TN AND RELATIONSHIPS

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Moderator Comment by Richard A. "Red" Lawhern on July 23, 2011 at 9:19am

Is Cubs9194 active on this forum at present?  I saw a posting from her earlier this morning, but cannot now find it in the queue.

Regards,

Red

Comment by Victoria Nash on June 30, 2011 at 2:41pm

Sue, the lady in the YouTube video down the google page actually has the pain in her cheek I think.  Its a definite possibility to try for any of this. I'm trying it for sure, just to see and I'm crossing my fingers!  : )

 

And again, I'm sorry, I probably shouldn't laugh again but hey, its good to when you can right?  The Ebay thing....isn't there a category for it?  You are too funny and its a very good thing Sue.  : )

 

Hugs!  : )

Comment by Sue Richey on June 30, 2011 at 2:33pm

Hey Victoria, thanks for the comment!!  I have atyptical TN and the pain is in my cheeks, eyes, and all around my eyes.  I wonder if a chiropractor would help with that?  I have no compression in my brain.  I would just like to trade in my eyes, please (for sale on ebay:  one set eyes, brown, blo0d-shot, lots of pain, have experience with lots of tears.  Will sell or trade for new eyes.

Comment by Victoria Nash on June 30, 2011 at 2:23pm

LoL, sorry, really don't mean to laugh, but your reference to Madeline Kahn was funny.  : )  Got to some humor in all this right?  The rest of it is so horribly bad.

 

But wow, 900 mg and you are seeing a difference. Its just not right that its a drug we have to be on and can't switch to another one when there is a problem like that.  And thats a really bad problem!  I'm now really wondering on past times.  I've been on a high dose for quite awhile!  And my doc said he may need to switch me to Tregadol next.  Yuck Sue!  Seems like there is no other avenue we can take and its not right.

 

But speaking of no other avenue, I am in the process of trying out one other one since I REALLY cannot imagine having this the rest of my life.  Not sure if its going to work or help lessen the episodes but its worth a try and not sure how many people on here have tried it.

 

In speaking with a friend, he said he had had some nerve problems in his back and upper neck and finally with no relief with pain meds, he went to a chiropractor.  He gave me the name and I immediately went just this past week.  Have been two times and the chiropractor knew of the disease and has started to crack my neck up high. ( And the two times have been amazingly horrible cracks and so loud!)  I'm going again tomorrow since he said he'd like to see me at least 3 times about this.  He seems really excited.  And I'm trying to be as well.  Its interesting how much is on the internet about Trigeminal Chiropractors.  I'll post the link of the Google page and you can read some of the articles if you'd like.

 

If for some reason this works to take these horrendous episodes away or even lessen them, I am going to broadcast it everywhere!  lol  One YouTube video even was of a woman with Trigeminal Neuralgia and her experience with a chiropractor.

 

http://www.google.com/search?sourceid=navclient&ie=UTF-8&rl...

 

Anyway, I've rambled on here too much and I apologize. : )  Also, if you have tried a chiropractor already, I'd love to know the outcome. Ok, I'm going now!  : )

 

Have a great day!

 

Victoria

 

 

Comment by Sue Richey on June 30, 2011 at 12:10am

I'm on only 900 mg/day, but that's enough to make a difference.  The desire is there, just not the results.  It is tiring!!!!  I don't think anyone will be offended by our comments, I haven't seen this discusssed.  I had the same problem with another drug I tried (Tregatol?) at 600 mg.  So many drugs over the past year I get them mixed up.  It makes sense, since these drugs calm the nerves.  I just don't want those nerves calmed.  I remind myself of Madeline Kahn in Blazing Saddles (from here down I'm dead!)

Comment by Victoria Nash on June 29, 2011 at 11:09pm

Hi Sue. : )  Usually I just find myself lurking here on the site and not staying long since it tends to upset me so much and I get so teary and it breaks my heart that there are so many dealing with this horrible disease.  (I was diagnosed  back in April of this year.)   I know how bad it is for me and I don't want anyone else having to deal with it ever! :( 

 

Now jumping to the second part of your post.....can I ask how much Gabapentin you are on?  I'm on 2400 mg a day and my neurosurgeon said that that is about as high as he wants to go.  And now that I think about it, you have me wondering on your question.  Looking back to a recent 'evening', I was finding it taking longer and longer (and tiring!) to even get to a certain point and then it not happening at all.  (So hard to find the words to talk about it on here and not say exactly what I mean for fear of offending anyone. lol) Anyway, you now have me wondering if the medicine could be a block of some type.  Could be either the high dose of Gabapentin or the Tramadol I'm taking at the first little twinge, I don't know.  But I would like to know the dose you are taking if you'd want to share that.  Very interesting point you have brought up and would love to hear of more ladies on this to see if its a concern of any more of us.

 

Thanks for bringing it up and I hope things get brighter for you very soon!

 

Victoria  : ) 

 

Comment by Sue Richey on June 29, 2011 at 8:53pm

I guess we're all in the same boat when it comes to TN and relationships.  Our spouses can't feel what we feel, so they sometimes get short and say mean things.  My husband said the other day "you're not really sick" and I got so mad I had a melt down and told him to stay away from me.  I was afraid of what I would do.  He is loving and tolerant, but I know he is so tired of having to do everything.  Due to my back and knee problems, and now the TN, I can't do much or go anywhere.   He says he can't do anything anymore and I keep telling him to go do it, I'll be fine on my own, but he feels bad about leaving me behind. 

 

OK - here's the embarassing question - for girls only - I'm on lots of Gabapentin, it is decreasing my nerve sensitivity in my eyes - and other places.  Know what I mean?  Anyone know what I mean?  This can take a toll on relationships but my husband is very loving.

Comment by elaine48 on June 27, 2011 at 1:09am

this is erally hard on my 41 year marriage. I am a horror in pain and I feel horrible about not being there for my spouse. What does one do in this situation. I cant do a fraction of what I used to do and its so unfair in a relationship.

Comment by Chris K. on June 13, 2011 at 3:14pm

It seems like I'm one of the rare people here who is fortunate enough to have a supportive partner. My husband has pretty much just taken this in stride. He tells me sometimes that he doesn't feel that there is anything he can really do to help, since he can't take the pain away, but he does make things better for me every day and it means the world to me that he is on my side.       

That's not to say that things have been easy. There has definitely been a learning curve as we figure out how to best deal with this. I know there are days when I feel miserable and I'm probably not that much fun to be around, but he never holds it against me. We just try to keep in mind that we are both doing our best and try to be as forgiving as possible when times are hard.                               

It's worth noting that when we first met, I had been hit by a car four months earlier. I was dealing with constant back pain and couldn't do much. On top of that, I had a scar on my face that made me look like Frankenstein. None of it even phased him. I suppose that was a litmus test, of sorts.                   

It is absolutely heartbreaking to me that not everyone has the loving support that they deserve. I can't imagine having to deal with someone who not only isn't any help, but who makes things even worse. It's clear from all the kind, empathetic, uplifting words from everyone in this group that you are all wonderful partners yourselves and its a shame that you don't always get the same in return. Everyone deserves someone that they can count on and it's so unfair when things don't work out that way.

Take care,

Chris

Moderator Comment by Stef on May 10, 2011 at 9:35pm

Congratulations, Tina!   My fiance and I are also supposed to get married in September.  I have explained the mechanics of how the disorder works.  I've just sort of involved him in the whole process of my search for appropriate treatment.  

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