KarmicQueen
12-15-2008, 10:13 AM
Hi
My name is Leah. I'm nearly 28 and a bit lost :/
I had a grand mal sezisure in July. It was very scary for my other half who witnessed it all and very frightening for me too.
I started on Lamotigine about 3 weeks ago and I am now on 50 mg. My consultant has put my next appt with him back from January to the end of February and I feel like I have just been left alone to cope,
Last Saturday, I was in high spirits, walking towards the station with my other half, nattering on and talking about stuff. Suddenly, my voice changed and all I could hear was my own voice louder, but with a sort of echo! I can only describe it as sounding a bit like an android, or something out of a sci-fi film!
This was quite freaky, but also highly amusing in a way. My other half told me that I sounded perfectly normal but my voice sounded weird to me. After it happened, I felt very emotional and angry and then I was soooo very tired and couldn't stop yawning.
I called an Epilepsy helpline, and they told me that its likely I'd had a partial seizure. Do you think this is correct? I was fully conscious, walking as normal!
Also, how do I know that it is not the side effects of the meds? And also how do I know that I'm only getting these now down to the meds? I'm concerned that my seizures are increasing because of what I am taking, or am I just having seizures as art of my condition, as I don't think 50 mg is enough to stop them yet.
Please please can you tell me what you think? Its very afraid as I live in fear of having another seizure, and this is ALL so NEW to me. I don't feel like I know my own body anymore.
This happened to me one before where after running for 30 minutes at the gym, my voice sounded like I had a HUG E lisp to it and I felt very paranoid and anxious. This was about a week before I got diagnosed and so therefore thought that I could have just overdone things at the gym.
Andy advice/ support/ help would be so appreciated! What do I do if it happens again? Do I sit down for a while. I seem to have controlled it and stopped it from developing into a grand mal but I just feel so afraid right now.
please help!
Leah x
My name is Leah. I'm nearly 28 and a bit lost :/
I had a grand mal sezisure in July. It was very scary for my other half who witnessed it all and very frightening for me too.
I started on Lamotigine about 3 weeks ago and I am now on 50 mg. My consultant has put my next appt with him back from January to the end of February and I feel like I have just been left alone to cope,
Last Saturday, I was in high spirits, walking towards the station with my other half, nattering on and talking about stuff. Suddenly, my voice changed and all I could hear was my own voice louder, but with a sort of echo! I can only describe it as sounding a bit like an android, or something out of a sci-fi film!
This was quite freaky, but also highly amusing in a way. My other half told me that I sounded perfectly normal but my voice sounded weird to me. After it happened, I felt very emotional and angry and then I was soooo very tired and couldn't stop yawning.
I called an Epilepsy helpline, and they told me that its likely I'd had a partial seizure. Do you think this is correct? I was fully conscious, walking as normal!
Also, how do I know that it is not the side effects of the meds? And also how do I know that I'm only getting these now down to the meds? I'm concerned that my seizures are increasing because of what I am taking, or am I just having seizures as art of my condition, as I don't think 50 mg is enough to stop them yet.
Please please can you tell me what you think? Its very afraid as I live in fear of having another seizure, and this is ALL so NEW to me. I don't feel like I know my own body anymore.
This happened to me one before where after running for 30 minutes at the gym, my voice sounded like I had a HUG E lisp to it and I felt very paranoid and anxious. This was about a week before I got diagnosed and so therefore thought that I could have just overdone things at the gym.
Andy advice/ support/ help would be so appreciated! What do I do if it happens again? Do I sit down for a while. I seem to have controlled it and stopped it from developing into a grand mal but I just feel so afraid right now.
please help!
Leah x
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Mediocrates
12-16-2008, 03:43 PM
Leah, yes, in partial seizures you are awake and aware as normal. You could be having one and others around you be completely unaware of it.
