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 will apologise at the start for the long post, but wanted to give as much information as I could.
I have posted here a while ago when the neurologist suspected I may have epilepsy due to me zoning out, losing time, sometimes as much as 2 hours at a time & staring into space. I would also stop mid sentence & be totally unaware of what I was doing or saying when I came back. It was getting very noticeable not only at home but at work & out. I had a car accident where I backed into a building, was parking & somehow went into reverse instead of forward & hit accelerator. Got out of car & stood there & didnt have a clue what had happened.
Did the ecg/brain test & Neurologist said no sign of epilepsy, probably old age etc. I also have ms as well as other medical conditions. I was relieved not epilepsy but wondering again. This is update of this month which is making me wonder.
4 April 2010
We were sitting watching TV & my back spasmed & literally threw me forward with my back straight & really hurt. This happened several times & I have never had that or anything like it before.
I woke up early hours this morning & my left leg had been spasming, then it went totally dead & I couldn't move it at all. Left arm did the same though I could move fingers & toes so that threw me. I tried to move into a different position & that was nearly impossible. My left eye would only open a crack & I couldn't focus with right eye. Mouth was clenched shut with shooting pains in the jaw. I couldn't wake David, I couldn't call or move & boy was I scared. I have had where one side is dead but both legs went dead to movement.
I laid there for what seemed like ages before I could move & then David woke up when I got out of bed. I went into the kitchen & had a pain killer (tramadol) & antihistamine to try to help. I was struggling to walk with the walker & got back to bed. I still couldn't get to sleep & the pain did not ease. I had a Migraine/headache as well.
I think I dosed off for a short while & then the same thing happened again. This time it was my total body, the left side of my face was numb including my ear. David was only lightly asleep so realised there was something wrong & tried to get me to talk but I couldn't open my mouth. He helped me get up & walk to get the legs moving & then I had an endone/morphine tablet & went back to bed. I was itchy all over as well so he gave me a back rub & I dosed off. By this stage I had a migraine as well.
I slept in this morning. Left leg is dragging, foot keeps spasming & jumping everywhere, left arm is aching, and eyes are both hurting. The back is so sore keep moving to try to sit comfortable & that is not working. Head is very achy/migraine.
10 April
Got home from work & collapsed into my recliner chair with feet up & a coffee. I kept dosing off. I had prepared vegetables the day before & we didnt have them so knew tea was under control.
I was real bad that evening falling asleep in the middle of saying something & same when David was talking to me. He ended up frustrated of course. I went to bed after tablets & to sleep very quickly. So much for sleep. Early hours in the morning my legs & arms decided to have their own party, spasming in all directions & very painful. Woke me up of course & I tried sitting up to see if that helped & it did with the arms. I rubbed my legs to try to them got to settle & it helped a little but then they got real painful. David got up & got me a tramadol to take to try & help.
Eventually went back to sleep though legs were still moving. Woke up about 8am & was in agony again. Couldn't move leg, left arm, both hands clamped, eyes didnt want to open & mouth clenched again. Gradually got right leg working but left was a dead weight, eyes opened though not fully but could see ok - very relieved.
The back spasms & other spasms are getting a lot worse & more often. The back spasm is like an electrical voltage through the spine that jerks & then leaves it burning. Very painful for sure. That seems to mainly be happening at night. The leg & arm (ESP left side) are spasming most nights & sometimes during the day as well. It is draining me of any energy/strength.
I went to the ms clinic neurologist on Friday 16 April & one of the things he said the back spasms could be epilepsy. He said, not usual for ms to have back spasms like I am having. These are continuing both during day & night & at night it can be arms/legs as well. They are getting worse as I am now also getting the spasm into the neck which means I can not move when I come to. I am also getting a lot of the lock jaw, cant open mouth & pain when I wake. The back spasm, burning, jaw pain & not being able to open are all new this month. This is real scary in that it is getting so bad in such a short period of time too.
I know some of this is ms related but not all. Just hoping for some advice on what other tests I should ask for, or what I should note down to tell the neurologist when I see him. Any advice/ideas would be appreciated.
I will apologise at the start for the long post, but wanted to give as much information as I could.
