So far! So Good!

[Suzanne H]

Hi there,

Well my husband is off all seizure meds now due to his blood platelets sinking alarmingly low and now things are pretty well back to normal. His blood platelets are now back to normal and the neurologist said he is never to take valproic acid ever again. The neurologist didn't say much about our theory that the meds caused more seizures but my husband and I believe so. He had no seizures for 3 months on a low dose of meds, then she increased it to get it 'in the level' and he had a seizure 5 weeks later. The neurologist increased it 2 more times and every time she increased it - he had a seizure 4 or 5 weeks later. So now he's off all meds and has been seizure free for 7 1/2 weeks. My husband wants to 'wait and see' what happens with his seizures. He had one in Feb. so this is all new to us so his neurologist agreed that he could go seizure free to see how many he has, or if he even has another - only time will tell.

But what amazed me is I have my husband back. The meds turned him into someone I didn't even know - he was angry, emotional, mean and hard to live with on the meds. They affected him deeply and as his platelets dropped, he got really fatigued all the time. Now he's bounced right back.

I'm nervous about the no meds thing as witnessing the seizures frightened me as he also has a bad heart and one of them set off his arrhythmia and he had to be hospitalized, but I support his decision.

But I'm thrilled to have my nicer husband back. Now if only he can get his license back soon so that I don't have to hear constantly about how bad a driver I am.

Sue

 

[Chaz1]

Wow, congrats on the seizure free period. Long may it continue.

Did you talk to the docs about heart problems and seizures, or maybe better put the dangers of both?

So nice to hear he is back to himself and to hear u r happy too

My Man never stops commenting when we get in the car adn I drive (which is like never if I can help it), what is that eh...I ignore him.

my Son takes valproic acid his blood levels were fine though at last check..scary stuff.

 

[Suzanne H]

Hi Chaz 1

Hi there,

Mike's neurologist said that lowered blood platelets is a rare side effect of valproic acid but it can happen, so she set up a series of weekly blood tests. And sure enough - his platelets bounced back up to normal as the meds left his system. His family doctor said it was rare too and didn't believe the seizure meds were the culprit and scheduled him for a specialist's appointment about his blood - but now the platelets are fine again. So it was the seizure meds.

About a year ago last Feb. when my husband was driving alone he had a weird experience but he was alone so no one witnessed it. It was during the day and he felt weird and pulled over and remembers shaking and gasping for breath. He doesn't know if he passed or not. He drove back home and felt he had a seizure so I took him to the hospital but all his stats were fine. His family doctor thought it was his heart but those tests were all fine. Then one year - almost to the exact date - he had a nocturnal seizure and I called 911. Then after raising his meds 3 times he had 3 more nocturnal seizures. So time will tell but the neurologist did support being off meds for a period of time to 'wait and see'.

Yes, we've talked to specialists about his heart and seizures as one of them set off a bout of arrhythmia and we're still in the process of lots of heart tests. We're seeing a specialist tomorrow. If he was having regular seizures, for sure he would be medicated as it's not good for his heart but we'll see what the specialists say tomorrow.

I told my husband that it's his problem not mine if he has problems with my driving because I'll never drive like him, so get used to it.

Hope your son is okay.

 

[KarenB]

Yes, the Valproic Acid also caused blood platelet issues with our Jon -- but actually, they were a bit wierd even before he went on VPA.

Every time we lowered the dose of Valproic Acid, during the wean, his teachers and therapists were amazed at the change in Jon -- they said it was like the light was turning on.

 

[Nakamova]

It's amazing the striking effect these meds can have on personality. And so wonderful that you have his real personality back.

 

[Suzanne H]

Yeah, I'm amazed at how much the meds affected his personality. It's almost hard to believe. Medication has always had weird effects on him. When they first put him on coumadin to thin his blood, they put him on the lowest dosage possible and his stats went through the roof. They didn't believe the results and blamed it on the lab but nope - the second blood test showed the same result so they had to give him meds to bring his level down. So I'm not surprised that he went for 3 months with no seizures, then they raised it and he had a seizure 5 weeks later and that happened twice more. It was like at the lower dose he had no seizures but the heavier dosages gave him seizures. But we're waiting it out - going day to day - to see how often these seizures will happen. Scary but hopefully okay.

 

[Chaz1]

Mood stabilizers don’t get me started...day 1 scared the crap out of me when I seen how they immediately affected my Son (struggled to open fridge, could not locate handle, settled quick enough but it was royal open opener), I knew there and then just how heavy this shit (pardon me) is….

All the best for tomorrows visit and hopefully - some good/sound concrete advice.

“I have my husband back “wishing you many happy times together and of course seizure freedom for your hubby.