Not coping

[Andrewbanker]

Hi,
I was diagnosed with epilepsy 3 years ago at the age of 40 after having a number of grand mal seizures and spending a week in hospital.
My epilepsy has been reasonably well controlled for nearly 3 years. I am on *Kepra, 500mg twice a day. I have had to make a number of changed to my lifestyle to reduce stress and get more sleep.
After a pretty full on month I have started to have partial seizures every few days. The aura I get before a seizure is there almost all the time. It is like a mild tremble in my fingers where my seizures always start. I can really feel my pulses, and it is making it hard to relax at work, or any public setting. It is progressively impacting my confidence.*Been like this for 3 weeks.
My neurologist can't seer for a couple of months which is frustrating.*
Anyone had an experience like this that could offer advice?

 

[momof3boys]

Well I can add that stress and lack of sleep for me, are my two main triggers for seizures. Last year I had a hard time with stress and I seriously dont know how I had gotten through that time with very few seizures. I had a mild case of gerd which I found out in December 2011. Alot of pain, but it came on the worst when I was stressing about things. One thing I had to tell myself is that worrying about things, stressing over how things are going to go, is not going to do any good. Its going to make things worse, not better. So I had to change my ways at thinking about things. For instance, my son was having some issues at school with his teacher. I was constantly worrying over him having a good day the next each night. I couldnt sleep, I couldnt eat. I just let everything overcome me. I had to tell myself that there is nothing I can do about whats going to happen. I have to think of the best, and if something comes up, we will solve it the best we can. I stressed over alot of things. But I worried way too much.

Now, I tend to look at things in a positive way. Dont look at things at how bad they can get, or the worst you can think of. Just think of whats going good.. and how we can keep things going good. Thats the way Ive started to think and the stress alone has gone down so much! I recently tried a generic seizure medication for the first time in my life, and it didnt go the best. After two weeks of being on it, I had a a cluster of seizures friday night and today after being "down" for the past day or so... Im finally feeling like myself again. (besides the soreness the seizures have brought on, but that will go away with time).

Im also on Keppra, Actually Keppra XR, at 3000mgs a day. I take it twice a day, 1500 mgs in the morning, and the same at night. I wish you can get into your neurologist sooner. Have you asked to be put on the cancelation list?

My advise is to write down anything... symptoms or seizures that come about, so you know whats occuring and when its taking place. And if your dr does have a cancelation list, ask to be put on it. Id rather see you be able to get into your dr sooner, rather than later.

 

[irish]

Stress and lack of sleep is a large factor for me too.

For stress I've distanced myself from a lot of things and refuse to worry about things. At times I go to bed any time I wish and if I wish I'm prepared to stay in bed as long as I like.

I was on Keppra but it wasn't for me.

 

[Andrewbanker]

Well I can add that stress and lack of sleep for me, are my two main triggers for seizures. Last year I had a hard time with stress and I seriously dont know how I had gotten through that time with very few seizures. I had a mild case of gerd which I found out in December 2011. Alot of pain, but it came on the worst when I was stressing about things. One thing I had to tell myself is that worrying about things, stressing over how things are going to go, is not going to do any good. Its going to make things worse, not better. So I had to change my ways at thinking about things. For instance, my son was having some issues at school with his teacher. I was constantly worrying over him having a good day the next each night. I couldnt sleep, I couldnt eat. I just let everything overcome me. I had to tell myself that there is nothing I can do about whats going to happen. I have to think of the best, and if something comes up, we will solve it the best we can. I stressed over alot of things. But I worried way too much.

Now, I tend to look at things in a positive way. Dont look at things at how bad they can get, or the worst you can think of. Just think of whats going good.. and how we can keep things going good. Thats the way Ive started to think and the stress alone has gone down so much! I recently tried a generic seizure medication for the first time in my life, and it didnt go the best. After two weeks of being on it, I had a a cluster of seizures friday night and today after being "down" for the past day or so... Im finally feeling like myself again. (besides the soreness the seizures have brought on, but that will go away with time).

Im also on Keppra, Actually Keppra XR, at 3000mgs a day. I take it twice a day, 1500 mgs in the morning, and the same at night. I wish you can get into your neurologist sooner. Have you asked to be put on the cancelation list?

