new, lost, frustrated and very confused

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Hello, I am new to this world. I am 36 and had my first tonic clonic March 13th. However, for years I have been having random neurological issues and have been to many specialist. I have had so many diagnosis from lupus to MS to stuff I have never heard of only to have every one of them disbanded and start back at ground 0. I had a 72 hr EEG that was normal last year and an abnormal MRI, but no one really thought it was a big deal. They said I had 2 lesions on my brain but since I ride horses and have fallen off in the past and have migrains it is probably from that. well just had another MRI and pretty much got the same answers!!! I have a new neurologist after my big seizure and he thinks I have been having seizures all this time but, no one could "catch" them. I am on Lamictal XR 50mg a day for another week then I go up to 100mg a day. I am also on Zonagram 200mg a day. Had a 1hr EEG when I was only on Zonagram and it showed 3 seizures so he added the Zonagram. However insurance is saying they r not going to pay for the Lamictal XR and my DR says he does not want me taking generic because there is no xr in the generic. The side effects of the meds r awful. I am having a hard time deciding what is medicine related and what is or could be seizures. I have holes in my memory. like in a day there are parts of the day that I have no idea about. Its like watching tv and the power going off and coming back on randomly. You don't know what happened on the tv show while the power went out but its back on. I am still out of work and can not drive. I am so lost and frustrated because I dont really feel like my Dr. takes me real serious. Any suggestions?
 
Hello, also new here and with my fair share of neurological and mental disorders that all seem to overlap and tangle.

The best piece of advice I can offer after years of dealing with it all is to stop treating yourself as a litany of conditions and to start seeing yourself as a unified whole and deal with the symptoms that are overwhelming as they become problems.
 
Ginariffic, Thanks. I hope to learn the difference between side effects and seizure related issues. Right now I am not sure what to blame on medicine and what is related to the seizures. I am sure everyone has been through that huh? Thanks a lot. Have a great day
 
The best thing you can do to figure things like that out is start to keep a diary. Record when you start medicines, things that are really big in your life, things that trigger symptoms, and be honest about how well you are treating your body, too.
Before I started having seizures, I had a really good memory for symptoms and when they started, but now I have to write it down or have people remind me about things that happened.
 
I spoke to my neuro today and he wants me to come back in on Thursday. He thinks that my meds r not strong enough, that i am still having seizures. He also told me I can't go back to work yet. I understand that, but, financially I need a pay check. I am a medic so I kinda need my "brain rite" lol... not sure if he is gonna change my meds or just increase them. I will see Thursday. I really appreciate your advice.
 
I had to quit working, but I'm young enough that I am still in school and can rely on financial aid and the occasional money from a parent.
 
Welcome! I was diagnosed in '05 and placed on trileptal and topamax, after 2 back to back seizures i was placed on keppra. Holy crap what a ride that was. I had anxiety/panic attacks and bouts of rage. As a former ICU RN I studied pharmacology and knew it was the med, when I approached the neuro he said they have had "lots" of problems with the keppra side effects. I was put back on my topamax. Long babble short, I know all about the gaps in time, and the forgetting things, I sometimes forget the names of everyday things, and parts of my life. It may be a combo of the effects of the seizures themselves and the meds. My first neuro (insurance took him away), suggested I buy a ninetendo DS and get the games that have puzzles, brain teasers, to do crosswords, and sudoku (I almost strangeled people trying to plug numbers in little boxes). But now they have that luminosity online. Give those things a try, they help me if I stay on them daily. I did have to give up nursing, I coudn't trust my brain to blank out on me when it counted. Good luck and know we are always here!
 
I'm being weened off Keppra at the moment. Switching to Lamictal. My original dose has gone down by half (1000 to 500 2x). It is crazy how less foggy I feel. My memory is dreadful but things I haven't thought about in a long time will suddenly click like "oh my gosh! That's right!". Also my sight has gotten sharper. I was reading on of my Harry Potter books the other day and noticed my eyes didn't feel strained after reading a while.

I was on Keppra for 6 years. The effects just wore off. I'm surprised what side issues I had but had adjusted to. Hopefully, in a few weeks I'll be done with it. :)
 
When I first started the lyrica for the fibro, my vision was so blurry. As a passenger in a car I would see 2 cars where was 1, and the yellow line would go into the sidewalk. It took weeks before it cleared. I still need reading glasses and they are strong. It sucks because I am trying to finish hand sewing a queen size quilt but it's hard to see my stitching now. And the needles have such tiny eyes I can barely see to thread it and I want to finish it for my mom seeing how sick she is. My neighbor is going to help me put the layers together and I am going to tie it at her bedside. bit anyway I wonder sometimes if these docs read the side effects before they prescribe them, or if they are too happy just reading the numbers on the check from the kickbacks? Sometimes docs push the same med for every patient. I research every med my doc wants to give me, I go on the site drugs.com. You can get the actual FDA info and all the warnings and results from control groups before the release of the drug. You should be able to pull it up on your phone right there in docs office. Just trying to help, good luck to all. And if I ever figure out how to put pics on here I will put a pic of my finished quilt!
 
Hello, I am new to this world. I am 36 and had my first tonic clonic March 13th. However, for years I have been having random neurological issues and have been to many specialist. I have had so many diagnosis from lupus to MS to stuff I have never heard of only to have every one of them disbanded and start back at ground 0. I had a 72 hr EEG that was normal last year and an abnormal MRI, but no one really thought it was a big deal. They said I had 2 lesions on my brain but since I ride horses and have fallen off in the past and have migrains it is probably from that. well just had another MRI and pretty much got the same answers!!! I have a new neurologist after my big seizure and he thinks I have been having seizures all this time but, no one could "catch" them. I am on Lamictal XR 50mg a day for another week then I go up to 100mg a day. I am also on Zonagram 200mg a day. Had a 1hr EEG when I was only on Zonagram and it showed 3 seizures so he added the Zonagram. However insurance is saying they r not going to pay for the Lamictal XR and my DR says he does not want me taking generic because there is no xr in the generic. The side effects of the meds r awful. I am having a hard time deciding what is medicine related and what is or could be seizures. I have holes in my memory. like in a day there are parts of the day that I have no idea about. Its like watching tv and the power going off and coming back on randomly. You don't know what happened on the tv show while the power went out but its back on. I am still out of work and can not drive. I am so lost and frustrated because I dont really feel like my Dr. takes me real serious. Any suggestions?
Welcome. Often times your doctor can appeal to your insurance company and they will approve something they originally turned down. My insurance company turned down a 16 hour operate I needed just a few days before it was scheduled after I had arranged time off from work. Because the neurosurgeon is so busy he actually talked to the insurance company from the OR while operating on another patient. My surgery was approved.

I think it is more common than people realize to have undiagnosed seizures for a long time. My went on for 3 years before anyone figured it out.
 
hi, im vixen,
I am on lamictal XR as well, exp. I take 200mg. have had E since I was 12/13 it took acouple of yrs for me an my parents to figure it out as well. I don't know seizures are a hard thing. the "holes" you are experiencing are what the doctor at my meetings call 'time lapses" I get them as well its a F&^$# pain in the ass esp. if ur needing to remember something for the house payments or a password.
 
Hi vixen, welcome.

What type(s) of seizures do you have?
 
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