How do you live always wondering if you should make plans..because you might have an attack. I'm a Nurse and I'm concerned about working (in surgery) with the side effects from neurotin. Foggy head can pull up works. look at peoples mouths move n have no idea what they just said. 'm on short medical leave- the Dr. keeps telling me "you shouldn't be having those side effects" excuse me Dr. I am!
Pain for 5 days in a row, so bad - just going up to dose planned by neuro. now having heart palpitations since on high dose so I have to go back Thursday.
My kids are a whole other deal.. they are 6 & 11 -I don't want them to think back to their childhood & remember me either in pain or sleeping. UUUGH!!!!!!!!!!
Help. Any other nurses out there with TN on meds with side effects. Moms with young kids? Anyone with any advice. I'm so angry at TN for changing my entire life!
My oldest son is 20 and has watched me go through this for fifteen years. My 7 yr old and 8 yr old are also very aware of my pain. They all help me during my painful times and we all have wonderful times when I am doing great. It is known that plans may change. My kids have been very flexible.
Aw, I understand how you feel, Laurieanne. I get angry too...not to mention scared about the future.
My TN pain started when my youngest was 18 but I've had MS since he was 10 years old and it broke my heart that I couldn't be there for them as much as I wanted to be. I have three kids, though, and all three of them reassure me that they always felt I was there for them, even though I was so sick.
Big hugs to you. Hope you'll get over this flare up soon!
I think any mom who is concerned for their children while dealing with this is a good mom. It won't be easy but it won't destroy them either. This is life. Have you thought about MVD? I know it's not a long term solution but it might give you some time. If you have such an important job it might be better than the meds. I know neurologists like to wait but this might be one of those times that it shouldn't wait.
I fit the bill - a mother and a nurse! You sound just like me when I was on tegretol (am now on gabapentin and don't get the brain fog with it but I know how it feels!). I think it's worse being a nurse too (I'm a pediatric nurse) because we always know the worst things that can happen as well as expectations can be higher I guess. I have preschoolers and have to run into my bedroom in a bad attack so they don't see me in pain. I also get pretty grumpy when sore :( Tegretol put me in hospital, I had a pathetic encounter with a neurologist as an inpatient who argued it wasn't the tegretol causing my neuralgia in my arms (so bad I had to sit in the ER with my arms in the air, putting them down on anything was like razors cutting me), the medical consultant changed my meds and it relieved it so the neuro was so wrong (he also said that it's not TN due to pain lasting more than few seconds - wtf?!). I am seeing that idiot again next week - not sure he realised I was a nurse so look out! ... we do kind of hold the power there - nurses armed with info and we have the guts to fight for our rights as patients. So you can take heart in that fact, imagine a patient in pain that feels that they can't question a doctor's judgement/orders and yet we can! I hope your meds get sorted, I hope you get to have an MRI (I had a "normal" one without contrast which I will be jumping up and down about, I want to know if this is a blood vessel which may warrant an MVD or whether this is the nerves themselves) and I hope that your family understand.
My daughter is 14,shes seen me sick ever since she can remember.Having heart attack and strokes.Living with firbromyalgia,always in pain.Now since ive been diagnose with tn,she doesnt leave the house,because im having seizures now,My daughter lost her only friend she had,i think her friend doesnt like seeing me in pain,now wont come to our house.I feel like I ruined my daughters life and my daughter said mom,your not.I love you mom,so that does make me feel good.I finally found out what causes my TN,after being admitted in the hospital in icu.I was born with an extra blood vessel on my left side,thats where my tn is.Im on neruontin too.At first I didnt have much side effects until I went up on it,my heart rate goes way to fast,so I went back to my low dose,Im still in alot of pain,but im handling it.I hope your family is understanding like mine.Take care of yourself.Ill be praying for you
I completely feel you!!! I am a nurse as well and have two young kids(2 and 3)...I'm on trileptal 2x a day right now on 1500 mg, with plans to increase up to max dose (2400 mg) by 600 mg every week! I just finished a mederal dose pack with hopes that maybe there was some swelling causing my recent flair ups, but my biggest issue is that I'm not sleeping at all! I can get maybe a half hour of sleep before getting woken up by an attack....its awful....dr gave my valium script, but I'm working over 56 hours a week and with my kids if i take the valium i will never spend anytime with them, and all they ask for is their mommy back...it's heart breaking...i think today as soon as i get off the kids are just gonna have to stay with daddy and i will hopefully get some rest.
To be honest, I'm not really having significant side effects from the Trileptal, a little tiny bit of grogginess the first day with an increase, but it seems to pass pretty quickly. My dr. knew I was in the healthcare profession which is why he said he picked this med specifically. Best of luck with all of this...I know I'm ready to pull my hair out, but gotta just tell myself to keep on going.
