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MartyAnn

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Hi, I'm new to the forum. I have a 21-year-old daughter who has suffered with epilepsy since shortly after birth due to a birth injury. Over the years we have tried numerous things. A major contributing factor to her uncontrolled seizures is poor sleep. Sleep has been a problem for 10+ years and is common with her diagnosis and in those with such significant brain injuries. She has had the same neurologist for the past 18 years and he has never been proactive in addressing the her poor to sometimes non-existent sleep, although we know how much it contributes to her seizures. Recently we met with a new neurologist, while taking her history from us sleep was one of the first things he asked about. After hearing how little she sleeps he explained that one of the first things he would like to address is the sleep. He is recommending Seroquel, there would have been other options but due to the fact that she is, and has been on diazepam for so many years, they are not relevant. This leads me to my question for all of you; have any of you (or those you care for) used Seroquel for sleep? If so, would you please share your experiences? I truly appreciate anybody's input.
 

Nakamova

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Hi MartyAnn, welcome to CWE!

I don't have any experience with Seroquel, hopefully others will chime in. I've addressed my own sleep issues on occasion with a "SuperSnooze" supplement (containing, among other things, passionflower, hops, magnesium, valerian and chamomile). I don't know if something like that would make sense to try before moving to the heavy stuff. (Of course check with her doc first before adding any OTC supplements).

Has your daughter ever had a sleep study done? Long-term use of diazepam and other benzodiazepines can sometimes cause sleep apnea, which has a high correlation with seizures as well as poor-quality sleep in general. Just a thought.

Best,
Nakamova
 

MartyAnn

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Thank you Nakamova for your response. I will definitely inquire about the SuperSnooze and the sleep study. She has not ever had a sleep study, they have just always put her poor sleep down to the brain injury. I was not aware of the correlation between long-term use of benzos and sleep apnea, seizures or poor-quality of sleep. I really appreciate the information.
 

Porkette

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HI MartyAnn,

Welcome to CWE! Nakamova gave you so great news about a sleep study. A few yrs. ago I noticed I was having seizures when I
first woke up and then after I was asleep they are called myoclonic seizures. I had no idea I was having seizures in my sleep until
a sleep study along with an e.e.g. and e.k.g. were done on me and it was then that my neuro found out I was having seizures in my
sleep but after I went on the drug vimpat these seizures stopped and now I just have absence and complex partial seizure.

What you may want to ask the neuro about is cbd oil (medical marijuana) I found out I was drug resistant to all seizure meds
so I went on the cbd oil and take my word that makes you sleepy within a few seconds. This could be what your daughter needs
to help control her seizures and help her sleep.

I wish you and your daughter the best of luck and May God Bless the Both of You,

Sue
 

Sabbo

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Hello & welcome to CWE. I was a forceps delivery, & it left scar tissue in my brain. Since childhood, I'd often complain of "weird feelings" in my head, which were actually simple partial seizures--they weren't diagnosed until 1987, when I had some tonic clonic seizures. During an EEG I had one of the feelings, and the doctor said those were seizures. About 25 years ago I began having complex partial seizures as well.
I have taken almost every medication out there. I was allergic to many, and some just seemed to stop working. I'm currently taking 400mg/day each of Topamax & Zonegran, along with 1mg Folic Acid. Even then, I average 1-3breakthrough complex partial seizures/month. Those are very troublesome since I have NO aura, and without any witnesses, don't know what happened during them.
 

valeriedl

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Hi MartyAnn, it's nice to meet you!

When you are in your teens having a regular sleep schedule isn't something that happens. Usually if you're tired you sleep, if you aren't then you stay awake. I don't know if she's in college but it can be that way too. She might be up late or wake early to study or go out with friends. If she works then her work schedule weaves in with her sleep schedule too. Not getting enough sleep can be a huge seizure trigger! Everyone else has given some great advice.

If she's had the same neuro for 18 years and if you aren't happy with the way he has been addressing things over the years then you might want to look into finding a new one. If you don't like the way the neuro you've started seeing is issuing things then you could look for another. Finding the dr that you feel is right isn't an easy thing to do sometimes.
 

MartyAnn

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HI MartyAnn,

Welcome to CWE! Nakamova gave you so great news about a sleep study. A few yrs. ago I noticed I was having seizures when I
first woke up and then after I was asleep they are called myoclonic seizures. I had no idea I was having seizures in my sleep until
a sleep study along with an e.e.g. and e.k.g. were done on me and it was then that my neuro found out I was having seizures in my
sleep but after I went on the drug vimpat these seizures stopped and now I just have absence and complex partial seizure.

What you may want to ask the neuro about is cbd oil (medical marijuana) I found out I was drug resistant to all seizure meds
so I went on the cbd oil and take my word that makes you sleepy within a few seconds. This could be what your daughter needs
to help control her seizures and help her sleep.

