annika.64
02-21-2003, 10:24 AM
As I write this, I have just read Sekharp's and Bilbostuff's posts about their post-ictal experiences.
I have been searching for so long for people with nocturnal CPS's - I had been having them for 2 years before my doctors discovered what they were in 1999.
I have been on Lamictal & Clonazepam (+ the Epilim I was on before) and haven't had one CPS since December 1999.
But, for hubby and I, the 2 years (plus 1 episode in 1988 at the onset of Lupus), were a living nightmare.
It seemed to be monthly, and I would wake garbling in the night. Hubby would ask questions and my answers were incredible!! A cold shower brought be around, but I had terrible sensitivity, especially fingers and feet. A feeling of out-of-bodiness, dejavu's, terrible taste sensitivity - I could only eat boiled egg (or strangely enough, KFC).
I would be pretty knocked out for about a week, and then get on with life.
They discovered the problem with 24hr video monitoring for a week. Thankfully I had a seizure during my sleep one night which showed what was wrong. We knew that it was some sort of TLE. It amazed us that I could have the seizure but be sleeping quite peacefully while it was happening. Is that the case for others?
Anyway, straight onto the medication and Praise the Lord, not a one to this day.
Sorry for raving, but I am so glad to find that I am not alone in this world!!!!!!!
Thanks everyone.
Annie Kay
I have been searching for so long for people with nocturnal CPS's - I had been having them for 2 years before my doctors discovered what they were in 1999.
I have been on Lamictal & Clonazepam (+ the Epilim I was on before) and haven't had one CPS since December 1999.
But, for hubby and I, the 2 years (plus 1 episode in 1988 at the onset of Lupus), were a living nightmare.
It seemed to be monthly, and I would wake garbling in the night. Hubby would ask questions and my answers were incredible!! A cold shower brought be around, but I had terrible sensitivity, especially fingers and feet. A feeling of out-of-bodiness, dejavu's, terrible taste sensitivity - I could only eat boiled egg (or strangely enough, KFC).
I would be pretty knocked out for about a week, and then get on with life.
They discovered the problem with 24hr video monitoring for a week. Thankfully I had a seizure during my sleep one night which showed what was wrong. We knew that it was some sort of TLE. It amazed us that I could have the seizure but be sleeping quite peacefully while it was happening. Is that the case for others?
Anyway, straight onto the medication and Praise the Lord, not a one to this day.
Sorry for raving, but I am so glad to find that I am not alone in this world!!!!!!!
Thanks everyone.
Annie Kay
Sponsor
kayakmom
02-23-2003, 10:36 PM
YOur story sounds so much like my son. He has nocturnals, some of which are partials. He occasionally has complex or partial seizures during the day but also in sleep. I can not tell when he has them except for the post ictal behavior when he wakes up. Aggravating. His EEG picked them up the first time. THis year a video EEG did not in 8 days, just lots of abnormal slowing and a tonic hand seizure one night. We will retest at some point. Hard to pick it up sometimes with scalp electrodes I am told.
Hope things go better for you now that you have pinpointed it...
Hope things go better for you now that you have pinpointed it...
annika.64
02-25-2003, 05:01 AM
Nice to hear from you, Kayakmom. I hope that you find a solution soon, and can get medication for your son. Before we had the drugs, life was almost unbearable as I'm sure you know.
I was very 'blessed' to have a CPS in hospital, since the neuro ward was closing for Christmas the next week, so it was then, or come back and experience that horrible glue on my hair all again. Oh, that was awful.
I see from your profile that you enjoy nature and music and are a teacher. Join the 'club.' Since the onset of lupus, I had to retire and now do private Maths tutoring at home. We are keen gardeners and all of this helps to take away from the severe feelings of lowness (that's not a word, but sounds good!)
Does your son also share your love of these things? I only hope that these sort of things will also help you to look outside the pain/frustation you are experiencing.
Annie Kay
I was very 'blessed' to have a CPS in hospital, since the neuro ward was closing for Christmas the next week, so it was then, or come back and experience that horrible glue on my hair all again. Oh, that was awful.
