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Old 10-13-2007, 03:57 PM #1
Cedar Cedar is offline
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Default meds and levels

Hi I am am on Trileptal 3x day, Keppra 3x day and Lamictal just am. I have been taking themfor a few years.I do not take more than 50mg of lamictal, 1800mg of trileptal and 1500 of Keppra. My doctors view is that none of them are at a toxic level by because they are not high enough doses. She does not ever do blood work for the reason they are not high enough doses.

But recently, when I take my noon meds of keppra and trileptal at noon with lunch, I have expereinced a feeling of disorientation, vision being off can not exactly focus my glasses seemed off. I kinda feel like I have had too much to drink.
Today I asked my partner to see if my eyes looked funny, they looked and told me the left eye pupil was higher than the right. So we went for a stroll outside to see if it woudl help. The pupil did eventually move down. And after about an hour the rest of the affects went away.

Yesturday, the disorientation and my focusing took about three hours to return to normal.

So when I called my Doctor's office about it yesturday, the emailed awhile back saying "my levels were not toxic and could not tell me what it might be" but to keep track of it.

The last time I was on Tegretol and Dilantin I had similar signs and it was toxic. So I am confused.

So I ask the following, This is a epileptologist and one I generally trust. Yet, I would think this would be something they would be concerned about.

Just because I am not taking high enough doses to be at toxic level. Why do they not get peoples individual base line of drug tolerance? Are we not all individual with personal sensitivities to drug levels? Like we all are to foods and our reactions to them are differents.

Has anyone experienced these symptoms before? If so what was the cause?

Any thoughts would be great.
Thanks for any thoughts.
Cedar
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Old 10-13-2007, 07:51 PM #2
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Hi Cedar ~ you know me well enough to know I'm not educated or anything but it's my experience that we all have DIFFERENT tolerance levels for meds.
And - I can't remember what med it was but - I was doing quite well on a med but woke up one morning VERY dizzy and CROSS-EYED. I could not even see well enough to call for help ... I even tried to phone my husband's office and could not do it.
Long story ......
Much later I managed to phone my neuro and he said I was badly OD-ed on my prescribed dosage. According to his direction I cut my dosage by 1/3 and did just fine.

Anyhow - I am reasonably certain that "prescribed dosage" means nothing for EVERYBODY. Each of us is very different and reacts very differently to each drug. Right?

Best wishes.
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Old 10-14-2007, 09:39 AM #3
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Hi Cedar,
Call your pharmacist IMMEDIATELY! It certainly sounds like your drug levels are starting to become toxic. I began to feel dizzy, I couldn't stand up on my own and my concentration was very bad when trileptal became toxic in me.
If your epi won't order a CBC (complete blood count) and drug level check have your family Dr. order it. This is nothing to mess with I ended up down and in bed for 4 days because the drug level was so toxic that it made poison in my body, I don't want this to happen to you. Your pharmacist can tell you more about the warnings of AED's becoming toxic and what to do. Here's wishing you well and May God Bless You!

Sue
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Old 10-14-2007, 06:59 PM #4
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Thanks to you both for your thoughts. I agree it is nothing to fool around with. I just do not get how the Dr. think in such a square box. Oh well I will get a CBC and also talk with my Pharmacist Thanks for suggesting this. Kinda was scary yesterday. Much appreciate your thoughts.
Will keep you posted.
Peace to you both, Cedar
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Old 10-14-2007, 11:28 PM #5
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Cedar,

At one time I was on Trileptal after a while as I was getting pretty bad. Vision was blurred and I was unable to even stand up without falling. My neuro quicky stope the medicine and stop giving the medicine. It only took about an hour for me to get everything back to normal. He took me off the medicine and said there was no way to give me enough to help because of my reaction to the dose I was on.

If I were you I would get in touch with your doctor. Keep us inform.

Darlene
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Old 10-15-2007, 12:25 PM #6
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Hi Cedar,
Your blood levels should be drawn every few months no matter what dosage you are on. I was on a very low dose trileptal, and had to have regular blood levels drawn. These meds can be very strange, and cause toxicity within a very short period of time. Please insist on a levels check. Dodi
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Old 10-15-2007, 12:36 PM #7
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Well here is the most recent update. Yesterday felt okay. Today I did get a CBC for a gynocologist I work with who was wanting me to get it. Spoke with a pharmecist. He was liek well you have been on it for several years so it must be something else.
As I sit here now 1 hour after my noon dose was taken. I feel off and vision is a bit off. Feel kinda tired.

I just feel so fusturated that my epileptologist is like well you do not really need blood levels and nothing can be toxic. SO keep track for the next 4 weeks and write down everything until I see you then. I know she has tried everything and really does not want to have to try new things well neither do I but I am feeling off.

So I am getting ready ot reduce my noon med but do not know whether it is my keppra or trileptal. So Just feel like up against a brick wall. Like they do not believe anything can really be wrong because of what they know or were taught.
Sorry to rambling it is just my fustrastion with the medical system.
Thanks for all the good suggestino. will keep you posted.

Cedar
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Old 10-15-2007, 07:12 PM #8
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Hi Cedar,
I'm sorry to hear that your epi would not order a drug level test to be done. From everything you are describing it sounds just like what happened with me when I was on trileptal and it became toxic. If you should decide to cut back on the trileptal do it very slowly like a half a pill for 1 week then cut back on the other half because if you cut back on the trileptal to quickly it can lead to severe sz. and I don't want that to happen to you. Here's wishing you the best of luck and May God Bless You!

Sue
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