I have posted here a while ago when the neurologist suspected I may have epilepsy due to me zoning out, losing time, sometimes as much as 2 hours at a time & staring into space. I would also stop mid sentence & be totally unaware of what I was doing or saying when I came back. It was getting very noticeable not only at home but at work & out. I had a car accident where I backed into a building, was parking & somehow went into reverse instead of forward & hit accelerator. Got out of car & stood there & didnt have a clue what had happened.
Did the ecg/brain test & Neurologist said no sign of epilepsy, probably old age etc. I also have ms as well as other medical conditions. I was relieved not epilepsy but wondering again. This is update of this month which is making me wonder.
4 April 2010
We were sitting watching TV & my back spasmed & literally threw me forward with my back straight & really hurt. This happened several times & I have never had that or anything like it before.
I woke up early hours this morning & my left leg had been spasming, then it went totally dead & I couldn't move it at all. Left arm did the same though I could move fingers & toes so that threw me. I tried to move into a different position & that was nearly impossible. My left eye would only open a crack & I couldn't focus with right eye. Mouth was clenched shut with shooting pains in the jaw. I couldn't wake David, I couldn't call or move & boy was I scared. I have had where one side is dead but both legs went dead to movement.
I laid there for what seemed like ages before I could move & then David woke up when I got out of bed. I went into the kitchen & had a pain killer (tramadol) & antihistamine to try to help. I was struggling to walk with the walker & got back to bed. I still couldn't get to sleep & the pain did not ease. I had a Migraine/headache as well.
I think I dosed off for a short while & then the same thing happened again. This time it was my total body, the left side of my face was numb including my ear. David was only lightly asleep so realised there was something wrong & tried to get me to talk but I couldn't open my mouth. He helped me get up & walk to get the legs moving & then I had an endone/morphine tablet & went back to bed. I was itchy all over as well so he gave me a back rub & I dosed off. By this stage I had a migraine as well.
I slept in this morning. Left leg is dragging, foot keeps spasming & jumping everywhere, left arm is aching, and eyes are both hurting. The back is so sore keep moving to try to sit comfortable & that is not working. Head is very achy/migraine.
10 April
Got home from work & collapsed into my recliner chair with feet up & a coffee. I kept dosing off. I had prepared vegetables the day before & we didnt have them so knew tea was under control.
I was real bad that evening falling asleep in the middle of saying something & same when David was talking to me. He ended up frustrated of course. I went to bed after tablets & to sleep very quickly. So much for sleep. Early hours in the morning my legs & arms decided to have their own party, spasming in all directions & very painful. Woke me up of course & I tried sitting up to see if that helped & it did with the arms. I rubbed my legs to try to them got to settle & it helped a little but then they got real painful. David got up & got me a tramadol to take to try & help.
Eventually went back to sleep though legs were still moving. Woke up about 8am & was in agony again. Couldn't move leg, left arm, both hands clamped, eyes didnt want to open & mouth clenched again. Gradually got right leg working but left was a dead weight, eyes opened though not fully but could see ok - very relieved.
The back spasms & other spasms are getting a lot worse & more often. The back spasm is like an electrical voltage through the spine that jerks & then leaves it burning. Very painful for sure. That seems to mainly be happening at night. The leg & arm (ESP left side) are spasming most nights & sometimes during the day as well. It is draining me of any energy/strength.
I went to the ms clinic neurologist on Friday 16 April & one of the things he said the back spasms could be epilepsy. He said, not usual for ms to have back spasms like I am having. These are continuing both during day & night & at night it can be arms/legs as well. They are getting worse as I am now also getting the spasm into the neck which means I can not move when I come to. I am also getting a lot of the lock jaw, cant open mouth & pain when I wake. The back spasm, burning, jaw pain & not being able to open are all new this month. This is real scary in that it is getting so bad in such a short period of time too.
I know some of this is ms related but not all. Just hoping for some advice on what other tests I should ask for, or what I should note down to tell the neurologist when I see him. Any advice/ideas would be appreciated.
I do believe it's time to seek a second or third or more :( Neuro or Epileptologist (seizure specialist) opinions. Just becuz, your EEG was normal, does not mean you DON'T have Ep. EEG's aren't THAT reliable. Sometimes seizure activity can be buried too deep in the brain. Or you may not have had activity going on at the time of the test.
