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...
Hi all, I have been here before & really appreciate the help & advice you have given me.
I have had a lot going on in the last couple of months & today has been a weird day. Sorry in advance for long post but otherwise it would be hard to understand what happened today. The bottom part is about the seizure.
I had a flare up in May & part of it was the right eye not opening properly & blinking rapidly all the time. Left eye was starting to do the same too.
I had the methyl/prednisolone treatment in mid May to try to help the eyes improve & me get over the flare up too. Didn't do rehabilitation that they wanted as needed to be home for Mother in laws funeral & needed time with husband after being in hospital from day after her passing too.
Fast forward to today. I have still not fully come back to any good standard after the flare up, not helped by a virus for the last 4 weeks too. Right eye has had poor vision - blurred & cloudy all the time & very rarely opens much at all & constantly blinking fast. The left eye has started to do the same recently too but I have tried to ignore it.
Today I went in to the Royal Melbourne Hospital for Botox treatment on right eye (or so I thought). The Dr's reviewed my eye's, discussed Botox treatment on 1 or both eyes which shocked me to put it mildly. As the Dr's do they discussed it between themselves & decided that I needed the Botox for both eyes, different doses the stronger being for the right eye of course. What surprised me was that the Dr would/could not tell me how deep the needles would go in or hurt. All he said was to relax so that the needles would not hurt in the eye.
I tried to relax but the first injection did hurt in the right eye lid (near the eye ball). That one hurt, the rest didn't hurt much at all, very minor stings/pricks, could feel them but didn't flinch for most. They varied from above the eye, right at the eye ball, under the eye ball & on the eye socket underneath as well as in the corner of the eyes.
The Dr did explain the risks & possible things to look out for. I will probably have black eyes when the bruising comes out on/around the eyes. The eyes may become dry in which case get eye drops from the chemist to moisten the eyes. Another possible effect could be that the eyes wont close properly too, again eye drops to moisten should fix that. As he said they have to warn you about the possible risks but they are not common.
Don't know how effective the Botox will be or how long it will last so just have to try it & see if it helps. Eye drops have not helped as they don't stay in when eye would not stay open. I am hoping it will work, help & last too. I go back in 4 months to see them & review it all.
Tonight the left eye is very watery which was not unusual but it is more so, both eyes are a little bit sore but not too bad. I will keep you updated.
One thing I didn't expect to happen today is a bad seizure/fit. I have been having them for probably about 1 year & been told ms is the cause. Apparently I did "blank out" (eyes open but no response to the driver for a couple of minutes on the way home.
Later today I know I have had a worse one at home as leg bag was full (very shortly after emptying & I often lose bladder when I have any kind of fit), anyway I was sitting watching TV & I literally jerked quite forcefully upwards on my chair & almost off it. I have only had these sort of fits a few times. It is quite scary to have any sort of fit/seizure & these one's are getting even scaryier. Don't know if it has anything to do with the Botox or not. Will keep a record & hope it doesn't happen again.
This seizure was very different to any others I have had. I think I knew something was wrong as my my back spasmed upright which it always seems to do when I have a seizure. This time the back spasmed, my head went back very hard into the back of the chair that I was sitting on, my legs pushed hard on the leg rest (was in the reclining chair) & my bum lifted itself off the chair in a weird way,
I don't know how to describe it. I was more aware of what was happening but as if I was looking at myself from outside my body. I have never had that before. The other really weird thing was that when I had the seizure/fit my uterus/vagina (sorry guys) spasmed as well. It felt like it closed & then pulled me up as well. (I have a suprapubic catheter so don't go the loo that way). It did not release for ages & very uncomfortable to say the least.
This was all a few hours after I got home (over 1 hour trip home). I was very shaky afterwards & feel like I am trembling in my body. I am still the same & it is probably 3-4 hours after I had the seizure. I am presuming it was only 1 but can't swear by it. My uterus/vagina has seized up again soon after & is not releasing at all which is very uncomfortable to say the least.
I guess I am writing this here as it is all so different to any others that I have had & I don't know if I should attempt to contact my neurologist tomorrow or wait & see if it all settles with time.
Thanks for reading
Lets hope the Botox is worth it & doesn't cause any bad reactions too.
I have had a lot going on in the last couple of months & today has been a weird day. Sorry in advance for long post but otherwise it would be hard to understand what happened today. The bottom part is about the seizure.
I had a flare up in May & part of it was the right eye not opening properly & blinking rapidly all the time. Left eye was starting to do the same too.
I had the methyl/prednisolone treatment in mid May to try to help the eyes improve & me get over the flare up too. Didn't do rehabilitation that they wanted as needed to be home for Mother in laws funeral & needed time with husband after being in hospital from day after her passing too.
Fast forward to today. I have still not fully come back to any good standard after the flare up, not helped by a virus for the last 4 weeks too. Right eye has had poor vision - blurred & cloudy all the time & very rarely opens much at all & constantly blinking fast. The left eye has started to do the same recently too but I have tried to ignore it.
Today I went in to the Royal Melbourne Hospital for Botox treatment on right eye (or so I thought). The Dr's reviewed my eye's, discussed Botox treatment on 1 or both eyes which shocked me to put it mildly. As the Dr's do they discussed it between themselves & decided that I needed the Botox for both eyes, different doses the stronger being for the right eye of course. What surprised me was that the Dr would/could not tell me how deep the needles would go in or hurt. All he said was to relax so that the needles would not hurt in the eye.
