Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
I have posted here before about the seizures I am having & week in hospital with the video - that caught them but eeg showed nothing so no dx. Still having them & getting more frequent where I just blank out for anything from seconds to 15mins on Sunday (scared crap out of friend that was driving & she pulled over so could watch me).
Anyway fast forward to today & i finally went to the pain clinic for assessment - both neuro (ms) & gastro (diverticulitis) had said I needed that. They went through everything & did the usual movement tests - left side weak - der. As luck would have it I "lost it" while in there - apparently a couple of minutes I didnt respond but did spasm of the back first then nothing. When I came back to & didnt realise it they (Dr & student) were both looking at me & asked me how I felt, then told me why. Checked my leg bag (catheter) & it was full. Guess who had one right there. They made a note in my file.
Ended up giving me 2 prescriptions which filled there. First off I start on tegretol - 1 x 100mg at night, if no reactions after 3 days can increase to 2 times a day & see if that helps. Can increase to 2 x 2 times a day with gp monitoring it. If that is not stopping/controlling pain & seizures then add in Gabentin. Again in a sliding scale.
I am not scared of the drugs or side effects, will just watch for any changes. Wad of info from pharmacist & read some of it.
I know there have been lots of posts on these drugs & I had saved some links before computer played up & lost stuff. Is there any important things that people have used them would say should look for first? I would prefer to know from people who use them.
I am pleased that I finally got listened to & given something to try to help.
Thanks in advance.
Anyway fast forward to today & i finally went to the pain clinic for assessment - both neuro (ms) & gastro (diverticulitis) had said I needed that. They went through everything & did the usual movement tests - left side weak - der. As luck would have it I "lost it" while in there - apparently a couple of minutes I didnt respond but did spasm of the back first then nothing. When I came back to & didnt realise it they (Dr & student) were both looking at me & asked me how I felt, then told me why. Checked my leg bag (catheter) & it was full. Guess who had one right there. They made a note in my file.
Ended up giving me 2 prescriptions which filled there. First off I start on tegretol - 1 x 100mg at night, if no reactions after 3 days can increase to 2 times a day & see if that helps. Can increase to 2 x 2 times a day with gp monitoring it. If that is not stopping/controlling pain & seizures then add in Gabentin. Again in a sliding scale.
I am not scared of the drugs or side effects, will just watch for any changes. Wad of info from pharmacist & read some of it.
I know there have been lots of posts on these drugs & I had saved some links before computer played up & lost stuff. Is there any important things that people have used them would say should look for first? I would prefer to know from people who use them.
I am pleased that I finally got listened to & given something to try to help.
Thanks in advance.
I was also first prescribed tegretol. 1500mg daily...way too much...gradually it was lowered to 600 mgs daily which controlled to seizure activity provided I didnt miss a dose (I was taking 200mgs tabs 3 times daily) Mos trecently Carbatrol was introduced. This is a timed releas form of tegretol and is a joy. I tak it 300mgs twice daily. Even if I accidently skip a dose...there's enough in my system that I dont have the seizure activity. Also NO ALCOHOL!! drinking renders the meds useless.
Things been very stressful to put it mildly & I am sure that has contributed to more of the seizures. Witnessed at work, home & in hospital so not being denied anymore.
Work has put a phone in the office I am in, ridiculous part is that it is at the desk furthest from me so not much use to me if not able to move. I have got my supervisors direct number on my mobile now so will phone on that if have to. Off work for 2 weeks anyway at least.
I have had some of the seizures times & they seem to average between 2-5minutes & often have the bad back spasm before them or with them so I have worked out that if I am confused, bag is full, & back sore - neck wont move etc it is quite likely I have had another one.
Thanks for all comments & help on here, it is really great to be able to learn from others.
S
Okay.. breathe deep (and slow) in, almost whistle when breathe a slow breath out. That work of yours....and the phone being far away, yikes.
I am glad to hear you have your supervisors ph #. Take care of yourself. I find this website informational maybe will you too: www://bravegirlsclub.com/dailytruths. :-)
Still got very little vision in right eye, struggling to walk, fatigue is through the roof & of course I have been having more seizures. On average been having 1 every 24 hours at least. Thought that it was getting better as seemed to be getting less. Husband has been timing them & generally varying between 1-5 minutes. Have lost up to 1-2 hours during the day, don't know if seizures or just sleep but back pain & full catheter bag with confusion each time. This last week has been very bad.
Have been slack on recording them recently as had to record everything about the ms & eye issues, abdomen & bowel issues & try to get better.
Had spasms of up to 1 hour in hospital but not seizure as I was able to talk just couldnt stop legs going mad & ended up with stiff back & in bad way. The nurses checked on me & gave me valium, tramadol & then ended up with in injection to knock me out (probably morphine).
Still trying to get my head around this, have been in denial about the seizures side of things I think because of too many other issues.
"I have just three things to teach simplicity, patience, compassion. These three are your greatest treasure" Lao Tzu
"It's not about how hard you hit, its about how hard you can get hit and keep moving forward." Rocky Balboa/Rocky
"If you surrender to the wind, you can ride it" Toni Morrison
I dont know if any of these will help, I hope so. Youre going through a rough patch, medically. I care. I had a sz this morn, I hate having no control. My hope for you, this rough patch will start to subside! Good luck and God bless
Appreciate your reminder.
Struggling with everything today but just trying to cope as best as I can.
Took it easy today but trying to go back to work tomorrow so that will be tester for sure.
Thanks for support
How are you doing?? How's work going??
I am up to the amount that the pain clinic said to go to on the gabentin & tegretol & think that they are working well as don't seem to be having the seizures that I was. I am still having some breakthrough one's which are making life interesting. I go back to the pain clinic later this month so hope they will review them too as the gp wont do more & neurologist didn't want to alter them either.
I am on an electric w/chair & usually my hand goes off the control if anything happens (always did on a scooter) but this doesn't always happen with the chair & I have run into walls etc. Wonder if I am having small seizures & thats why I am losing control.
MS is still giving me a lot of trouble & the flare up hasn't gone away so still struggling with a lot of that, eyes are not real good & balance, strength etc vary. Still on cortisone so got to get off that too.
It's just a day by day thing really & trying to get lots of rest so that don't overdo it. Still waiting on new desk at work but got w/chair & large screen which helps.
You are gradually going back to work, I think that is such a good thing.
Yes its a possibility you are having small seizures when wheelchair goes into wall....I have something that may be similar....I will all of a sudden drop something I'm carrying or completely lose muscle control in my right hand, I was told this in itself was seizure activity. But you also mentioned your muscle strength isnt real good. I hope your MS starts to settle down I remember what you said about that in a previous post. I dont know how you do it, YOU are a very strong person.
They say life is a highway...or a rollercoaster....why can't it be a Sunday picnic.....just sometimes.