If you feel another one coming, sit or lie down as soon as possible! Especially if you're driving or walking near traffic - get off the road. My partial seizures progress into grand mals (complete loss of consciousness) if I don't lie still. Several times I have gotten up to walk to the bathroom and hurt myself more from the falls than if I had stayed in bed.
It is frightening, I know, but it will pass. Just be sure you let someone know if they are with you or keep a phone close by if you're alone at home.
Adult-onset epilepsy has its own challenges but you are young enough that you can get control of them now. If you were not getting treatment, the seizures would almost certainly have become more frequent and more severe.
The medication may not completely end the seizures but will keep them to as few as possible. I know the temptation to return to your former life is strong, but you should discuss this with your physician or nurse.
If you feel another one coming, sit or lie down as soon as possible! Especially if you're driving or walking near traffic - get off the road. My partial seizures progress into grand mals (complete loss of consciousness) if I don't lie still. Several times I have gotten up to walk to the bathroom and hurt myself more from the falls than if I had stayed in bed.
It is frightening, I know, but it will pass. Just be sure you let someone know if they are with you or keep a phone close by if you're alone at home.
Adult-onset epilepsy has its own challenges but you are young enough that you can get control of them now. If you were not getting treatment, the seizures would almost certainly have become more frequent and more severe.
The medication may not completely end the seizures but will keep them to as few as possible. I know the temptation to return to your former life is strong, but you should discuss this with your physician or nurse.
Debraout
12-22-2008, 09:58 PM
Leah, I'm a 3 decade sufferer and it does feel kooky! It's just an aural hallucination, okay? Your brain's fooling you into believing you're hearing differently. don't be startled. In time, your physician will find the ideal meds. Hang in there.
alistone
12-28-2008, 10:56 PM
Hello Leah!
While I know totally nothing about your auditory feelings, I wanted to reply and suggest some non-medical things (:
I know all seizures are different and caused many different triggers, etc. -- mine are very much caused by stress overload. If ever you have questions or are afraid, anxious or otherwise feeling badly about circumstances surrounding your seizures (and health in general) I want to encourage you to call your doctor and make an appointment on an "emergency" basis (if he is booked up for months - you just let the secretary know it is an emergency and 99% of the time they will accommodate you), visit/call a counsellor (which can be very helpful IMO!!), or stop in at your emergency room.
My diagnosis has left me feeling uncomfortable in my own skin at times, and already being an anxious person, I could just leap off something sometimes. Visiting a counsellor initially had me feeling much better, but I only went a few times and now a few months later I'm back in a strange state of mind. Everything takes time and patience, and although it feels weird telling a total stranger about your problems/symptoms (or your doctor or ER doc) that is the only way I've felt "mental" relief thus far.
(Your family and friends can be beneficial, but in the end they are also greatly affected by this change and don't have the training to help you cope!)
You mentioned in your post you felt as though you were left to cope alone, and I'm glad you posted because you should never feel that way (: Not only is this community and others like it available to get advice/support from more people affected by seizures, I strongly recommend counselling services, which can be set up by your doctor if you feel more comfortable that way.
Anyways, just my rant about mental health (: Coming from such a nut take it with a grain of salt, haha, but seriously - I hope you find relief from those feelings and if you need anyone to talk to who totally understands, myself and the rest of this board are around (:
While I know totally nothing about your auditory feelings, I wanted to reply and suggest some non-medical things (:
I know all seizures are different and caused many different triggers, etc. -- mine are very much caused by stress overload. If ever you have questions or are afraid, anxious or otherwise feeling badly about circumstances surrounding your seizures (and health in general) I want to encourage you to call your doctor and make an appointment on an "emergency" basis (if he is booked up for months - you just let the secretary know it is an emergency and 99% of the time they will accommodate you), visit/call a counsellor (which can be very helpful IMO!!), or stop in at your emergency room.