I tried to relax but the first injection did hurt in the right eye lid (near the eye ball). That one hurt, the rest didn't hurt much at all, very minor stings/pricks, could feel them but didn't flinch for most. They varied from above the eye, right at the eye ball, under the eye ball & on the eye socket underneath as well as in the corner of the eyes.
The Dr did explain the risks & possible things to look out for. I will probably have black eyes when the bruising comes out on/around the eyes. The eyes may become dry in which case get eye drops from the chemist to moisten the eyes. Another possible effect could be that the eyes wont close properly too, again eye drops to moisten should fix that. As he said they have to warn you about the possible risks but they are not common.
Don't know how effective the Botox will be or how long it will last so just have to try it & see if it helps. Eye drops have not helped as they don't stay in when eye would not stay open. I am hoping it will work, help & last too. I go back in 4 months to see them & review it all.
Tonight the left eye is very watery which was not unusual but it is more so, both eyes are a little bit sore but not too bad. I will keep you updated.
One thing I didn't expect to happen today is a bad seizure/fit. I have been having them for probably about 1 year & been told ms is the cause. Apparently I did "blank out" (eyes open but no response to the driver for a couple of minutes on the way home.
Later today I know I have had a worse one at home as leg bag was full (very shortly after emptying & I often lose bladder when I have any kind of fit), anyway I was sitting watching TV & I literally jerked quite forcefully upwards on my chair & almost off it. I have only had these sort of fits a few times. It is quite scary to have any sort of fit/seizure & these one's are getting even scaryier. Don't know if it has anything to do with the Botox or not. Will keep a record & hope it doesn't happen again.
This seizure was very different to any others I have had. I think I knew something was wrong as my my back spasmed upright which it always seems to do when I have a seizure. This time the back spasmed, my head went back very hard into the back of the chair that I was sitting on, my legs pushed hard on the leg rest (was in the reclining chair) & my bum lifted itself off the chair in a weird way,
I don't know how to describe it. I was more aware of what was happening but as if I was looking at myself from outside my body. I have never had that before. The other really weird thing was that when I had the seizure/fit my uterus/vagina (sorry guys) spasmed as well. It felt like it closed & then pulled me up as well. (I have a suprapubic catheter so don't go the loo that way). It did not release for ages & very uncomfortable to say the least.
This was all a few hours after I got home (over 1 hour trip home). I was very shaky afterwards & feel like I am trembling in my body. I am still the same & it is probably 3-4 hours after I had the seizure. I am presuming it was only 1 but can't swear by it. My uterus/vagina has seized up again soon after & is not releasing at all which is very uncomfortable to say the least.
I guess I am writing this here as it is all so different to any others that I have had & I don't know if I should attempt to contact my neurologist tomorrow or wait & see if it all settles with time.
Thanks for reading
Lets hope the Botox is worth it & doesn't cause any bad reactions too.
My goodness gracious, you have really been put through it my dear. I am so sorry to hear about your flare and family issues that kept you from taking care of yourself. I know that life happens sometimes and there is nothing we can do, but ride it out and do our best. And that is just what you have done! Now you are concentrating on you and that is good.
Your seizure activity may be a reaction to the Botox. Though it sounds very familiar to me. I have Complex Parrtial Seizures and MS. The seizure you described to us is very similar to ones that I have on occasion. I seem to have during periods of undo stress. So, I am thinking that the stress of your appointment may have brought it on. Practically speaking having needles pocked in ones eyes would stress anyone out.
And yes, I think a call to your neurologist is a good idea. Personally, I would like to know if it was a reaction from the Botox. But, I think you need to sort out and get your seizure disorder under control.
Good luck to you my dear and please let us know how things go.
Hugs, Cathy
I had hoped it would at least give me relief for a while.
The eye is mostly shut, only not dry. Have tried eye drops & not much difference. so waiting till September when I see the neuro for review.
Have got an appt wit eye drs on Monday so hope they can think of something else to help too. At the moment very frustrating too.
Have still been having seizures frequently of all different sorts & vary length,
Late at night, will write more on w;end. too tired to type right.
Cant concentrate long. Head hurts often. Keep blanking out & hubby said keep blanking out at various times in day, cant even think straight. Have had enough of this. Eyes giving me grief. Cant concentrate on anything.
Totally fed up to say least. Go to eye dr tomorrow so hope they find out something to help.
Stop the world I want to get off. Excema is bad, migraines bad, fatigue through roof & barely waking & I used to do lots of walking, not any more.
had several seizures yesterday at work & knocked my head on document holder at one stage. That was causeing problems as I kept having to go to loo to empty bag (catheter), got to train on way home & had a longer one than usual, fortunately the driver said something repeatedly to me at my station so I got off the train (in electric wheelchair so need ramp) but I was shaking & felt like crap. Bag was full & couldn't think straight, should have got a taxi but went home on chair (takes closer to 30 mins) & it was raining hard. Got home & was so tired I was falling asleep in my chair. Felt really sick & struggled to eat tea. Now got to worry about having the seizures on the train too.
Friend that travels in with me some mornings has also said that they are increasing in the morning on the train but usually shor duration.
Have left messages with neurologist.