With all the cold + wind it’s been a bad day.
I’m soooo tired of all these meds. I’m sooo spaced out. I feel like I’m just a spectator in my kids life. I honestly feel like the reason my almost two-year-old isnt talking like he should is because I avoid talking.
I feel so lost and feel like I’m trying everything I can.
Keep replaying sesame street for now!
Do you have friends/family to give you emotional support?
Cody gets tired of TV - he’s a real busy body. I honestly feel like my friends are tired of hearing about all this crap.
Is there somewhere he could go 1 or 2 days a week for a couple/few hours
grandma / mom's day out program at a church / play with cousin / etc
Is it too cold where you are to take him to park to run around?
Hi Kismet..This thing is brutal.Cold weather is a big problem for many of us. We share the med fatigue syndrome.I don't read nearly as much as I used to and find myself watching way too muchTV, so much that some of the characters are now my friends. I'm fortunate in that I found the right meds that work for me. My kids are grown now. I can't imagine what it must be like to have little kids and suffer this dreadful disorder. The "lost" feeling is brutal. I wish you the best and remember that many of us find a med regimen that gets us out of the "lost" territory. So, don't give up. During my early days of undiagnosed TN, I had several good friends who could bear the painful facial contortions as I ate. My family support was superb. There are guidelines on our site that you'll find very helpful in dealing with friends, When properly informed about TN, you'll find those truly good friends who'll provide support for you. In the meantime, you'll just have to stick with over 3000 cyber friends who understand and empathize with you.You are not alone.
Have you tried topical lidocaine cream or patches for the pain?
Hi Kismet, hugs of understanding for you. TN is one of the most frustrating things to deal with. Yes the cold has been awful. The meds are no better, hate the side effects. There are so many of us out there, you are not alone. I understand how you feel, not talking becomes our new personality and shipping off your son sounds like you are doing just that..shipping him offt but the social interaction and talking with others would be good for him, well that's my opinion, easy to say when it's not my son and not me. Talk to your doctor, tell him how you are feeling and camp there until he can find you the right drugs. That's what I did, it finally worked. I don't think there is a durg out there for TN without some side effects though. My heart goes to you as well. Keep talking to us all and letting things out, it helps to just keep typing.
Linda
awe kismet my heart goes out to you I'm sure that your son is just happy your there so dont beat up on yourself about that.
Unfortunately, we are limited on family. My mom passed in 2011 and hubby’s mom passed, too. I’m thinking hard about joining a church for many reasons.
I don’t like to burden others with my struggles or my kids. My husband finally seems to be understanding. My first few days on tergretol this week and he pleaded me not to take it anymore.
I have a second neurologist I’m seeing on Monday. I pray so hard he can help. I will ask him to prescribe lidocaine. My pain is constant, but sometimes it’s worse.
I take Cody outside as much as I can. It has been really cold lately. I do try to play with him. Doing blocks and cars.
I know you all can relate. I don’t feel depressed as much as I feel very anxious, stressed and worrisome. My GP has tried me on 3 antidepressants and I don’t fair well with them. Also tried two others over a decade ago and had issues with them.
I just want my normal back. I know I’m in denial to some extent. I know I’ll have to have a new normal. I’ll learn.
This disease has literally drained my life, my savings and my relationships. Maybe all I’m feeling is normal when you look at what I’m up against. What we’re up against.
((( kismet )))
Mimi xx
(((( Mimi )))) thank you!
Hi Kismet, just take a little bit at a time and get through an afternoon at a time instead of a week at a time or a month at a time. Even when everything is going great with no stress or struggles it still is HARD to be a Mom to a 2 year old :). And that is before figuring in TN and uncertainty and pain and cold and depression and… What about getting your son a “dance along with” music/dancing tape, I know lots of little ones who LOVE them and expend tons of energy dancing away to the tunes. Remember that lots of us on line here care and know how you feel. Children are really resilient too and I know that your little guy’s primary feeling is that he is glad Mom is with him. Take it as easy as you can, and remember that this might be one of those days that you’re doing well just to have gotten through it.
If anxiety is on your target list -- why not ask for some low grade anti-anxiety med -- clonazapam has helped take the edge off TN and Anxiety for some on here.
Why stopping the tegretol? Bad side effects?
Thank you, TL! Cody is so different at his age than my other son was. I try many things with him and do what I feel I can. I just feel bad because I did so much with Jacob, my almost 8-year-old. Cody loves to dance and he and I turn on music sometimes and jam out.
I find myself apologizing so much to people about how I am not "here". With higher doses of neurontin I am becoming forgetful. Almost forgetting to pay bills (luckily got a bill reminder)
Your words are so helpful and I appreciate them. I read your post a couple times!
TL said:
Hi Kismet, just take a little bit at a time and get through an afternoon at a time instead of a week at a time or a month at a time. Even when everything is going great with no stress or struggles it still is HARD to be a Mom to a 2 year old :). And that is before figuring in TN and uncertainty and pain and cold and depression and... What about getting your son a "dance along with" music/dancing tape, I know lots of little ones who LOVE them and expend tons of energy dancing away to the tunes. Remember that lots of us on line here care and know how you feel. Children are really resilient too and I know that your little guy's primary feeling is that he is glad Mom is with him. Take it as easy as you can, and remember that this might be one of those days that you're doing well just to have gotten through it.
KC,
My GP said he doesnt want me on any anti anxiety meds because they are highly addictive and I am so young. I am not understanding his argument on that. I have only taken anti anxiety meds when my mom died and that was for a short period of time.
