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Daisyduke

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Hi...good to find this support after just getting diagnosed with atonic seizures after a recent fall...was out to dinner with 2 couples that are new neighbors and when out the door, felt faint and leaned against the wall and next thing I knew I was out (not a good way to meet the new neighbors, embarrased:(
EEG came back abnormal and I told the doc about a similar fall over 20 years ago at work...he is convinced it's atonic seizures.
Unfortunately, I am the worrying type with a history of depression and anxiety especially over the past year. This scares me because it could happen again anytime...makes me feel like a ticking time bomb.
Doc prescribed Levetiracetam 500mg twice daily. I'm getting a second opinion before taking it as have read about side effects and wonder if there is a better
Med such as Onvi.
Anyone had similar experience with atonic seizures and how do you cope?
I have this stopped up feeling in my head and almost like very slight ringing noise...not sure if that was from the fall or the atonic seizure...anyone else experience this sensation? I have developed such a fear of falling now.
Wonder if I have had this all these years and didn't know it.
Promise my next thread won't be so long. Thanks everyone.
 
Welcome Daisy!
I too am on the same med, but I take 750 daily. I started in 2006. I also am a worrier and have come to realize that it's my biggest issue. How are you sleeping? My seizures were also affected by insomnia. Just take it slow and read as much as you can about this.
Everyone's seizures are different. There are some similarities but you will get to know YOur own body.
Good Luck!
M
 
Hi Daisyduke, welcome!

I think sodium valproate is considered a first-line med to treat atonic seizures; lamotrigine is considered a second-line treatment. You may have been prescribed levetiracetam instead because it can be can ramped up to a therapeutic dose quickly). It's always good to get a second opinion about the meds, particularly if you may be sensitive to known side effects. For many people, keppra (levetiracetam) can be fine, but for others the mood-related side effects are very problematic. It can be hard to predict how any given med will affect an individual, but it helps to be as informed as possible going into the process.

Make a note of the ringing noise -- if it is persistent, gets worse, changes over the course of the day, etc. -- and let your physician know. It could be tinnitus, which can be caused by a variety of things, including seizures, falls, and even some anti-seizure meds.

Best,
Nakamova
 
Hi M
Sleep...not so good...last night was one long panic attack:( Still in disbelief and bummed out over the diagnosis and still have some redness and numbness from the fall and scared of falling again and told not to drive for 6 months after a seizure.
Is the Levetiracetam working for you? Do you have atonic seizures?
 
Thanks Nakamova:)

I will talk to the doc on Friday about the other meds. Hard to believe I haven't had more episodes in all those years without meds.
 
Hey Daisy.
Yes, the med. is working for me but I have had some auras in the past few weeks. Intermittently, but they still scare me because I don't want to have a seizure. I take care of my 2 yr. old grandson during the week and would not want anything to happen during that time. I have had a lot of stress these past few weeks dealing with my bipolar eldest son. I have 3 adult sons and 3 grandkids. I am a widow and live by myself.
I'm going to see a new neurologist on Apr. 15.
Trying hard not to stress but short of taking sleep aids, not doing a good job!
M
 
Hey M,

What exactly do you mean by the auras and what type of seizures do you have? How long have you dealt with this?
Sounds like you have a lot on your plate right now so try to take care of yourself...have you ever tried meditation or listening to relaxation tapes?

Sending good thoughts,
Daisyduke
 
Hi Daisyduke! To answer your question about auras: There is a certain amount of confusion in terminology, but basically an aura is a partial seizure that precedes a generalized seizure. If a generalized seizure does not follow a partial seizure, that partial is not an aura, but just a partial seizure.

Here is a quote from Wikipedia which pretty well describes it:

"In simple partial seizures a small part of one of the lobes may be affected and the person remains conscious. This will often be a precursor to a larger seizure such as a complex partial seizure. When this is the case, the simple partial seizure is usually called an aura."

Best of luck with everything. You will get through this!

Carry on!
 
Hi, Daisy.

Worrying often times can be the worst thing. I know when things got out of hand for me, worrying at points was my only problem.
I have been on Levetiracetam for a long time, first for partial seizures, but later I had a few T/C after I stopped taking it. It worked just fine until more recently when I was having some nocturnal problems. I now take a second medicine along with it.
I have two troublesome effects of Levetiracetam. Drowsiness and mood swings. I have coped with both and am OK with them. If it is the trade I will have to be controlled, that is just fine with me. You make that decision for yourself.
If you have any more questions about it, myself and anyone else here would be happy to help you.
 
Hello Daisy,
Welcome to the board

I have simple partial sz's and in past 3 months they've been driving me crazy.
I have them when I'm in a crowd and I refuse to stay home because I might or might not have a sz. I have about 5-6 different types of sz's so I never know what type I might have. I'm going to live my life not be a prisoner in my home.
 
Daisy, I've been dealing with seizures since 2006. Initially, they were simple partials. Then in 2008 when my husband passed they escalated. Spent Christmas eve 2008 in Er. After that was taking 1000 mgs of generic Keppra and lorezepam 1mg to sleep.
This past Dec. I asked my neurologist if I could reduce my dosage and he told me since I hadn't had any seizures since 2008 I could go off totally. Not a good idea. I was skeptical when he said it so he said, " If it will make YOU feel better you can go off slowly." So I did. But life interfered (doesn't it always) and I started having these feelings of deja vu (auras) and so I went back on the Keppra but only 750. Ran out of lorezepam (that's why the insomnia)
Then this Friday I almost had a seizure due to a stressful situation with my daughter-in-law. So now I've upped my dose to 1000mg.
Yes, I do have a lot on my plate but I am aware and will do everything in my power to control this. I have off this week so the baby is not here. I think I needed a break from that, too.
Thank you for your thoughts and I hope that You will learn to cope, too.
M
 
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