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New to the world of epilepsy
- Thread starter Kristen
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
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Hi Kristen, welcome to CWE!
You've come to the right place -- CWE members are great at offering support and information. I hope you feel free to ask questions and explore the archives,
When epilepsy is a relatively new diagnosis, as in your husband's case, it can be tough to get your bearings. Is your husband on meds? Are his seizures controlled? Are there any side effects from the meds?
Best,
Nakamova
You've come to the right place -- CWE members are great at offering support and information. I hope you feel free to ask questions and explore the archives,
When epilepsy is a relatively new diagnosis, as in your husband's case, it can be tough to get your bearings. Is your husband on meds? Are his seizures controlled? Are there any side effects from the meds?
Best,
Nakamova
Thank you for the welcome.
Currently his meds are not working, they did for about 4 months we were so excited but then he started having break through seizures and so we have had to make some adjustments but it seems more adjustments are needed.
Its so hard to watch him, he is taking everything very hard.
I struggle to find the balance of support and tough love when he is down.
We have an appt with the neurologist on tuesday to talk about upping his meds or a complete change.
Currently his meds are not working, they did for about 4 months we were so excited but then he started having break through seizures and so we have had to make some adjustments but it seems more adjustments are needed.
Its so hard to watch him, he is taking everything very hard.
I struggle to find the balance of support and tough love when he is down.
We have an appt with the neurologist on tuesday to talk about upping his meds or a complete change.
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You might ask the neurologist about trying a dietary approach along with the meds. There's been some success using the Modified Atkins Diet to control absence seizures.
There's info here about the MAD and absence seizures:
http://www.atkinsforseizures.com/
And some CWE threads:
http://www.coping-with-epilepsy.com/forums/f20/modified-atkins-diet-9534/
http://www.coping-with-epilepsy.com/forums/f32/mad-modified-atkins-diet-6871/
There's info here about the MAD and absence seizures:
http://www.atkinsforseizures.com/
And some CWE threads:
http://www.coping-with-epilepsy.com/forums/f20/modified-atkins-diet-9534/
http://www.coping-with-epilepsy.com/forums/f32/mad-modified-atkins-diet-6871/
alivenwell
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Best wishes to both you and your husband. Personally I saw a seizure from a roommate in the hospital and pretty much felt freaked out. So, I've been on your side of the fence, too.
Personally, I strongly feel in favor of brand name drugs. Switching from brand name drugs to generic drugs can alter medication levels. Generic drugs can legally be produced with different fillers. In theory, they should be exact replicas, but they are not that way. You can tell if that switching happened at the drug store if the appearance of his medication has changed. Many insurance companies will not always cover brand name drugs unless they see a form that indicates brand name is medically necessary written up by a doctor. Since you're seeing that neurologist, maybe this would be a good request to make.
Your husband's probably feeling nasty side effects of medications, a totally different lifestyle, and feeling like a lab rat.
If you can, take him out of the house for a date. Trust me..those 4 walls can be kind of confining. Does he have an interest in an hobby that can keep him busy? Does he have a stress busting activity? Is he physically in good shape to workout or take long walks in nice weather?
It really helps if he avoids alcohol, caffeine, gluten, artificial sweeteners and soy products. A high protein modified atkins diet documented in here is a great start. I pre-count medications for a two week timeframe and have regular blood tests. Does he have a cell phone that can be used to set a reminder for medications? It can also be used to surf the web and play online games.
Personally, I strongly feel in favor of brand name drugs. Switching from brand name drugs to generic drugs can alter medication levels. Generic drugs can legally be produced with different fillers. In theory, they should be exact replicas, but they are not that way. You can tell if that switching happened at the drug store if the appearance of his medication has changed. Many insurance companies will not always cover brand name drugs unless they see a form that indicates brand name is medically necessary written up by a doctor. Since you're seeing that neurologist, maybe this would be a good request to make.
Your husband's probably feeling nasty side effects of medications, a totally different lifestyle, and feeling like a lab rat.
If you can, take him out of the house for a date. Trust me..those 4 walls can be kind of confining. Does he have an interest in an hobby that can keep him busy? Does he have a stress busting activity? Is he physically in good shape to workout or take long walks in nice weather?
It really helps if he avoids alcohol, caffeine, gluten, artificial sweeteners and soy products. A high protein modified atkins diet documented in here is a great start. I pre-count medications for a two week timeframe and have regular blood tests. Does he have a cell phone that can be used to set a reminder for medications? It can also be used to surf the web and play online games.
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He is currently on time release version of Tegratol after the first round of "regular" Tegratol started to become less effective. Now, we are finding the time release form is not as effective either so we will be back at the dr's on Tuesday for a change. The side effects at first were really bad, he said voices sounded lower, he had trouble with his coordination and felt high all the time. Now it seems to be drowsiness and vivid dreams which have made sleeping difficult.
