Just confirmed diagnosis

[Debbie]

Hello ~ I'm new to this site and thought I would start by introducing myself. Yesterday my neurologist called me to give me the results of my EEG. He observed intermittent focal sharp waves in my left temporal lobe area of my brain. I will have an MRI in two weeks as he seems to think the MRI will show something.

So, onto the next which is medication. I have been put on all the seizure drugs except Depakote, in the past 10 years and have not been able to tolerate any of the side effects. He is urging me to start on 250 XR twice a day and I wanted to start on 125 mg once a day. He is refusing this idea as he won't be able to detect my blood levels once a month for the first three months.

I live alone and am at the top of 4 levels of stairs and since I don't handle sedation at all well I am worried about taking any seizure medications, let alone Depakote and my mobility issues.

Looking for suggestions and getting to know the members here.

Debbie

 

[cadsgj]

Really wish I could give you good advice Debbie but I certainly am no expert. The one thing I can mention is that in 18 years I have yet to be put on a medication that does not have some side affect and my number one choice is for the most part to settle down seizures - eliminate would be BEST for me though

There are many people here who have good and intelligent ideas, so I am sure they will come your way shortly. I wish you the best of luck

 

[QueenieKP]

Hi Debbie.

Welcome to the site.

Must be difficult managing meds on your own. Could you ask for a friend to spend some time with you for a few weeks, or do you have specialist epilepsy nurses to advise of what support may be available in terms of physical aids eg alarms?

Q

 

[Cint]

Hi Debbie,

I've had epilepsy for over 30 years now and have tried nearly every med that was on the market. The reason I tried so many meds is because none controlled the seizures, not because of side effects. All have side effects and sedation is a very common side effect of AEDs. Some also cause sodium problems, hypothyroid, forgetfulness, and the list goes on. Depakote is also used for bipolar disease and a noted side effect is weight gain. For me, seizure control is important even if there are some side effects. If my seizures were not under control, I could any time go status.

I now live alone and take Keppra, Topomax, and another new AED, although I am at the bottom of the stairs. I know I could have a break-through seizure any time, but have learned to deal with it by telling friends, neighbors. I have a medic alert bracelet and it has been helpful for me. Have you contacted your local Epilepsy Foundation?

 

[Debbie]

Response to Cint

Hello Cint ~ Thank you for your information and suggestion to contact my local epilepsy foundation.

Question for you. Does this medication change your EEG report? What does your EEG report show for you and what type of seizure disorder do you have?

Debbie

Hi Debbie,

I've had epilepsy for over 30 years now and have tried nearly every med that was on the market. The reason I tried so many meds is because none controlled the seizures, not because of side effects. All have side effects and sedation is a very common side effect of AEDs. Some also cause sodium problems, hypothyroid, forgetfulness, and the list goes on. Depakote is also used for bipolar disease and a noted side effect is weight gain. For me, seizure control is important even if there are some side effects. If my seizures were not under control, I could any time go status.

I now live alone and take Keppra, Topomax, and another new AED, although I am at the bottom of the stairs. I know I could have a break-through seizure any time, but have learned to deal with it by telling friends, neighbors. I have a medic alert bracelet and it has been helpful for me. Have you contacted your local Epilepsy Foundation?

 

[Debbie]

Hello QueenieKP ~ I live alone and am totally all alone, due to having to move away from everyone connected to a stalking experience in my life, just recently. So, I'm doing this all on my own. It's gonna be tough.

Debbie

 

[Debbie]

Hello cadsgj ~ Thank you for your response *smiles*

Debbie

 

[Cint]

Hello Cint ~ Thank you for your information and suggestion to contact my local epilepsy foundation.

Question for you. Does this medication change your EEG report? What does your EEG report show for you and what type of seizure disorder do you have?

Debbie

I have Complex partial seizures with secondary generalized tonic-clonic. That is what my EEg's have shown. The last time I had an EEG, the results were the same. I've had a Video EEG in the hospital and they took me off medicine and I've had outpatient EEGs while still taking meds.

What type of seizures do you have?

 

[QueenieKP]

Hi again Debbie,

Sorry to hear about your experiences. On top of the E that must be hard to deal with. I think Clint mentioned contacting your local epilepsy foundation, they should be able to signpost you to some local support. Sometimes it's the local knowledge that can be the most beneficial.

Q

 

[Debbie]

Thank you QueenieKP, I just added this suggestion to my "to do" list for tomorrow.

Debbie

Hi again Debbie,

Sorry to hear about your experiences. On top of the E that must be hard to deal with. I think Clint mentioned contacting your local epilepsy foundation, they should be able to signpost you to some local support. Sometimes it's the local knowledge that can be the most beneficial.

Q