trigeminal neuralgia?

[Seraphim]

I talked to the pharmacist at my pharmacy and he said to take another one at bedtime . So I have to move my bedtime more to 1030 .

[Seraphim]

I have to take one 7 AM, 1 PM ,6 PM, as close to 11 PM as possible.

[sara-pezzini]

Yes just what i thought, well hope that will help! Fingers crossed!

[Seraphim]

Yes just what i thought, well hope that will help! Fingers crossed!

 

Thank you!

 

I have no clue what comes after that.

[sara-pezzini]

Try not to worry about that, let's get rid of this pain first!

I know how scared you are, so am i but one day at a time!

Just take the extra pill today and see how tomorrow will be....you can go up to 1600 with this so you have some way too go, if necessary

[Seraphim]

It is very hard to take things one day at a time. It really is.

[sara-pezzini]

Oh trust me i know it is, for me it's also very hard, extremely hard to nor obsess about what will be and might be! I do that a lot although i shouldn't. But in those moments of extreme pain at least have an attempt at not thinking ahead.

I wish i knew better what to say because as you know i struggle with it as well so i also don't know what to say and do.

I am just angry a lot but try not to let that overtake me either but it's hard.....

It's all crap! Hard to see the joy in life when you're in that much pain.....

For me it's bedtime now so i hope with the extra pill it passes again!

[Seraphim]

I was crying to my mom last night and she told me to stop because it's tearing her heart out. She said there's exactly nothing I can do for you and hearing you cry and being far away from you tears my heart out. When you were born you were this perfect beautiful little baby and to watch over 50 years the things that have happened to you I could die of a heart attach. I have sympathy believe me I am your mom but this is killing me.

 

My husband stayed a bit back from going to work to make sure I woke up. I made him promise. He said see I knew you would wake up. You will be fine.

 

I woke up like a cotton head today but less pain.

[Seraphim]

This new dose is helping a lot. Phew . Not totally pain-free but this is manageable.

[sara-pezzini]

Yes! Thank god!

[Seraphim]

Yes! Thank god!

 

Oh my god yes! I have only been able to have liquids for 3 days now.

[Seraphim]

It's weird I can totally feel the nerve pulsating and pulsating but I don't feel the pain. Occasionally I feel pain but not too often. I looked up my threads from 2009 and 2010 both attacks started almost within two weeks of this one. So late April early May heading into the summer. Not a coincidence, right? I think not.

[Seraphim]

I'm really hoping for remission though.

[sara-pezzini]

I hope so as well!

But no that doesn't sound like a coincidence. It's summer right? Probably also has to do with it, and are there other common things? Stress situations?

[Seraphim]

Yes, they did involve more stress than normal. This time not so much.

 

Sara have you ever gotten a swollen gum from TN? My gum is swollen but there's no pain in the tooth at all and the gum is not red. I was able to floss without pain. It is weird. I have been gargling with hot salt water though. If it doesn't go in a day or so I will contact my dentist. But that nerve was just pulsing pulsing pulsing pulsing for days. The Trigeminal nerve I mean. It was relentless.

[Seraphim]

Much much less pain now. I don't want to say too much and jinx it.

[sara-pezzini]

Yes i certainly have gotten swollen gums as well! Not every time though but it was the reason i thought it was a tooth ache at first.

It's weird!

Also not everything triggers pain in the teeth, i could for instance not eat or yawn or talk or brush but the dentist could do a thorough exam without pain! That was weird as well....oh it's such a strange pain/disease!

[sara-pezzini]

Much much less pain now. I don't want to say too much and jinx it.

haha yes that sounds familiar! I keep saying that as well and then when the pain is back it's one jinx too many haha as if!

[Seraphim]

Yes i certainly have gotten swollen gums as well! Not every time though but it was the reason i thought it was a tooth ache at first.

It's weird!

Also not everything triggers pain in the teeth, i could for instance not eat or yawn or talk or brush but the dentist could do a thorough exam without pain! That was weird as well....oh it's such a strange pain/disease!

 

Every attack I feel in my teeth and gums and under the jaw line and into my chin. This time the pain in the gums was ferocious . Now no pain whatsoever in the teeth. I even flossed but I have a big swelling where the worse pain was.

[sara-pezzini]

Yes it such a weird pain that even doctors don't know everything about.

I too discover the weirdest things sometimes! Upper jaw pain then if i put my finger on my upper lip i sneeze and it tickles at the top side of my head, where the nerve knot is haha

Pain in lower jaw, put finger on it and it either shoots in my ear or under my chin haha so weird how all of it is connected!

 

But even when the neurologist told me last year that yes this was TN, i still doubted it because when the worst pain is gone it really is so similar to just a tooth ache that i just wondered if it wasn't that and i made a fuss about nothing.....til the mri results came in of course.....

[Seraphim]

Yeah for now mine is just the third branch, the mandibular branch . But sometimes the pain is so bad I go deaf in that ear. No pain I can hear fine.

[sara-pezzini]

Mine also started with just the third branch but it is still bizarre how the same disease and the same branch can be so similar but also so different at the same time!

Plus the attacks are not the same each time either.

When mine would start, they started with a light pain and it was hard to recognize, after a few days the pain took over but it started almost like a slight muscle ache....

[Seraphim]

She did do the partial root canal today. She said if the abscess clears up by next week then she can complete the root canal. Said if it doesn't then the tooth needs to be pulled. My husband came with me to the procedure but I got through it with very little panic! I listened to a movie on my phone and reasoned with myself that I was going to be perfectly fine. She was even teaching a new dental assistant! So she clean the dead material out of the tooth inserted a medication inside it and then put a filling back on top. She dug some puss out of the gum. Anyway we are really hoping for the abscess to clear up.

[Seraphim]

The abscess has totally cleared up but my TN is still there. The 800mg controls it great though. I can feel the odd twinges and burning and some stuffiness in my ear but it is greatly control.

[sara-pezzini]

Rootcanal eeek! That sounds so scary! Yikes....

But at least the 800 dosage is still working, that's great!