The worse part for him and myself has been the mild/moderate depression. His career was his passion. He is second generation Fire Fighter and is really struggling with being placed at a desk job while we work out his meds. He used to be able to run 10k with no trouble and now he's found if he pushes it too hard he will have a "blip". We have a dog that he could take for walks but I think he is worried about having a “blip” when walking her and “what could happen” so he tends to wait until I get home. Not being able to drive and relying on me to get him around has also been very hard on him. He really feels like he has been given a life sentence and I struggle to find the right words to say.
While Epilepsy is bad enough he has also struggled with Crohns Disease since he was 14 and the two chronic illnesses have really started to take there toll emotionally. I try to get him out and about as much as possible but I find getting him motivated is tough.
He started coaching a Lacrosse team this year and has been enjoying that but the season is short and will soon be over and so I am trying to get him thinking about other hobbies he could partake in. He does not drink, however I will be looking into this modified diet.
Not sure if anyone else with absence seizures can speak to this but I noticed that his seizures have changed.
Before he used to completely zone out, make some small mouth movements but until he was spoken too (at which point he would be slow to respond) he would just stand still. NOW he seems to be completely aware to certain degree. The other day he was trimming the hedge and I just happened to noticed he was fussing with the hedge trimmer a little ever so slightly.. I asked if he was ok at which point he said to me “I don’t know how I am going to catch them” I said “excuse me?” and he repeated himself “I don’t know how I’m supposed to catch them” at that point he turned off the hedge clipper, came down off the ladder and advised me he had to use the wash room. When I followed him to the bath room he had no idea how he got there and came back to his normal self within minutes.
It seemed like he was having an absence seizure however there was tons of brain activity as his speech was not impaired and could speak clearly (although his comment was quite odd) and he was able to climb down off a ladder and turn off a power tool.....
The worse part for him and myself has been the mild/moderate depression. His career was his passion. He is second generation Fire Fighter and is really struggling with being placed at a desk job while we work out his meds. He used to be able to run 10k with no trouble and now he's found if he pushes it too hard he will have a "blip". We have a dog that he could take for walks but I think he is worried about having a “blip” when walking her and “what could happen” so he tends to wait until I get home. Not being able to drive and relying on me to get him around has also been very hard on him. He really feels like he has been given a life sentence and I struggle to find the right words to say.
While Epilepsy is bad enough he has also struggled with Crohns Disease since he was 14 and the two chronic illnesses have really started to take there toll emotionally. I try to get him out and about as much as possible but I find getting him motivated is tough.
He started coaching a Lacrosse team this year and has been enjoying that but the season is short and will soon be over and so I am trying to get him thinking about other hobbies he could partake in. He does not drink, however I will be looking into this modified diet.
Not sure if anyone else with absence seizures can speak to this but I noticed that his seizures have changed.
Before he used to completely zone out, make some small mouth movements but until he was spoken too (at which point he would be slow to respond) he would just stand still. NOW he seems to be completely aware to certain degree. The other day he was trimming the hedge and I just happened to noticed he was fussing with the hedge trimmer a little ever so slightly.. I asked if he was ok at which point he said to me “I don’t know how I am going to catch them” I said “excuse me?” and he repeated himself “I don’t know how I’m supposed to catch them” at that point he turned off the hedge clipper, came down off the ladder and advised me he had to use the wash room. When I followed him to the bath room he had no idea how he got there and came back to his normal self within minutes.
It seemed like he was having an absence seizure however there was tons of brain activity as his speech was not impaired and could speak clearly (although his comment was quite odd) and he was able to climb down off a ladder and turn off a power tool.....
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It's hard to tell whether his seizures have changed in a good direction or a bad one. be sure to mention it to his doctor.
Maybe there are other teams out there he could coach? There must be some summer youth sport leagues that would welcome his help.
Maybe there are other teams out there he could coach? There must be some summer youth sport leagues that would welcome his help.
Hi Kirsten,My epilepsy started 4 yrs ago aged 45. Initially my sz wouldn't be noticed by people but they changed and now I have ones that are!.I have temporal and frontal lobe epilepsy and have tried 7 drugs currently taking 3 still not controlled.The thing I found difficult was going from an active person playing racketball,riding my horse,walking the dog and working pt time to being very tired,no energy,sleeping loads,loosing daily contact with people/world,loss of independence(loss of driving licence). I no longer work but have started to be more active again, it's like having to learn to live again with massive changes to your life but with everything else the same and you haven't got the time to do it say as child would do things as they grow and learn. I have had depression and anxiety, you may have to watch for this as we put a lot of pressure on ourselves to be as we used to be. I find epilepsy very frustrating as no one seems to have any answers to questions because of the nature of it luckily I have a good neurologist/ep nurse and most important HUSBAND. Its not going to be easy for you but hopefully together you can come through it and he will find a med that works.
Sorry bit of an essay, All the best Janet
Sorry bit of an essay, All the best Janet