New to the world of E!

[MrV]

Hi,

The last year has certainly been interesting, as life can be. Certainly learning the concept of "Life happens when you planning other things. (Allen Saunders)". 2016 ended with an aortic root aneurysm repair (Bentall Procedure) and the wonderful part is I'm still here to tell the tail. Started with "attacks" not too long after with no idea what they were, until MRI (showed some spots in the left temporal lobe) and 72hr Video EEG revealed epilepsy. This took 8 months. Was then put onto phenytoin (August 2107) by Neuro which definitely slowed the seizures down from 4 - 6 times per day to once every 2 weeks and improving. Problem was that my liver decided that processing phenytoin and warfarin (for the mechanical aortic valve) was too much and started showing signs of giving in. So, a week and a half ago, started on Keppra as well in order to begin the change over. WOW been quite an experience. Not sure if its normal, but being a Dizzy Drunk Nauseous Zombie wearing dark glasses about coins the way I'm feeling at the moment.

Is one normally booked off work for this kind of change over in meds? Can one start a process to receive temporary disability?

 

[Nakamova]

Hi MrV, welcome to CWE!

Everyone is different, but hopefully the side effects you're experiencing during the med switch will be short-lived. Not sure about options for taking sick days while you're making your way onto the Keppra -- does your company have a sick day/personal day policy?

I hope the Keppra does the trick for you, but if it doesn't, hang in there. Phenytoin and Keppra are usually the first meds tried because you can get up to a working dose relatively quickly. But there are a lot of other e-meds to try.

 

[MrV]

Hi MrV, welcome to CWE!

Everyone is different, but hopefully the side effects you're experiencing during the med switch will be short-lived. Not sure about options for taking sick days while you're making your way onto the Keppra -- does your company have a sick day/personal day policy?

I hope the Keppra does the trick for you, but if it doesn't, hang in there. Phenytoin and Keppra are usually the first meds tried because you can get up to a working dose relatively quickly. But there are a lot of other e-meds to try.

Thanks for the response. In terms of "hang in there", just to manage my own expectations, is this days / weeks / months? I know each person is different from that perspective as well, I was just wondering in general?

 

[Nakamova]

Once you're at the full dose of Keppra and fully off the Phenytoin, it's good to give it a month (if possible) to see where things are in terms of seizure control and side effects. But if the side effects become worse, intolerable or debilitating then you shouldn't hesitate to let your neuro know. And of course if your seizure control is unsatisfactory your neuro needs to know as well.

You might want to keep a daily journal of how you're feeling -- sometimes progress (or regress) can be subtle to track. It might help if there's a particular time of day (e.g. first thing in the morning, after meals, etc.) when you feel netter or worse. That might be helpful if the dose needs tweaking in some way.

 

[Porkette]

Hi MrV,

Welcome to CWE! Everyone here has been a great help to me and I've had epilepsy for 45 yrs. along with 2 surgeries to help reduce my seizures. It looks like we have a little in common I found out last summer that I also have an aortic root aneurysm and this in turn triggered a lot more seizures for me. My heart specialist found that I wasn't getting enough blood flow to my brain do to the problem and this in turn was triggering seizures for me. I later saw my Epileptologist which is a Dr. that specializes in epilepsy and I was surprised that they had me put on cbd oil (medical marijuana) it has done wonders for my heart and it has reduced my seizures greatly.

When I was on keppra the drug gave me a hot temper and it also triggered more seizures for me. To find the correct med ask your Dr. to do a DNA test on you and by doing that they can match up your body chemistry along with the enzymes in your liver to the best seizure med with the least side effects.
Nakamova gave you really good advice to keep track of your seizures write down what time they happen and the type of seizure it was on a calendar and the Dr. may see a pattern in your seizures. I always have more in the fall and winter because there's less serotonin this time of yr. compared to the spring and summer.
Some people can receive disability but it usually means having Drs. written statements along with testing done and in some cases surgery to prove a person has done everything to try and stop the seizures, the best thing to do is to speak with a lawyer about the matter. I wish you the best of luck and May God Bless You!

Sue

 

[MrV]

Hi MrV,

Welcome to CWE! Everyone here has been a great help to me and I've had epilepsy for 45 yrs. along with 2 surgeries to help reduce my seizures. It looks like we have a little in common I found out last summer that I also have an aortic root aneurysm and this in turn triggered a lot more seizures for me. My heart specialist found that I wasn't getting enough blood flow to my brain do to the problem and this in turn was triggering seizures for me. I later saw my Epileptologist which is a Dr. that specializes in epilepsy and I was surprised that they had me put on cbd oil (medical marijuana) it has done wonders for my heart and it has reduced my seizures greatly.

When I was on keppra the drug gave me a hot temper and it also triggered more seizures for me. To find the correct med ask your Dr. to do a DNA test on you and by doing that they can match up your body chemistry along with the enzymes in your liver to the best seizure med with the least side effects.
Nakamova gave you really good advice to keep track of your seizures write down what time they happen and the type of seizure it was on a calendar and the Dr. may see a pattern in your seizures. I always have more in the fall and winter because there's less serotonin this time of yr. compared to the spring and summer.
Some people can receive disability but it usually means having Drs. written statements along with testing done and in some cases surgery to prove a person has done everything to try and stop the seizures, the best thing to do is to speak with a lawyer about the matter. I wish you the best of luck and May God Bless You!

Sue

Hi Sue,

Thank you so much for the information. Yes, it certainly help when one realises that we are not alone in this world. I hope for all of the best for you too !!

Thanks