Follow up Keppra

[justPassing]

Hello, ;-)

I was quiet with Christmas coming I was kind of busy. Yesterday have moved to the family country house for the kids vacations. When I was about finishing to get the last things before a cousin came to pick us up, the nurse called. She had reviewed my last email about Keppra sides effects with the DR and they decided to move me to Oxcarbazepine, heck that's a long word.

So I am phasing out of Keppra over a week and going up to 900mg Trileptal over the same period. In the middle of people coming and going and having to try to cook for everyone and relax...

Well lets hope I do not have to many side effects. With B6 supplements and a week of medical leave I was getting a clearer head with Keppra but not that much.

I was wondering if I should keep going with B6 or if it does not help with Trileptal?

I saw the comments about sodium, I have a full blood test schedule in at the end of January.

Cheers,

Philippe

 

[Justin May]

Good luck, Philippe! Hope everything goes well!

 

[justPassing]

seeing light?

Good luck, Philippe! Hope everything goes well!

Thanks as always!

Well it did not exactly go smoothly. Since the beginning of the cross over I have been feeling withdrawal symptoms: fever, Kepprage, general down time and physical pain. That's on top of short memory losses, possible simple partial during the night (its difficult to say, I go by ear say and my wife refuses to read information about epilepsy, guess I am not the only one to do denial...)

Yesterday I spent a great 25th with the kids, at 14:00 I was hurting so much I could not stand it any more I had to go try to sleep it off. I manage to get up at 17:00 in time to cook some sort of "happy" light super...

So this morning I decided to simplify my formula by taking out the B6 supplement to give my system a break. Either that or not drinking Champagne at lunch time did it. I did not even get the 16-18:00 Kepprage episode, which is difficult for everyone around (It goes along with a B6 related issue, since I do not drink Champagne every lunch time onder.

I will see more in the coming days. I am planning on 5 days without B6, then I will try it back with Trileptal mono therapy.

Cheers,

Philippe

 

[Bernard]

Hi Philippe,

I don't recall B6 being specifically recommended as a supplement for any AED other than Keppra.

 

[justPassing]

Hi Philippe,

I don't recall B6 being specifically recommended as a supplement for any AED other than Keppra.

Thanks, It seems at the moment that without B6 I feel much better. The thing that seems to be the difficulty with Trileptal is sodium. As mentioned in an other thread and here http://en.wikipedia.org/wiki/Oxcarbazepine .

I am up to 1000mg 2x/day, I finish keppra tomorrow from there will be at 1500 mg 2x/day. So far so good.

Cheers,

 

[justPassing]

Just a quick update for the few reader.

I have left for good Keppra on the 31rst. Yaaahouu here come a clear head again! 1500mgx2/day of Trileptal

As far as having a headache count as a clear head. I get much less tired also. On the down side, the first day I was completely out of Keppra I did have a TC at home.

Well it was educational for everyone, it was right in front of my oldest after we had some small sparks. Now I have to work with him so he does not get into his head that he did cause it.

I can now say that I have some indications on the morning that I might have a crisis during the day, even if I eat regularly to keep my blood sugar levels even.

I have to mind more chairs, I did fall on one and still have bruises to show for it.

My wife and kids have seen a full ugly one for the first time, I have to work with them to make them feel more secure. It's clearly more of a shock now than at the hospital where it was theoretical .

The fun part is that I see that I can come back relatively quickly, an hour after the TC the whole family of my wife where showing at the door for the evening festivities. I was hosting the event this year at my family house in the country... Luckily I had the good sense to cook everything before hand this time. The only things that were not ready were a turkey salad and putting together the desert. The first was easily fixed and the last was replace by somebody's else idea of a desert, I was down sleeping by that time. I missed the new year bottle of champagne...

The day after though I managed to cook a descent breakfast and before noon we where all driving back in town to prepare for an evening event.

Cheers,

 

[Ruth]

Hi Just Passing

I looked up tripetal and found myself here. I will ask my neurologist about it. I will talk to him about getting off of Keppra.

My head is cloudy as well. I cannot think. Come to think about it, I always have.(joking)

 

[ziggidypoo]

Keppra AND Triliptal AND Neurontin AND Klonapin....

With having about 4 different seizure meds, and weird seizures, and loss of memory, and all sorts of oddities, I could not say if Keppra is bad. My neuro tends to go up and up on my Keppra for my seizures, but we each are unique. She took me off Triliptal due to extreme electrolyte decreases that brought on grandmal seizures not causes by the epilepsy but the electrolyte depletion. BUT, w/in a month I was having multiple TLE seizures and back in the hospital and back on triliptal just having electrolyte levels and med levels done regularly. I end up in the hospital about once a month, every 2 mos if I'm REALLY blessed. Almost always from multiple seizures OR from an extra extra long postictal time or a seizure in public. Recently, I noticed I got REALLY irate down-right :soap::soap: prior to a major complex partial seizure. It made me wonder if my behavior eons ago, undiagnosed back then, with a "light switch" temper was actually seizure related since I think the hippacampi in the temporal lobe controls behavior and personality (correct me Bernard if I'm wrong). I sleep a LOT since quitting smoking.

Keppra??? Don't got a clue. Just know Neurontin helped w/ pain as well I guess seizures. Klonapin helps with my nerves (especially w/quitting smoking) as well as seizures. And, the combo of Keppra/Triliptal have been proven essential in the almost control of my seizures.

