Been married 33 years. My wife has had stomach issues for the last 12 years, constant bouts with throwing up and IBS . Last Monday and Tuesday a week ago her stomach pain got really severe.
Wednesday morning took her to a doctor to get checked out. White blood cell count was 22k where it should be 10k or less. They sent her straight to the emergency room for more testing and Cat scan.
Turns out she had a strangulated hernia which caused a blocked colon.
So emergency surgery commenced within about 3 hours last Wednesday the 16th. Surgery went better than expected, perfect in fact. After surgery she felt better than shes felt in 12 years. no more cigs ,she said she's done smoking (45) years and to throw her stash out.
Monday the 21st she was to be discharged around 9:30 am and I'm there waithing for the paperwork and we're in her room visiting with a friend that stopped in.
All of the sudden she stopped talking and her jaw was just quivering and she had this blank stare. I got the nurse in to look at her and everything seemed fine except she couldn't speak. After about 8 minutes she was able to speak again and everything seemed normal. This event happened 9 more times from then until 2:00 that afternoon as they kept her at the hospit for observation.
I had stayed with her all the time as I was worried, at 2:38 she started having another spell and then it turned into a full blown seizure. Now if you've never witnessed one, i'll tell you now ,you really dont want to.
her arm came out and made a tight fist and she just locked up and quit breathing .I was telling the nurse to get somebody now, right now. My wife, you could see every vein in her face and arms and she turned the darkest shade of purple you could imagine. Then she went limp . I yelled to the nurse, you need to call a code RIGHT NOW! She fell back ,as she had raised up during the seizure and was laying there blue. Like a corpse. Not breathing. I've got tears now as I type this.
About ten people rushed in at once. That damn code thingy gets you help fast. They told me to leave and I refused. They all did what they were trained to do and got her breathing again. probably within about 3 minutes.
another doctor came in and asked me to leave and I willingly did so as I was spent. I knelt in the hallway outside the room and cried. I had just witnessed my wife die.
but she wasn't dead.
They got her stabilized over the next couple hours ,awake and alert and ambulanced her to amarillo to a major trauma center.
So she's been there since Monday evening and has these episodes where she can't speak and lose function of her hands ,arms for 5-20 minutes out of every hour , sometimes three events per hour.
They don't have a diagnosis that they've shared with me. you can't get a straight answer from anybody ther, nurse can't tell you which doctor is due to come in or what time. the hospital is like the twilight zone and a bad nightmare combined.
Our only daughter is going through high school graduation ths week and it's been the big event on my wifes calendar for the last 6 months. She won't get to see it.
I have no idea if the doctors can fix this or if i'm bringing home a vegetable.
Originally Posted by Rain Man:
Once you're sure that she's feeling better, tell her that your daughter dropped out of school on the last day. There's no reason that short-term memory loss can't be fun.
Originally Posted by Baby Lee:
Now that things are starting to look up, is it premature to inject good-natured levity and mention that every time I see this thread on the main page, I get a momentary image of HogFarmer as The Fresh Prince of Bel-Air?
Originally Posted by SupDock:
It is used an an abortive for acute seizures, although the in my experience other benzos are typically used as first line. It is very uncommon to use it for seizure prophylaxis.
Ativan is much more commonly used for acute treatment of seizures due it is much faster onset of action. Diazepam is also the other benzo most commonly used. [Reply]
Originally Posted by 'Hamas' Jenkins:
Ativan is much more commonly used for acute treatment of seizures due it is much faster onset of action. Diazepam is also the other benzo most commonly used.
I think they have her on the klonapin to keep her leveled out as thats what she was on before. To stop the seizures they put her on Cerebyx I believe which is really strong. [Reply]
Originally Posted by Hog's Gone Fishin:
Thanks , you have provided several questions for me to present to the doctor as well as your past posts.
You probably don't have the time or inclination to look through all of this info, but if you want to peruse it, here are the full NICE guidelines for epilepsy:
If it is epilepsy brought about by acute BZD withdrawal, it's still important to have a plan of what to do in place in case your wife has another seizure. For example, it might not be a bad idea to talk to your physician about whether or not it would be a good idea to have Diastat available at home should your wife have another breakthrough seizure upon discharge (it's a rectal gel administered through syringe with a dial to select the dose), especially given that your wife had such a severe seizure.
