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, I have been having the absence seizures - caused by multiple sclerosis apparently as nothing shows on eeg but video did. I have been having the absence seizures since about August last year that we know of (previous to that accused of tuning out etc).
Up till recently it was where my eyes would still be open & the old saying of "lights are on but no one is home" is how my husband would describe them. Then he realised that it was more than that as I didn't respond & eyes didn't move etc. Anyway been on tegretol 3 x 100mg 2 times a day & neurologist & pain Dr wouldn't increase them when I saw both as changing pain medications & neurologist waiting on mri's to try & see what is happening over all.
Monday (2 weeks ago I think) Hubby came home from work & I was sitting in usual recliner with legs up & lap top on lap & he couldn't get any response from me for over 5 mins. He said it wasn't like asleep as then I would shrug his hand off or move etc. This time I didn't respond & when I did I really bit at him & told him off for yelling at me & said some other crap that didn't make sense to him. He was about to call an ambulance & still debated it but I calmed down after a few minutes (was really aggro at him to start with).
That friday I was at work & one of my colleagues came into where I sit (with my back to rest of team & in different office) & asked if I was ok? Apparently I didn't answer him till he was right up to me & asked very loud & then I answered very rudely with something like :"of course I am, what the F do you you want?" He was really surprised as I don't talk like that. He had come in as my head was down from the back view. He came back in a few minute later to see if I was ok & came up (cautiously) & asked if I was ok & apparently I didn't make sense with my answer. He then went & spoke to our team leader who came in & asked others that were in the office using other computers (hadn't been there before) to leave the office) & then asked me if I was ok or might I have had a seizure? When i said I think I might have, then checked my bag (have catheter) & it was full - only emptied within 30-60 mins so shouldn't have been & said think I might have so he said he had to get first aid officer to check me. (procedure now). I said ok & was told not to get up & move. Couldn't work out how to reverse my electric wheel chair either. When first aid lady came in she asked me couple questions & the only way I could explain it is "I felt wooly headed & a bit off with the fairies". Looked at my desk & papers in stacks in all directions (usually neat). She asked if I wanted to go home & I said should be alright, will see how I am after I go for a walk to toilet (on ground floor, we are on 2) & I had to take another girl with me when I went. Was walking as if I was stiff legged (or had wet pants) & very uncoordinated. When I got back to my desk team leader came back to me & asked if I would like to go home earl or how was I & I said I would go home early. They made me check that David (hubby) would be home when I got home, then ordered a taxi for me & gave me a card to use to pay for it.
Both these times I was exhausted after it & couldn't think well all night.
Then last Friday I was home (bus didn't come so came back to wait for daylight or change to scooter), had put bag on scooter, turned around & next thing I know flat on floor. It wasn't like how I go down with ms, where I know I am losing balance & go down but it was one minute standing up, then sort of realised I was on the floor & it was probably 5 or more minutes later. When I stood up I was sore & stiff & a bit confused. Decided since not steady would take wheelchair to work (should have stayed home). Was not a good way with trouble concentrating, spasms of both legs (ms) & general not well feeling.
Anyway,that & the following week had several times where people had to talk to me numerous times as just no response - absence ones of varying lengths. Had another drop down at home (fortunately) during the week where I was walking down the hall, next I know I was laying on the floor. Don't know how long for or anything other than again bag full, very unsteady in pain etc etc. Part could be ms (stiffness & pain after) & part could be seizures. I really don't know at this stage.
What I am wondering (after long explanation) is can absence seizures change to be causing the drop down type & getting longer or does it sound like some thing else? We are really at a loss for what is going on other than they are increasing in frequency, in time out to it (sometimes) & other effects like the falling without knowing it are scary. If I fall & know it, like can feel myself falling I know it is ms, or I will stumble etc. Also being quite aggressive & rude afterwards too which is not my nature at all. But these times I am just down & have lost time & memory & bladder too. The bladder & confusion is the main ways I differ the 2 - is that right do you think too?
I know you aren't Dr's but would appreciate responses/ideas from any of you who have experienced this type of thing happening too.
Also should I be chasing neurologists before due to see him in September since this has changed esp over May-now? It is a short time for changes but they are getting worse.
Discounting this week as had rotten flu/virus & that always makes anything else worse too.
Sorry for long post & thanks for reading & responses in advance.
Up till recently it was where my eyes would still be open & the old saying of "lights are on but no one is home" is how my husband would describe them. Then he realised that it was more than that as I didn't respond & eyes didn't move etc. Anyway been on tegretol 3 x 100mg 2 times a day & neurologist & pain Dr wouldn't increase them when I saw both as changing pain medications & neurologist waiting on mri's to try & see what is happening over all.
Monday (2 weeks ago I think) Hubby came home from work & I was sitting in usual recliner with legs up & lap top on lap & he couldn't get any response from me for over 5 mins. He said it wasn't like asleep as then I would shrug his hand off or move etc. This time I didn't respond & when I did I really bit at him & told him off for yelling at me & said some other crap that didn't make sense to him. He was about to call an ambulance & still debated it but I calmed down after a few minutes (was really aggro at him to start with).
