epilepsy and insomnia

[CarrieH]

I've suffered from chronic insomnia for the past 7 years. It's been longer than that but I used Melatonin for relief before prescription meds. I have to alternate between Ambien 10mg, Ambien CR 12.5mg and Lunesta 3mg. I've tried Sonata, Trazadone and some heavy duty Benadryl drug I can't recall the name of, but it did nothing but make me twitch like Benadryl just as I told the doctor who prescribed it would. I've also used Xanax 1Mg to help me crash.

The problem I have is the doctor who prescribes the medications is not a good fit for me. I have seizures from lack of sleep and stress. I have tried to come off sleep meds, the problem I have is rebound insomnia that causes me to have a seizure after a day or two of no sleep, otherwise I would get off the sleep meds.

I don't want to return to the cranky lady I currently see.. my question is who do you use for sleep issues? Does your Neurologist prescribe sleep meds? I've been through the whole sleep study test and while sleep hygiene and habits are important its not that easy for me.

Thanks!

-Carrie

[difenbaker]

Carrie
I've thought about talking to my neurologist about it as I've always used my rheumatologist whom I haven't seen now since my son was about 2-3 months old (he's 25 months now). My insurance had changed but he was always very generous with the refills. I took ambient 10-20 mg for 18 months before I got pregnant as well as seraquel and melatonin. The melatonin at 1mg was enough to throw me into seratonin syndrome. I don't remember what other meds I was on at that time. Since I've had the baby I've taken flexeral (10-30mg) and vicodin (regular and extra strength). I do not recommend to anyone trying a narcotic regimen to sleep, but for a few months that's all that could knock me out. That was awful. I haven't now had a good night sleep in about 6 months. And I'm thinking it's time to try something again. At least for a little while. But like I said I was going to talk to my neurologist, my PCP is useless.
Lisa

[marion]

Hi Carrie - I used to take xanax to sleep, for many years. I started at 25 mg and just used it occasionally, when I traveled. Over the years I started using it nightly and gradually increased to 75 mg. For me, the longer I took it, the less effective it was, and thus the increase. When I was 66 I decided it was enough and wanted off, so I decreased it over 3 weeks, thinking that was slow - it isn't. I started having all kinds of physical problems, one of which was nocturnal seizures. A seizure isn't unusual after withdrawal, but mine continued, and that is unusual. At the time, I belonged to a forum for those getting off benzodiazapines, much like this one, and heard about all kinds of problems people were having during and after withdrawal. Some were bedridden for over a year, many severely debilitated, and some permanently disabled in some way.

All of this is to warn about the dangers of sleeping meds. I understand the temptation, and know how difficult it is to not sleep, but... -marion

[Endless]

Hi, Carrie,

Most doctors that specialize in sleep are pulmonologists (spelling?). There ARE sleep doctors who are also neurologists, but you have to look for them. They will understand your neurological issues, your seizure drugs, and how they affect your sleep. They wouldn't treat your epilepsy, just the sleep issues.

[jyearta]

I been having problems sleeping also. I take clonazepam (klonopin) 0.5mg
1/2 tablet every four hours, except at 10:00PM, I take a whole tablet.

I added Magnesium 250mg along with my clonazepam at 10:00PM, and this has helped me going to sleep.

Not wanting another drug, I don't know what to try next.

[CarrieH]

Thanks for all the honesty with your experiences.

Lisa- Please be careful with the Flexeril because it lowers seizure thresholds.

Marion- I'm no longer on Xanax. I'm on my 3rd week of Lamictal XR and it makes me sleepy right after I take it for a couple hours. That added to the fact that I moved over the past weekend my doctor that normally gives me the Xanax told me I looked "high" or "stoned" almost 5 minutes after I told her Lamictal was rough on me! Onto another doctor I shall go as I am sick of her comments.

Endless- We moved from DFW to the Seattle area in Oct. 2010. In Dallas I had a Psychiatrist who I adored write me the RX for my sleep meds. She understood why I had to sleep, why I wanted to avoid seizures and the need to change my sleep meds up and even be creative sometimes. I stayed with her for 5 years, she quit practicing in Dallas and I was moving anyways. I found a Sleep Specialist who was a neurologist. She was HORRIBLE. She did NOT understand my situation, she didn't have kids, especially little kids that must be watched constantly and can't be trusted. She didn't like me bringing my 2 year old into the office. To make a long story short, her inability to be compassionate made me look for someone else. She diagnosed me with a Nervous Disorder because of how important I rank the need for sleep in my life and how sleep medicine has become a necessity for me with seizures and Fibro sleep just isn't easy.

Thanks again to you all for taking the time to write your experiences and thoughts down for me. I'm sorry you guys have the same troubles I do, but it's nice to know I am not alone in this world.

-Carrie

[chanceangel18]

I had the same problems, took Xanax for years and like you each time I tried to come off them I had the same problems. But thanks to the Good Lord and a great neurologist. doctor, I got off them. But I had some of the worse seizures possible. It took me months to recover, so now I just stick to my seizure meds and a very low dose of adivant.

[elizzza811]

I used to be on klonopin for anxiety and insomnia. I eventually got tired of being treated like a doctor-hopping benzo addict, figured I'd 'show them', and decided to come off of it on my own. For years after I thought I was still going through 'withdrawal'. Found out recently that the only reason klonopin ever helped my 'anxiety' was because my 'anxiety attacks' were really seizures in disguise that doctors had missed. Also, my 'benzo dependence' was not really a dependence (or addiction) at all - I had an underlying seizure disorder all along.

