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So I went to the hospital at 2:30 AM. They gave me a 30mg shot of Toradol. That only reduced it a bit. They sent me home. I took 2 Tylenol 1 and got in bed at 5:45. I woke up before 7:30 screaming in pain. My husband took me back to the hospital. This time it was another dr. He said he is sure I have Trigeminal Neuralgia and gave me another shot of Toradol 60mg. He gave me 200 mg of carbamazepine . I have to take 400 mg a day. It is an anti seizure medication that will relax the nerve. And he have me hydromorhone 2 mg for pain. They have me lined up to see a specialist.

 

Sorry I am not making much sense I am taking 2 medications which make you very very sleepy and confused.

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That's extremely painful, Vic. Is the affected area in your jaw, or higher up?

 

Take care, and I hope the meds help.

 

It is my lower jaw on my right side . The pain was so bad I wanted to bang my head on the floor until I was unconscious . I was absolutely bawling at the hospital which was really embarrassing because I mean I didn't bawl when I had a baby I didn't let out one tear.

 

Right now they have me on anti-seizure medication which will block the nerve pain . And for the breakthrough pain until I can see the specialist they have given me a very heavy narcotic .

 

I must say though I'm terrified to be this way for the rest of my life .

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Are they going to follow up and do more research?

They usually do an mri with tn to exclude things.

Like they did with me and found the cause was a tumor, but that's extremely rare.

If this is it there are options, you need to find someone specialized in tn

The gamma knife procedure that i had is one option

Cutting the nerve is another

Also a janetta surgery is the most common procedure that they typically like to try first

You now started on carbamazepine, that dosage can go way up, the side effects are no fun but it does help, or at least it should!

 

You know i feel for you, i know what is like and tn is hell!

Is not called the suicide disease for nothing!

I'm in the same boat with you with all the uncertainties, if i have this the rest of my life i don't want to

So I'm no real help here haha

You know there are also creams that tired of vampires suggested to me, i tried one and it did zero but that's always an avenue to explore.

 

You get creative, i couldn't eat at all, people don't realize that it's impossible to eat soup from a spoon since it requires a movement from your mouth that it can't, so i found that drinking porridge and soup from a glass works and helps you get something down.

I wouldn't eat for days at first but you can't keep that up

 

Get a good mouthwash, one a dentist can recommend, for when it's too painful to brush, in order to keep things clean there

Can you sleep? Take naps as much as you can, try to avoid stress cause that aggravates it

Put a shawl on when you go outside cause wind can cause an attack, with me it doesn't, but it happens a lot.

Some benefit from cold or rather warmth, it's a bit try and see

For me cold helps somewhat.

 

I assume talking is hell as well, so avoid doing that too much as well, just wait till the carbamazepine kicks in, you'll feel great then!

 

Don't panic too much just yet, there are a lot of meds they can try, and when you take them for a while you're body gets used to the side effects.

 

Oh yeah, try to sleep obviously on the other side of your face!

 

It's hell, i know it is, and it's scary and you can always talk to me, if you want to, in private or simply on here.

 

But first try to get all the facts, get a follow up, do an mri, if they don't plan to, insist please! And find a tn specialist, he can tell you much more.

 

Btw the banging with your head is familiar, i used to brush my teeth banging my hand against a wall so that i would feel that and not that pain in my mouth. Didn't help

But yes you want to bang your head until unconscious, i know

 

Hugs, take care!

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Oh Vic, super hugs. I'm so sorry you're going through this. My mother has it with her jaw on her right side thanks in part of a somewhat botched operation on one of her ears 20 years ago. Please yes, work with your doctor to find what works for you, what could be the cause etc. My mom went through a few different treatments before her neurologist finally found one, Nuerontin, that works and doesn't react with the other medicines she's taking. But I'm not sure what will work with you, so just time to explore the options.

 

I'm so sorry, it's not a thing I would wish on anyone. And yes, my mother has a high pain tolerance and the only time I've ever seen her cry is during one of these episodes.

 

All I can tell you is make sure you have a great neurologist in your corner who understands the issue. You're in my prayers, I hope you get this sorted out.

