Good bye Tegretol XR! LOL

[Crystal11]

Hello everyone. I saw my neurologist earlier this month. We discussed my medication list, I hate to say- and I requested to be taken off of tegretol XR which I have been wanting to get off of. I have been told over and over "One med isn't working Crystal. You will most likely have more seizures if you stop Tegretol." Then I heard "You have a chance of having a Grand-Mal seizure if you aren't careful with you meds and if you only take one. Your seizures aren't in good control."
Even though I heard this- I would reduce my Tegretol on my own when I felt good. Went one full month without a seizure- so I reduced my Tegretol just to start having drop attacks. NO GOOD.
Because I was very stubborn, I did it three more times and it took three more times of drop attacks and worse complex partials for me to understand that its NOT a good idea to be messing around with meds.
SO- my stubborn self, kept asking over and over and over for the next three years to be taken off of meds. But neuro wanted to keep me on it- since we knew that I wasn't allergic to it.

SO- I now take Lamictal 400mg, Tegretol XR 400mg and decreasing, and Keppra XR 3000mg (maxed out) and Propranolol (Tachycardia/PVCs). I will be stopping Tegretol on my birthday! April 14th YAY!!! FINALLY!

I am very hopeful that the new medication combination will work out well. I am working on my sleep and do have a schedule- just a weird one. 3:00 AM-1:00 PM. Oopps..

We talked about surgery and further testing for it- but I'm not going for it right now. I've had 9 surgeries in my life time and don't want another right now.. but maybe later if things don't get under better control.
Because I've had seizures since without much treatment, its going to be harder to control them unfortunately.

Anyway- excited about stopping the Tegretol that doesn't seem to work anymore..

Take care everyone,
Crystal and her guide Umbro

 

[Zoofemme]

I'm with ya on the Tegretol Crystal...I hated that stuff myself. It is the only med I have ever taken that made me fall down and I always felt like I was leaning to one side. Yay for you to finally get off of it!!

 

[Nakamova]

A great way to start off the Spring, Crystal! I hope you feel tons better once you're Tegretol-free.

 

[Cinnabar]

Hi Crystal, I've been on Lamictal (350 mg) and it's worked wonders. I've been seizure free for one year, now. Clonopin works synergistically with Lamictal as it has anti-seizure properties. Just thought I'd let you in on that if you don't already know.

About Tegretol. Medications often loose their efficacy over a period of time and this may be the case with your Tegretol. But in any case, am so glad you're now on Lamictal. In my mind, it's the best anti-seizure med around. Best of luck! Laurie

 

[Crystal11]

Thank you guys for your possitive comments. I have been on Tegretol for 4-5 years now and it just isn't working.

I think the Lamictal is doing great so far. Today was the first day of increasing it for 400mg. Also today is the first day of decreasing Tegretol down to just 200mg. So I am hopful.
I don't know why I have drop attacks now but, Tegretol being messed up because of my stubborness.
I know better now.

Drop attacks are extremly scary. I fell to the left and onto my guide dog who fliped over! I started crying and I didn't even care if anyone saw me. I was more worried about my doggie than my self.
He is fine of course but I was scared.

So I am ready to give the all important med change a try and hope for seizure freedom or at least better control.

No seizures since March 13th yay!
I used to have 20 CPs a day while in college- the worst place for Epilepsy to get out of hand. Interuption left and right! Having to leave classes (embarassing) and sometimes EMS was called during classes and people got a chance to watch everything! Ah- I was embarassed when I found out I had seized for the whole voc. rehab department to see..

When I went recently to the ER I had a seizure (45sec CP) in the ambulance and I was playing with something or figiting rather. But it embarassed me as I heard my name starting to come louder and louder as I became more aware. The EMT lady was very concerned since it was my second seizure in one day.

Anyway- Thank you all for your support and its real nice to hear of stories similar to mine. Great place to discuss issues- great people to discuss things with.

Thank you,
Crystal and her guide, Umbro

 

[dfwtexas]

Great news! Glad to hear you are doing well and have a plan!

 

[Crystal11]

So far so good- no seizures since March 13th. I hope it stays this way. I re-read the script paper the neuro wrote up for me and I messed up! (I am visually impaired and learning to read print with x6 glasses. Now- I was trying to read it and it said to start reducing Tegretol April 15th and then stop it on April 29th. Well I have already reduced it without realizing my mistake! I've been only taking 200mg of Tegretol for the last two days.. Ooopps!!
I am not sure what to do since I've already started the process. I think I need to make a phone call to my neurology office soon and get some advice.
I was so excited to start lower the Tegretol that I didn't pay attention to the instructions that well. My friend usually reads everything to me- I think I need to have her read things if I think I don't understand it well- or see it well rather.
I hope they don't tell me to stay with the original program- I mean it will be done if they say so. But but but... hehehe I don't wanna (pouts) lol being silly here.



Take care everyone
Crystal

 

[Nakamova]

As you know going up and down on the meds can be hard on the system in unpredictable ways. But if you're feeling good, see if the doc will okay you staying at the 200 level for now, and then finishing tapering off of it on the original schedule.

 

[Endless]

Crystal,

I'm happy you are still feeling okay, even with the medication snaffu. Did your doc say you could stick with your *new* reduction schedule?

How's Umbro? Okay?

 

[Crystal11]

Umbro is doing well. He isn't limping or having trouble walking/standing. I am not sure what is going on with him- but he might have a weird yeast infection on his leg that won't go away. Time for meds for him.

