Trigeminal Neuralgia sufferers

[PaintedMeadows]

I have trigeminal neuralgia and am looking for others suffering from this condition as well. I really need some sort of support group to talk to and the one I tried on Yahoo was not good for me. Is there anyone out there suffering from this that wants to set up our own little list or just private emails. I know there is one other lady on this board at least. Anyone else. I am in unbearable pain today and really need to talk to someone. Please!!

 

[SWA]

Rhonda Lynne, I wish with all my heart, I could take your pain away. Somehow to just make it STOP!!! I wish with all my heart....heaven knows. Sometimes I feel it will drive me insane too. If not for the grace of God alone, it would have many times over by now!!!

I don't know how else to help you, outside of continuing my most fervant prayers over you. I've tried to share all I've been through, still this MONSTER takes grip over me at it's whim. I can only share further that... I KNOW... I know....and that makes my heart ache all the more for you too.

I do know..... and I'm so so so so sorry for all you are going through too. I'm soooooo sorry. {{{{DEEPESTHUGS}}}}}

 

[PaintedMeadows]

Thank you Tanya. I am in so much pain today that I can hardly stand it but still I have to keep going because of my 4 year old son who is home with me. I can't find anyone to come look after him today and it's all I can do not to cry which also makes it hurt. My neurologist appointment is next wednesday and then my Mom comes the following tuesday and is staying for 10 days because I am having Lasik eye surger done. That I look forward to. No more glasses which cause me pain as well. Do you keep a pain journal? I think I am going to start since my memory is going and I want to be sure I discuss EVERYTHING with my new neurologist. I just took 2 percocet and am having a hard time getting my hands to move properly for typing. If it wasn't so cold I would got out and cuddle some minis but can't stand the cold either. So frustrating. How do you get your family to truly understand the pain you are in? Man, I wish you lived here so we could get together for tea. Thank you for answering my post. Enough rambling from me. Thank you!

 

[krissy3]

I understand your pain...I had suffered for years with jaw , neck ,and cheek pain. Nothing would help the pain. I ended up drinking a lot of wine to dull the pain, or to fall asleep.

Out of the blue ...the pain went away and never came back...I cant even remember what that pain felt like, but I do remember not being able to chew on one side of my mouth for years, or being able to eat or drink anything hot or cold...and feeling pain and discomfort all the time. I dont think it was as bad as some people have it , but it was enough to make me depressed . I divorced my husband....and eventually I completely changed my lifestyle. I was a hairdresser..maybe it was the chemicals I was inhailing all day long....maybe it was the stress of running my own business, and always being short of money, or just squeeking by. Maybe my husband (who was totally wrong for me) was the problem ...and my parents moved out of the state. Everything that was a "STRESS" in my life went away.... look at your life , or tell me about your life and what your doing , what your stresses are...etc, maybe through a different set of eyes I can help you ...just a suggestion, hope our not offended ...but i think a lot of my physical pain came from emotional pain, and once that was resolved (somewhat) the rest followed.Dont feel alone ....millions of people suffer , just all in individual ways. Emotional stress usually shows up in a physical form , as a way to allow you to recognise and address a problem.

 

[PaintedMeadows]

Thank you Krissy. I actually lead a wonderful life. Honestly. My husband and I are great together. He has a really good and stable job. I have all the animals I ever dreamed of. I have 2 beautiful children that we adopted. My daughter's birthmother is giving me a bit of grief but nothing major. My son is very active but a good healthy kid. My Mom lives too far away. My dad passed away 17 years ago and my mom has remarried but he is terrif and she is happy. I think mine is linked to facial trauma. I have had 2 dislocated jaws on the side of the pain. I also have high blood pressure that they are trying to treat. My dad died at 47 of cardiac arrest and I am turning 39 in a few months so the blood pressure is a stress for me. I don't work outside the home so no work stress. I have also had a mild case of Bells Palsy. Really, I just get so low when the pain is so bad but I feel like I should still keep the house clean, cook meals, do laundry, feed animals and play with the kids. It is just so hard when the pain is so excruciating!!! Percocet barely dulls the pain and I think that is a pretty knarly drug. I guess just talking to others who have been through it really helps. Tanya and Krissy, have either of you ever read the book "Striking Back. The Trigeminal Neuralgia and Face Pain Handbook"? I think I would like to buy it. If you have it the what did you think?

 

[SWA]

I wish we lived closer too. I'd babysit for you in a heart beat. Please do consider going to an ER if it gets too painful for you, while caring for your younger one alone. Gosh, that's a whole other predicament in itself, I know. But, keep it in mind as a final resort if need be, ok?

I know the pain can be unbearable, but the pain killer meds never did anything for me, except make me "unable to function", literally. The anti-seizure meds worked more toward calming it better than any pain killer meds ever could. Once I realized that, the better off I was as far as "functionability". The neurologist still kept prescribing them though, but I wont take them, as they seemed to just exhasperate the pain more than anything. When you go to your neuro appointment next week, see if they might consider upping the dossage of your anti-seizure meds to see if that may help, along with decreasing the pain meds?

