Trigeminal shocking is unbearable

[Adrienne]

It appears my AN is so large that it's affecting my Trigeminal nerve.  The shocking pain comes and goes, but when it comes-oooooooh boy, it's killer pain.  Enough pain that it limits my talking and eating.  Brings tears to my eyes and makes me gasp for breath.

My GP prescribed something called Carbamazepine, and did so because that's what he gives his patients with Trigeminal Neuralgia.  The problem is.....because it comes and goes, I don't feel this is right for me.  I'm supposed to 'build it up in my system', but I can go days/weeks without ANY pain.  Seems ridiculous to take this med for so long and not know if I even need it (!!??).  I would prefer a med that I can take similar to an advil, where you take it only when you have the pain and it gets to work right away.

Anyway, my question is two fold for those that have experienced the shocks up the side of their face:

1) Have you found any over the counter meds/relief that you can take only when an episode starts or you're going through a bad period?

2) For those that had the trigeminal shocks before surgery, did it get BETTER after surgery?  Or is this just a new reality to live with?  I forgot to ask the neurosurgeon that when he confirmed that it is related.  I know it's affecting the feeling in my eye.  I can poke myself right on my pupil on my AN side and barely have a blink response.  Not good........

Thanks so much!
Adrienne

[CHD63]

Hi Adrienne .....

I can identify with the lightning bolt shocks from trigeminal neuralgia, caused from pressure on the trigeminal nerve.  I had the horrible intermittent shocks for six months before microvascular decompression surgery 15 years ago.  During those six months I was put on Tegretol, which did lessen the severity but required increasingly larger doses.  The decompression surgery was retrosigmoid and the relief from pain was immediate and never returned.  It seems logical to me that your trigeminal pain should be gone when the pressure is taken off the trigeminal nerve with your AN removal.

As "luck" would have it, I developed an AN on the other side 10-12 years later, fortunately without the trigeminal nerve involvement.

I pray your pain will be gone when the AN is gone!

Clarice

[MAlegant]

My trigeminal pain went away after surgery and has not returned since.  They were my only presenting symptoms, but man, that was the worst pain I had ever had. 

[MAlegant]

Oh, and nothing OTC will help that pain.  I think the Tegretol that Clarice mentioned is a common medication.  Good luck.
Marci

[Adrienne]

THANK YOU.  I am SO happy to hear that both of yours went away after your surgery!  I really hope that's the same for me.

(BTW, you gave the *right* answer......even though I would have wanted the truth, I'm not sure what I would have done had you said it never really goes away!!!!!!!!).

Thanks for answering so quickly.  I hope this is the 'norm', and not just a few exceptions!!  :-)

[sgerrard]

Adrienne,

FYI, Tegretol = carbamazepine.

Larry, aka mrgarlic, whom I have met in person at the Portland ANA group meetings, had a trigeminal neuroma removed in January, and also reported that the pain went away. So that makes three.  I think you should be optimistic.

Steve

[MAlegant]

Adrienne,
That really is the right answer.  It will go away.  I hope you can deal with it until then. 
M

[Keri]

Hi Adrienne,
I'm so sorry you're dealing with all of this. I hope you are able to get your surgery scheduled soon and can get on with recovery.
Hugs and prayer to you,
Keri

[joebloggs]

Hi Adrienne,

I had the same pain as you are having before my surgery - I didn't take anything for it - I try to avoid meds if I can and because it would just come all of a sudden and then go, it wasn't predictable enough to medicate I thought.  Anyway the good news is after my surgery - 7 weeks ago - I've not had any more pain... whoop whoop!

good luck

[Adrienne]

Thanks everyone.

Today is the worst day yet.  I actually cried twice because of the pain.  Called my neurosurgeon and spoke to his assistant.  He's in surgery today and she won't be able to ask him anything until tomorrow.  So today I put up with it, and hope tomorrow is a new day.  I also secretly hope they take this as a sign that my surgery needs to be a priority and none of this waiting around dealing with this pain for MONTHS business.............

I mentioned my 'cloudy' eye too, which is a new development since i saw him last week (actually, it's hard to explain.  It's not affecting my vision (yet?) but feels like there's some kind of film inside it.  Odd....).  Hopefully he'll have some input for that as well.

I'm so thrilled to hear this trigeminal nerve pain should go after surgery.  It's debilitating and bad for the social life too (don't want to talk to anyone or eat anything for fear it will trigger).

Thanks again,
Adrienne

[alwaysthere]

Adrienne,

Ciould you or anyone please explain to me and others what trigeminal nerve pain is?
Another one of them things I've never heard of.

Patty

[Adrienne]

Found this online.  It is about Trigeminal Neuralgia (something different) but since the AN is affecting/irritating this same nerve, this best describes what I'm dealing with.  Hope you NEVER get to know this pain on a closer level than this description:

The trigeminal nerve (also called the fifth cranial nerve) is one of the main nerves of the face. There is one on each side. It comes through the skull from the brain in front of the ear. It is called trigeminal as it splits into three main branches. Each branch divides into many smaller nerves.

The branches of the trigeminal nerve take sensations of touch and pain to the brain from your face, teeth and mouth. The trigeminal nerve also controls the muscles used in chewing, and the production of saliva and tears.

Neuralgia means pain coming from a nerve. In TN you have sudden pains that come from one or more branches of the trigeminal nerve. The pains are usually severe. The second and third branches are the most commonly affected. Therefore, the pain is usually around your cheek or jaw or both. The first branch is less commonly affected so pain over your forehead and around your eye is less common. TN usually affects one side of your face. Rarely, both sides are affected.

The pain is stabbing ("like electric shocks"), piercing, sharp, or knife like. It usually lasts a few seconds but can last up to two minutes. The pain can be so sudden and severe that you may jerk or grimace with pain. The time between each pain may be minutes, hours, or days. Sometimes several pains repeat in quick succession. After an attack of pain you may have a dull ache and tenderness over the affected area which soon eases. However, constant pain in the face is not usually a feature of TN.

You may have 'trigger points' on your face where touch or even a draught of air can trigger a pain. These are often around the nose and mouth. Because of these, some people do not wash or shave for fear of triggering a pain. Eating, talking, smoking, brushing teeth, or swallowing may also trigger a pain. Between attacks of pain, there are usually no other symptoms, the nerve works normally, and a doctor's examination would find no abnormality.

[CHD63]

Yup, that describes it to a T!     I can tell you exactly where I was and what I was doing the first time it hit!  I thought someone had touched my face with a hot wire!  Before I finally had surgery, I was wearing a scarf around my head and face night and day because the least breeze or cold air would trigger an episode.  My pain was always in the top two segments so it was above and below my eye and my cheek.  Initially I thought I had a terrific sinus infection because I was just getting over a cold at the same time the first episode occurred.

Even after 15 years, I still shudder remembering how awful it was.  Thank goodness my primary care doc correctly diagnosed it quickly and then it took several months for my husband to convince me to have the surgery (brain surgery ..... no way, was my first reaction).

Adrienne, keep on the surgeon's front burner ..... there is no need for you to suffer like this!

Clarice

[Keri]

I agree with Clarice.. I hope and pray you can get moved up to the front of the surgery line soon soon SOON.


Keri

[moe]

I hope and pray you get your surgery sooner. That sounds absolutely intolerable.
Hang in there.
And not knowing when it is going to strike must be horrible too
Maureen