I see from your profile that you enjoy nature and music and are a teacher. Join the 'club.' Since the onset of lupus, I had to retire and now do private Maths tutoring at home. We are keen gardeners and all of this helps to take away from the severe feelings of lowness (that's not a word, but sounds good!)
Does your son also share your love of these things? I only hope that these sort of things will also help you to look outside the pain/frustation you are experiencing.
Annie Kay
kayakmom
02-25-2003, 09:29 PM
Annie Kay, SO nice to meet you! Wish you were closer, my son could use a math tutor! I home school him, his love is Science, Nature, chemical reaction, travel...like his mum. I was a gym teacher at his school for a few years as well as teachers aide, sub, recess aide. We are currently watching the birds for sign of Spring.
I have Rhuematoid arthritis, they thought Lupus for a time. We also try to stay active to keep me healthier, kayaking, hiking, biking, daily walks.
We garden in the summer and study the insects and butterflies who reside there.
We see the neuro the 28th to see if we go back ot medicine and what tests are in store again for him..
I have Rhuematoid arthritis, they thought Lupus for a time. We also try to stay active to keep me healthier, kayaking, hiking, biking, daily walks.
We garden in the summer and study the insects and butterflies who reside there.
We see the neuro the 28th to see if we go back ot medicine and what tests are in store again for him..
Anna Marie
02-27-2003, 12:23 AM
Originally posted by kayakmom:
YOur story sounds so much like my son. He has nocturnals, some of which are partials. He occasionally has complex or partial seizures during the day but also in sleep. I can not tell when he has them except for the post ictal behavior when he wakes up. Aggravating. His EEG picked them up the first time. THis year a video EEG did not in 8 days, just lots of abnormal slowing and a tonic hand seizure one night. We will retest at some point. Hard to pick it up sometimes with scalp electrodes I am told.
Hope things go better for you now that you have pinpointed it...
How old is your son? My daughter is 3 and I think she's having seizures in her sleep. Her nero docter put her on terget, without even testing her. I have been telling her theropist for awhile, they are miising something. Well the other night she had what I think was a seizure. If I am right that will explain her unusual behavior sometimes. What are some signs of seizures in your sleep? Any advice would be great.
YOur story sounds so much like my son. He has nocturnals, some of which are partials. He occasionally has complex or partial seizures during the day but also in sleep. I can not tell when he has them except for the post ictal behavior when he wakes up. Aggravating. His EEG picked them up the first time. THis year a video EEG did not in 8 days, just lots of abnormal slowing and a tonic hand seizure one night. We will retest at some point. Hard to pick it up sometimes with scalp electrodes I am told.
Hope things go better for you now that you have pinpointed it...
How old is your son? My daughter is 3 and I think she's having seizures in her sleep. Her nero docter put her on terget, without even testing her. I have been telling her theropist for awhile, they are miising something. Well the other night she had what I think was a seizure. If I am right that will explain her unusual behavior sometimes. What are some signs of seizures in your sleep? Any advice would be great.
kayakmom
03-10-2003, 09:38 PM
Hi again, MY son will be 12 in two weeks. His dx came at age 7 after a tonic clonic seizure. I had seen one in his sleep when he was napping at age 5, but did not know what it was. The EEG tech was suprised we had not seen more before age 7!! Since he has complex and simple partials, they were hard to know they were seizures. After the first tonic clonic, seeing him post ictal I knew we had seen him like that before, belligerant, spacey, mad for no cause, hard to handle etc. He could not follow simple directions suddenly. Signs for a seizure in sleep, aside from seeing it, wet in the morning, very groggy at waking up, agry, confused, can't think straight, his school work will be much worse than usual if he cna even do it. He will say now he feels fuzzy headed, may have tingling in hand or foot. It is a combo of symptoms we have learned to ID as post ictal and assume a seizure. It is much more than just having an off day or needing more sleep. He will often need to be sent back to bed for a time to recover.
I would ask your pede for a neuro consult and an EEG. Tell what you saw that looked like a seizure. These often go awhile undetected unless you sleep with the child or a sibling does and witnesses one. Hope this helps...
