Hi my name is Mabel. I’m 19.
I hope someone reply this, you look like really nice people.
Well I’m a TN patient. And people don’t really know the true meaning of pain. Because you tell them “Its hurts” and they’re “Yeah sure”.
So i feel a little bit alone. Even if my friends tell me " i got you" noooo they don’t got me.
They don’t. And the most ironic thing of all.
Some people thing that you are faking it. My family thought so. And a Magnetic Resonance prove them wrong.
My family don’t know how to handdle this.
I’m learning but just for one second i wish i could not been suffering a terrible and permanent migraine.
I don’t know what to do now.
Theres no place in Panama to talk about this. I don’t even know a single person that got this.
When somone got an illness, you usually listen people saying “i know someone who got it…” or “my uncle in Canda suffers that” or “my grampa pass away because of that” but thats not my case.
When people ask me " why are you crying?“
And told them " i got Trigeminal Neuralgia” (or in spanish Neuralgia del Trigémino).
And they are like what the hell its that. Thats even a thing??
And then you see me explaining them whats the TN.
And the same thing happen like five times per day.
I know that this isnt a common illness but that doesnt mean that we doesnt deserve support or.at least that people have awareness of what is TN.
Someday we’ll have a cure. But until that we have to be strong
Hi Mabel. I am 67 years of age. I know lots of people and of all of them only two people really understand my TN…because they took the time to look it up on the internet! Thank goodness for the internet and sites where we can talk to each other…so remember you are not alone. The hardest thing for me is to get through each day with this “thing(TN)” hanging over my head…so difficult to make plans for even the near future. Right now I am coping with the pain and the side effects to the medications but it seems that both the pain and the side effects are constantly changing. If you like tell me a little more about yourself. Do you have any hobbies? I knit…and that helps because when I am sitting knitting I am not moving around and the pain is less.
Hi, nice to “meet” you haha.
Well, I’m in College studying International Bussiness, actually right now I’m in classes. The professor didnt let me go to my house. I told him about my pain that i got today. And replied me that it wasnt hes problem.
So here I am.
I love knitting. I left the hobbie but i think im going to do it again.
I’m an actress at my College Theather Company. So I guess thats my only hobbie.
Bye, good night
Hi it’s true no one understands I’ve had this pain for years neurologist says ATYPICAL that tells me nothing medication makes me stupid weak sleepy and truthfully at the time of pain I would like to go to voluntary uthinasia ,we don’t have this in Engand but when the pain goes for a couple of weeks I’m happy and will start back at the sports club ,just wish it would stay away my pain is occipital but neurologist hasn’t dealt with it before so doesn’t know anything about it ,so to increase medication and goe to pain clinic ,well that doesn’t help me ,I dread the next episodes of pain which could last12 days or more , I just have to accept this painful time ,is there no medical help in England I can’t afford to go private as I’m now 80ys old and want to stay in my home not get weak and feeble which I think this pain may make me. So I need someone to just listen to me and who knows what this pain is like .i would be grateful for a pick me up friend
Good morning Jane7 and Mabel. It is just after 5 am and as usual I am up. I get hot flashes every morning and there is no sleeping after that. So I get up and knit…my cat loves it…he sits with me and wraps himself around my arm. Mabel maybe you need to print out some info on TN and take it to your Prof’s…something simple no more than 2 pages. What do you ladies take for the pain? I am currently on gabapentin 100 mg morning and night and nortriptyline 10 mg at night. My last electric shock like pain was on Sept 8th. However the right side of my face feels like a “bug zapper”…smaller little zaps that come and go. However the pain on my left side of my face is increasing…never had the electric shock like pain on the left side…just pinching like pain. My onset of TN was text book but since then nothing has been typical. Jane7, have you seen a neurosurgeon? Have either of you tried nortriptyline…it does help. Hang in there ladies…time to go knit.