3 months seizure free

Bernard

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I haven't posted much about my wife's travails with her epilepsy in a long time. Truth be told, there wasn't a lot to tell. For the last several years, she's more or less been on the same 3 medications (with small tweaks to the dosages) and having seizures with varying frequencies.

The neurologist she was seeing about a year ago was trying to sell her on getting a VNS as she was out of ideas on what else could be done for her. I mentioned at the time that I thought there was a very strong chance that she was having bouts of sleep apnea and the VNS could make that worse. So, she (the neurologist) ordered a sleep study for her (my wife) to evaluate the possibility of sleep apnea.

The sleep study confirmed that my wife was having apnea episodes. They ordered another sleep study to fit her for a CPAP machine. After that sleep study, we had to wait a couple of months because of Covid19 induced supply chain issues wreaking havoc with CPAP machine manufacturing (local distributors didn't have any inventory). But we finally got the machine on September 1.

September 2 was the last time my wife has had a seizure. Since she (my wife) hasn't changed anything with regards to diet or medication schedule, we're pretty confident that the CPAP machine has been a huge boon for her seizure control.

We just finished seeing the neuro and got the OK for her to start driving again. Baby steps for now (short drives with me in the car supervising). This will be the first time in roughly 5-6 years that she's been able to drive. She's pretty excited about finally reaching that milestone.

I'm pretty pleased that it appears that her seizure control appears to have stabilized/improved so quickly after starting the CPAP. Chances are very good that she hasn't reached peak benefit from the CPAP yet - she could/should continue to see improvement over time the longer she uses it.
 

Nakamova

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Such awesome news Bernard! And such a relief that you didn't have to try the VNS. I hope her neuro keeps this in mind with other patients.

Also a good reminder that people with epilepsy should consider getting sleep studies done, especially if there's a chance they have apnea.
 

Porkette

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Hi Bernard,

That is wonderful news! I am so happy for your wife and you. I also found out I have sleep apnea but not
that bad and when my neuro put me on Vimpat the seizures stopped that I was having in my sleep.
Wishing You and your Wife only the Best and May God Bless the Both of You!

Sue
 

valeriedl

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That's great Bernard!!!!

And driving too, she's probably jumping for joy!
 

CQ:)

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Hi Bernard
So glad everything is going well and your wife is able to drive again 😊
 

Bernard

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Well, she made it roughly six months, but had two TC seizures on March 3rd. While it's disappointing that she had the seizures, it wasn't entirely unexpected that she might. ~6 months seizure free is still quite amazing for her in comparison to the last few years, so hopefully she can go seizure free for a longer period of time now.
 

CQ:)

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Hi Bernard
Sorry to hear Stacy had the TC. Hope she is feeling better now

You’re right 6 months is amazing. During my time when I’ve had seizures I don’t think I’ve ever gone 6 months seizure free. I just except everyday seizure free as a good day now 😉

My last seizure was early January.
This is currently the longest I’ve gone seizure free since the seizures returned after the surgery.
 

Porkette

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Hi Bernard,
I have a friend who went almost 6 months and ended up having a TC seizure also. I can't help but wonder if
it's do to a low pressure in the weather or if a person lives on a high hill or higher location ex. Alaska.
I'm sorry this happened Do you know if Stacy has seasonal seizure where so could be having more at certain
times of the yr. do to the amount of serotonin? I know I have this type of seizure and always in the fall and
winter I have a lot more seizures compared to the spring and summer.
I wish you and Stacy only the Best and May God Bless the both of You,

Sue
 

Nakamova

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Sorry to hear about the seizures Bernard, I hope she's feeling better. At least you know that the apnea episodes were a contributing factor -- and something that you can keep an eye on.
 
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