We have so many members here at LwTN, not all of us post all the time or participate in discussions. Some of us just like to read and reply occasionally.
Some members have a handle on their TN pain and lead busy lives, checking in once in awhile.
Thought it would be nice to start a thread inviting everyone to check in and tell us how and what you’re doing ( good day or bad day, doesn’t matter) : )
(( hugs)) Mimi
Bump!
Hi Mimi,
I'm a 74 year old retiree in the "lurker" class.
I check into this site fairly often and read the current discussions. So many others here have it far worse than I, and I sincerely wish all of them freedom from pain.
I've had occasional Type I sensitivity and zaps for around 8 to 10 years, but the pain was not severe and I just put up with it until it started getting more frequent. Finally TN was diagnosed about 5 months ago. A couple of months later I had my first 10/10 attacks and was prescribed tegretol. It seems to keep it in check, although I don't like being a zombie. I know it is working because all the trigger points no longer cause a response.
The internet is a wonderful resource, and I'm currently reading lots of information about TN and carbamazepine. The various medical and drug sites have a great deal of information, although a lot of it is difficult to understand (google helps). The pubmed site has thousands of article abstracts dealing with TN although the articles are mostly restricted to medical professionals. The TNA, NIH and AAN sites are also useful, and no doubt there are many others. Of course "Striking Back!" was an essential starting point in my education about TN. Learning all I can about it will help me deal with it.
Anyway, I suspect that there are quite a few other lurkers out there. Thanks for the prodding.
Bill
Hi Bill, thanks for responding!
I too was a lurker for a while, I didn’t feel while my TN was in remission or when it was well managed that I had anything to contribute. ; )
Since I’ve been off work and home bound and my TN has worsened I re-joined and take a more active role. It gives me something to do, and a way to connect with other people.
I, like you, like to read all those sites you mentioned! There’s a wealth of information, and it has really helped me be my best advocate for myself.
I’ve always researched things, my friends and family joke that I should have my PHd by now.
In any event, I hope the Tegretol continues to work well for you. My zombie like feelings on Tegretol CR went away after sometime at 800mg, I managed quite well.
Wishing you the same, thanks for posting!
(( hugs)) Mimi
Bump!
hi
I am some what of a lurker but also a newbie. Diagnosed Dec 13th and pain has been fairly low level to this point. On Carbomazopine and have some of the side effects but at only 200 twice a day things not too bad. I like to be informed but find reading too much ramps up my anxiety level too much. I am having a hard time connecting with people who are managing not only with the disease but also the fear and impact on life even when pain is not always there. What about people who manage the disease for a lifetime with medication. Read that some people do but don't see much about that group. stressed out and in awe of those who battle the pain daily...Kay
Hi Kay,
Nice to see you again. : )
I would highly recommend you start a new Discussion asking those people that manage their TN with meds to share their thoughts and feelings.
We do have quite a few members here who would reply.
I understand what you mean regarding reading here and getting more anxious as a result.
You see, most people who participate in forums like these are struggling with their illness. It’s rare that people who have their TN well managed stay around, most want to move on and check in only occasionally .
We are VERY lucky in that we have several members here who function well( work,etc), have found the magic dose of meds that works for them or are in remission or have had a procedure that has greatly reduced their pain.
I managed quite well at 800mg Tegretol (no side effects). I also had an 8 year remission, it’s possible! : )
Hope the meds are working well to keep your pain at bay.
I’ll send you a private note with a few members names whom you can message and connect with.
Take care, (( hugs )) Mimi
I'm a bit of a lurker as well though I havn't been a member for that long.
I've not had TN that long either so when I come on here I'm quite overwhelmed by all the knowledge of others (in a good way) so a lot of the time I don't feel I have anything constructive to add.
I'm currently on 800mg of tegretol and most of my days are pain free. I sometimes try and reduce the meds but always fall into bad depression and of course the pain returns.
I'm quite used to the side effects now, mainly fatigue though for some reason my brain lights up at night time and I can't sleep. I've tried taking my last 2 doses at night as suggested by my GP but if I do this I wake up in the morning with bad migraine.