I know how it can grip you so ferociously that it makes you want to just SCREAM with all that's in you... but can't because moving your face muscles to do so only drive the pain deeper....and frustrations from that just make you all the more madder about it. Just when you are able, JUST SCREAM, and let it out when you can...that always helps me...thankfully, most of the time, I'm here by myself so no one's around to look at me like i've lost my mind from it.

As for family understanding, sometimes I feel they do truly understand...other times...I'm not so sure. Honestly, how can they? I mean they do try to, but short of living through this MONSTER themselves, how can they?

In that regard, I am thankful for my mom, she has been my ROCK....heaven knows. She's endured this for, gosh, over a decade now. I've only been enduring for the last 5 years or so. I do feel so blessed to have her as my ROCk....but oh my gosh, I would give ANYTHING to have her pain completely lifted from her too. It kills me to see her when she's gripped with it...I can't stand it!!! Same for her, when she see's it grip over me. But, the "knowing" what we both truly endure, honestly, I think helps us both almost as much. Strange as that is....it's really hard to explain in words, you know?

I wish we were both closer there for you Rhonda-Lynne. We are, in our hearts and prayers...we hope you know that. Would you like to call my mom sometime? Or I can see if she can call you, if you would like to talk to her sometime?

EDITED TO ADD: No, I've not read that book "Striking Back". Perhaps I should look into it too.

 

[PaintedMeadows]

Thank you again Tanya. I think I will take you up on that sometime. Right now I just hurt too much to try to think or talk. Thank you so much though. When hubby gets home I am going to go hide in a nice warm, soothing bubble bath with lavender. I do find the lavender seems to help. Really relaxes me. Have you found that? have you tried acupuncture? What about massage? I don't take the percocet all the time but am on gabapentin and I suspect she will increase that. I am on the starter dose of 300mg 3x a day.

 

[SWA]

I know talking on the phone can trigger it all too often. I'd be in the middle of a conversation with my sister and have to just hang up on her...thankfully she knows "why" when that happens. It just grips up out of no where and feels like I've stuck my face in a light socket and won't let go for nothing. Unable to speak to explain anything...other than to just hang up to let her know.

That's one reason why I'm no longer working...speaking over the phone was a major part of my job.

I'm saddened to say I've even lost "friendships" over it to the extent where I would be asked to call them as they didn't feel "emailing" a conversation was "appropriate" when something was needing to be discussed...and I'd tell them I'd prefer to converse by emails, so as not to get interrupted with PAIN...and they'd totally dismiss me as a cop out in talking to them "person to person"...totally not even desiring to "try" to understand that to have a full lengthy conversation is often not possible for me.

Those are the kinds of "frienships" I don't think I'll miss though....but all this to say, that I know how life altering TN can be, even over what most might think are the simplest of things, such as having a person to person conversation about something. They just DO NOT "know"...nor try to understand.

When you are up to it though, just say the word, ok? In the mean time, I'm here by email, anytime, day or night, ok? Scream, yell, laugh...and CRY all you need to, anytime. Ok?

 

[PaintedMeadows]

Thank you so much Tanya!! You are a godsend. My kids don't really understand but they are 8 1/2 and 4. There should be a book written to help explain it to kids. Aidan just fell asleep so I think I will go for a lay down too. Love ya! You are the best!!

 

[SWA]

Thank you so much Tanya!! You are a godsend. My kids don't really understand but they are 8 1/2 and 4. There should be a book written to help explain it to kids. Aidan just fell asleep so I think I will go for a lay down too. Love ya! You are the best!!

Hmmm? Perhaps we could work on something like this together?

Sleep well, and get some much needed rest for now, ok? I'm holding you in my heart and continued prayers and hoping you are feeling up for better soon. {{{WARMESTHUGSTOYOU}}}

"Right now I just hurt too much to try to think or talk. Thank you so much though. When hubby gets home I am going to go hide in a nice warm, soothing bubble bath with lavender. I do find the lavender seems to help. Really relaxes me. Have you found that? have you tried acupuncture? What about massage? I don't take the percocet all the time but am on gabapentin and I suspect she will increase that. I am on the starter dose of 300mg 3x a day."

I've only had the 3 cranial surgeries I've told you about. My mom though, has also had the surgeries, along with trying the facial messaging and acupuncture. She only told me how much she regretted resorting to those...so by her experiences, I've not "gone there" myself.

I do try other relaxing measures though, like long warm lavendar baths, and such. As Krissy mentioned above, "STRESS" itself can be just as much a trigger as physical means, even something so light as soft wispy breeze catching your face at just the right moment, can send me to my knees. Brushing my teeth, chewing food, sipping a drink, or just "speaking" can be triggers. Stress does add to the frequency of grips though, so try to rest and relax as much as possible. Hard to do, I know, when you have young ones about...but try as often as for as long as you are able.

