06-08-2018, 02:28 PM
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#1 | | Newbie (female)
Join Date: Jun 2018
Posts: 5
| So far
So I've been having this really horrible pain 3 times this year so far. The 1st time it went on for a few hours, around 20 then the 2nd time it stayed for 2 whole days and now this is the 3rd time of experiencing it. I've had it now for 3 whole days, nearly 4.
So when I get this 'pain' its there ALL DAY like a dull tooth ache/ear infection then all of a sudden my face is getting electric shots, shooting pains all down it for at least 5 to 10 minutes, then it stops and the dull tooth ache pain comes back.
Its on the right side of my face. I also can't run my hand through my head without feeling pain on the right side. When I lie on it oh my gosh I feel like I'm getting stabbed right behind the ear and all around the back of my head.
So after experiencing all of this I went to the doctors. I went in and told him I've been having face pain. He asked a few questions then he felt where I said hurt. He then looked in my ear and told me I have trigeminal neuralgia on my nerve. He then gave me a prescription for carbamazepine 100 mg.
I am only just turned 20 and all I can say is how upset I am that I have to deal with this. The thought of the pain just makes me want to burst out crying, I'm having no sleep ( as I can't sleep on the side ) I don't know what helps or what doesn't help. I don't know what my next steps are. I would like to have an MRI and a CT. would that make it certain that I have this
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06-08-2018, 08:14 PM
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#2 | | Senior Veteran (female)
Join Date: Apr 2005 Location: Birmingham, AL
Posts: 19,698
| Re: So far
You definitely need an MRI to locate exactly what typeof TN you may have- if you have it.You will need to see a neurologist to be sure. There are medications and surgical treatments for this. You can check with the Facial Pain Association for an approved doctor in your area.
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06-09-2018, 12:29 AM
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#3 | | Newbie (female)
Join Date: Jun 2018
Posts: 5
| Re: So far
Hello thank you very much for getting back to me. I got given carbamazepine 100 mg told to increase daily, that's it though. My problem is I don't want to take the tablets as the side effects don't go nicely with me. I am most certain its trigeminal neuralgia 98% I didn't even say the word to the doc and he just came right out and told me I had this
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06-09-2018, 06:14 AM
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#4 | | Senior Veteran (female)
Join Date: Apr 2005 Location: Birmingham, AL
Posts: 19,698
| Re: So far
The side effects are a problem...my sister took them in the beginning for hers and just hated it. Finally after 3 years she had the decompression surgery and it worked. But not everyone is a candidate for that procedure. That's why you need an MRI and to see a neurologist who is familiar with TN so that you know the cause and what might work for you.
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06-09-2018, 10:01 PM
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#5 | | Newbie (female)
Join Date: Jun 2018
Posts: 5
| Re: So far
What if I don't want to take the tablets? Would a neurologist see me still? Or would that be a problem? I just feel all I need is a simple MRI scan.
Anyway the pain has gone today, had a few shocks of it when I've laughed but that's about it. The top of my ear behind it is still sore though. Like pins stabbing and I feel like a heavy weight on the side of my face ( on my temple sort of )
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06-10-2018, 05:59 AM
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#6 | | Senior Veteran (female)
Join Date: Apr 2005 Location: Birmingham, AL
Posts: 19,698
| Re: So far
No one is going to hold you down to force meds on you! Yes, a neurologist will still see you. An MRI will tell you whether or not you actually have TN. It's often mis diagnosed. It could be something else. There are different types of TN caused by different things. Go to the neurologist and get the MRI. Then you will know more.
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06-10-2018, 01:02 PM
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#7 | | Newbie (female)
Join Date: Jun 2018
Posts: 5
| Re: So far
I've been reading a few things. Do I ask for an MRA or an MRI? And what about a CT?
I know you are obviously not a doctor but what does this sound like to you that I'm having?
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06-10-2018, 06:02 PM
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#8 | | Senior Veteran (female)
Join Date: Apr 2005 Location: Birmingham, AL
Posts: 19,698
| Re: So far
My sister had TN and two friends have it so I know a bit more than the average person. All had MRIs to dx it. One has it as a result of MS so it is different that the other two cases as the breakdown of the nerve is in a different place and has a different cause. The trigeminal nerve is held by an arterial loop behind your right ear. Accident or congenital deformity can cause the sheath to disintegrate and get raw causing the pain when the loop presses on it. It can be surgically repaired in some cases. You need a neurologist who is conversant in TN and an MRI. I don't know what else to tell you.
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06-10-2018, 06:05 PM
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#9 | | Newbie (female)
Join Date: Jun 2018
Posts: 5
| Re: So far
Right behind the ear at the top? I can feel pain on it right now, its not on my face today but I can definitely still feel pain behind my ear.
Thank you very much for your info and time. I am just scared as what I've read isn't good. I'm scared of surgery and I'm scared of tablets so its hard for me.
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06-11-2018, 05:34 AM
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#10 | | Senior Veteran (female)
Join Date: Apr 2005 Location: Birmingham, AL
Posts: 19,698
| Re: So far
It's more just above the earlobe and out a little. My sister has a little round metal plate there where they accessed the loop. You need to find out for sure if this is what you have. If it's something else,you'd never know. Please go get the MRI. and take it from there.
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