Has your DR suggested a longer EEG? 24-48 hr Portable machines are available for home use. Or how about a Video EEG? This would require several days (anywhere from 2-3 days up to 10 days) in the hospital while you are monitored. Have you ever had a 'sleep study' done? Has the DR requested X-rays of the problem areas? There is a new test available in some areas. Called an MEG. Here is some 'homework'. :)
Sixty seizures to None: Brain Scan detects Source - ABC News
http://abcnews.go.com/GMA/MindMoodNews/sixty-seizures-brain-scan=detects-source/story?id=9730383
Love Candi
What a great link. I have been trying to get an MEG scheduled for my hubby for over a year now. all 4 of his MRI's have been inconclusive. Although both CAT scans showed a shadowing on his right temporal lobe. 4 EEG's showed nothing.
I would think the MEG test going deeper into the brain tissue would be an option for more people.
Have you or anyone here had this test? We did go to Boston where the test is available. The Dr. there didn't feel the test was necessary at this point and just ordered an MRI & EEG.
I am still fairly new to this but finding out that in order to get the Dr.s attention you have to act like a 3 year old in the candy isle. "keep stomping your feet and screaming loud" I guess I may have some of his Keppra rage also. But I demand to be taken seriously.
a big hug to you! thanks for the link.
Ronnielee
Thank You. :) I love 'sharing'. :)
No, I have never had this test. Since seizures are controlled DRS see no reason for it. Plus, I am not willing to travel clear across AZ to get one. :)
HMMMM! Strange/coincidental: 30+yrs ago, my 1st CT scan showed a 'shadow' on my brain. Didn't say where. All MRI's, (6 or more) since, have detected nothing.
YEP, stomping/demanding, works for my Daughter, too. Me, I just go w/ the flow. :) DRS won't agree w/ me? I seek another. :)
I got 'mood swings' w/ my Pheno's. Never knew why I would be calm one sec & screaming at my kid the next. :( Researchers finally figured it out for me about 5?? Yrs ago. :( They (outbursts) happened if I was hungry or tired. Ya learn what works for you & stick w/ it. :)
HUGS & LOTS of LOVE!
Love Candi
I had a really bad Saturday night so was taken to the closest hospital Sunday morning & have only come home today.
The spasms got more frequent & stronger & totally uncontrolled. When the ambulance came I could speak, could move my head a fraction to each side - my neck had spasm, rest of my body was stuck in a paralysed position, straight out. Husband had already tried for 30 minutes to massage & see if he could get an arm or part of my body to release but it was all totally locked & each time they moved me I spasm again & so they had to wait till could move/ me. It took 2 crews - 4 people to be able to move me from bed to the chair to the stretcher me again as I couldnt bend or assist.
I was seen very quickly in hospital & the Drs did a variety of tests, I dont remember a lot of it, just being wheeled to different areas where they did x-rays & ct scans (so I have been told). They wanted to rule out any infection causing the spasm & paralysis.
A lot of blood tests were done as well.
Infection was ruled out from all those & I was not severely constipated (had taken a lot of laxatives etc to clear out on Saturday). They contacted my neurologist at Monash hospital to find out if it sounded like ms flare up & to use the methylprednisolone drip which he said no. They also needed to find out if I could be admitted there or needed to be transferred to one of the larger hospitals.
I was getting worse as the day went on with the jaw locking, unable to swallow or move, & my speech went very slurred & unclear. I was having more spasms one after another with less body control each time. It was a very scary time.
By about 6.30pm they had decided I was staying there but there were no beds available on wards so I would be left in the cubicle in emergency. At about 8pm they found me a bed so I was transferred to a ward which was much quieter & same people looking after me there.
Treatment was strong pain killers regularly, anti-nausea medication and monitoring. They had also put a catheter in mid afternoon as I couldnt release the bladder at all. A lot came out when they finally did that.
The Drs, nurses & all staff were fantastic to me while I was in hospital. I saw the physiotherapist, occupational therapist, speech therapist she was first especially because of speech & swallowing problems. I was put on a soft food diet & to stay on that till I see the speech therapist which is already booked in for next week. (This appointment had been made prior to me being in hospital).