My advise is to write down anything... symptoms or seizures that come about, so you know whats occuring and when its taking place. And if your dr does have a cancelation list, ask to be put on it. Id rather see you be able to get into your dr sooner, rather than later.

Thanks Kristen,
The ability to reduce stress was probably the main factor that originally got me into good shape, so that's great advice.
Btw, by Neurologist called me back and we talked about my situation. We have made an appointment for Monday, and he has told me to raise my dosage of Kepra in the mean time. He said it is not uncommon for this to happen even when things have been under control for a while.
I have only just joined this forum and feel comforted that I can share my feelings with others that understand how I am feeling.
Thanks.

 

[JaneC]

Really glad you aren't having to wait to see the neurologist Andrew. I hope you get things under control soon.

 

[Chaz1]

Andrewbanker, hello,

Maybe you could talk to your neurologist about neurotherapy/bio-feedback, though my Son's neurologist did not want to know anything about it yours just might.

Neurotherapy is brain training and simply put, locating areas of inefficiency in the manner in which the brain is functioning (by EEG/QEEG) and then work on training program to fix them....

We went on private search for neurotherapy/bio-feedback and found great one, one my Son is comfortable with (both practioner and location is important), it’s a long road and one can expect min of 40-50 sessions. My Son has been in this therapy for 1 year now and heading into year 2 and not planning on stopping for long time….

He is booking great success with this program...it’s not a cure but it can, does and has helped my Son (brain) manage stressful situations better... his brain locked in hyper alert mode, not allowing him to relax. Add stress and lack of sleep, bam T/C.

His T/C are getting shorter, from 5 mins down to 1-2 min and better rocevery. But, we can see a much more relaxed person in front of us and he is dealing with stress much better, some can shrug off stress but not all and if you have E, it’s a gift to learn to shrug it off, baby step by baby step.

Yes he still on meds and reasonably low dosage for his size/body weight….But we always looking for safe alternatives in conjunction with the meds….

Hope you appointment sheds some new light for you and u get the seizures under control…no harm in asking the question

warm welcome to CWE..

 

[Andrewbanker]

Andrewbanker, hello,

Maybe you could talk to your neurologist about neurotherapy/bio-feedback, though my Son's neurologist did not want to know anything about it yours just might.

Neurotherapy is brain training and simply put, locating areas of inefficiency in the manner in which the brain is functioning (by EEG/QEEG) and then work on training program to fix them....

We went on private search for neurotherapy/bio-feedback and found great one, one my Son is comfortable with (both practioner and location is important), it’s a long road and one can expect min of 40-50 sessions. My Son has been in this therapy for 1 year now and heading into year 2 and not planning on stopping for long time….

He is booking great success with this program...it’s not a cure but it can, does and has helped my Son (brain) manage stressful situations better... his brain locked in hyper alert mode, not allowing him to relax. Add stress and lack of sleep, bam T/C.

His T/C are getting shorter, from 5 mins down to 1-2 min and better rocevery. But, we can see a much more relaxed person in front of us and he is dealing with stress much better, some can shrug off stress but not all and if you have E, it’s a gift to learn to shrug it off, baby step by baby step.

Yes he still on meds and reasonably low dosage for his size/body weight….But we always looking for safe alternatives in conjunction with the meds….

Hope you appointment sheds some new light for you and u get the seizures under control…no harm in asking the question

warm welcome to CWE..

Thanks Chaz, I will have a chat to the neurologist about it on Monday. I really appreciate the feedback and support.

 

[kirsty1327]

Hi,I was diagnosed 3 years ago too.I get simple partials constantly and complex partials very rarely now!!! Thank my lucky stars ive never had a grand mal.I've since tried tegretol,keppra,topamax and now epilim but they have all at some point stopped working and auras have started again.My auras start in my fingers to but more like a stabbing,pins and needles and then my whole world starts rushing and I hear voices and have a terrible sadness come over me.
I get the whole confidence thing.Because my simple partials aren't under control I feel like I'm just waiting for that day when the seizure(aura) goes that bit further and I wake up on the ground covered in blood,smelling of wee and people all around me.
Like Kristin said,write everything down.I write down every detail of my auras,when I get headaches,everything.
And sleep . Hope it all works out.
Kirsty
P.s GO HAWTHORN!!!!!!!!!!!