Hello. I'm less than 5 months into my TN and I absolutely understand why you are sick of it. Pain and side effects from meds are not a great time. I don't have small children anymore so I can't claim to understand what additional stress that brings into your situation. Being a nurse and thinking about your kids the way you do tells me that you are a caring person and a great mom. Because your kids see you in pain and might remember you being in pain when they were young doesn't mean that they are going to think that you weren't a great mom. During your times when you feel better, do special things with them.
We all react differently to different meds. I referred to myself as "zombie boy" when I was on neurontin/gabepentin. For me, Trileptal has had less side effects but they are definitely there and still don't allow me to be able to seek my next consulting contract or drive a car sometimes due to the fog, memory issues, etc.
After a miserable day yesterday, I appeared to have a break last evening and suggested to my wife that we go see the Batman movie. We have a phenomenol relationship but I am still afraid that I am letting her down by not being as active as we were just 5 months ago. She still doesn't know that in the middle of the movie I had a bunch of stabbing pains in my forehead. Fortunately the noise of the movie was louder than me making my grunting noise each time one hit. She just remembers that we enjoyed going out to the movie.
I don't feel so alone anymore...and you are confirming what I was thinking...most Doctors have zero to a slight grasp on what we are actually experience with "real life" TN.
How can we communicate clearly and effectively so they understand? Mine is so busy telling me HOW I feel and HOW I will feel on a certain med. that she hears nothing I say. Seeing a new Neuro next Tuesday-YEAH! Praying for better experience and listening skills from the new one. He ranked high on "Health Grades.com"
Thanks for sharing- what a nightmare in the ER you had!!! Hope you're able to get a new Doctor instead of the idiot:-) I hope you tell him where it's at!
How does your work/work schedule react to your needs when you have to change meds and need some time to adjust and see how they are going to effect you?
Porcelina said:
I fit the bill - a mother and a nurse! You sound just like me when I was on tegretol (am now on gabapentin and don't get the brain fog with it but I know how it feels!). I think it's worse being a nurse too (I'm a pediatric nurse) because we always know the worst things that can happen as well as expectations can be higher I guess. I have preschoolers and have to run into my bedroom in a bad attack so they don't see me in pain. I also get pretty grumpy when sore :( Tegretol put me in hospital, I had a pathetic encounter with a neurologist as an inpatient who argued it wasn't the tegretol causing my neuralgia in my arms (so bad I had to sit in the ER with my arms in the air, putting them down on anything was like razors cutting me), the medical consultant changed my meds and it relieved it so the neuro was so wrong (he also said that it's not TN due to pain lasting more than few seconds - wtf?!). I am seeing that idiot again next week - not sure he realised I was a nurse so look out! ... we do kind of hold the power there - nurses armed with info and we have the guts to fight for our rights as patients. So you can take heart in that fact, imagine a patient in pain that feels that they can't question a doctor's judgement/orders and yet we can! I hope your meds get sorted, I hope you get to have an MRI (I had a "normal" one without contrast which I will be jumping up and down about, I want to know if this is a blood vessel which may warrant an MVD or whether this is the nerves themselves) and I hope that your family understand.
Thanks Brad- For all the encouragement. Blessings to you...
Brad said:
Hello. I'm less than 5 months into my TN and I absolutely understand why you are sick of it. Pain and side effects from meds are not a great time. I don't have small children anymore so I can't claim to understand what additional stress that brings into your situation. Being a nurse and thinking about your kids the way you do tells me that you are a caring person and a great mom. Because your kids see you in pain and might remember you being in pain when they were young doesn't mean that they are going to think that you weren't a great mom. During your times when you feel better, do special things with them.
We all react differently to different meds. I referred to myself as "zombie boy" when I was on neurontin/gabepentin. For me, Trileptal has had less side effects but they are definitely there and still don't allow me to be able to seek my next consulting contract or drive a car sometimes due to the fog, memory issues, etc.
After a miserable day yesterday, I appeared to have a break last evening and suggested to my wife that we go see the Batman movie. We have a phenomenol relationship but I am still afraid that I am letting her down by not being as active as we were just 5 months ago. She still doesn't know that in the middle of the movie I had a bunch of stabbing pains in my forehead. Fortunately the noise of the movie was louder than me making my grunting noise each time one hit. She just remembers that we enjoyed going out to the movie.
Vicki...that's good news about how your children feel looking back. I feel more hopeful.
You're right, I'm angry and probably even more scared, of what the future holds. I'm trying not to let my mind wander far from today.
So sorry you have MS - sounds like you have a family that loves you...that's the most important thing.
Vicki Dvorak said:
Aw, I understand how you feel, Laurieanne. I get angry too...not to mention scared about the future.
