Hannah had a seizure/help please

[lisajean]

Hi All,
Go figure that BT would crash when I needed it the most :( . Thankfully it is back up and I can talk with the "real experts" (you all) again.
Any way, Hannah had her first, and I hope only Grand Mal seizure on Friday, May 4th. Thank god I was sitting right next to her watching TV so she was safe and 911 was instantly alerted. We were transported to the ED where she was given dilantin and ativan IV, had a head CT and eventually sent home.
We saw a neuro the following Monday who felt it was medication related. Two days before the seizure we increased Hannahs Opana from 10 mg BID to 20 mg BID and added a scopalamine patch. Also, she was experiencing a lot of itching which I assumed was from the Opana so she had several doses of Benedryl along with some ativan and tramadol for pain coverage. With the exception of the scopalamine all the meds were ones she had been taking for at least several months.
I took the patch off less that 24 hours later because Hannah was acting very odd, kept repeating herself, not remembering things like the fact that she had been to the podiatrist that day to have ingrown townail surgery etc....
It was strange, but Hannah always reacts oddly to, well just about everything so I didn't think it was anything to call her doc about.
A few odd details include projectile vomiting, taste perversion, and over a dozen episodes of hiccups in only 24 hours following the seizure.
ANY WAY... if you are still following this..............
Hannah is now on Keppra, on Methadone, off Opana, off Tramadol, tapering off nefazadone, off RX Vit. D, off Benedryl... I think that is it. It has been a helluva week with lots of changes. I hardly leave her side for fear of another seizure. Saw a NS who does not think it is her shunt but wants to follow up with a CSF flow study.
Thoughts, ideas, encouragement??? This was the last thing we needed and I am feeling pretty overwhelmed. Not sure what to think or where to turn. Except to you :) ,
Hugs,
Lisa

[Mark N]

Sorry to hear about the seizure but reducing the meds sounds like a good idea until you get a handle on what caused this. I hope the doctors are able to find the cause and put a stop to the seizures.

[Wren]

Hi Lisajean, I'm so very sorry to hear about the seizure.

It sounds like the doctors are taking it seriously and doing a good job.

Just want to comment, as you probably know, itching, vomiting and hiccups can all be signs of too much opioid.

And I've read that Ultram/Tramadol can cause seizures either when taken in too high of a dose or when coming off of it.

I had a hard time with Opana -- at first it was not enough then it was too much. Maybe because of the sustained-release it builds up in the system. Although oxymorphone, by itself, does not have a long half-life. After a trial with Opana, I went back to Oxycontin. Let us know how Hannah does on the methadone. For some, methadone can work miracles. Very individualized responses. It worked great for me, but caused weight gain.

-Wren

[spoiledbeth]

I hope the Keppra helps to keep Hannah from having any more seizures, and the methadone should help alot with her pain without going to a high dosage. My brother used to have grand mal seizures, and I know they can be scary to watch. Is Hannah set up for an ekg to check and see if the seizure is just a med side effect, or a new problem?

[Mark N]

Lisa, is there any news on what caused Hannah's seizure? Have they pinned it down on one of the meds or something else. I hope she has been doing fine since her meds were reduced.

[lisajean]

Hi there,
So far no more seizures...yeah! Her EEG was normal and at this point her neuro says it was medication related (tramadol and/or nefazadone and/or scopalomine).
Hannah has tapered off tramadol and Opana and is taking keppra, methadone and dilaudid. Her Dr just increased the methadone to 7.5 BID and is having Hannah increase it by 2.5 mgs every 4-5 days as needed until we find the right dose. She is having her try atarax for the itching and ativan for the agitation. Also has her on prilosec for N/V which has worked wonders!
I love this Dr. I wish we had switched to her long ago. She is handling the pain piece so much better than the pain doc ever did and she is just so nice and respectful to Hannah. She believes her and never says "but you look so good" etc..... In fact today she told Hannah it was obvious she wasn't feeling well. Hannah was grateful for her honesty because she looked like heck and could hardly stay upright in her chair.
Anyway, still waiting on NS to call back. He wanted to do some research. Said maybe go to Europe for treatment but I don't know what he's thinking. I hope he's planning on paying for it, whatever it is....lol.
Hannah has managed to get out of the house a few times this past week which made her so happy. It wipes her out for days afterwards but she's learning to accept that it's worth it for a bit of "normal" life.
Thanks for checking in on Hannah as well as all your awesome advice and support. you guys are the BEST :)
Lisa

[Mark N]

Lisa, it is good to hear she is doing okay while trying to get her meds straightened out and that you have found such a caring doctor willing to work with Hannah and her pain.