I would ask your pede for a neuro consult and an EEG. Tell what you saw that looked like a seizure. These often go awhile undetected unless you sleep with the child or a sibling does and witnesses one. Hope this helps...
giupset
03-10-2003, 11:45 PM
I see you mentioned it happens monthly. Women have trouble controlling their seizures due to their hormones around that time of the month. Also, estrogen can cause seizures. I tried Lo-Ovral (bc pill) just to get regulated 3 years ago which caused an absence mal within a few days (I also have complex partial). I contacted my neurologist and was informed and pulled off. This rules out the pill or HRT (if I opted when the time does arive).
Prior to Lamictal, were you on meds? If so, were your seizures usually occuring around that time of the month?
I'm on Mysoline (a very old drug but pretty much does the trick). Rather than getting my regular absence mal seizures I now just get a pain in my right temporal lobe which does cause intraocular pressure. Diamox relieves this - it's primary indication is hypertension (this is a diuretic/water pill); secondary is epilepsy. I do get about 4 absence mals a year but do know when they will be coming on as I get an aura (ringing in my ear) 24-48 hours prior to this. I've been thinking of trying Lamictal but afraid that I'll have a seizure in the midst or that it won't work as well as Mysoline.
Prior to Lamictal, were you on meds? If so, were your seizures usually occuring around that time of the month?
I'm on Mysoline (a very old drug but pretty much does the trick). Rather than getting my regular absence mal seizures I now just get a pain in my right temporal lobe which does cause intraocular pressure. Diamox relieves this - it's primary indication is hypertension (this is a diuretic/water pill); secondary is epilepsy. I do get about 4 absence mals a year but do know when they will be coming on as I get an aura (ringing in my ear) 24-48 hours prior to this. I've been thinking of trying Lamictal but afraid that I'll have a seizure in the midst or that it won't work as well as Mysoline.
niunia
03-10-2003, 11:54 PM
Annika- I wish I could be of some help, but I do not know much abut the type of seizures you are experiencing...Be well
annika.64
03-11-2003, 07:20 AM
Originally posted by giupset:
I see you mentioned it happens monthly. Women have trouble controlling their seizures due to their hormones around that time of the month. Also, estrogen can cause seizures. I tried Lo-Ovral (bc pill) just to get regulated 3 years ago which caused an absence mal within a few days (I also have complex partial). I contacted my neurologist and was informed and pulled off. This rules out the pill or HRT (if I opted when the time does arive).
Prior to Lamictal, were you on meds? If so, were your seizures usually occuring around that time of the month?
I'm on Mysoline (a very old drug but pretty much does the trick). Rather than getting my regular absence mal seizures I now just get a pain in my right temporal lobe which does cause intraocular pressure. Diamox relieves this - it's primary indication is hypertension (this is a diuretic/water pill); secondary is epilepsy. I do get about 4 absence mals a year but do know when they will be coming on as I get an aura (ringing in my ear) 24-48 hours prior to this. I've been thinking of trying Lamictal but afraid that I'll have a seizure in the midst or that it won't work as well as Mysoline.
Well, Giupset, things can be so complicated, can't they? Where to begin? Well, I was first given Dilantin (Phenytoin) and had an allergic reaction. (I will tell you from the outset that I am very drug sensitive, so don't regard my reactions as fact for everyone. I seem to be in the 1% side effects category!) This was in 1988 (I was 24), when I hadn't been diagnosed and had some sort of 'event' at home & Mum found me in a post-ictal state. We thought that that was the seizure at the time, but thought it strange that I didn't lose control of my bladder.
Anyway, next there was Tegretol (Carbamazepine) which was the most likely solution. Once again - nasty results. Severe Neutropenia - almost no WBC's.
So, the last option, it seemed at the time, was Epilim (Sodium Valproate). I have been taking up to 2000 mg/day for 15 years, now.
Sorry, but you did ask what drugs I had tried. I seem to be a real expert, with no success, sadly.
Anyway, as you know, in 1999, immediately following diagnosis, I was put onto Lamictal (150 mg/day) and Clonazepam (2 x 0.5 mg/day) & kept on Epilim which is now 1700 mg/day.