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Are they going to follow up and do more research?

They usually do an mri with tn to exclude things.

Like they did with me and found the cause was a tumor, but that's extremely rare.

If this is it there are options, you need to find someone specialized in tn

The gamma knife procedure that i had is one option

Cutting the nerve is another

Also a janetta surgery is the most common procedure that they typically like to try first

You now started on carbamazepine, that dosage can go way up, the side effects are no fun but it does help, or at least it should!

 

You know i feel for you, i know what is like and tn is hell!

Is not called the suicide disease for nothing!

I'm in the same boat with you with all the uncertainties, if i have this the rest of my life i don't want to

So I'm no real help here haha

You know there are also creams that tired of vampires suggested to me, i tried one and it did zero but that's always an avenue to explore.

 

You get creative, i couldn't eat at all, people don't realize that it's impossible to eat soup from a spoon since it requires a movement from your mouth that it can't, so i found that drinking porridge and soup from a glass works and helps you get something down.

I wouldn't eat for days at first but you can't keep that up

 

Get a good mouthwash, one a dentist can recommend, for when it's too painful to brush, in order to keep things clean there

Can you sleep? Take naps as much as you can, try to avoid stress cause that aggravates it

Put a shawl on when you go outside cause wind can cause an attack, with me it doesn't, but it happens a lot.

Some benefit from cold or rather warmth, it's a bit try and see

For me cold helps somewhat.

 

I assume talking is hell as well, so avoid doing that too much as well, just wait till the carbamazepine kicks in, you'll feel great then!

 

Don't panic too much just yet, there are a lot of meds they can try, and when you take them for a while you're body gets used to the side effects.

 

Oh yeah, try to sleep obviously on the other side of your face!

 

It's hell, i know it is, and it's scary and you can always talk to me, if you want to, in private or simply on here.

 

But first try to get all the facts, get a follow up, do an mri, if they don't plan to, insist please! And find a tn specialist, he can tell you much more.

 

Btw the banging with your head is familiar, i used to brush my teeth banging my hand against a wall so that i would feel that and not that pain in my mouth. Didn't help

But yes you want to bang your head until unconscious, i know

 

Hugs, take care!

 

I am waiting for the specialist to call me, today or tomorrow. The second ER felt there was no need to make me suffer until I saw the specialist and just started me on the meds.

 

Thanks for the good tips.

 

I thought it was my teeth too but I do take good care of them and see the dentist regularly. So I doubt it is that. The pain is entirely too much for that . And it originates in the back of my skull and around the face . They say it usually starts from a misplaced blood vessel which presses on the nerve and eventually wears out the protective coating on the nerve and damages it. And it usually happens in middle age.

 

I just took my first carbamazepine for today when I woke up in hopes I can eat today. Today is my second day of the medication. I got three mouthfuls of my dinner down last night which made me bawl in agony . But you can't not eat. And they tell you not to take these pills without food. L ol what? Everything that I'm going to drink I use a straw with and get it in the far left side of my mouth.

 

A hot bath seems to help. I rest my face in the super hot water.

 

I can handle the 400 mg without the hydromorhone . I could probably handle an increase too but no narcotics. I just want a life where I can have fun and work and do the things I do. I can't not work.

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Are they going to follow up and do more research?

They usually do an mri with tn to exclude things.

Like they did with me and found the cause was a tumor, but that's extremely rare.

If this is it there are options, you need to find someone specialized in tn

The gamma knife procedure that i had is one option

Cutting the nerve is another

Also a janetta surgery is the most common procedure that they typically like to try first

You now started on carbamazepine, that dosage can go way up, the side effects are no fun but it does help, or at least it should!

 

You know i feel for you, i know what is like and tn is hell!

Is not called the suicide disease for nothing!

I'm in the same boat with you with all the uncertainties, if i have this the rest of my life i don't want to

So I'm no real help here haha

You know there are also creams that tired of vampires suggested to me, i tried one and it did zero but that's always an avenue to explore.

 

You get creative, i couldn't eat at all, people don't realize that it's impossible to eat soup from a spoon since it requires a movement from your mouth that it can't, so i found that drinking porridge and soup from a glass works and helps you get something down.