So don't beat yourself up for 'needing' benzos. I'd never go back on them myself, but only because my doctors were all too ready and willing to allow me to convulse off of them to prove some point to me...(that doctors are powerful?) They did help.

[jyearta]

I used to be on klonopin for anxiety and insomnia. I eventually got tired of being treated like a doctor-hopping benzo addict, figured I'd 'show them', and decided to come off of it on my own. For years after I thought I was still going through 'withdrawal'. Found out recently that the only reason klonopin ever helped my 'anxiety' was because my 'anxiety attacks' were really seizures in disguise that doctors had missed. Also, my 'benzo dependence' was not really a dependence (or addiction) at all - I had an underlying seizure disorder all along.

So don't beat yourself up for 'needing' benzos. I'd never go back on them myself, but only because my doctors were all too ready and willing to allow me to convulse off of them to prove some point to me...(that doctors are powerful?) They did help.

I would like to come off klonopin, I was told by a Neur. that I would have to agree to being hosp. for 1 year to achieve this. I'm not will to going through this.
I tried to come off slowly, Now I take 1/2 tablet (0.5) every 4 hours and 1 tablet at 10:00PM---SO I tried every 5 hours, was working good for 3-4 days--THEN, I went into a deep, dark place, medic. for depression didn't help. When I went back to every 4 hours, the depression got much much better. This has made me so afraid to try some other way.

PLUS, when I was on phenob. along with dilantin, my seizures were a lot more intense, they lasted longer, and they were a lot more frequent, a lot more.
every since I have been on klonopin and dilatin, my seizures do not happen that often, don't last as long (2 -3 seconds), not as intense. I can be in the room with others, and they don't even know I had a seizure.

Since this medic. has helped my seizure control this much, why would I want to chg.

Even now with a new neur. - I have given her my seiz. history along with medic. that I have pres. in the past and their side effects.
But she insist that I need a 3th medic. to be seizure free.
I have had horrible side effects to the medic. she has presc. for me.

I don't understand why she will not listen to me. I know she is a neur. and that her role is NO MORE SEIZURES, but what about the side effect that cause you to have a life that is unbearable.

I perfer to live this way, this way I have a life worth living.

Boy, did I go on and on, guess you can tell I'm frustrated, this is because I have appt. with her in a few days and know she is going to insist on another medic. and if I say NO, then she will dismiss me, and I don't want that. She has helped me and I just don't want to go looking for another neur.

Thanks for reading.

[Lewall]

I'm curious if anyone has evey had klonopin or xanax prescribed as a seizure med. Ive read that this is one of the legitimate uses for these meds. I took xanax for several years for anxiety and sleep, and I noticed that my petit mals were better controlled. now that I am off xanax, my anxiety is out of control, my sleep is always a problem, and this only exacerbates my seiszures the next day. I' starting to wonder if klonopin or xanax would not be a good idea to try.

[jyearta]

I'm curious if anyone has evey had klonopin or xanax prescribed as a seizure med. Ive read that this is one of the legitimate uses for these meds.

yes, I am on clonazepam (klonopin) and dilantin.

I was 1st. presc. clonazepam by my FP for sleep, that was in 2004, 2 tablets at 10:00PM
In 2005 my neur. didn't want to add a 3th medic. so he wanted me add 1/2 tablet (0.5mg) tablet. 1st. I tried every 6 hours, then every 5 hours, but I keep having siezures. Then I tried every 4 hours --around the clock--except at 10:00PM, then I take 1 whole tablet.

My seizure medic. regimen is as follows:
6AM 2 dilantin (100mg) and 1/2 clonaz., 10AM 1/2 clonazepam, 2PM 1/2 clonaz., 6PM 1/2 clonaz. and 2 dilantin, 10PM 1 whole tablet clonazepam, 2AM, 1/2 clonaze.

I didn't know that this was an additive medic. however my seizure have never been this well under control, so I wouldn't want to change to another.

[Lewall]

That is very helpful information. Sleep and anxiety control are the primary issues in controlling my seizures. I am just hoping my neurologist recognizes this as we search for the right regimen.

[jyearta]

Sleep and anxiety control are the primary issues in controlling my seizures. I am just hoping my neurologist recognizes this as we search for the right regimen.

Like you, my siezures triggers are lack of sleep and anxiety.

In trying to find a neur. closer to my home, I came across one who refused to take me as a patient unless I agree to be hospitalized so that he could take me off clonazepam.
I got up and walked out.

The neur. that I'm currently see, 1st. visit was Oct. 13, of this year, and when I was leaving her office at that visit, she said LATER she will be getting me off clonazepam. I didn't say anything at that time, but when I HAD to go back because of side effects of medic. she put me on. I told her I appreciate all that she is doing to care for me, BUT that I will not come off clonazepam, unless she can give me a better reason other than it is addictive.
The way I see it, I will be on medic. for the rest of my life. So what if it is addictive.
It helps my seizure control.

Since being on this medic. my seizure don't come as often as before, my seiz. do not last long as ALL, and they are not as sever as they were in the past years.

She insisted on me being seizure free-I tried 3 diff. medic. and had horrible side effects.