Also, ask your physician/neurologist what impact her current medications will have on her EEG. While EEGs are the gold standard for diagnosis they are most effective if administered within six hours of a seizure and if someone is not an anticonvulsant or antiepileptic.
Good luck. Don't take any of the things I've told you as gospel. Do your best to advocate for wife and question her medical team, albeit respectfully. Don't just smile and nod. There aren't any bad questions. [Reply]
Originally Posted by Hog's Gone Fishin:
I think they have her on the klonapin to keep her leveled out as thats what she was on before. To stop the seizures they put her on Cerebyx I believe which is really strong.
Yes. Hypothetically, if they decided to discontinue her clonazepam, it would be done over a series of months.
Cerebryx is the trade name for fosphenytoin, which is a different formulation of phenytoin, which is more commonly known as Dilantin. They load patients with either phenytoin or fosphenytoin to quickly get the levels up to therapeutic levels. That's standard treatment. [Reply]
Originally Posted by 'Hamas' Jenkins:
You probably don't have the time or inclination to look through all of this info, but if you want to peruse it, here are the full NICE guidelines for epilepsy:
If it is epilepsy brought about by acute BZD withdrawal, it's still important to have a plan of what to do in place in case your wife has another seizure. For example, it might not be a bad idea to talk to your physician about whether or not it would be a good idea to have Diastat available at home should your wife have another breakthrough seizure upon discharge (it's a rectal gel administered through syringe with a dial to select the dose), especially given that your wife had such a severe seizure.
Also, ask your physician/neurologist what impact her current medications will have on her EEG. While EEGs are the gold standard for diagnosis they are most effective if administered within six hours of a seizure and if someone is not an anticonvulsant or antiepileptic.
Good luck. Don't take any of the things I've told you as gospel. Do your best to advocate for wife and question her medical team, albeit respectfully. Don't just smile and nod. There aren't any bad questions.
Thanks again, will look through this. They've not mentioned anything about epilipsy. [Reply]
Originally Posted by Hog's Gone Fishin:
Thanks again, will look through this. They've not mentioned anything about epilipsy.
It's unlikely she has epilepsy, but it's not uncommon to treat carefully given that she had multiple severe seizures from med withdrawal. It's just FYI. [Reply]
Great news!! Hope she gets to go home soon... get her one of those little bells to ring if she needs something... There’s no way she would take avantage of that...:-) [Reply]
Originally Posted by Kman34:
Great news!! Hope she gets to go home soon... get her one of those little bells to ring if she needs something... There’s no way she would take avantage of that...:-)
I'll just tell her to ring it when she wants sex. That should keep it quiet. [Reply]
Been following this thread and waiting for updates to see how she is progressing. I’m glad to see she seems to be doing well and looks like she’s expected to make a full recovery. I will continue to send good thoughts your way hog with the hope that your wife continues to get better and makes it home soon. [Reply]
Originally Posted by Hog's Gone Fishin:
Just got home from the hospital again. She's still not had a seizure since friday night. Speech is good and normal. Long term memory is good but short term is all messed up.
So, I actually spoke with her doctor (not the neurologist) as she came through at 11:30. In summary she expects full recovery, said short term memory loss is normal at this point. MRI negative but the EEG showed a portion of her brain misfiring. She wants to do another EEG today.
Her opinion is the underlying cause is medication withdrawal from the clonazepan she was on for the last 12 years. Before surgery she couldn't keep anything down as she was puking every 15 minutes so I expect she went 2 days without it in her system and then the surgeon had cut it way back at surgery and recovery.
I still haven't caught the neurologist as I've found he does his rounds between midnight and 3AM. The nurse says he has 7-8 hours of paperwork every day before rounds so thats why its late. First time I found a nurse that knew anything.
I want to thank ALL of you again for your thoughts and prayers and all the kind words. I've read every single post through the days and just want you guys to know I appreciate all of you. No doubt the power of CP came through again. Before long she will be able to read through this and it will make her smile.
Thats great news, sounds like things are finally stabilizing :-) [Reply]