I wouldn't eat for days at first but you can't keep that up

 

Get a good mouthwash, one a dentist can recommend, for when it's too painful to brush, in order to keep things clean there

Can you sleep? Take naps as much as you can, try to avoid stress cause that aggravates it

Put a shawl on when you go outside cause wind can cause an attack, with me it doesn't, but it happens a lot.

Some benefit from cold or rather warmth, it's a bit try and see

For me cold helps somewhat.

 

I assume talking is hell as well, so avoid doing that too much as well, just wait till the carbamazepine kicks in, you'll feel great then!

 

Don't panic too much just yet, there are a lot of meds they can try, and when you take them for a while you're body gets used to the side effects.

 

Oh yeah, try to sleep obviously on the other side of your face!

 

It's hell, i know it is, and it's scary and you can always talk to me, if you want to, in private or simply on here.

 

But first try to get all the facts, get a follow up, do an mri, if they don't plan to, insist please! And find a tn specialist, he can tell you much more.

 

Btw the banging with your head is familiar, i used to brush my teeth banging my hand against a wall so that i would feel that and not that pain in my mouth. Didn't help

But yes you want to bang your head until unconscious, i know

 

Hugs, take care!

You are right yesterday I was panicked . I cried most of the day. I had 2 really bad panic attacks. Both the dr and the pharmacist said I could take my Klonopin as well. The dose is so small and if it controls my anxiety take it. This morning is already 1 billion times better than yesterday morning.

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Oh Vic, super hugs. I'm so sorry you're going through this. My mother has it with her jaw on her right side thanks in part of a somewhat botched operation on one of her ears 20 years ago. Please yes, work with your doctor to find what works for you, what could be the cause etc. My mom went through a few different treatments before her neurologist finally found one, Nuerontin, that works and doesn't react with the other medicines she's taking. But I'm not sure what will work with you, so just time to explore the options.

 

I'm so sorry, it's not a thing I would wish on anyone. And yes, my mother has a high pain tolerance and the only time I've ever seen her cry is during one of these episodes.

 

All I can tell you is make sure you have a great neurologist in your corner who understands the issue. You're in my prayers, I hope you get this sorted out.

Yes, I hope I can find a great neurologist a might have to go to another city to do that . Right now I can't drive a tricycle let alone my car. Lol. Today my husband took the day off because my son needs help with something and I can't take him. I took this week off work.

 

I am sorry about your mom.

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(((HUGS))) Vic...I'm so sorry you're dealing with this. I know this must feel like a nightmare.

 

I really am interested to know why that came on suddenly (?) for you...what's the cause of it.

 

I hope the meds will relieve you...

.

 

Thanks TOV.

 

I am not sure yet. I guess I will know more when I see the specialist.

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I am waiting for the specialist to call me, today or tomorrow. The second ER felt there was no need to make me suffer until I saw the specialist and just started me on the meds.

 

Thanks for the good tips.

 

I thought it was my teeth too but I do take good care of them and see the dentist regularly. So I doubt it is that. The pain is entirely too much for that . And it originates in the back of my skull and around the face . They say it usually starts from a misplaced blood vessel which presses on the nerve and eventually wears out the protective coating on the nerve and damages it. And it usually happens in middle age.

 

I just took my first carbamazepine for today when I woke up in hopes I can eat today. Today is my second day of the medication. I got three mouthfuls of my dinner down last night which made me bawl in agony . But you can't not eat. And they tell you not to take these pills without food. L ol what? Everything that I'm going to drink I use a straw with and get it in the far left side of my mouth.

 

A hot bath seems to help. I rest my face in the super hot water.

 

I can handle the 400 mg without the hydromorhone . I could probably handle an increase too but no narcotics. I just want a life where I can have fun and work and do the things I do. I can't not work.

 

Yup it is usually the blood vessel hitting the nerve and they can separate the two with surgery, the janetta surgery, or at least that's what it's called in Dutch lol

 

Also a good idea to educate yourself, there is a lot of info online and also forums where you can get tips.

