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Old 10-03-2008, 09:46 AM   #16
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singingirl HB User
Re: Tegretol causing osteoporosis, anyone know?

hi kellyanne - my sincere apologies. i do not know your age or anything about you. i guess when i read your post about taking the med. for nine years, and since i have been taking it for what seems like forever, and i am NOT a youngster, i just assumed you were young, my stupid assumption. sorry for that.

 
Old 10-09-2008, 08:16 PM   #17
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Re: Tegretol causing osteoporosis, anyone know?

Sing, no apologies needed! I thought maybe you had gotten me confused with the original poster of the thread... and just now I looked and saw that couldn't be. Some days I really need to pay more attention! I would be very young to get osteoporosis (I'm 28). I don't have it but am definitely concerned about what the Tegretol could be doing to my bones now, so it is helpful to be aware, I think. It's frustrating to be dependent on medication like this and then to realize later just what it might be doing to the body.

 
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Old 10-10-2008, 09:28 AM   #18
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Re: Tegretol causing osteoporosis, anyone know?

kellyanne - i couldn't have said it better if i tried. very frustrating to be taking this med now that i know what it has done to me over all these years. for me, now, i am just keep on with it. i do take Ezorb, just got my second bottle in the mail, really expensive, but i'm supplementing that with other calcium supplements, etc. take care of yourself! you're young enuf to reverse whatever might be developing, or at least put a halt to it. take care.

 
Old 10-12-2008, 01:51 AM   #19
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Re: Tegretol causing osteoporosis, anyone know?

Hi There
I have been on Tegretol for 13 years, and I too have the same experiences that you are stating about your aura's.
I was told by my neurologist that taking Calcium, and drinking LOTS of milk will help with the side effect of bone loss. I take a multi-vitiman and a 500MG calcium pill every day.
I am only 25, but I think and feel different since I was put on the vitamin. Sounds funny. But it is true.
I, also was on Effexor for anxiety, and found out that one of the side effects is SEIZURES!!! So, obviously I went off of that.
I do not know how much I helped you, but you helped me to know that I am not the only one out there who "wonders" what Tegretol really does after so many years.
Thank you.

 
Old 10-12-2008, 06:28 AM   #20
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Re: Tegretol causing osteoporosis, anyone know?

hey n8tivecenter - glad i could help with anything i might have said. i've gotten much good insight and thoughts reading other peoples' experiences and comments on this website. at least your doctor told you to take calcium for bone loss. i never heard a word about it. if i were you, unless you are getting mucho calcium from your diet, you ought to up your intake of the supplement, depending also on how much is in your multi. as the saying goes, there's never too much of a good thing... in calcium's case, there is. because what your body doesn't absorb just gets eliminated anyway and there's much talk about stone formation from excess calcium. so, at your young age you fortunately don't need to worry about getting more calcium for age-related reasons and menopause, etc., but it certainly must be good to know what you are up against. i wish i knew that when i was 29. That actually is about the age when i started on tegretol! - and i'm in my mid-50s now, yikes! if you haven't already, you might want to read the posts in the osteoporosis board. men and women of all ages post comments about osteop. and how they deal with it.

back to the aura thing for just a minute - can you tell me exactly how you feel when they happen, and when they do, possibly what you are doing at that moment, etc.? thanks!

 
Old 10-12-2008, 11:04 AM   #21
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Re: Tegretol causing osteoporosis, anyone know?

Hey there. Thanks for the reply. Your the only one so far!
As far as the aura's go:
My case is that the left side of my body has less blood functioning due to my Epilepsy. It is hard to explain, it has been this way since my birth. I notice that often after I eat, my mouth (most of the time this happens every month), arm, hand (most of the time, this happens once a week) or leg will fall asleep.
And about 1 year ago, I was just about to go to sleep and I felt that my brain was going into a seizure. I was laying there, and within about 1 minute (this happened twice) my eyes were forced open, I felt NUMB all over, with an out of body like experience. I layed there and prayed REALLY hard, so I was able to think, just not move. And it went away. THANK GOD.
For me when I have seizures, I feel everything. Except for obviously when I am in the process of actually having one. But I feel it before and after. THIS IS THE WORST FEELING I HAVE EVER EXPERIENCED.
So, this is what happens to me on a normal basis.
Let me know if you have any more questions!

