

I know i will be terrified when we're going to lower the dosage.

But i think a month in now and the pain doesn't get worse that's a good sign

And then let's hope next pause will be 12 years or so! At least you can put the surgery option and all that out of your mind for now! That should make you feel more at ease!

[gigiselle]

Victoria 66:

I'm sorry you're going through this. ((((Tight Hugs))))

I had this happen and the only thing that helped was Tegretol...forget the Dilaidid/Hydromorphone. I lost about 10 pounds in two weeks. Before seeing a neurologist my symptoms got worse. I was even afraid to brush my teeth. I saw a dentist (no problem there) and a GP prior to the neurologist. I was afraid I had Multiple Sclerosis as I have another auto-immune condition but an MRI showed no lesions. The condition disappeared as quickly as began(after initiating Tegretol).

[sara-pezzini]

Trust me you were very lucky!

It doesn't work that way for everyone, most of the TN stories i read people need more and more tegretol until they're at the maximum and then they get another medicine added or they have to stop the tegretol and try something else, because the fact is that the body gets used to the tegretol and after a while it simply doesn't work anymore!

Obviously for me the cause of the TN is a tumor but i am now a year on tegretol and am at the max of it and at the max of gabapentin as well, and i have since that year gained 20 pounds because tegretol usually has that effect, which really sucks!

And now both those meds don't help as i am in pain now as well.

But of course my cause is different, but this is what you mostly see about people with this disease.

So you were really really lucky and it's not a fact that tegretol is the only thing that helps.

Different things work for different people and it's often a long way together with the neurologist to find out what works for every individual!

[Seraphim]

Victoria 66:

I'm sorry you're going through this. ((((Tight Hugs))))

I had this happen and the only thing that helped was Tegretol...forget the Dilaidid/Hydromorphone. I lost about 10 pounds in two weeks. Before seeing a neurologist my symptoms got worse. I was even afraid to brush my teeth. I saw a dentist (no problem there) and a GP prior to the neurologist. I was afraid I had Multiple Sclerosis as I have another auto-immune condition but an MRI showed no lesions. The condition disappeared as quickly as began(after initiating Tegretol).

 

I guess I am taking the generic of of Tegretol. Hydromorhone I have been told not to take anymore they gave me that and one pill made me vomit for seven hours straight. I am allergic to that.

 

After five pain-free days the last two days I've had a lot of breakthrough pain. But the other day I was stupid enough to eat some crackers.

 

It does sound like you are in remission state though which my specialist does hope for me as well.

[Seraphim]

Trust me you were very lucky!

It doesn't work that way for everyone, most of the TN stories i read people need more and more tegretol until they're at the maximum and then they get another medicine added or they have to stop the tegretol and try something else, because the fact is that the body gets used to the tegretol and after a while it simply doesn't work anymore!

Obviously for me the cause of the TN is a tumor but i am now a year on tegretol and am at the max of it and at the max of gabapentin as well, and i have since that year gained 20 pounds because tegretol usually has that effect, which really sucks!

And now both those meds don't help as i am in pain now as well.

But of course my cause is different, but this is what you mostly see about people with this disease.

So you were really really lucky and it's not a fact that tegretol is the only thing that helps.

Different things work for different people and it's often a long way together with the neurologist to find out what works for every individual!

 

Yeah it is pretty individual I had an episode in 2009 and 2010 and then this year. But it never goes into complete remission it always comes back.

[sara-pezzini]

I guess I am taking the generic of of Tegretol. Hydromorhone I have been told not to take anymore they gave me that and one pill made me vomit for seven hours straight. I am allergic to that.

 

After five pain-free days the last two days I've had a lot of breakthrough pain. But the other day I was stupid enough to eat some crackers.

 

It does sound like you are in remission state though which my specialist does hope for me as well.

 

Aww no not you too! So sorry! (((Hugs)))

[Seraphim]

Still having breath through pain.

[IAmFCA]

Still having breath through pain.

 

Ugh. So so so sorry!

[Seraphim]

Ugh. So so so sorry!

 

Yeah yesterday I finally caved and took some anti inflammatories it did help. I don't want to go up to the 600 mg of Tegretol.

[sara-pezzini]

But please note the step between 400 and 600 is nothing. Since you're body is already used to 400 you won't even notice it other than in the pain.

Also driving should be fine as well because essentially it is like going from 0 to 200 since it's been in your system long enough to get used to it.

It would be different if you went from 0 to 600 but now this step shouldn't be worried over so much.

You shouldn't be in pain, please think about it.....

If you really are scared for side effects than keep this up till Friday and then in the afternoon go up, you'll have the entire weekend to see what happens but i really think nothing will!

I had another 900mg of gabapentin added yesterday and i don't notice anything different other than the pain being gone and that is just such a relief!

It outweighs the bad really!

[Seraphim]

But please note the step between 400 and 600 is nothing. Since you're body is already used to 400 you won't even notice it other than in the pain.