My diagnosis has left me feeling uncomfortable in my own skin at times, and already being an anxious person, I could just leap off something sometimes. Visiting a counsellor initially had me feeling much better, but I only went a few times and now a few months later I'm back in a strange state of mind. Everything takes time and patience, and although it feels weird telling a total stranger about your problems/symptoms (or your doctor or ER doc) that is the only way I've felt "mental" relief thus far.
(Your family and friends can be beneficial, but in the end they are also greatly affected by this change and don't have the training to help you cope!)
You mentioned in your post you felt as though you were left to cope alone, and I'm glad you posted because you should never feel that way (: Not only is this community and others like it available to get advice/support from more people affected by seizures, I strongly recommend counselling services, which can be set up by your doctor if you feel more comfortable that way.
Anyways, just my rant about mental health (: Coming from such a nut take it with a grain of salt, haha, but seriously - I hope you find relief from those feelings and if you need anyone to talk to who totally understands, myself and the rest of this board are around (:
crawdaddy
12-28-2008, 11:38 PM
Hi Leah
I know how you feel about being left alone to cope,your doc can do only so much.
I hope your other half stays by your side, it helps alot.
Do you have a MRI booked? If not GET ONE.
You might need more of the meds, a blood test will tell your doc if you do.
My seizures started back 98, at that time I became a vegetarian.
My seizures would come on with riding my mountain bike very hard.
All my seizures except one, (I was at the gym also), happened while riding.
Then come along Dec 6, 08, I was sleeping in my parents car when I had one, about 1 hour later, I had my second. Totally new to me, sleeping I have them now.
My Doc has me taking Tegretol, 400mg day.
I also take several other vitamins.
Your not alone, I know how you feel.
Steve
I know how you feel about being left alone to cope,your doc can do only so much.
I hope your other half stays by your side, it helps alot.
Do you have a MRI booked? If not GET ONE.
You might need more of the meds, a blood test will tell your doc if you do.
My seizures started back 98, at that time I became a vegetarian.
My seizures would come on with riding my mountain bike very hard.
All my seizures except one, (I was at the gym also), happened while riding.
Then come along Dec 6, 08, I was sleeping in my parents car when I had one, about 1 hour later, I had my second. Totally new to me, sleeping I have them now.
My Doc has me taking Tegretol, 400mg day.
I also take several other vitamins.
Your not alone, I know how you feel.
Steve
shakin stevens
12-29-2008, 05:47 PM
hi leah,
sounds can play a big role in my simple and complex partials, and i have found over the years that they alter depending on the severity of seizure from simple popping sounds just before a mild event to full blown invisible conversations during complex seizures. i cant tell you that they wont scare you any less over the years but when you finally understand your mind and come to terms with your epilepsy (approx 4/5 years) you will understand that these little events are helpful. in your circumstances i would defiantly use them as a signal to relax because although they are usually simple partials that will pass quickly IF you do have another GM it will most likely happen almost immediately after an event like this. hope the meds work for you. ste
sounds can play a big role in my simple and complex partials, and i have found over the years that they alter depending on the severity of seizure from simple popping sounds just before a mild event to full blown invisible conversations during complex seizures. i cant tell you that they wont scare you any less over the years but when you finally understand your mind and come to terms with your epilepsy (approx 4/5 years) you will understand that these little events are helpful. in your circumstances i would defiantly use them as a signal to relax because although they are usually simple partials that will pass quickly IF you do have another GM it will most likely happen almost immediately after an event like this. hope the meds work for you. ste
Sherri5186
12-30-2008, 07:31 PM
Yes Leah, sometimes your voice may change a little while
having a seizure or right as you are coming out of one,I
have been told by my family that as I am coming out of
a complex partial mine voice only sometimes is different
until I am completely thru with the seizure.No,you are not
going mad not one bit.
having a seizure or right as you are coming out of one,I
have been told by my family that as I am coming out of
a complex partial mine voice only sometimes is different
until I am completely thru with the seizure.No,you are not
going mad not one bit.