 
Old 10-15-2008, 11:01 AM   #22
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singingirl HB User
Re: Tegretol causing osteoporosis, anyone know?

n8tive - that was a great description of what happens to you. good luck with the supplementation, and keep in touch. singingirl

 
Old 10-16-2008, 07:36 AM   #23
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Re: Tegretol causing osteoporosis, anyone know?

Hi Group,

Saturday, October 11, we started a low dose (150 mg B.I.D.) of Trileptal with my twin brother. He was on Tegratol for about 6 years starting in the later 1990's. We switched because his DEXA Scan showed osteoporosis, we were about 37. No seizure med since Tegratol has worked nearly as effectively. I miss those days. Yeh, I know what your thinking ... why not restart? ... too many other events between then and now - we'd have to write a book. Were the events related to switching from Tegratol? Maybe. I wouldn't recommend embarking on the seizure med "switch, search and find" journey hastily. Get the DEXA Scan done yearly. If you have osteoporosis and/or are osteoporotic, then I recommend addressing that with a bone specialist. Why Trileptal? Our neurologist describes Trileptal as a "designer" version of Tegratol, meaning that it acts similarly to Tegratol but with lowered side effects, including reduced likelihood of osteoporosis. So, if you insist on a "seizure med switch, search and find journey", I'd recommend speaking with your neurologist about Trileptal. We ARE seeing some side effects though: reduced urine output; hiccups/belching.

 
Old 10-16-2008, 07:36 AM   #24
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Re: Tegretol causing osteoporosis, anyone know?

Hi Group,

Saturday, October 11, we started a low dose (150 mg B.I.D.) of Trileptal with my twin brother. He was on Tegratol for about 6 years starting in the later 1990's. We switched because his DEXA Scan showed osteoporosis, we were about 37. No seizure med since Tegratol has worked nearly as effectively. I miss those days. Yeh, I know what your thinking ... why not restart? ... too many other events between then and now - we'd have to write a book. Were the events related to switching from Tegratol? Maybe. I wouldn't recommend embarking on the seizure med "switch, search and find" journey hastily. Get the DEXA Scan done yearly. If you have osteoporosis and/or are osteoporotic, then I recommend addressing that with a bone specialist. Why Trileptal? Our neurologist describes Trileptal as a "designer" version of Tegratol, meaning that it acts similarly to Tegratol but with lowered side effects, including reduced likelihood of osteoporosis. So, if you insist on a "seizure med switch, search and find journey", I'd recommend speaking with your neurologist about Trileptal. We ARE seeing some side effects though: reduced urine output; hiccups/belching.

 
Old 10-16-2008, 09:49 AM   #25
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singingirl HB User
Re: Tegretol causing osteoporosis, anyone know?

hey peter - just wanted to say hello and add my two cents into the conversation. when you mentioned trileptal, i immediately did some searching around about it. you're right, it is in the same family as tegretol, the latter being carbamazepine and trileptal oxcarbazepine. i have reached a level of comfort on tegretol, even knowing that it has probably caused the osteop. that i have now been diagnosed with. even tho' i've been taking it for over 20 years, my scan results are practically within the range of osteopenic and not osteoporotic, so since i don't have any of the other god-awful side effects that one can get from these meds other than an occasional breakthrough "aura", i'm going to stick with it and make a daily effort to take the calcium, the highest quality i can find, which for me at this time seems to be Ezorb, and take the D3 supplements, exercise, etc. Like you say, switching and searching, etc., can be worse in the long run. However, i will take your advice and the next time i see the doc for routine labs, etc., i will ask for an opinion about switching to trileptal and see what he says regarding side effects and bone density. thanks for your input!

 
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