 

Funny about the warmth, for me cold works somewhat and heat makes it worse.

 

They tell you to eat with the meds so they don't upset your stomach, by now i can take them without food, you get used to them.

But for now to get something in your system just drink soup or porridge, i know eating is such hell, before i knew what is was i just tried to continue eating little bits but i cried over my plate....

 

One little upside, you'll get the best sleep you ever had! Carbamazepine makes you very tired and you can even fall asleep during the day, but at night i sleep so tight! Nothing wakes me, don't even need to pee.

But that is about the only silver lining lol

 

The panic is also perfectly normal and understandable, i think you'll feel a range of emotions in the coming time....

 

The first year i had those pains without meds i still worked, i work cleaning offices, and it was very hard but especially hard if people talked to me and i tried to explain i was in pain, but the weird thing is that no one sees it on you, so they were like, just go to a dentist.

Now with the tumor at least everyone takes me very serious! People also read about tn, which is a good idea for your family and friends as well, created understanding.

 

I hope the meds kick in soon and I'm curious how that all goes!

For me the pain was simply gone from one minute to the next, very weird!

 

Btw i first read that as well after my diagnosis, it happens more in women at middle age and i thought, great, I'm middle aged at 42!

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Vic how are you?

I had a lot of intense vomiting yesterday but I think the carbamazepine is starting to work. I had my last morphine like pill at about 11:30 AM yesterday . But then I was vomiting for hours. I only have very dull pain pain off and on now. Last night I had 3 bites of steak and mashed potatoes and peas , yoghurt and apple sauce. After the vomiting I got a migraine. But over all I think I am doing somewhat better. I am eating now so I can take my first cabamazepine for the day. I get too nauseous if I can't eat.

 

However it seems like I've become a dimwit I can't remember anything.

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Yay for the pain getting less!

I already thought while reading that the vomiting was a result of the no eating and then taking morphine when not eating, and you mentioned that as well, hope that stomach settles soon.

 

And if your head is already dumbing down after one day of carbamazepine than you're in for a ride haha!

Sometimes it feels like my head just isn't screwed on right and all the info is leaking out cause i cannot remember anything and need little tricks to help me all day haha

It's annoying but the no pain is more important!

You'll also likely get sleepy during the day, especially when i first started them i would just doze off a few times a day.

 

Dizziness is also a very common one, and be sure to not drive since it affects that as well.

But all in all the no pain is the best!

I hope tonight you can have a proper meal again! It's so great when your mouth can move again!

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Just be very careful!

They warn you about that, i do ride on a moped and that doesn't go fast and if I'm careful it's okay but i just notice the traffic goes to fast and my mind has trouble keeping up.

 

Hopefully you can stay on this low dose and then your body adjust quicker, the dose I'm on i cannot and am not allowed, insurance wise to drive for a year!

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Just be very careful!

They warn you about that, i do ride on a moped and that doesn't go fast and if I'm careful it's okay but i just notice the traffic goes to fast and my mind has trouble keeping up.

 

Hopefully you can stay on this low dose and then your body adjust quicker, the dose I'm on i cannot and am not allowed, insurance wise to drive for a year!

Yes they did warn me initially not to drive and see how I adjust. They said after I adjust I will likely be able to drive.

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Now that I have some concept of reality I can't even explain how bad the pain was. When you have pain that bad you aren't even in reality anymore.

 

Yes indeed, you're outside reality, nothing matters anymore, you don't care about anything other then the pain to stop.

It's very depressing and debilitating.

Nothing is fun anymore and you can see no joy, no happiness, no colors.....

At one point i didn't want to wake up anymore....didn't care.

 

Yes your body will adjust pretty quickly with that dose, i think a week or two at the most.

Also obviously careful with alcohol and no grapefruit or grapefruit juice.

I have to think about that one, sometimes i like to mix a few juices and there's always grapefruit in it but now i can't.

 

And I'm luckily not a big alcohol drinker but every now and then i take a bit of wine

well haha that makes me extremely dizzy then cause the both enhance each other.

So i do that at home only

 

You learn to deal and accept, sort of....

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