The tegretol side effects are the worst. I will try it more this weekend when the kids are gone to see if I can tolerate the side effects. My main complaints were tingling in my legs, whole body hot flashes, felt in a stupor. My husband said it scared him. I was slurring words horrible and couldn't walk. I need to see if it helps though for diagnostic purposes before my visit with new neurologist.
I was told relief with tegretol should be immediate. Is this true? I am only starting at 100mg 1x a day then bump up 100 mg a week. Does relief come at higher doses? If it doesn't provide relief does that mean I do not have TN?
If you had that severe of side effects I would truly not do that again. WHO says to put your body and mind thru this again?
Those are NOT minor. It doesn't matter if it would have helped your pain - your body is reacting severely, not mildly... sorry I get soooo fed up with so many docs on here.
Tegretol is like my previous trileptal before surgery. I think it took a week or two and upping the dose once and I had relief. BUT my only side effect was severe drop in IQ !!! That is what drove me to MVD
Clonazapam is not going to turn you into a drug addict --find some print offs about that med and it's effect with TN and / or anxiety
When we are anxious and stressed - guess what - TN hurts worse and more often!
Do you have TN1 lightning strikes come and go --- or TN atypical with burning boring pain?
My surgeon had me google a McGill Pain Scale-- and I showed it to him----it only takes a few min. and a very great tool for professionals to know where to start ----- take it to ALLLLL your docs and it will help detect which version of TN you have.
I''m sorry I'm not generally one to give cyber hugs as much as I feel driven (as a social worker probably) to get people to stand up to their docs. They are a dime a dozen.
You/hubby do the research and figure out what you will NOT put yourself thru - and what YOU want to try. I had to do my own research on here and TN assoc. site. I even got my neuro here to give me Ritalin (yeesssss addicting) - I had one bottle and used as needed to focus and have energy to research my wonderful surgeon..... it took months for me to make the leap. I was dx in Oct. 2010, MVD -flew to Michigan for MVD October 2011. Oct. 2012 was one year mark. Don't give up!
Keep Posting : )
Oh my dear how I feel for you. It is so hard to have the pain and everything that goes with it but it is harder when you have children. My children and 36, 34, 30 and 26 and only the 26 year old really understands. The others have a hard time. I really empathise with you. TN puts you in a lonely place. I know I was there for 5 years and only now seem to be getting the meds that are not making me feel like a zombie. I cannot offer you any advice, but I can put my arms around you and hug you and try to make you feel better that way - even if we are thousands of miles away from each other. If it helps just keep writing and venting that is why we are the TN family.
All love.
kismet, Tegretol is a great TN med for Type I the sharp electric pains. If you are Type II then maybe other avenues should be explored within the Face Pain Info. 200mg per day is quite a low dose, although the correct starter dose! Most find relief at 400-800, but we are all different =)
Kismet said:
KC,
My GP said he doesnt want me on any anti anxiety meds because they are highly addictive and I am so young. I am not understanding his argument on that. I have only taken anti anxiety meds when my mom died and that was for a short period of time.
The tegretol side effects are the worst. I will try it more this weekend when the kids are gone to see if I can tolerate the side effects. My main complaints were tingling in my legs, whole body hot flashes, felt in a stupor. My husband said it scared him. I was slurring words horrible and couldn't walk. I need to see if it helps though for diagnostic purposes before my visit with new neurologist.
I was told relief with tegretol should be immediate. Is this true? I am only starting at 100mg 1x a day then bump up 100 mg a week. Does relief come at higher doses? If it doesn't provide relief does that mean I do not have TN?
Hi Kismet, sorry to read your heartbreaking story. I'm wondering if your doctor could refer you to some place where Cody could go to interact with other kids (like a creche)..somewhere you don't have to talk much? Might be worth asking. Word cards might not be a bad idea either, I know 2 is kind of young but I guess the earlier the better.
I do agree with your doctor about anti anxiety meds...they are fine for short term or irregular use but if taken on a daily basis for anymore than a few weeks the anxiety just comes back worse than ever. Do some research online...all benzodiazepines can take years to withdraw from. I'm still struggling to come off 10mg of Diazepam after 2 years...that said, if you don't intend to have any more kids then it might be something to consider...that's probably why your doctor is hesitant to prescribe them because of your age there is a risk of pregnancy. I'm guessing if you can't tolerate 100mg of tegretol very well then even the lowest dose of clonazepam will make you even more hazy.
Do try and stick with the tegretol...I've been taking them for around 6 months now and it does get better. I'm on 800mg per day with little fatigue and barely any pain now. I was told it would take a couple of weeks to take effect but I felt relief after just a few days though I started on 200mg going up by 100mg every week until I reached 800mg.
Best Wishes x
Kismet said:
KC,
My GP said he doesnt want me on any anti anxiety meds because they are highly addictive and I am so young. I am not understanding his argument on that. I have only taken anti anxiety meds when my mom died and that was for a short period of time.
The tegretol side effects are the worst. I will try it more this weekend when the kids are gone to see if I can tolerate the side effects. My main complaints were tingling in my legs, whole body hot flashes, felt in a stupor. My husband said it scared him. I was slurring words horrible and couldn't walk. I need to see if it helps though for diagnostic purposes before my visit with new neurologist.
I was told relief with tegretol should be immediate. Is this true? I am only starting at 100mg 1x a day then bump up 100 mg a week. Does relief come at higher doses? If it doesn't provide relief does that mean I do not have TN?
(((Kismet))) I lost my mom when my first child was four months old. And I had bad health problems at the time. So, I sort of understand what you are going through.m I’m so very sorry.
cling to your faith, your husband, and any good, solid, friends. Keep in touch with your doctors and get second opinions. Consider switching/leaving any doctors who are unkind or consistently not helpful. It is hard, but do your best to stay hopeful and optimistic. I just said a little prayer for you.