 

[irish]

Hi Kirsty, I get grand mals and I've been in a few of those situations you dread...... to be honest I'm that confused I'M oblivious to who is looking at me.

Perhaps I like being the centre of attraction!

 

[momof3boys]

Thanks Kristen,
The ability to reduce stress was probably the main factor that originally got me into good shape, so that's great advice.
Btw, by Neurologist called me back and we talked about my situation. We have made an appointment for Monday, and he has told me to raise my dosage of Kepra in the mean time. He said it is not uncommon for this to happen even when things have been under control for a while.
I have only just joined this forum and feel comforted that I can share my feelings with others that understand how I am feeling.
Thanks.

I'm glad that you got an appointment made for monday! Yeah I can totally agree with having things go good with good seizure control, and then have some break through happens. I was on two anti seizure medications for a long time, at least til march 2011 when I had my first VEEG. After that was done, I got put down to 1. But Ive noticed since going from Keppra and Carbatrol, down to just Keppra, there is two main things I have to pay close attention to. Lack of sleep and stress. The two seizure medications together controlled the seizures very well, no matter how little of sleep I got, or how much stress I had to deal with. But now that Im on one, I have to be very careful about how much sleep I get, and there are certain stresses I have to stay away from. My body will give me "warnings" if seizure activity is wanting to come on. That there tells me its time to relax.

Im glad you find CWE a comfortable place! I found this site a couple of years ago and have met alot of great people on here! If you have any questions, or just want to vent... were here for you! Welcome!:rock::banana:

 

[jyearta]

Hi and glad you found our party.

I was glad to read that your Neur. is seeing you sooner.

I tried Keppra, couldn't tolerate the side effects. Everyone reacts diff. to diff meds.

Keep us posted and wishing you well.

 

[Andrewbanker]

After one day on a higher dose of Kepra the tingles have reduced significantly. What a relief. My neurologist is going to arrange the usual tests on Monday. I travel a lot with my job, and have decided to play it safe and avoid long plane trips until after xmas.
Confidence is a fragile thing. For my "extra curricular" activities I am a musician. Last week my band performed at the dinner function to a few hundred people, and I had the feeling that a seizure was imminent the whole time I was on stage. Would have been devastating if this had happened.
Thanks for all your support.
PS. Kirsty, I am a Bombers man!

 

[CQ:)]

Hi Andrew.
Welcome to CWE, good luck with your neurologist appt & I hope you go well with the new increase of Keppra.

I take Keppra & Tegretol, I'm currently on 1000mg Keppra (twice day) & 200mg Tegretol twice a day.

 

[Nakamova]

Hi Andrew, welcome to CWE!

It's great that the upped keppra dose is making an immediate difference. Hope it keeps doing the trick for you!

Best,
Nakamova

 

[jyearta]

Do the lights when your band is playing affect you.
I ask this because I have a hard time at church, they turn the overhead lights out and the lights flashing, I have to close my eyes.

 

[Andrewbanker]

Do the lights when your band is playing affect you.
I ask this because I have a hard time at church, they turn the overhead lights out and the lights flashing, I have to close my eyes.

No, that has never been an issue for me. I do find that fluro lights in supermarkets always give me a headache within 10 minutes..... Or maybe I just hate supermarket shopping.

 

[nicholas:)]

Hi. Take time off from work and see a doctor aswp. Always best to get things checked out

 

[Andrewbanker]

Had the appointment with the neurologist. He was pretty concenred about my state, commenting in how tired and stressed I look. I was proabably feeling the best I have in weeks. It does seem that any little bit of stress leads me to an aura or trembling fingers straight away.
He has added Lamictal which I need to go on gradually (up to 50mg) with the Keppra. He plans on reducing the Keppra back to 500mg twice a day.
Boy I am looking forward to some holidays.....

 

[RobinN]

When you are stressed and traveling a lot, are you eating well?

 

[Andrewbanker]

When you are stressed and traveling a lot, are you eating well?

I am pretty disciplined with my diet and sleep when I am away. Stress is just part of the job, and I am used to it. I gather the older I get, the more taxing this is becoming.

Thanks Andrew