My TN pain started when my youngest was 18 but I've had MS since he was 10 years old and it broke my heart that I couldn't be there for them as much as I wanted to be. I have three kids, though, and all three of them reassure me that they always felt I was there for them, even though I was so sick.
Big hugs to you. Hope you'll get over this flare up soon!
thanks so much for sharing. How do you manage so many hours at work! and have preschooler's and a husband and TN. I'm exhausted just reading about your life!!! How do you do that seriously and deal with the effects of meds etc. yours must be working far better than mine!!! All the best to you...hope you catch that time alone for yourself:)
Meghan Sinclair Thornton said:
I completely feel you!!! I am a nurse as well and have two young kids(2 and 3)...I'm on trileptal 2x a day right now on 1500 mg, with plans to increase up to max dose (2400 mg) by 600 mg every week! I just finished a mederal dose pack with hopes that maybe there was some swelling causing my recent flair ups, but my biggest issue is that I'm not sleeping at all! I can get maybe a half hour of sleep before getting woken up by an attack....its awful....dr gave my valium script, but I'm working over 56 hours a week and with my kids if i take the valium i will never spend anytime with them, and all they ask for is their mommy back...it's heart breaking...i think today as soon as i get off the kids are just gonna have to stay with daddy and i will hopefully get some rest.
To be honest, I'm not really having significant side effects from the Trileptal, a little tiny bit of grogginess the first day with an increase, but it seems to pass pretty quickly. My dr. knew I was in the healthcare profession which is why he said he picked this med specifically. Best of luck with all of this...I know I'm ready to pull my hair out, but gotta just tell myself to keep on going.
alphadunn, Thank you for the encouragement...my kids are becoming more flexible, I'm starting to see. It's my husband I have to keep reminding (to say ) if everything works out we're going to do this or that. He tends to make it a solid statement..i'm reminding him to tell them it's a possibility:)
alphadunn said:
My oldest son is 20 and has watched me go through this for fifteen years. My 7 yr old and 8 yr old are also very aware of my pain. They all help me during my painful times and we all have wonderful times when I am doing great. It is known that plans may change. My kids have been very flexible.
I am so sorry you have to travel this path. I was just diagnosed this past spring with TN and share your frustrations. I hate being the object of pitiful glances and smiles. I may be medicated but am not stupid. I am aware when I can’t find the right words or walk into a chair. I am so thankful for a supportive husband. He is the best " nurse " ever. I pray you will be enfolded by a group of wonderful people. TN will not define us!
I'm glad you can relate to how I'm feeling...i feel less alone (and less crazy). I do have a great supportive husband and family and a network of friends and church. So I'm not alone..it's just none of them can really understand...because they don't have TN. But they do try...and I appreciate that.
Patty said:
I am so sorry you have to travel this path. I was just diagnosed this past spring with TN and share your frustrations. I hate being the object of pitiful glances and smiles. I may be medicated but am not stupid. I am aware when I can't find the right words or walk into a chair. I am so thankful for a supportive husband. He is the best " nurse " ever. I pray you will be enfolded by a group of wonderful people. TN will not define us!
maybe we should start a nurses group & figure out how to educate the medical community!!! as a nurse, I’m continually trying to second-guess everything. makes me crazy but feel i have to. I don’t have kids at home anymore, but working is a HUGE issue. the med s/e are better than intolerable pain, but so frustrating. and pain is never far away. maybe we do a collage of everyone’s faces & label it “the faces of pain: the worst pain known to medical science:the suicide disease.”. Red, let’s do a PSA! and not one that shows at midnight on some obscure cable channel.
My boss is on holiday at the moment but I am going to have a meeting with her to see about dropping some hours (I work 1x 12hr shift one week and 2 the next, would rather it be one shift a week). She has been fantastic through when I was in hospital with those side effects and my sick leave while meds were coming right. It's a good thing I have over a months worth of annual leave saved up in case I need it. When I needed to call a hospital duty manager to take a sick day every single one of them didn't question when I said I had TN. One of them even had TN for a while (I assume from an injury, he has come right) so he was very sympathetic.
I think a nurses group would be awesome!
Laurieanne said:
Thanks for sharing- what a nightmare in the ER you had!!! Hope you're able to get a new Doctor instead of the idiot:-) I hope you tell him where it's at!
How does your work/work schedule react to your needs when you have to change meds and need some time to adjust and see how they are going to effect you?