 

[Matt73]

Uggggh. Just reading about it on Wikipedia: "People with the condition "are begging to be killed," said Kim Burchiel, M.D.,". How awful. I hope you find relief somehow. I can't imagine

 

[PaintedMeadows]

Thank you Matt. Ya, they call it the suicide disease but I refuse to give in. I have only had it since last october but I know others that have had it as long as 20 years. I am lucky that I got an early diagnosis and will be seeing the neurologist on March 4th. She is supposed to have quite a bit of knowledge about TN so we will see. Thank you for taking the time to post. I appreciate it.

 

[SWA]

Thank you Matt. Ya, they call it the suicide disease but I refuse to give in.

That's right, it's called the "suicide disease". I want to thank you Rhonda-Lynne, for your bravery in starting this topic thread. I can't tell you how many times I wanted to post here about it, just to have a place to SCREAM and get the frustrations of it out of me.

I'm thankful that I do not know of anyone personally who has resorted to suicide from it, but am often ashamed to admit to myself just how desperate it's made me feel so many times over. The surgeries I've had and many different anti-seizure medications I have tried, just to rid myself of it, I am thankful they have offered at least some degree of varying lengths in "temporary relief", but none have yet to actually cure me of it fully and completely. Same for my mom. She's been a pillar of strength for both of us...heaven knows. Still, there are times where she too, reaches what some might feel is her last straw to draw from, and when I see her like that, I have to tell you, it scares me to no end! Our faith in God, quite literally, by His graces alone...are our only source of strength to "keep on with keeping on" in spite this MONSTER!

If not for my mom, and just having someone that KNOWS, truly KNOWS just what it does to you... I shudder to think where my weaker times of it might have taken me. Heaven knows....

Rhonda-Lynne, I do hope with all my heart that your appointment next week will help you discover a more permanent alternative to all my mom and I have tried so far. I pray for that, with all my heart.

 

[REO]

Rhonda, honey I'm SO sorry to hear you have that and my heart aches for you. I wish I could take your pain from you. I hate knowing you hurt like that

And my dearest Tanya..same goes for you! You know I love you!

{{{{{Hugs}}}}} to you both!

 

[PaintedMeadows]

Thank you Tanya. It gets scarey sometimes doesn't it? I have never been close to feeling like suicide was my only way out but I can see where someone might feel that way. Especially if you don't have the support of your family and doctors. I feel better today but still have that burning pain and my face is quite swollen and red on the left side. My husband and mom are really worried about me which makes me feel bad, I hate to have them worry so I try to really SUCK it up. Then of course they give me heck cause they figure out what I am doing. lol. Robin, thank you so much. Tanya has been a great help to me. After I talked to her about it I felt stronger and more able to cope with this. So thank you Tanya!! I love you!!!

 

[PaintedMeadows]

Well, I have had a good couple of days and tomorrow is my trip to the neurologist. I can't wait to see her! I really hope she has some better treatment than what I am on. Also better pain killers. The percocet does almost nothing. Anyways, tomorrow is a 5 hour drive one way and they are calling for snow so if you could say a little prayer for safe driving we would really appreciate it. It will be a long day but hopefully worth it. Thanks for all of the support so far. I really appreciate it. How are you feeling Tanya? I miss you on colorful.

 

[SWA]

Hey there Rhonda-Lynne,

I just posted on the colorful about my "absenteeism", LOL... here it is again though...

*****

Hi there,

I've been "out of the loop" from the internet for several weeks...again... with only intermittent abilities when I could get to our local library in town to use their computer. Fortunately, I now have my laptop back, and so far, it's in good working order again...so far anyways. I'm not too trusting of it though...considering this will be it's third time "alive", so to speak. So if I do happen to fall off the internet map again...you'll know it took another nose dive....I will send it to it's final resting place if it crashes on me again!!!!!!!!!

I'm almost scared to admit, I have reloaded Scype and Facebook back onto it...I don't know if that is where it caught it's virus or not, or if it was from an email. I've not opened any emails from anyone I don't know, so I don't see how I could have unleashed a virus through email, but my sister insists that scype and facebook are both "safe" places. It just seems awful weird to me that all this virus fiasco seems to have started around the time I signed up with both a few weeks ago. Just in case it was from an email though, I'm no longer opening any "forward" type emails from anyone, even if I know the folks sending them. I will miss all the "friendship" & "inspirational" type messages forwarded to me, but I don't want to chance hubby getting to say "I told you so" anymore than he already has lately, LOL.

I am glad to finally NOT have to trek all the way into town though, to use the Paisley Library computer...there's some strange folks that hang out there...whew doggie!!!! I feel so much better now that I can post from home again. I'm also glad to not have to post from my phone at times I wasn't able to get to the library. I about went cross eyed from that dinky little 1 1/2" screen with everything all scrunched into it's tiny little view spot... my dinky little Palm Centro was "cute" when I got it last year, but now that I actually used it for other than simple phone calls, I just want to CHUCK IT!!!!...not to mention the SORE THUMBS, LOL!!! That thumb posting hooey is FOR THE BIRDS!!!!!

So anyways... for as long as my computer lasts "this time".... I'm back... for now... Missed ya'll bunches!

Hugs,

Tanya

****

Definately keeping you in continued prayers, and will also keep prayer over your travels to and from tomorrow. Hoping all the best for you!

Warmest love & hugs,

Tanya