Also driving should be fine as well because essentially it is like going from 0 to 200 since it's been in your system long enough to get used to it.

It would be different if you went from 0 to 600 but now this step shouldn't be worried over so much.

You shouldn't be in pain, please think about it.....

If you really are scared for side effects than keep this up till Friday and then in the afternoon go up, you'll have the entire weekend to see what happens but i really think nothing will!

I had another 900mg of gabapentin added yesterday and i don't notice anything different other than the pain being gone and that is just such a relief!

It outweighs the bad really!

 

I will think about it. I have to be able to drive my son to college. That is super important to me. Otherwise I can walk to work. Other things I can walk to or wait for others to take me. There is a grocery store in walking distance for me which is good. I can bring my son so he can carry stuff too.

[sara-pezzini]

As far as driving goes, they say you can't for a while, my dosage even a year, but then i drive a scooter that goes 30km ph and i asked the neurologist and he didn't know, he said just try.

Well since it goes slow it is fine, i have to say i don't notice anything when I'm on it, even with my blood full of meds. I just have to be careful and pay attention.

That's it, it's because it can be hard to concentrate but i found if you're careful and concentrate it is fine.

Don't know how busy traffic is and how far the school is? Those two play into it as well....

But that's why trying on Friday is the best idea, since the meds work so fast you'd know on Sunday morning if you don't feel well and you can leave the added 200mg again.

It's not a lot, it won't do much go up or down! You've been on them long enough now

[Seraphim]

As far as driving goes, they say you can't for a while, my dosage even a year, but then i drive a scooter that goes 30km ph and i asked the neurologist and he didn't know, he said just try.

Well since it goes slow it is fine, i have to say i don't notice anything when I'm on it, even with my blood full of meds. I just have to be careful and pay attention.

That's it, it's because it can be hard to concentrate but i found if you're careful and concentrate it is fine.

Don't know how busy traffic is and how far the school is? Those two play into it as well....

But that's why trying on Friday is the best idea, since the meds work so fast you'd know on Sunday morning if you don't feel well and you can leave the added 200mg again.

It's not a lot, it won't do much go up or down! You've been on them long enough now

I can drive now. The only side effect now is I can't remember some words when speaking but hey menopause did that to me too! Lol. It is about 30 km to the college and the speed limit on the road is 100km. I am fine with it. But he isn't back at school until Sept.

[sara-pezzini]

When does his school end for summer? If you can wait it out that'll be the best option.

100km ph 30 km away is a bit more risky than what i have to drive

 

Oh yeah the not rremembering names and words! So annoying, sometimes i have to look up online what i mean, but sometimes there's just the image in my head, how do you freaking Google that? Or covey to someone?

Neurologist said that's definitely the meds. I had it before but not as bad as now, two weeks ago i even forgot to go to fysio when i have been coming there for 10 years now, never happened till now.and when she called me it still didn't register because i thought she was canceling on me haha!

[sara-pezzini]

I also forget to take my meds so i have to send myself reminders for everything.

However now with the pain again i don't forget them but when there is no pain it's easy to forget.

So reminders for everything and cheats and tricks for everyday life.

It takes getting used to....and makes you feel double so old!

I work for an 84 year old woman and i was telling her about these things and she said, oh but that's very normal, same things happen to me, i said yes but you are 84 and I'm 43! Haha

[Seraphim]

When does his school end for summer? If you can wait it out that'll be the best option.

100km ph 30 km away is a bit more risky than what i have to drive

 

Oh yeah the not rremembering names and words! So annoying, sometimes i have to look up online what i mean, but sometimes there's just the image in my head, how do you freaking Google that? Or covey to someone?

Neurologist said that's definitely the meds. I had it before but not as bad as now, two weeks ago i even forgot to go to fysio when i have been coming there for 10 years now, never happened till now.and when she called me it still didn't register because i thought she was canceling on me haha!

 

He was done for the summer mid April. But I have to be able to take him for a few more years.

 

Oh yeah crazy! I forgot a shift at work!

[Seraphim]

I also forget to take my meds so i have to send myself reminders for everything.

However now with the pain again i don't forget them but when there is no pain it's easy to forget.

So reminders for everything and cheats and tricks for everyday life.

It takes getting used to....and makes you feel double so old!

I work for an 84 year old woman and i was telling her about these things and she said, oh but that's very normal, same things happen to me, i said yes but you are 84 and I'm 43! Haha

Yeah I have reminders for my iPhone on everything! And this is definitely not average for a 50 yeah old either!

[sara-pezzini]

Oh my god woman then go to 600!!!!! Your body will be used to it long before September!

[sara-pezzini]

Yeah I have reminders for my iPhone on everything! And this is definitely not average for a 50 yeah old either!

Ain't it nice that this technology exists? Imagine otherwise?

[Seraphim]

Oh my god woman then go to 600!!!!! Your body will be used to it long before September!

 

I probably should.

[Seraphim]

Ain't it nice that this technology exists? Imagine otherwise?

 

Hahaha I have a note book too.