Porcelina said:
I fit the bill - a mother and a nurse! You sound just like me when I was on tegretol (am now on gabapentin and don't get the brain fog with it but I know how it feels!). I think it's worse being a nurse too (I'm a pediatric nurse) because we always know the worst things that can happen as well as expectations can be higher I guess. I have preschoolers and have to run into my bedroom in a bad attack so they don't see me in pain. I also get pretty grumpy when sore :( Tegretol put me in hospital, I had a pathetic encounter with a neurologist as an inpatient who argued it wasn't the tegretol causing my neuralgia in my arms (so bad I had to sit in the ER with my arms in the air, putting them down on anything was like razors cutting me), the medical consultant changed my meds and it relieved it so the neuro was so wrong (he also said that it's not TN due to pain lasting more than few seconds - wtf?!). I am seeing that idiot again next week - not sure he realised I was a nurse so look out! ... we do kind of hold the power there - nurses armed with info and we have the guts to fight for our rights as patients. So you can take heart in that fact, imagine a patient in pain that feels that they can't question a doctor's judgement/orders and yet we can! I hope your meds get sorted, I hope you get to have an MRI (I had a "normal" one without contrast which I will be jumping up and down about, I want to know if this is a blood vessel which may warrant an MVD or whether this is the nerves themselves) and I hope that your family understand.
Exhausted doesn't begin to explain how I feel...I'm lucky enough that my mother lives with my husband and I...along with a couple friends of mine crashing on the couch...my house is the place where everyone winds up when there's no where else to go....I may have jinxed myself with the lack of side effects I mentioned yesterday, because today was my increase day, and I can hardly hear...I feel like I'm in a bubble right now and last night wasn't the easiest either...my husband had no problem with taking the kids, but I had a terrible attack that left me in tears while he stood there like I was just making the whole thing up...I'm not sure if it was the pain, the meds, the combination of the both, but all I could do was sit on the steps and cry :-( Working all these hours is def catching up with me and quick too...I guess I should mention that I'm a home health care nurse that's with one family who is aware of my situation and trying to be as supportive as possible. Mom loves me as a nurse and caregiver of her child, so she's being as helpful and accomadating as possible, if I need to leave early one day cuz of pain, she lets me make up hours on another shift. She understands good days and bad, because of her son, and just wants me to be as comfortable as possible. She's definitely more understanding than my husband! Hope you have a good day Laurieanne!
Laurieanne said:
Hi Meghan,
thanks so much for sharing. How do you manage so many hours at work! and have preschooler's and a husband and TN. I'm exhausted just reading about your life!!! How do you do that seriously and deal with the effects of meds etc. yours must be working far better than mine!!! All the best to you...hope you catch that time alone for yourself:)
I'm glad your Mom is so supportive. It sounds like your schedule is a bit flexible...if it is that's a blessing.
Mine is fixed and I work in surgery...loud, with all the equipment we use. Cold air flowing over my face -due to a standard air exchange of at least 15 times an minute. face mask's on & off all shift long, bright florescent light, and the need to be acutely aware of the needs of the surgeon, anesthesiologist, scrub tech. assistant surgeon...basically anyone in the Operating room I'm assigned to. UUUGH!!! Oh Ya I forgot the surgical hat putting pressure on my head for 8-10 hours!!! I'm om a brief med leave to adjust to meds...I don't adjust well/fast. Sorry just venting,because no neurologist sees that this occupation is hard to maintain with decreased reaction time and foggy head from meds, pain & fatigue. So frustrating!!!
Anyway thanks for letting me vent. I really hope your able to adjust to your increase within a few days. we all need a good cry once in a while...even if we don't know why we're crying. Glad you have your Mum:)
Meghan Sinclair Thornton said:
Exhausted doesn't begin to explain how I feel...I'm lucky enough that my mother lives with my husband and I...along with a couple friends of mine crashing on the couch...my house is the place where everyone winds up when there's no where else to go....I may have jinxed myself with the lack of side effects I mentioned yesterday, because today was my increase day, and I can hardly hear...I feel like I'm in a bubble right now and last night wasn't the easiest either...my husband had no problem with taking the kids, but I had a terrible attack that left me in tears while he stood there like I was just making the whole thing up...I'm not sure if it was the pain, the meds, the combination of the both, but all I could do was sit on the steps and cry :-( Working all these hours is def catching up with me and quick too...I guess I should mention that I'm a home health care nurse that's with one family who is aware of my situation and trying to be as supportive as possible. Mom loves me as a nurse and caregiver of her child, so she's being as helpful and accomadating as possible, if I need to leave early one day cuz of pain, she lets me make up hours on another shift. She understands good days and bad, because of her son, and just wants me to be as comfortable as possible. She's definitely more understanding than my husband! Hope you have a good day Laurieanne!
Laurieanne said:
Hi Meghan,
thanks so much for sharing. How do you manage so many hours at work! and have preschooler's and a husband and TN. I'm exhausted just reading about your life!!! How do you do that seriously and deal with the effects of meds etc. yours must be working far better than mine!!! All the best to you...hope you catch that time alone for yourself:)