I wasn't able to call my neuro- but I am going to have to now. Found out that my Lamictal 200mg's are only 30 of them per bottle. If I take 400mg, then I need 60, not 30. But neuro wrote out two scripts.. one for 30 100's and 30 200's which is all in the process of tapering up on the Lamictal.
I had a seizure last night and was VERY confused for longer than usual. But I've had no smaller ones during the day or any other seizures. No drop attacks- thank God.. those are horrible since I don't have auras with those.

I have Epilepsy Support group meeting tomorrow and will talk to the leader of the group about my surgery discussion with my neuro that made me upset.
But first I need to call my doctor and ask about what I'm supposed to do about my meds.

I could get the two bottles that are avail. for refill- but in order to take 400mg a day, I would have to take two pills of the 100s in the morning and then one pill of the 200mg just to get the amount I need for the day..
CONFUSING... what a mess.

LOL
Crystal

 

[Endless]

It is incredibly confusing. I am ramping up on lamictal, too, and it's a major brain puzzle just to count out my meds. It doesn't help that my doc wrote it out in terms of "1-50" or "1-1/2 100" when my tabs are 25mg. I translated it all into straight mg, then into how many 25 mg tablets. A friend had to check my work. The scarey thing is that I made mistakes. The name brand ramp-up package is incredibly expensive, and my insurance would pay for precious little of it. So I guess confusion is the way it has to be for awhile.

 

[Nakamova]

When I was transitioning from one med to another including halves of 12.5 mg Lamictal (I had to use a razor to cut the 25mg size in half!) I got one of those multi-section, multi-day pillboxes. It really helped.

 

[Endless]

Yes!

I got four of those 4x per day boxes at Walmart. Then I can lay my AEDs for morning, vitamins for lunch, AED's for dinner, more vitamins & other meds at bedtime. They were about $6.50 each. I hated paying for 4 of them, but this way I can lay out a whole month's worth of meds at a time.

I also liked the fancy boxes because they has a little push tab that opens each compartment, so they won't pop open by accident and spill pills all over. I'm having enough trouble sorting pills out now, without having them spill out and all mixed in together unlabled!

 

[Crystal11]

I use a pillbox as well that is locked. It has enough spaces for a full week, 4 times per day. When I was only on one med, I could load that thing with a month's worth of 1 seizure med, and 1 heart medication pill per day.
Now that I'm on 3 seizures meds, 1 heart med I can no longer have as much space avail.
So I use the first two times (morning and afternoon) to put my morning meds in. Then Evening and bedtime for the meds for night time.
Whatever works though- its no good to miss meds at all..

For some reason, I have been sort under my arm on the right side of my chest. I don't know if its just a random thing or a reaction to the Lamictal. It seems that since I increased it by 150mg pills to 200mg for 400mg/day- that its been bothering me.
Last night it woke me up because its sore if I touch it on accident.

Anyone else out there on Lamictal noticing this?
Supposedly its a rare, less common side-effect of Lamictal.
I hope its not- because I don't know what I would take then.

Crystal

 

[Nakamova]

Hi Crystal --

Is your arm sore like a pulled muscle? Or sore like a bruise? Or sore like a blister or boil? Can you feel a bump or swelling? When I was first transitioning onto the Lamictal I felt that my skin was sweatier than normal. And it may or may not have been related but I did develop a tiny painful boil (behind one ear), which I got rid of by applying a hot washcloth. Don't know if this seems like what's going on with you.

 

[Rae1889]

wait... you have a rash?
you didnt actually say. you said you have been sort under your arm. right side of your chest. if its a rash get checked out. not good. this could turn into Steven Johnson Syndrome

 

[Crystal11]

No no-- no rash at all, no other symptoms, no other glands swollen, nothing by my jaw or neck or behind my ears.
Just on the right side under my arm on the side of my chest..
It is not swollen, its not a hard bump or extreamly swollen. Its sensitive by touch and is a sore type feeling. Its only on the right side- not boths sides.
I did call my neuro and I have to wait up to 48hrs to hear from the nurse on call. Kinda sucks that I have to wait... I want to know what's up now..
(sigh)
I just got my Lamictal 100mg and Lamictal 200mg pills today from the pharmacy- so I'm not going to decrease or stop. Seizures have resulted with I messed with meds. I am very STUBBORN and would change things up over and over again until I learned the hard way and now have drop attacks with a reduction of Tegretol XR.. I'm still on it but its reduced and because I take Lamictal, no troubles.

So I'm sort of confused but I research last night, where exactly the lymph nodes and glands are. There is a system of glands for each system of the body- crazy how many there are.
There is 4 under the arm and one close to the breast- where mine is sensitive.. If I don't touch it or mess with it- I don't hurt. So I'm confused on if its related to "that time of the month" or its a reaction from Lamictal..

Take care, Crystal

 

[Endless]

Hi, Crystal. I'm concerned about your sore spot. Do you think it is a sore lymph node? If so, you need to get in to see your doc. It could be a number of things, related to the epilepsy, Lamictal, or not. He/she will get it figured out.

 

[Crystal11]

I'm keeping an eye on it.
I have called neuro office and of course had to leave a msg with the nurses. But no one has called me back- so that means I get to call again tomorrow! Yay..
If I don't get in to see neuro, the I will go to my family doctor. One of them should be able to tell me whats going on.

I really want to give Lamictal a chance in controlling my Epilepsy/complex partials.

 

[Endless]

i'm glad you are going to the doc.

I hear you about wanting to give lamictal a chance. I'm puttnig all my easter eggs in that basket. My doc says that if he had epilepsy, it is the drug he would want to be on. It has the fewest long term side effects, and pretty much doesn't impair your cognitive ability the way some of the other meds do.

It just takes so lonnnnnnnnnng to ramp up on this stuff.