The physiotherapist wrapped the bottom part of my spine to see if that would take the strain off when I move & that did make it a lot easier, I could then slowly sit up or move without the spasm taking over.
I am still having the spasm, not as severe as they were before I went into hospital. The Drs dont know what is causing them; they are worse at night so there is a question of night epilepsy or sleep apnoea as well. I am already on the wait list for the sleep test from last year. Management is taking morphine, though they didnt give me any to bring home as want me to use others pain medication & cold packs.
I wasnt in a hospital with neurology area (only some have the departments), but the Dr's were thorough. They did not look at epilepsy as one of the causes but were looking at "neurological" causes as a whole. I have a head MRI booked for next week & see the neurologist about 2 weeks after that so he will have more information.
I am still having the blank stare episodes too.
I am no closer to an answer to what is happening but at least they are investigating it.
Thank you all so much for your responses & taking the time to read this too,
Since I got home I am still having spasms/cramps in the back. It is like a pain in the centre lower spine that goes right up to neck/head. It jars me to an upright or different position when it happens & sometimes stays in that position for anything from 30seconds to minutes. Thankfully not as long as last week. The pain in the head is getting more noticeable after it & hubby said I am very "vague" & spaced out. I dont remember what I was doing before it happened in most cases & just know that I am in pain & "dont feel right" after it. If I go to stand up I am very shaky & left side does not move much at all.
I am also having a lot more of the "spaced out" look, where I am sitting & stop talking or whatever i was doing, stare ahead, still blink but then get like a shiver or shake right down my body & confused. Hubby said these can be anything from seconds to minutes. I have bitten my tongue & lips several times with this & now have a sore tongue & a couple of sores on my bottom lip.
This is all on top of ms & bladder & bowel issues - forgot I am definately having bladder leak when the spasm happens.
I feel like there is a lot going on & dont know which to concentrate on more or how to get Dr's to believe me & not that I am a hypochondirac or reading too much & making it up. Not that they would dare that after the last week.
I am having a head mri on Tuesday & due to see neurologist on the 6th May. He has previously done the eeg that took less than 1 hour & showed nothing so he said not epilepsy. I have been trying to work out what else it could be as I dont want to have epilepsy (no one would want any of these neurological conditions). They have said it is not part of ms & it certainly is not part of diverticular, excema, asthma, cushings disease etc.
Sorry for long post but any ideas & thoughts would be appreciated. I am trying not to worry too much but each time it happens it worries me more.
Thanks in advance
One question I have is do people have back spasms with epilepsy?
I had a real bad night last night. When I woke up I could feel my right leg moving back & forward, my left leg was straight out & both were pain. My left arm was bent ho with the hand near breast area & right hand was actually holding the bed pole beside my bed. My face was basically numb & jaw was locked shut.
When I got up my legs were trembling & very weak & I was freezing cold (it was a cold night but i had plenty of blankets etc). When I tried to write down what had happened (basics) so that I can tell dr I could hardly hold the pen & my writing is barely legible. My back & neck & head hurt & still hurt later after I had gone back to bed for more sleep. They have been hurting most of the day & the spasms have been frequent in the back today.
I am getting very scared as I dont want a repeat of the ones that put me in hospital.
Am I on the possible track that it could be epilepsy/seizures or worrying over nothing (well wrong thing)?
I know your not dr's but any advice/ideas/thoughts would be appreciated.
Thanks in advance
I was driving into local health centre to see speech therapist & sitting at a red light. Next thing I know I shook like from head to toe & couldnt remember where I was going.
It might not sound much but scared me, I told hubby & said I dont think I will drive till I get a new assessment done. I am going to jump up & down when I go to neuro next week & if he doesnt order more tests I wont leave his office!
To me this sounds like an absence seizure. Any ideas what tests to ask for?
He has done the eeg & I had a head mri Tuesday night. I actually spasmed or something during the mri as they kept calling out to me & my leg had fallen off the bed & apparently my head had been shaking so they had to redo part of the mri. The guy doing the tests kept checking when am I seeing neuro & said good its next week. I am thinking something must have shown for him to be concerned & also because of spasm too.
Does this make sense?
Thanks for letting me vent, I dont know others who are epileptic except 1 lady at work but I am not back till next week.