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music man

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Hi Ed here a little about me . I had a pretty decent life until 15 months ago at least i thought. Lived on my own, country house' modest lifestyle. career which now is in Jeporady.Now the house is for sale because my license is gone thanks to mr. Tonic Clonic I studyJazz guitar and it keeps me sane .|Now however with my second round of meds, had kepra no go, now epival my short and long term memory is shot My hands shake so bad it takes forever to type this and i still have trouble navigting this site so if you have emailed me and i have not returned your call it's just that i am having computer problems. Just from what reading i have done here i am aware that my illness is nothing compared to the suffering of others. I'm just having a difficult time accepting this new phase in my life and the uncertain future.
thanks Ed
 
Hi Ed, welcome to our group. I got diagnosed at age 47 (about 2 years ago) with both simple and complex partials. I am so thankful I found this wonderful site to help me understand and cope with E. I know sometimes, I go thru peroids of not posting as I feel I have milder case of E than some on here. But whether you have a mild or stronger case of E, E doesn't discreminate about playing havoc with your life. I am on Keppra and it has helped a lot in getting my seizures down, but I have not found the magic potion that lets me have a seizure free life.
It does take time to get use to saying I have seizures and I don't share that information with everyone.
 
Hi Ed,

I wanted to welcome you and let you know what a wonderful and supportive forum Bernard has created. Sorry to hear about what you're going through and I wish you well!
 
Music is a fantastic thing -- it's helped my partner through a bunch of rough times. He studied blues guitar for years.

Welcome to the forum Ed. This is a good place with good people who can help you through these changes. Chin up -- you're not alone anymore ;)
 
Many thanks

jgbmartin said:
Hi Ed, welcome to our group. I got diagnosed at age 47 (about 2 years ago) with both simple and complex partials. I am so thankful I found this wonderful site to help me understand and cope with E. I know sometimes, I go thru peroids of not posting as I feel I have milder case of E than some on here. But whether you have a mild or stronger case of E, E doesn't discreminate about playing havoc with your life. I am on Keppra and it has helped a lot in getting my seizures down, but I have not found the magic potion that lets me have a seizure free life.
It does take time to get use to saying I have seizures and I don't share that information with everyone.
Click to expand...

Thanks for the support i think being able to identify is key to tolerance patience and acceptance.
Be of good health my friend .
Ed from the frozen north
 
Hi Ed, welcome!

I'd encourage you to ask your doctor about finding a med that isn't so hard on your memory and body. There are quite a few AEDs out there in addition to Keppra and Epival. I hope you feel free to ask questions and vent here at CWE. We're here to listen and help.

Best,
Nakamova
 
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Hi Ed
Welcome to CWE. My daughter has tonic clonic seizures. She began having them at the age of 14. Now we are controlling them by making changes to what she puts in her mouth for fuel. It has made a huge improvement, and continues to improve as time goes on.

I hope you find some suggestions to help you deal with your situation.
 
Playing off tune

Nakamova said:
Hi Ed, welcome!

I'd encourage you to ask your doctor about finding a med that isn't so hard on your memory and body. There are quite a few AEDs out there in addition to Keppra and Epival. I hope you feel free to ask questions and vent here at CWE. We're here to listen and help.

Best,
Nakamova
Click to expand...

Thanks for the reply. My neurologist says that it's stress that is causing the memory loss and not the Epival.My GP says it's the Epival . I'd run with her diagnosis but here in Ont. Canada one requires both to sign off on a year free of seizures.It is frustrating to say the least. I have done some investigating arond this subject the types of seizures, meds, and their inherent side effects. I am aware that others suffer far more that I , but i have to deal with what has been handed to me. I guess that CD i was going to cut will take a little longer.....probably much longer!
Be well Ed.
 
music man said:
Thanks for the reply. My neurologist says that it's stress that is causing the memory loss and not the Epival.My GP says it's the Epival . I'd run with her diagnosis but here in Ont. Canada one requires both to sign off on a year free of seizures.It is frustrating to say the least. I have done some investigating arond this subject the types of seizures, meds, and their inherent side effects. I am aware that others suffer far more that I , but i have to deal with what has been handed to me. I guess that CD i was going to cut will take a little longer.....probably much longer!
Be well Ed.
Click to expand...

:ponder: Hmmmm, I've been stressed before & I might get a bit distracted but it doesn't effect my memory. Has your memory been effected negatively by stress before you started taking ant-convulsant medications? If not I'd point that out to the neuro. If s/he persists I'd change neurologists. I've been told similar things by neurologists that don't make sense & I'm at the point that I'm very quick to switch when being fed such fairy tails.
 
Memory loss

I guess that we all can be stressed and it can cause some temporary loss, but not like this at all. It was and is in my opinion the introduction of Epival that has caused these symptoms.Iv'e gone from havng in my head at any time 50 plus tunes and now struggle remembering two or three on a good day. Sentences i have in my head just won't come out or i stumble for time enough to produce them. I'm on the same page i'm looking for a second opinion, i have a life to live and a CD albeit modest to put together.
Thanks my man
Ed
 
My neuro said the memory loss I suffer is not from the Keppra, but an after effect of having seizures.
 
Welcome to CWE.
My hands shake and it is due to the amount of meds I am on. When I used to get stressed or excited my hands never would shake but now they do. My Neuro reduced one med and it has reduced to a point. The most irritating part is when it shakes I get more ticked off and I shake more. I have started working on controlling my breathing along with self calming techniques, it helps somewhat.
I have Temporal Lobe Epilepsy and when I have a Tonic Clonic I will suffer short term memory loss for at least 3 days. For fun I always go to a movie with the wife and I know what film I saw but cannot remember it at all. I always hope it will not happen but I laugh and just watch it a few months later.
Now there is a tendency for me to think one thing and type another or not type the words at all. I have learned to read everything 2x. My Neuro says this is all controlled in the Temporal Lobe of the brain and the seizures have created these problems. Also so when I am tired I do struggle with getting my thoughts out more than I used to.
I am not saying this is what you have but I hope this relates and lets you know that you are not alone with some of your problems. Best anyone can do with those challenges is just keep plugging away and push for the resolve and balance of life we once had.
 
trembling

Thanks for the information my friend i just deep gathering information and attempting to live my life one day at a time.
Again thank you.
Ed
 
Hi, how's it

going there, MusicMan? It's nice to "meet" you! I wanted to stop and welcome you to CWE. You're going to find lots of people to make friends with here, and lots of information to discover--the Library and Kitchen are grat for that. Check out the Padded Room for the days you need to vent.......we've all been there at one point in time. :)

Mr B has made us an AWESOME home here......

Honestly, I'd be going and getting a 2d neurologist's opinion. It does sound like it's the meds, and if your neuro isn't willing to listen to you and YOUR gut instinct at all, then it's time to ask around for other opinions. It's obvious your GP thinks you're right......so back it up with another neurological opinion.

Start keeping track of everything, too. At least as well as you can. Sleep schedules, eating schedules and what's eaten, dosing schedules, and perhaps you may figure out some of your triggers, too.

And don't worry, we'll be here for you whenever you need us. :bigsmile:

Take care!

Meetz
:rock:
 
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thank you

Thank you for your reply, i am truly overwhwelmed by the support provided by this group. I must say tht i am a bit of a loner and this illness tends to further isolate me. I must say since joining my mood has started to rise from the ashes .
Be well Ed from To.
 
The Auditorium

There is a music thread called Speber's Auditorium. It was started by a musician, and we have fun and listen to music.
Welcome to our beautiful family.
 
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