New here..need some advice

[jkvette]

Hi,
I am new here, actually I do not have epilepsy my husband has had it for over 20 years... no seizures in over 8 years. He still takes Dilantin twice a day and has some insomnia issues I am determined to find a solution for and im hoping someone here can help me. The problem is I think a combination of insomnia and "old sleep habits". He gets home from work about 5:15 and is passed out by 7:00pm... sleeps on the couch til 1 or 2am comes to bed and gets up for the day at 3am or earlier sometimes. He says that when he wakes up that early he cant fall back asleep. His sleep habits are really affecting the whole family as our kids dont get any time with him because he is asleep so early. I am wondering if anyone has had luck with a different medication ( now the dr has told him he can wean off the meds..but I think he is scared to) or a sleep aid. Please if anyone has any suggestions I would really appreciate your response.

Thanks so much.
jkvette

 

[Nakamova]

Hi jkvette, welcome to CWE!

I used to be on Dilantin, and I'm on Lamictal now, so perhaps your husband can try that. If he does end up weaning off the Dilantin to try being med-free, I recommend that he taper very, very slowly -- over the course of several months to a year if possible. I think the more time you can give the brain to adjust to each drop in dosage, the better.

It sounds like he needs to gradually break the current sleep pattern -- any way you can get him to stay awake until 8pm, and then maybe 9pm the next night, and so on?

To help counter the insomnia, melatonin is worth trying, and also exercising about 5 or 6 hours before he wants to go to sleep.

Best,
Nakamova

 

[jkvette]

Thank you nakamova

Thank you for your reply. Now im sure you know much more than I about this. I did do some reasearch today about melatonin and of course you can find both good and bad things about mixing melatonin with epilepsy. Do you know if either has more proof behind it. Have you tried melatonin yourself? I am open to having him try anything but just want to make sure its safe. Of course his tapering (if we go that route) and taking the melatonin would be monitored by his doctor. Right now im trying to convince him there are methods out there that can help him with this. Because its really taking a toll on my kids because they dont get to spend time with him and our marraige from an intamacy aspect because his sleep habits. '
Again ANY advice or knowledge you can give is so much appreciated.

Thanks
jkvette

 

[Nakamova]

Hi jkvette --

I don't take melatonin myself (my sleep is fine), but others on this site do so without any problems. Another non-drug approach is to use deep-breathing relaxation exercises while lying in bed, or to use relaxing CDs along the lines of the Delta Sleep System (these are specifically designed to summon up the "good" deta brainwaves.).

 

[celesteam]

Yikes... sleep is SO important

Yikes! Sleep is SO important to help fend off seizures. I wish you the very best as you find a solution. What a difference it would make. This could be hugely helpful on many many levels, as you so capably pointed out. Honestly, you have my hopes that soon you will find clues.
-c

 

[jkvette]

celesteam..

Thanks celestem for your encouragment and again I do not personally suffer from this disease so please dont read this as being ignorant or disrespectful..but to me.. it really seems like an easy fix.. if my husband falls asleep every night at around 7 or 7:30... if we kept him up til 10 gradually of course..and he took a mild sleep aid ( i have been taking tylenol pm at night for years) then he would have to sleep for at least 6 or 7 hours... am I wrong for thinking after a week or two of trying this it would work? again im really not trying to undermind this disease by any means..but he has been seizure free for over 9 years and has been told he can wean off him meds.

Thanks again in advance for your advice.

jkvette

 

[Rae1889]

hello and welcome
I think he needs to start by taking little steps to force himself one week at a time to stay up an hour later. say next weeks start him going to bed at 8, and in bed nto the couch. then the following week he sleeps at 9pm in bed. and then the next week he sleeps at 10pm. if he wants to do it a bit slower (say taking it 2 weeks at a time) that will be okay too. but has to want to stay up later.

does he ever give you a reason other than "I'm tired?" maybe he is bored, or stressed. try to talk to him about that.

I agree with Nakamova though. if you do start to wean meds, go very slowly. very very slowly.

I am on Lamictal too and now that I'm at a higher dose and with Melatonin, I sleep much much better than I did before. Much better. I am taking 20mg a night. I can't reach a deep sleep without it so I never felt properly rested.

 

[jkvette]

Rae

Hi Rae
THanks for your encouragment as well. He dosnt really give the excuse he is tired.. and i believe it is part of the disease because he will "literally" fall asleep while eating ... (on the couch of course) but I mean ..literally.. while chewing his food.. he will fall asleep with the food still in his mouth. And this alone is not safe.

Right now its tough becaue he feels that its his disease..and "his" problem.. but when it is affecting our family and our marriage in a major way.. it becomes MY problem as well. I think it may just take time to have him see the pictures I see in my head..if we were all on the same sleep pattern. But here is how much this affects me as well...since he is always an early riser.. I have been with him over 7 years..and that makes about 255,500 days..not ONCE have I woken in the morning with him in the bed next to me..not ONE SINGLE time.. and i know its a girl thing..but ya know it might be kinda nice once in a while.. not even the morning after our wedding....not once. Am I being selfish here? please be honest.

THanks to everyone here..you have no idea how much your advice and support means right now,
jkvette

 

[Nakamova]

No you're not being selfish! As you know both sides in a relationship make compromises and do things out of their comfort zone from time to time. This is a major quality of life issue, not juts for you, but for your family too -- so it's worth being proactive about. Obviously, if your husband's resistant to making any changes to his current routine, then that's the first and biggest hurdle. If you can draw up a concrete plan to adjust his sleep schedule, and you're both on board with it, then you can start right in. But if he's not open to the idea of changing his schedule then your task is harder and involves more prep work in terms of conversations about the big picture.

 

[Inaara]

I'm sure my ex husband would tell you you're not being selfish since I don't think in seven years he ever woke up with me next to him (I have always been a horrible insomniac and it's only gotten worse) and I don't think you are either.

I used to take melatonin, but it didn't work for me personally. For most people, it works great. I'm currently doing some (supervised by Dr. Useful and my cousin who's a cancer surgeon) research into other natural/herbal stuff to see what might work because I'm not all that whipped out on stuffing pills down my throat. *shrug* If I find something that does work for me, I'll let ya know.

 

[Nakamova]

For anyone who's interested, here's a link to the Delta Sleep System on Amazon:


[ame="http://www.amazon.com/Delta-Sleep-System-Jeffrey-Thompson/dp/B00005BIY7"]Amazon.com: Delta Sleep System: Jeffrey Thompson: Music@@AMEPARAM@@http://ecx.images-amazon.com/images/I/31RZTTMKHAL.@@AMEPARAM@@31RZTTMKHAL[/ame]

 

[Rae1889]

No your not being selfish. at all. I completely agree with Nakamova.

Has he ever had a sleep study done? maybe he has mild narcolepsy as well (random moments of falling asleep) this way he can check and see what is going on when he sleeps and why he sleeps the way he does. There are seizures that happen while you sleep that do not show any physical manifestations. these are Electrographic seizures, and can make you feel like you have had no sleep at all, eve though you slept so much.

What does he do for a living. Maybe its something in his work enviroment that is affecting him too. Or maybe I you thought. It is his meds doing it

Either way, its time for a neuro appointment, and maybe have both of you there to chat.