Anyone have experience with this medicine?
I was just prescribed it for trigeminal neuralgia and noticed it's also used to treat seizures, so figured some of you seizure peeps may have experience
with this med? Some of the lit out on the net is freakin' me out about this medicine! Suicidal thoughts. Extreme fatigue. Watching platelet counts and
white blood cells. Yikes! 
I'm so nervousy about
adding this med on top of Topamax. You know? Until Topamax, I'd never experienced seizure meds - not too keen on taking 2 of them. But if it helps keep my
face from feeling like a pin cushion, I have to do what I can.
Anyone out there? Have you taken this stuff and survived all the "awful" side effects the internet is freakin me out about???
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Tegretol
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 willocat |
Tegretol |
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Posts: 161 (06/27/08 07:04) |
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spanielsoftee |
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Posts: 2443 (06/28/08 01:21) Moderator |
Hi Willo,
Just remember that you will find the worst case scenario out on the net, as well as in the packaging on any med. They have to put it out there because at one time or another somebody has experienced that particular side effect. It doesn't mean you will. You possibly could, but if everyone did, nobody would take it! I took Tegretol for a while for a neuropathy years ago. As a matter of fact, I had a complete pharmacy in my drawer for that particular condition. I remember the fatigue. But that seems to be a side effect that a lot of drugs cause that wears off once our bodies adjust. My neuro just decided to move in another direction and we stopped it. Don't panic - give it a chance. Your doctor will monitor your progress, do regular bloodwork, etc. With any seizure drug they never prescribe it and leave you wandering in the wilderness! I'm sure our seizure peeps will have more experience on this one and hopefully give you better advice. I just remember it was a drug I took for a while under the watchful eye of my neuro. You never know, this might be just what you need. It has been around for a long time, so obviously it does the trick for many patients. Good luck with this one Willo and let us know how it works for you. And again - don't panic! Hugs, Carol |
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willocat |
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Posts: 162 (06/28/08 09:09) |
I took it last night, before bed as directed. I move up to twice a day in a week. I must say, though, that last night was the first night in a long, long time
that I was able to sleep with being propped up. I even woke up this morning on my stomach, and that hasn't happened in ages. Even my husband was shocked to
find me that way this morning! Usually my throat closes becuase of what must be nerve problems when I sleep and causes breathing problems and I can't sleep
unless I'm propped up. Last night, I slept like a baby. I did linger in zombie mode until 1 am, but I don't blame the meds for this entirely. I should
no better than stay up late playing games with my sister drinking high octance sweet tea. lol I was between buzzed land and lala land. Not a lovely place to be
when you're trying to fall asleep.
Hope tonight is better. And I hope it starts working on the trigeminal neuralgia soon. |
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2ryte |
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Posts: 809 (06/29/08 11:34) |
Hola Willo..Carol is 100% correct--you'll find all of the worse case scenarios out there on the net. Not everyone experiences all of the side-effects these
drugs list (except me, of course!) Tegretol is in the same family as Carbatrol, which I took for three months then dumped it. I complained about the
unsteadiness to Dr. B.E., he did a quick neuro exam and I nearly fell on my face. (you know, walk a straight line, etc.)
Anyway, everyone reactes differently to each med. Yes, your doc will keep an eye on you and will, at some point, do some bloodwork to check your levels and to see if you're having any vitamin deficiency. So I suggest taking a good multi-vitamin if you aren't already. I have a friend who suffers from chronic ear pain (can't remember what it's called) and she is taking Trileptal. If you are experiencing side-effects that are just too much, you may want to suggest that med to your neuro. It is supposedly "gentler" when it comes to side-effects. Remember, as with Topamax, it takes time to adjust to a new med so give it time. I've known people who try a new seizure med and they drop it after a week because they don't like the side-effects. Well, unfortunately, I don't believe there's a med that doesn't bring a side-effect to the party! ;) Great news on you getting some good sleep! Sleep is good. Keep us updated! |
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2ryte |
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Posts: 810 (06/29/08 12:00) |
Ok, since I have lost the ability to Edit, I'll just add another post. grrrr. Anyway, Willo, if you would like some info. re; Tegretol (that won't
scare the dickens out of you,) check this out...
http://www.cigna.com/healthinfo/hw109604.html#hw109606 I received a letter from my insurance co., Cigna, yesterday. I am now, apparantly, without my solicitation, a member of Well informed, a "personalized health improvement program." I was taken aback as they state that, according to their records, I may be "having trouble remember to take your Keppra xxxx mgs" and they offered helful tips, Just For Me! Umm, how would they know whether or not I'm taking my Keppra. They forwarded this information to Dr. B.Eyes' office, too! Exsqueeze me? Anywho, I checked out the site and it's really comprehensive. Check it out! |
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willocat |
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Posts: 163 (06/29/08 07:09) |
Goodness, 2ryte! Are they watching you from the curb? Look outside. Quick. Are there people in dark sun glasses sitting near your house in an unmarked car?
lol How would they know if you're not taking your meds?