I wish you and your daughter the best of luck and May God Bless the Both of You,

Sue
Thank you Sue for your response. We have been using CBD oil for 4 years and it has helped decrease her cluster seizures as well as speed up her recovery after. Unfortunately, it does not help with her sleep. We have tried numerous drugs over the years to try to address the sleep issue. It seems she has a high tolerance to many medications that would easily put most people to sleep. She is also on Vimpat and Lamictal for seizure control. Everything I'm hearing convinces me that we need to ask for a sleep study. Thank you again!
 

MartyAnn

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Hello & welcome to CWE. I was a forceps delivery, & it left scar tissue in my brain. Since childhood, I'd often complain of "weird feelings" in my head, which were actually simple partial seizures--they weren't diagnosed until 1987, when I had some tonic clonic seizures. During an EEG I had one of the feelings, and the doctor said those were seizures. About 25 years ago I began having complex partial seizures as well.
I have taken almost every medication out there. I was allergic to many, and some just seemed to stop working. I'm currently taking 400mg/day each of Topamax & Zonegran, along with 1mg Folic Acid. Even then, I average 1-3breakthrough complex partial seizures/month. Those are very troublesome since I have NO aura, and without any witnesses, don't know what happened during them.
Thank you for sharing. Julia also has been on many medications throughout her life to try to control the seizures. Problem is, as you have experienced, the seizures change and medications need to as well. Before adding another seizure medication or considering VNS the new neurologist wants to attempt to get her sleep under control. He thinks that alone will show a reduction in seizures.
 

MartyAnn

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Hi MartyAnn, it's nice to meet you!

When you are in your teens having a regular sleep schedule isn't something that happens. Usually if you're tired you sleep, if you aren't then you stay awake. I don't know if she's in college but it can be that way too. She might be up late or wake early to study or go out with friends. If she works then her work schedule weaves in with her sleep schedule too. Not getting enough sleep can be a huge seizure trigger! Everyone else has given some great advice.

If she's had the same neuro for 18 years and if you aren't happy with the way he has been addressing things over the years then you might want to look into finding a new one. If you don't like the way the neuro you've started seeing is issuing things then you could look for another. Finding the dr that you feel is right isn't an easy thing to do sometimes.
Thank you for your advice. It's quite scary transitioning from one specialist to another. The fear of making the wrong decision and being "stuck" is making me second guess my decision. However, I know that things have to change if there is hope for improvement. I need to remind myself of what you said...we can always look for another even if this new one doesn't feel right.
 

Porkette

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Hi MartyAnn,

Your daughter sounds a lot like me not finding a seizure med to work. You may want to ask her neuro to do a DNA test on her
this will show what drug will work the best for her or if she's drug resistant like me. All the Dr. has to do is draw some blood and
get some saliva from her mouth. That will be sent to the lab where the Dr. will be able to see the amount of enzymes in her liver
and her body chemistry. Then the Dr. will be able to see if she will be able to take a drug to help her with the least side effects or
if she is drug resistant. One thing I started doing a couple of yrs. ago is taking 2 tablespoons of apple cider vinegar with mother in
it and that has decreased my seizures to the lowest in my life and the seizures are less severe. She can give that a try is she wants to.
I wish you and your daughter the best of luck and May God Bless the both of you,

Sue
 

EpiParent

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Hi, I'm new to forum. My son (15) was just diagnosed with epilepsy and just started taking divalproex. I have a few questions and just need "support". :) Trying to "process" this new thing.. Was I supposed to start a new link or is this the place? Don't want to interrupt previous person's thread.
 

Cint

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Recently we met with a new neurologist, while taking her history from us sleep was one of the first things he asked about. After hearing how little she sleeps he explained that one of the first things he would like to address is the sleep. He is recommending Seroquel, there would have been other options but due to the fact that she is, and has been on diazepam for so many years, they are not relevant. This leads me to my question for all of you; have any of you (or those you care for) used Seroquel for sleep? If so, would you please share your experiences? I truly appreciate anybody's input.
Hi MartyAnn,

I've had E for over 40 years and have had extreme depression. The psychiatrist I was seeing for several years prescribed Zyprexa, a drug used for bi-polar and other mental illnesses. That is what Seroquel is supposed to be used for. AND, after 3 months on Zyprexa, I developed Type 1 Diabetes. Seroquel can have the same side-effects. So BEWARE!! I also have the VNS
 

EpiParent

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Hi, I'm new to forum. My son (15) was just diagnosed with epilepsy and just started taking divalproex. I have a few questions and just need "support". :) Trying to "process" this new thing.. Was I supposed to start a new link or is this the place? Don't want to interrupt previous person's thread.
Sorry. Moved this to another thread... Newbie...
 
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