My neuro was very happy with the immediate result, even coming out of the post-ictal stage quickly instead of a week long saga.
We would like to reduce the Epilim dose since it gives me tremors and contributes along with Prednisone and Lupus to my Osteoporosis, but things are a bit unstable, so it is to be kept the same for a while.
And, yes, the monthly seizures were painfully obvious. I have kept a diary since that time, and can find the pattern quite easily.
I hope that this all helps. Once again, don't take my case as 'gospel' but it may give you and your doctor something to work with. You say that you are afraid to try Lamictal; perhaps weaning off Mysoline and onto Lamictal might be something that the neuro may consider to ease the situation.
Keep me informed with how you go!
Annie Kay
I see you mentioned it happens monthly. Women have trouble controlling their seizures due to their hormones around that time of the month. Also, estrogen can cause seizures. I tried Lo-Ovral (bc pill) just to get regulated 3 years ago which caused an absence mal within a few days (I also have complex partial). I contacted my neurologist and was informed and pulled off. This rules out the pill or HRT (if I opted when the time does arive).
Prior to Lamictal, were you on meds? If so, were your seizures usually occuring around that time of the month?
I'm on Mysoline (a very old drug but pretty much does the trick). Rather than getting my regular absence mal seizures I now just get a pain in my right temporal lobe which does cause intraocular pressure. Diamox relieves this - it's primary indication is hypertension (this is a diuretic/water pill); secondary is epilepsy. I do get about 4 absence mals a year but do know when they will be coming on as I get an aura (ringing in my ear) 24-48 hours prior to this. I've been thinking of trying Lamictal but afraid that I'll have a seizure in the midst or that it won't work as well as Mysoline.
Well, Giupset, things can be so complicated, can't they? Where to begin? Well, I was first given Dilantin (Phenytoin) and had an allergic reaction. (I will tell you from the outset that I am very drug sensitive, so don't regard my reactions as fact for everyone. I seem to be in the 1% side effects category!) This was in 1988 (I was 24), when I hadn't been diagnosed and had some sort of 'event' at home & Mum found me in a post-ictal state. We thought that that was the seizure at the time, but thought it strange that I didn't lose control of my bladder.
Anyway, next there was Tegretol (Carbamazepine) which was the most likely solution. Once again - nasty results. Severe Neutropenia - almost no WBC's.
So, the last option, it seemed at the time, was Epilim (Sodium Valproate). I have been taking up to 2000 mg/day for 15 years, now.
Sorry, but you did ask what drugs I had tried. I seem to be a real expert, with no success, sadly.
Anyway, as you know, in 1999, immediately following diagnosis, I was put onto Lamictal (150 mg/day) and Clonazepam (2 x 0.5 mg/day) & kept on Epilim which is now 1700 mg/day.
My neuro was very happy with the immediate result, even coming out of the post-ictal stage quickly instead of a week long saga.
We would like to reduce the Epilim dose since it gives me tremors and contributes along with Prednisone and Lupus to my Osteoporosis, but things are a bit unstable, so it is to be kept the same for a while.
And, yes, the monthly seizures were painfully obvious. I have kept a diary since that time, and can find the pattern quite easily.
I hope that this all helps. Once again, don't take my case as 'gospel' but it may give you and your doctor something to work with. You say that you are afraid to try Lamictal; perhaps weaning off Mysoline and onto Lamictal might be something that the neuro may consider to ease the situation.
Keep me informed with how you go!
Annie Kay
Lullaby
05-02-2003, 01:41 PM
Ive been getting seizures in my sleep for a while now.
I get them about 3 times a month and I notice I get them only when im really tired and sleepy like if ive been up all morning and decided to take a nap.
Im really frustrated because my doctor doesnt seem to be helping at all.
I have 3 kids and it just scares me every time I go to sleep, Ill fear that I wont wake up since its very hard to wake up from those seiures.
I get them about 3 times a month and I notice I get them only when im really tired and sleepy like if ive been up all morning and decided to take a nap.
Im really frustrated because my doctor doesnt seem to be helping at all.
I have 3 kids and it just scares me every time I go to sleep, Ill fear that I wont wake up since its very hard to wake up from those seiures.