Ths is my first post to this site. I'd like to say thank you to everyone who particiaptes here, I have learned a lot of valuable information.
I have just started taking larger doses of Tegretol (working my way up to 1200 mgs a day) and am experiencing some side effects - dizzy, nauseous, sleepiness, among others. I'm having a really hard time concentrating at work. I'm a circulation manager for a newspaper and am extremely busy and need to be on my game. I find I'm forgetting things in meetings, overwhelmed by pain during the day and have been pushing things off because I'm in too much pain to deal with it. I know I am not doing my job to my best ability. I have alway prided myself on my work ethic - now it's a struggle just to get out of bed every morning.
I used to skip the dose of tegretol in the mornings because of these side effects but was told by my neuro to take everything as prescribed if I want it to help! I am also taking a muscle relaxer (not during the day - I think I'd be sleeping at my desk!) and something for pain.
I guess I'm wondering how others manage working and dealing TN. I'm starting to wonder if I will be able to continue with my job and that's a very scary feeling.
I'm very thankful I found this site, even if I stay in the background it helps just to read others comments and know I'm not alone in this.
Welcome Steph. I work a couple of days a week and have alot of memory problems too - just on a different drug than you, but all anticonvulsants seem to have this side effect. I have learned to put check marks in place to correct myself or find my errors. However, not everything can be done this way. I double and triple check myself. I am an accountant with a very understanding boss and staff. I make alot of mistakes and hate this whole memory lapse thing. I keep wondering if I should be tested for early onset Alzheimers or could these darn drugs cause this condition. Wish I had better advice. Tell your boss and coworkers about your condition and the drug side effects. Tell them that the pain feels like have 3 abcess teeth pulled without an anesthetic and maybe they will be sympathetic and understanding.
I was diagnosed with TN 5 months ago and have not been able to work at all. I have been on sick leave and have just found out that I have been approved for long term disability. My accounting job will be held for another 19 months if I am able to return. I worked for a hospital for over 21 years and belong to a good union so I feel very fortunate. I am struggling with something else that the doctor's cannot figure where I am extremely weak and I am limited physically with what I can do in a day.
I have countless intermittent stabbing pains as well as 24/7 burning/pressure pain and I could not imagine going to work and then coming home to my 3 kids and husband. My hat goes off to all of you who are managing to go to work.
Welcome to this site Stephanie -- it has been a godsend!
I have let my department at work know what is going on. It's kind of hard to hide it when the pain stops me dead in my tracks. I have both constant burning pain on the right side of my head and the lightening strikes on and off - the last few months have been more on than off.
Thankfully my family has been a huge support. My husband does the cooking and doesn't mind when I come home and go directly to bed. I do have 3 very active kids also so I try to go to as many activites as I can. It's absoltely exhausting.
Are you finding the tegritol to be working? How long have you been on it? What dose are you at right now? Do you find that your math skills have diminished since being on tegritol? I can't spell or do math like I used to. I do not tolerate pills well but have found I am dealing with the drug better than in the beginning. I am on 800 mg and it takes 95% of the pain away but I can't go outside if there is even a slight breeze or talk very much still or the burning pain will return. My kids are great ventriloquist readers but my husband is quite deaf so the kids quite often repeat what I say.
When I was waiting for the tegretol to do it's magic in the beginning I could not eat (drank room temperature food thru straw), talk, sleep, even lay down horizontally (head felt like it would explode), go outside (was winter here) or brush my hair. I would rock myself and hum all day to cope with the pain. If it was not for tegretol I do not know if I would be here today. As much as I hate how the tegretol makes me feel I am so frightened that one day it will stop working and I just pray that there will be a cure for this one day so that all of these beautiful people who suffer with this will be free to live.
stephtoffey said:
I have let my department at work know what is going on. It's kind of hard to hide it when the pain stops me dead in my tracks. I have both constant burning pain on the right side of my head and the lightening strikes on and off - the last few months have been more on than off.
Thankfully my family has been a huge support. My husband does the cooking and doesn't mind when I come home and go directly to bed. I do have 3 very active kids also so I try to go to as many activites as I can. It's absoltely exhausting.
I'm sorry you have gone through so much. I feel the same way - I hate how tegretol makes me feel but I would rather put up with it than feel like half my head was dipped in acid. I am now taking 600 mg a day. I have had slight relief so far with it - a few weeks ago I couldn't even tolerate the weight of my hair - I went to far as to beg my husband to cut it all off - probably one of the few times I wasn't mad he didn't listen! I was taking 200 mg for about 6 months but the neuro said at that low dose it wouldn't help. I bump up the tegretol again tomorrow - as soon as I almost start to feel I can handle it it jumps again! I guess another Saturday spent in bed.
I have a hard time spelling - no problem with numbers thankfully. Spell check has become my new best friend - I have gone from quick typing to pecking out letters on the keyboard. My mind has forgotten how to communicate with my fingers.
It is a horrible thing isn't it. I hope you find this site to be as helpful as I did --it helps with the loneliness of this disease because it is so hard for people to understand it. When you said 'As soon as I almost start to feel I can handle it, it jumps again!', that is exactly the way I am; that is why I fear this demon so much. I hope you get more relief soon -- again I don't know how you are managing everything. Stress is a trigger too so remember we have to accept we can't be wonder woman anymore. Take care!
stephtoffey said:
Collette,
I'm sorry you have gone through so much. I feel the same way - I hate how tegretol makes me feel but I would rather put up with it than feel like half my head was dipped in acid. I am now taking 600 mg a day. I have had slight relief so far with it - a few weeks ago I couldn't even tolerate the weight of my hair - I went to far as to beg my husband to cut it all off - probably one of the few times I wasn't mad he didn't listen! I was taking 200 mg for about 6 months but the neuro said at that low dose it wouldn't help. I bump up the tegretol again tomorrow - as soon as I almost start to feel I can handle it it jumps again! I guess another Saturday spent in bed.
I have a hard time spelling - no problem with numbers thankfully. Spell check has become my new best friend - I have gone from quick typing to pecking out letters on the keyboard. My mind has forgotten how to communicate with my fingers.
Hi Stephanie, I wanted to say that I used to work full time. Now I work part time. I tried taking Tegretol and it was too much for me. It caused me to have symptoms of Glossopharyngeal neuralgia,(which is weird because that is what they use to treat it)but anyway. ..Now I am on it's cousin Trileptal and am doing pretty good with it. The side effects are not as bad as Tegretol. I take 1200mg per day. I hope that you can continue to work. I commend anyone who can work full time with this. Best wishes. Min
Steph, I work full time. It is almost impossible to claim disability in the UK just now. They are talking about sending amputees back to work so I guess I will never get it!
I do find it difficult and I know it’s harder than it used to be. But I have forgotten now what I was like before. I just know that I could do Mathis and spell so much better. I have to log in here with Google now as it has a built in spellchecker or you would think I was Chinese or something!! I know I am lucky, but not quite as lucky as my colleagues!
I work full time as an assistant manager at a hotel. I have to struggled since my starting of TN 3 months ago. I feel spacy from the tegretol and jittery from the pain meds, but I have to take the pain meds to be able to make it through the day at work without locking myself in the bathroom and crying. I know what you are going through and for me it has been a constant struggle as well. I have no real advice for you, because im having the same dilemma but I do give you my complete sympathy. I hope it gets better for you!
One of my very first posts on this site was about working with TN. I have a hard time too — and it’s a small dose in comparison to some. I wish I had a great piece of advice to offer.