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Arya123

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My partner has recently been diagnosed with epilepsy. I am at such a loss of how to help him cope. He is doing so well and then another seizure happens and he, and me I suppose, are knocked right back again.
He has only had 2 seizures precious to this year, now it is 6 in 6months, all since he has started on medication. I don't feel that it is the right meds for him and the doctors are being as much help as a chocolate tea pot. I am feel very frustrated.
There is little support for him and none for me. I don't want to be selfish and demand support but until I understand what I can do for him I can't help him as much as I need and want too.
He is such a strong person and I am so proud of him but it is affecting his life and confidence. He is obviously not driving just now and I think this is the worst part. His freedom has been stolen from him.

I'm sorry that this is a stream of consciousness I just need some advice and help of what to do or where to go. It's still so new and I can't take my eyes off him at home or sleep for days after he has one. I just want my partner to be settled again and for us to learn to live again.

Can anyone provide any advice on eplim chrono? He has gone from 200mg to 1000mg this year. We don't think it's right but what are the other options and are there any natural options??

Please any help or support would be greatly appreciated
 
Arya123

This might sound stupid to you but you are doing more for him right now by being there, well done. There have to be reasons you do not think its the right medication so go back and talk to your doctor until you get a result, ask the questions you need to ask and do not settle for it will be ok or this is something which is complicated. You need to start a diary and write down everything from when you take your medication to what you eat taking note of any changes in diet or behavior, write down everything no matter how small. If you and your partner think its not the right medication then say so, there are a lot of other medications out there. There is no quick fix for epilepsy it is more a trial and error.
 
It took a good while for the drs to find out what meds and dosages worked for me so don't expect the first thing that he is going to be put on is going to stop the seizures. I think I was on almost every med out there before so sometimes it's almost a guessing game sometimes for the drs too. I've been starting to have more seizures than usual over the last year so I have a feeling that the drs might start playing around with the meds again.

It also takes your body time to get used to the meds in order for them to start working so the drs might have to wait and see if that med works or if they need to try another. I know how frustrating it is!

Not being able to drive is one of the worst parts for me. I hate having to try to weave my life around everyone else's just so I can get places. My husband will even have to take a day off of work to get me to dr appointments and I can't stand it because that's a days worth of pay that we're not going to get.

As Fedup said - Just be there for him. The more support you can give him the better he will be able to feel about himself.
 
Arya123: Hello & Welcome! Oh, I wonder if there's an Epilepsy Support group in the city where you & your partner live? Also, since you are neither happy, nor satisfied with your partner's doctors & medication(s), start looking for new doctors. There should be hospital websites with recommendations about doctors, both good & bad, by patients. Then, remember that the doctor is only a guide to help your partner and you make better decisions about his care. Look for epileptologists if you can, because they even further specialize in epilepsy, rather than the field of neurology(epilepsy, Alzheimers, traumatic brain injuries, dementia, etc.....). One final point: Be available & around for your partner, but also make sure to take a long break away from him daily so you don't burn out from constant worry & frustration. Try it & see how it works out. Take care, Arya123. :-)
 
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Hi Arya123, welcome to CWE!

You've got some great advice above -- it's definitely worth it to be persistent about finding the right medication and the right doctor. If your partner's seizures have gotten worse on the Epilim then it's the wrong med for him.

There are some things you can do that don't involve meds. Good tips can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ and information about alternative treatments here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova
 
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