I'm so fed up of this cycle and am barely leaving the house anymore. I now know why it's important to come off tegretol very slowly. The depression is crippling.
Anyway at the moment most of my days are spent in bed watching mindless tv. Don't know what to do with myself or where to go. The only thing I have to look forward to is my appointment with my therapist for an hour once per fortnight.
Sorry for the depressing post but that's how I feel at the moment.
Hi Clarey,
Thanks for posting!
Sorry to hear you’re struggling. It can be a fine dance at first finding the right balance with the med and giving it time to adjust in our bodies etc. in my experience, the Tegretol worked well and the side effects diminished over time. We’re all so different, I think the most important advice I can share is to allow enough time for your body to adjust to the med, if you’re not getting adequate pain coverage, then usually increasing the dose with your doctors guidance can make a difference, it just means you need to be aware that the side effects with the increased dose will be present for at least a week to 10 days before you’re body adjusts.
( that’s just my experience).
My neurologist has always advised me not to reduce the med until I’ve been at least a month pain free.
Clarey, I’ve been housebound for over a year now, it’s been a very difficult adjustment. All I can tell you is that I try really hard on my “good” days to make a short to do list, I love lists. 
I try to get a few things done, which in turn makes me feel productive. It doesn’t always happen, and I try really hard not to get discouraged.
But that’s a constant struggle.
Visiting this forum and offering support really makes me feel connected to the outside world as well, and also makes me feel useful.
I try and read when my eyes aren’t too tired, or I’ve started sorting through loose photos that need to be organized. That’s a work in progress.
I basically had to change my level of expectation of myself.
The most important thing for ME is having hope that this is NOT forever. I will get my life back.
I cry, I scream, I vent, I pray, I get very down. It’s important to acknowledge those feelings, but even more important to remember that each day is a new one.
Huge ((( hugs ))) Mimi
Thanks for the lovely reply Mimi. I think I do have the right med level at 800mg but just before I got TN we decided to try and start a family and I've been told absolutely to prevent this while on tegretol though I know others who have had pregnancies on it with no problems, I'm just not sure if it's worth the risk plus I'm on other meds too.
I feel selfish complaining because I'm not literally housebound, that's just what my brain chooses to do at the moment. I have a car sitting outside 24/7 but just feel like I don't have anywhere to go (this may be the depression) and don't have any motivation to do anything though I'll certainly try your suggestions :) Most of my friends/family work so it's a case of getting to know new people I think.
Thanks again :)
Hugs
Oh Clarie, never feel selfish.
I know one thing for sure we ALL know what TN feels like.
It’s horrid! I often tell people, I’d rather give birth naturally continuously then have TN…it’s true.
There will always be people who have it worse than you or I, but we all have it. That’s enough.
I’m generally a pretty positive person, but this TN thing brought me to my knees, and it’s such a huge adjustment having chronic pain, being on heavy duty meds, etc
Depression plays a huge factor too.
All we can do is our best, and take one moment at a time…I think we’re so hard on ourselves too, I know I struggle with that. Sometimes my best is just surviving…and that’s ok.
Clarey, as for starting a family…your concerns with Tegretol or any med for that matter are a huge consideration. Between your husband and doctor you’ll make the right decisions. After a month or two on the Tegretol, you might b able to wean off and have a big remission!!? You just never know…take care of you first and foremost,
The rest will come, I promise…
Mimi xx
Hi Mimi,
I'm a bit of a lurker myself. I'm on the site frequently and read most of the discussions but don't leave a lot of comments. The few times I have asked for help the people on this site have been wonderful. My TN started in 2009 after a car accident. The stabbing pain started at this point along with chronic headaches and muscle spasms caused by a Chiari Malformation. The TN was manageable most of the time with a small dose of Tegretol.
Last January I has another whiplash accident and the TN kicked into overdrive. I now have almost constant excruciating burning in the right side of my face/eye/scalp along with daily stabbing pain. I've just added Gabapentin to the mix in the hopes something will help. I've been told that the cause of my TN/ATN is the Chiari Malformation and that surgeries for TN won't help. I was devastated when I heard this but am trying to pick myself up and figure out the next step.
