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Old 08-15-2016, 10:26 PM   #1
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What's Been Going On.

Any one here who has been around for a while knows I've always been a fairly private person. I don't easily share details of my private life. I also don't deal well with difficulties of people I care about here so I mostly avoid threads about health problems. That's a testament on me rather than any on this forum. However, I feel I want to explain what's been going on with me.

Last winter, my SO, Suzanne, developed a seizure disorder. The seizures became frequent and regular with several per day being the norm at its peak. The seizures are confined to her hands and arms but are still painful and debilitating. Treatment with a neurologist has lessened seizures in intensity and frequency to the point where a seizure occurs once in 2-3 weeks.

This has come at a cost. The meds have side effects that have had a significant impact on Suzanne's general well being, with speech difficulties and confusion. It's extremely frustrating for her. She has had to give up driving and we sold her car this past spring. She has always been proudly independent it was a difficult step for her to accept.

We sought a second opinion at a highly regarded regional medical center. The neurologist there recommended a weeklong hospital stay where she would be electronically and visually monitored while she was gradually taken off her meds. This would give the neurologist detailed info on what's going on in her brain. Precise measurements of brain activity during seizures will hopefully give them what they need to improve her situation.

Today I took her to the hospital to start this treatment. She's hopeful but I don't know what to think. I know I'd be thrilled if there was a solution that didn't involve so many meds that have altered her so much. I want my sweetheart back again.

Thanks for listening.

"If you want to make an apple pie from scratch, you must first create the universe." -Carl Sagan
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Old 08-15-2016, 10:37 PM   #2
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Oh Andy and Suzanne! So sorry to hear this. {{{{hugs}}}} for both of you.

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Old 08-15-2016, 10:42 PM   #3
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Oh Andy. My heart go out to you. And to your beloved Suzanne, you know she will always have our prayers. I hope they find a better solution than the first one. Sometimes it is difficult to seek a second opinion. A lot of folks are afraid of hurting the feelings of the first doctor. But the both of you are very fortunate in that you have some of the very best doctors in the world practicing here.

Do keep us informed of her progress. And I am expecting progress, not any word less.
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Old 08-15-2016, 10:43 PM   #4
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Oh Andy, I am so sorry to hear this!!

Hugs to you and Suzanne!

I hope the hospital stay sheds light on the situation so that it's more manageable for you both
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Old 08-15-2016, 11:00 PM   #5
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Thank you all. I'm keeping my fingers crossed.
"If you want to make an apple pie from scratch, you must first create the universe." -Carl Sagan
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Old 08-15-2016, 11:10 PM   #6
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Andy, I'm so sorry to hear this. I kind of wondered a while back when you mentioned a few times having to take Suzanne to doctor's appointments.

I've never mentioned this before either, but my daughter has epilepsy. It didn't show itself until she was in her early 20's and had two full blown whole body seizures at work, 6 months apart. She had black eyes and cuts on her forehead from the intensity of the seizing.

She started seeing a neurologist down in Santa Barbara, many tests were run, different meds were tried, and they hit on a combination that works. She's now 31, hasn't seized in 8 years, there are no side effects from the meds, she got married, had a baby who is now 6 years old (Tyler), she drives, and lives a normal life.

I guess what I'm trying to say is that there is hope for meds that can help Suzanne. They may have to try a few, but I feel sure they'll hit on something that works for her. Best wishes, loves and big hugs to you both.
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Old 08-15-2016, 11:38 PM   #7
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Andy, I understand fully how hard this was for you to share this, I really do, as I share your privacy feeling. I don't have any advice, but want you to know I'm in your corner looking for constructive ideas. Good for you for asking!
Life is not measured by the number of breaths we take, but rather by the moments that take our breath away.

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Old 08-16-2016, 12:05 AM   #8
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Suzanne is lucky to have you looking out for her. Hugs for you both and I hope they find a combo that works and gives more of her back to you.
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” - Albert Einstein
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Old 08-16-2016, 02:07 AM   #9
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Wow, that's a tough blow, Andy. Here's to hoping all the doctors find a workable solution that brings your sweetheart back to you good as new. Or as new as they can make a 60-something person. Sorry, I just had to lighten the mood.

Seriously, though, I'll keep you and Suzanne in my thoughts and prayers. Hugs to you both. And thank you so much for letting us all know about your challenges.
"Eating ruins your appetite"~Mom

"If you don't use your head, you gotta use your feet."~~~more Mom
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Old 08-16-2016, 05:15 AM   #10
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Sending good and hopeful thoughts to you and Suzanne that the new doc comes up with something to help her.

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