I also meant in my previous post - but I guess I had fogged up Topa brain - that I can't sleep unless I'm propped up but now I can sleep NOT being propped up. Also, my throat isn't closed up like it was and it doesn't feel constricted when I try to swallow sometimes. :-) Not sure why it's helping that, but I'm just going to be glad. lol As for the s/e - I'm so tired I didn't notice my daughter climb into bed with my husband and I last night and I slept the afternoon away on the couch today. It was nice. I'm also unsteady when I first wake up and at night when I get up to go potty. But it's not too bad. I can live with these things because I know they will ease up. Being a TopaGirl, I'm not new to this seizure med stuff and know it's just a ride I have to linger on until the bumps calm down. It will smooth out eventually. But it seems to be doing its job - which is what we were helping it would do. |
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2ryte |
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Posts: 811 (06/30/08 12:23) |
Ha ha! When I read their letter I was all, "Big Brother is watching me from somewhere! Agh!" The only thing the hubster and I can guess is, since I
get my meds through Cigna, perhaps they're keeping count somehow? But that actually doesn't make sense, because I JUST filled a three month
prescription in May! So obviously I'm taking the stinkin' Keppra! Very strange.
Willo...that's awesome news about the sleeping and swallowing! YAY! Sorry you're so tired...I hear ya, girl. Most days I'm zombie-like so Dr. B.E.'s has dropped the Keppra dosage a few mgs. to hopefully make me less useless! Ha! Oy, the things we go through to try to maintain a semblance of a normal life. I hope the Tegretol keeps up the good work! |
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CircleCity |
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Posts: 3688 (07/01/08 12:23) Administrator |
Sheila, does Cigna have access to your blood labs results? I'm not sure why you cannot edit your own posts. You should be able to. My posts have an
"edit" option on the left and below my photo.
Willo, I cannot imagine how wonderful it must feel to get that deep restful sleep you've missed for so long. Everybody has given great advice. Your attitude is outstanding. I hope things continue to improve for you.
Last Edited By: CircleCity
07/01/08 12:25.
Edited 1 times.
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2ryte |
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Posts: 812 (07/01/08 02:21) |
I'm not sure if Cigna has access to my bloodwork. But the last time I had it checked in the clinic (not in the hospital during the VEEGs) my doc said my
levels for both Topamax and Keppra were "near perfect." So who knows?! Of course the levels would be LOW while I was in the hospy because my meds
were reduced!
As for editing...remember, YUKU no likey Mac. If I were to go to the PC, I'm sure I'd be able to do what I want. That's the only way I can mess around with my YUKU page. Willo, I hope you're still sleeping like a rock! (wait. rocks don't sleep.) ;) |
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willocat |
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Posts: 164 (07/01/08 02:44) |
I had to have bloodwork done when they put me on the Tegretol and have to get them redone in two weeks.
I hate that inconvenience. The doctor doesn't think I'm having seizures, he thinks it's either related to my complicated basilar artery migraines or some inner ear disorder causing it. He's sending me to some ear specialists on the 9th for a battery of tests - all of which do not sound like fun. They'll determine what's going on, I guess. All I know is that I still can't go back to work until they figure it out, so they better hurry!!! Although, I'm really leaning towards this being something to do with the migraines or seizures because I haven't had an episode of near syncope since the Tegretol began helping the Tigreminal Neuralgia pain diminish, and I haven't felt this good in long time. Other than being so darn tired. lol But we'll see... on the 9th! lol |
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2ryte |
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Posts: 813 (07/02/08 04:58) |
Well, I don't think your doc should rule out seizures until after you've had an EEG and MRI. However, EEGs really aren't always effective as a
diagnostic tool because in a lot of cases, you have to be experiencing some sort of seizure for the EEG to pick it up. I've had three EEGs and only one was
abnormal. (that was after my 'grand mal.)
What's most important is your history. As I mentioned in the migraine forum, it is muy importante to keep some kind of journal. Write down everything you're feeling, smelling, hearing if it's out of the ordinary. Jot down what you were doing at the time you experienced strange sensations, like deja vu. Everyone has feelings of deja vu once in awhile, but for those with a seizure disorder, it can occur much more frequently. Question: have you ever had a Tilt Table test for the syncope...or is that how you found out you have syncope? I'm glad to hear you're feeling so well!! You must be all, "Huh? I actually feel good today? What's up with THAT?!" :) Let's hope the Tegretol keeps making you feel better and better! |
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- The On Ramp ~ Start Here
- Site Policies
- Our Best Suggestions
- Announcements
- Behavior Management
- Migraine Headaches
- Nerve Pain/Fibromyalgia
- Seizures
- Weight Loss
- Road Rage
- The Cafe
- Creative Writing Area
- Expressions of Faith
- Encouraging Thoughts for Bad Days
- The Game Room
- Comedy Central
- Treats from the Kitchen
- Helpful Links
- Helpful Hints and Recommendations
- File Cabinet
- Potholes and Sudden Stops ~ Female Problems,Birth Control, and Pregnancy
- Erogenous Zone ~ Extreme Caution Urged