I'm holding onto my dream job for now but am on FMLA and am missing at least one day a week at this point. I've been thinking about leaving because I just don't feel up to the pressure of this job right now but have excellent insurance so it's a hard decision.
Thank you for starting this thread, it's great to hear from others who are not so active on here. I have learned a lot of information and insight from this sight. I like that I don't have to "participate" in every conversation but when I choose to I always feel welcome :)
Stephanie
LWTN is my new facebook...enjoy "lurking" to see how everyone is doing. I've had my second day back to work and had another great day. So happy to have a reason to get out of bed again. Let's face it you can only clean so much lol I have to admit I do miss my "feetie" jammies though. Now I spend the day in office attire :(
Hope everyone has a good day tomorrow :)
(( Linda)),
I’m so happy for you!! Enjoy each moment…those footie Jammies will be waiting for you in the evenings!
You deserve it!
Keep posting and sharing your success!
Mimi xox
Stephanie, thanks for posting!
I’m sure we have another member here at LwTN that has CM. wish I could remember her name, these meds make me so darn forgetful! When I remember I’ll message you.
I’m sorry I’m not that familiar with CM.
Have you had many consults with specialists ? Keep searching for help. Don’t let anyone tell you this is it! There’s always hope!
It’s a big decision you have to make regarding your job… You know best, you have to take care of you, whatever you decide I hope for the best for you, I know it’s hard.
I also hope you start to notice a positive change with the gabapentin.
Positive vibes being sent to you…
(( hugs)) Mimi xx
Bump!
Hi Stephanie,
I have a mixture of tn pains on both sides of my face and had the diagnosis of a chiari malformation less than 48 hours ago on a MRI , as well as cerebellar arteries on both sides contacting the trigeminal nerve .
There is another member that I know of, a lovely lady called Christine who commented on my recent post here :
http://www.livingwithtn.org/forum/topics/mri-results-2?commentId=2413731%3AComment%3A285606
She has had a susessful MVD on one side and is planning the other side in the future, so, so far that’s the 3 I know of , I’m sure there must be more, maybe we can start a discussion as a way of finding fellow sufferers.
There is also a separate patient community listed specifically for CM on the right hand side of the screen .
I hope this is a help to you ,
Take care,
Louise
My brother’s boss had surgery for her chiari malformation and lives a totally normal pain free life now. I believe she had her surgery in Austin, Tx. There is hope for you out there!
Hi Mimi,
I'm a bit of a lurker myself. I'm on the site frequently and read most of the discussions but don't leave a lot of comments. The few times I have asked for help the people on this site have been wonderful. My TN started in 2009 after a car accident. The stabbing pain started at this point along with chronic headaches and muscle spasms caused by a Chiari Malformation. The TN was manageable most of the time with a small dose of Tegretol.
Last January I has another whiplash accident and the TN kicked into overdrive. I now have almost constant excruciating burning in the right side of my face/eye/scalp along with daily stabbing pain. I've just added Gabapentin to the mix in the hopes something will help. I've been told that the cause of my TN/ATN is the Chiari Malformation and that surgeries for TN won't help. I was devastated when I heard this but am trying to pick myself up and figure out the next step.
I'm holding onto my dream job for now but am on FMLA and am missing at least one day a week at this point. I've been thinking about leaving because I just don't feel up to the pressure of this job right now but have excellent insurance so it's a hard decision.
Thank you for starting this thread, it's great to hear from others who are not so active on here. I have learned a lot of information and insight from this sight. I like that I don't have to "participate" in every conversation but when I choose to I always feel welcome :)
Stephanie
I’m not really a lurker but I jus joined recently. I’ve recently had my second mvd surgery and am having a very rough go it recently and this website has given me a great place to vent, whine, and moan. It also helps me keep from letting all this out on Facebook. Many people just don’t understand. It’s great to have a place where I know everyone understands when I’m having a bad day, which has been all of them lately. Thank you everyone for all of the support you provide.