That friday I was at work & one of my colleagues came into where I sit (with my back to rest of team & in different office) & asked if I was ok? Apparently I didn't answer him till he was right up to me & asked very loud & then I answered very rudely with something like :"of course I am, what the F do you you want?" He was really surprised as I don't talk like that. He had come in as my head was down from the back view. He came back in a few minute later to see if I was ok & came up (cautiously) & asked if I was ok & apparently I didn't make sense with my answer. He then went & spoke to our team leader who came in & asked others that were in the office using other computers (hadn't been there before) to leave the office) & then asked me if I was ok or might I have had a seizure? When i said I think I might have, then checked my bag (have catheter) & it was full - only emptied within 30-60 mins so shouldn't have been & said think I might have so he said he had to get first aid officer to check me. (procedure now). I said ok & was told not to get up & move. Couldn't work out how to reverse my electric wheel chair either. When first aid lady came in she asked me couple questions & the only way I could explain it is "I felt wooly headed & a bit off with the fairies". Looked at my desk & papers in stacks in all directions (usually neat). She asked if I wanted to go home & I said should be alright, will see how I am after I go for a walk to toilet (on ground floor, we are on 2) & I had to take another girl with me when I went. Was walking as if I was stiff legged (or had wet pants) & very uncoordinated. When I got back to my desk team leader came back to me & asked if I would like to go home earl or how was I & I said I would go home early. They made me check that David (hubby) would be home when I got home, then ordered a taxi for me & gave me a card to use to pay for it.
Both these times I was exhausted after it & couldn't think well all night.
Then last Friday I was home (bus didn't come so came back to wait for daylight or change to scooter), had put bag on scooter, turned around & next thing I know flat on floor. It wasn't like how I go down with ms, where I know I am losing balance & go down but it was one minute standing up, then sort of realised I was on the floor & it was probably 5 or more minutes later. When I stood up I was sore & stiff & a bit confused. Decided since not steady would take wheelchair to work (should have stayed home). Was not a good way with trouble concentrating, spasms of both legs (ms) & general not well feeling.
Anyway,that & the following week had several times where people had to talk to me numerous times as just no response - absence ones of varying lengths. Had another drop down at home (fortunately) during the week where I was walking down the hall, next I know I was laying on the floor. Don't know how long for or anything other than again bag full, very unsteady in pain etc etc. Part could be ms (stiffness & pain after) & part could be seizures. I really don't know at this stage.
What I am wondering (after long explanation) is can absence seizures change to be causing the drop down type & getting longer or does it sound like some thing else? We are really at a loss for what is going on other than they are increasing in frequency, in time out to it (sometimes) & other effects like the falling without knowing it are scary. If I fall & know it, like can feel myself falling I know it is ms, or I will stumble etc. Also being quite aggressive & rude afterwards too which is not my nature at all. But these times I am just down & have lost time & memory & bladder too. The bladder & confusion is the main ways I differ the 2 - is that right do you think too?
I know you aren't Dr's but would appreciate responses/ideas from any of you who have experienced this type of thing happening too.
Also should I be chasing neurologists before due to see him in September since this has changed esp over May-now? It is a short time for changes but they are getting worse.
Discounting this week as had rotten flu/virus & that always makes anything else worse too.
Sorry for long post & thanks for reading & responses in advance.
In answer to your question: You Are having more than 1 kind of seizure. And yes, One can merge into the other. Then again, they can be entirely Separate incidents. I would Note everything you experienced in My Journal! Cuz, Non-response, lost time, mood swings, confusion, bladder, drop attacks, are all seizure related.
If DRS are waiting for test results & change of pain meds, then you may have to wait a little longer to see that Neuro. But, I Would call, anyway, to up date them & they Just Mite wanna see you sooner. Ya never know. But, as long as the incidents aren't lasting over 5 min, I doubt it. :( But, ya Won't know till ya give them a Call. :
Love Candi
As for going to your neurologist I have found that finding the right level of seizure medication to control my seizures to be a tricky thing. And from your description you do not sound under control, especially with the falling episodes. I would recommend that you at least talk to your doctor, it may be time to adjust your Tegrotol.
I am so glad that you have found this web site and I hope that we have been helpful to you! Let us know how you are!
Gentle Hugs, Cathy
I think because my seizures are so new - as in only really recognised late last year & tested but nothing on ecg but showed on video so had to wait for pain clinic to give me tegretol.
Have noted it all down in journal & also made a note on notepad/phone to take to work with me tomorrow to phone neuro's ms nurse & see what she says with increase in them & also other crap happening like the ms optic neuritis has not eased from May yet when I had methyl/pred & hospital too. Pain level over all is worse & this could be contributing to the rest maybe??
I thought that no-response & lost time was part of seizures but didn't know that mood swigs & drop attacks was or that the seizures can merge into each other too. Thought if got one kind- absence seizures could then turn into another kind. Would not wish that on anyone.
Spoke to a gp (not my regular one but another at the clinic who I have seen before) & she said that I am running a temperature, have a chest infection (& I was feeling better than had during the week) & so had a virus. She gave me anti-biotics but when I said about the seizures & what had been happening - as above, she said to definately ring the neurologist on Monday as she thought that it sounded like seizures getting worse & different too. Was pleased that she believed me & did react in that way as other times this Dr has not always been that thorough but was very thorough, esp for a Saturday when only 1 Dr on & always busy. She would not adjust tegretol as she is not my regular Dr & would prefer me to see her during the week if cant get into neuro quickly.
Will definately follow up tomorrow with neuro & later this week with regular Dr if cant get in to neuro.
Thanks for your help, really appreciate your taking the time to respond.
Hugs, Aussue