New To All This

[CathyW]

Greetings!
I was diagnosed with Seizure Disorder (Epilepsy) in June of 2013 at the age of 56 years young... However now that I know what some symptoms are I know it had been going on for a long time
I also have Lupus (SLE) that is what they think caused seizures?? I also have CVID a Primary Immunodeficiency Disease that I do weekly infusions of Hizentra (gamma globulin product).
Anyway I am on 500 MG of Keppra twice per day for my seizures. I was started on 250 MG twice per day but my 3 month eeg was worse than first one so doctor increased dose. Now I am suppose to add Aptiom 400MG once per day for first week and then 800 MG the second week, but I have not done that yet as I am scared I do not know what to expect. I wouldn't know if the fatigue is from new drug or from all three disorders I live alone just me and my fur person (Dog) Harlie and I find myself so scared all the time. I have no energy period and sometimes I feel like I'm losing my mind
Perhaps someone in this forum can offer some insight and support. Thank You All In Advance,
Cathy
PS I don't even know when to take the Aptiom?? I take my Keppra at 10 am and 10 PM
My Seizures generate in the Left Frontal Temporal Lobe but on one eeg went to both sides... All I know is I feel lousy most of time....

 

[George__]

:hugs:

 

[Nakamova]

Hi CathyW, welcome to CWE!

Research suggests that, in some cases, there may be a systemic link between autoimmune disorders like lupus and CVID, and epilepsy. I'm sorry that you are dealing with all of these, as well as with the side effects of the medications you take to treat them.

You should definitely let your doctor know of your concerns and questions about starting the Aptiom. Ask about the option of delaying taking the Aptiom until you get a better sense of how the Keppra is making you feel. Also ask about slowing the Aptiom ramp-up (i.e. staying on the 400mg dose for longer than a week before increasing the dose to 800mg).

If you don't already, it can help to keep a detailed health journal where you keep track how you are feeling, physically AND emotionally. If you are not sure whether something is a symptom or a med side effect you should still write it down. The journal can help you get a sense of how well a medication is working, and whether any side effects are getting worse or going away. It's especially important with Keppra to track your moods, since it can cause dramatic fluctuations including depression and rage. If you feel like this might be happening, contact your doc to let him know, and ask about trying a different anti-seizure med. Also ask about taking a B6 vitamin -- that can potentially help with Keppra-related side effects. if your doctor gives the okay, probably best to take the Keppra with breakfast.

Is there someone you can check in with every day, either by phone or in person? It can help to get an outside perspective. And it can help to have someone to offload your worries and your fears. CWE can help that --feel free to vent here any time.

Best,
Nakamova

 

[Belinda5000]

Hello Cathy,
welcome to CWE.

Belinda

 

[Tez_20]

Hello Cathy,

Welcome to CWE and nice to have you with us

Cathy I have Temporal lobe epilepsy and also take keppra have done for years now and the meds been ok with me but regarding Aptiom never had that...my epilepsy was caused by my Lupus which I was diagnosed with in 2008 and much more.

The lot can be frightening but out of my seizures and Lupus...it's the Lupus that gets me down and I see on your profile about methotrexate i take it but in tablet form every Friday and have regular bloods done once a month.

I totally know how your feeling and the lot can get you down mentally besides physically.:hugs:

 

[CathyW]

Thank you all for your welcomes! I would have answered sooner, but my internet is not staying up

 

[Tez_20]

Thank you all for your welcomes! I would have answered sooner, but my internet is not staying up

Cathy THANK YOU from us all and not to worry otherwise as we all have internet problems from time to time.