Starting Carbamazepine Today - Scared but hopefully;0)

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1

Thank you all for your carbamazepine experience and feedback.

Although I am scared to death to take the carbamazepine, my excruciating TN pain is just not giving me a choice at all, so I am going to have to bite the bullet and take it.

I think I have been in denial, in terms of thinking my TN will just magically go away, like it has at times for others. It is clear to me that it isn’t going anywhere.

My fear of the meds is not being who I am, which is a VERY ambitious career woman, wife and mother who thrives on any challenge thrown my way. I am a successful SR. Marketing consultant with a multi-billion dollar corporation, who has blown away every marketing objective given to me, and continues to hold many top sales records within my company. I am married to a handsome firefighter, have two precious children, volunteer as team mom for my son’s football team, am writing a novel, love to acrylic paint, and enjoy singing from time to time.

I tell you all of these things, because the TN itself, is affecting every single one of the things mentioned above. I feel like I am losing myself, and the very things that contribute to my unique identity.

"Normally, I am one of the most positive and social people you would ever meet. I always have a “can accomplish anything attitude”, because I feel that anyone genuinely can. But, I am struggling with the accomplishment of making this TN go away without meds, SOOOO, all I can do is take the damn medicine. With that said, I am extremely excited for it to work, and am very hopeful that it will based on the research that I have done on the medication.

I have about three weeks of vacation time built up, so am going to take a week off to allow the effects of the meds to kick in to see how well I function on it. Not the funniest way to use my vacation, but if the pain stops, I will consider the time off a true blessing and have no regrets:0)

I am getting ready to start the real fight in being pain free, so that I can quit hiding from my life and those I love, in an attempt to avoid scaring or upsetting them.

Thank you for allowing me to get that off my chest.

Wish me luck!

Socially Yours,
Sarah

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The lower the dose you can manage on, the easier it will be. I wasn't as forgetful and space-out until I got up to around 800mg a day. NOW I am on 1200mg a day. I had no choice but to go up because the damn breakthrough pains were really bad. Remember to taper up slowly when or IF you have to increase. I can help you out with that if the time comes. :-)

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Thank you Donna, I appreciate your help more than you know. I started 200mgs at 6pm last night and took another 200mg this morning.i am feeling a lil out of it, almost like I M slightly drunk… Is that normal? I have only had 1 attack so far today, and normally have had 5-6 by now. Does the Carbamazeapine work that quick???

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Hi Sarah, wouldn't it be wonderful if we could have a magic pill that would take our pain away and leave our mind intact. Oh I wish I could find one, but lets be realistic here so would every one on this site.

Only taking one week off of work is such a short time for your body to get used to the side effects.

I was diagnosed with TN January this year and although I am now 63 years , my working and home life was similar to yours and when I realised I couldn't remember the middle names of my 5 boys was the point I decided I had to come to terms with what was happening to me. There is no point in putting a candy coat on this and I don't think you would want this.

Okay, so whats worse the pain or the meds, the pain is of course, and we will take what we can to get rid of this incredible debilitating pain. Hide under a blanket and cry type of pain. Scream because we cant think of the words we want to use type of pain.

I take Lyrica and know that soon my meds must go up. Yesterday was the very worse pain I have ever encountered, but it is something that will need to happen to let me function.

Don't be too hard on yourself when this happens. Educate your nearest and dearest so they know what to expect. Most of all stay hopeful that yours will not get that bad and may we all pray for each other. The power of prayer is amazing.

Stay strong, love Lizzie

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Thank you for your honesty Lizzie. You are right, taking the meds are far better than being in constant pain, so I will do whatever it takes to get better. I just wish I could have my cake and eat it too.

My father died of cancer an my mom suffers from severe depression, so I know how ones world turns upside down when those you love are in physical and mental pain. I know how much I love my parents and that I would/have done anything to help them.

I just wish I was secure in knowing that those around me will also be able to understand and handle what we go through with TN. My son and husband have been so supportive, but I can also see that my husband feels helpless, and that kills me, especially because of his profession.

I just want them to continue being happy:0)

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How do you feel today Sarah, are the meds working. I have had a wonderful day so far, I live in Spain so I expect the time line is different. I had breakfast out and have been pain free today. Hoping to get to the hairdressers tomorrow!!

Spoke to my children in Uk about TN, but think its best to send them to this site for information.

Hope you have a blessed day today.x

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I had 4 attacks yesterday which is an improvement from the 15-20 I have been getting, so I’m hopeful.

The meds are making me loopy. I am hoping that the side effects will eventually go away. The doc wants me to up the carbamazepine to 200 mg a day due to the breakthrough pain.

I had an attack in my doctor’s office waiting room this morning. Thank goodness no other patients were there. I think I scared the receptionist, but the nurse there understood TN, so tried to explain it to her. I liked the fact there was a calm influence in the room.

I hope you have a pain free day today Lizzie… and everyone else too;0)

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You should adjust to that dose fairly quickly. And yes, it CAN work that quick. I took my 1st 100mg dose one evening and by the time I woke up the next morning, it was GONE. I tapered up from 200mg a day to 400. Then I had to increase to 800, then 1000, then 1200. When I first went up to 1200, they were going to have me take it as 600mg twice a day-I was so DRUNK AND SICK all day. I really shouldn't have gone to work, but I did. And as soon as I got home, I went to bed and stayed there til the next morning. And I only took 400mg that night too. This was my hint that I CANNOT take 600mg at a time. So I decided to take 400mg THREE times a day and it helps me function a little better. I am not drunk, but I AM tired and forgetful. Sometimes you have to play with your meds a little so you're not so sick from it.

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Hi how are you doing Sarah, how does it feel on the meds are they working. I have been pain free for 2 days!!!!! even managed to get my hair cut with no after effects. Isn't it glorious when you get some time pain free, Gosh I even painted my nails too. Not going to give in to this and I bet , you won't either. Stay strong and positive.

My friend asked me how I was coping, I said I cry on the bad days and smile on the good ones. Gotta take the meds and make sure the good ones out weigh the bad. I don't care that I forget names and struggle to remember things when the pain diminishes its the best thing in the world isn't it.

How are your children and hubby coping, they are stronger than you think. Hope you have had a good day

love to everyone hope all friends have had a better day today.

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Hi Sarah, I hope the medication has helped.. I've been living with TN for 6 months and have been on carbamazepine for about the same amount of time. I was fortunate that it was diagnosed quickly enough and only had to put up with 2 weeks of excruciating pain. I've been Lyrica which didn't do much aside from almost knock me out. The carbamazepine did act pretty quickly. By the time they took me off Lyrica and put me on carbamazepine, the pain was so bad that I was having Weetabix and milk for all meals. Couldn't chew, couldn't talk. Within a couple of days I was eating normally again.. The first couple of weeks on carbamazepine were pretty rough though. Pain free, but felt like my brain was stuffed with cotton wool. Had this odd feeling that I was detached from myself plus I felt sleepy all the time. My brain was totally fuzzy. My doctor told me it would get better as my body adjusted to it, he was right, I am on 200mg carbamazepine, but with no drowsiness or other side effects.

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Emily,

Thank you so much for sharing your story with me. I am so sorry that you have TN, but am so glad to hear that you are are pain free for now and on a lower dosage of Carbamazepine. I am looking forward to not feeling like a zombie myself real soon.

I am so grateful however to have gone from having up to 20 attacks a day to only 4 attacks in the last 6 days. I am hopeful that I will be completely pain free and side effect free very soon. Keep your fingers crossed for me and I will definitely do the same for you:0)