How much sleep do you get? Naps help me. Lack of sleep can really make things worse.

 

[brain]

In regards to "naps" - that I understand; people who
have Epilepsy also often have sleep apnea - are also
more prone to take naps during the day and not knowing
why; and there is your answer right there.

In my case, this does not apply since my case is different
and complex. They have tried to have me on medication
to balance this out and it is not working - whether on meds
or off meds - my body pretty much has a mind of its own.
And trying to put it on schedule only creates havoc and
raises seizure threshold; so it was learned to back off and
leave it alone. From that time and thereon, it was a huge
adjustment for me to "revolve" my life around my body,
rather than my body to revolve the life of normalcy.

:?

 

[Ruth]

Hi Ziggidypoo

I take naps during the day. I feel as though part of my life is taken away. With sleeping so much, including the night, I do not get to do the things I want to do.

I noticed one of the tags is oxcarbazepine. Would some please explain it to me. One of Keppra's side effects is irritability, anger and mood swings. It is hard to quit smoking. Did you know that they are putting more nicotine in cigarretes to keep people addicted?

 

[justPassing]

Hi Ziggidypoo

I take naps during the day. I feel as though part of my life is taken away. With sleeping so much, including the night, I do not get to do the things I want to do.

I can not take naps since I have long work hours, then I have to take care of my share of things at home. Lately I have slept less (up until 1:30 -02:00 am), I do not know if it is related to the new medication or simple emotional stress. I should be more regular on my journal so that I could see patterns more clearly.

When I was on Keppra I was completely spent at 14:30, I could not stay awake when I was back home. So it could easily be drung related for you also.

I noticed one of the tags is oxcarbazepine. Would some please explain it to me. One of Keppra's side effects is irritability, anger and mood swings. It is hard to quit smoking. Did you know that they are putting more nicotine in cigarretes to keep people addicted?

Oxcarbazepine is the name of the active ingredient in Trileptal. It is an oxydation of Carbazepine which is also AED but with many side effects. The sodium possible effects of Trileptal is linked to the oxydation process. Oxigen tend to burn Sodium.

Cheers,

 

[ziggidypoo]

sleep apnea

In regards to "naps" - that I understand; people who
have Epilepsy also often have sleep apnea - are also
more prone to take naps during the day and not knowing
why; and there is your answer right there.

:?

Have had sleep apnea, cpap machine w/O2, mouth guard (TMJ), chronic sinusitus w/one side almost closed off, tons of allergies, COPD, DJD, GERD, IBS, hypothyroidism, goofiness - oh - what's wrong with me - that's what's right with me!!! PTSD/anxiety, MVP, PVC's (not the pipes, my heart tosses in an extra beat now and then - makin' music??? no, that's only w/ beans!!!)


Feast: emotional side-effects of Keppra
Me: I'm normally happy go lucky - but, I'm talking a unreasonable over NOTHING!!! MAJOR RAGE - then, seizure, and back to normal me - normal??

re: napping
I get "sleep attacks" goes w/sleep apnea and meds where I HAVE to go to bed or even fall asleep in the bathroom.

Oh, Diabetes and hypertension. When the diabetes is out of control, I wet the bed, but now that it is controlled w/insulin and 2 meds, I sometimes will be 1/2 awake and mostly asleep and sit on the side of the bed and hollar PEEEEEEEEEEEEEEEEEEE and Carey has to lead me like I'm drunk with my eyes shut to the bathroom and help me back to bed and if I totally wake up I'm so startled I scream in terror - used to freak Carey out until my cat woke me like that and I screamed at her too, she ran under the bed. That only happens once in a while.

Like I said, I am thankful for every new day - better to laugh as to cry.

ONE THING - I HATE to go to the ER and will balk and refuse - but, if I ever tell Carey, call the nurse I've got to go to the ER, he knows it's serious.

OOOOOOOoooooops, I've also been talking too much lately (all my life)!! Sorry!!

back to my corner.............guesswho
ziggypoo

 

[Ruth]

I did not know that trileptal is high in sodium. Sodium is bad for my system. I do not add salt to my foods. There is natural salt in foods.

Thank you, now I know what oxcarbazepine is, it is Trileptal.

 

[ziggidypoo]

I did not know that trileptal is high in sodium. Sodium is bad for my system. I do not add salt to my foods. There is natural salt in foods.

Thank you, now I know what oxcarbazepine is, it is Trileptal.

Triliptal can LOWER blood sodium and blood magnesium, IN MY CASE - all people are different. I use salt to avoid the depletion and my mom says oatmeal has magnesium in it???

FDA site - go to page 8:
http://www.fda.gov/MEDwatch/SAFETY/2005/trileptal.pdf

 

[Ruth]

Hi Ziggidypoo

I do not know if oatmeal has magnesium in it or not. I just love oatmeal. I am not on Triliptal. I am on Keppra and vitamin B6.

 

[justPassing]

Hey finaly got an appointment!

:banana:

After 5 months of declared epilesie crisis I finaly got an appointment with neurologist next month...

There was a couple of email exchange with the nurse and a blood sample with her, but it took a IRM to have hime take some time to meet me. I do not know about you but I felt that being under medication without a proper appointment with a neurologist seems strange.

I wil bring Neurofeedback with him but the view of the clinic (if I trust my meeting with the nurse) seems to be once on meds you never get out of them...

Given that was refused a life insurance last month because I was too freshly declared with epilepsie I am still a bit on the down side.

Cheers,