Add a second anti-seizure med or a sleep med instead?

[no.guru]

Lamictal is by far the best med of several I've taken. I'd like to stay on it. But I've had horrible insomnia from it, taking 100mg twice daily. Three to four hours of not very restful sleep for weeks on end.

Doctor suggested melatonin but I was already taking that. From what I understand melatonin helps in falling asleep not sleeping through the night, which was the problem. A Benadryl-class drug he prescribed helps but only if I use it occasionally.

I've been taking both doses of Lamictal in the morning and this has helped with the sleep problems but I've also frequently been having extremely sharp pains along the length of my spine. I've had those since a TBI when I was a teen but they were very infrequent and not nearly as severe since the sleep problems.

I'm thinking the spinal pains are probably the result of a combination of a lack of sleep and a more varied blood level from only one daily dose. Seems the best approach is to go back to Lamictal twice daily, as prescribed, and asking for a real sleep med if the sleep problems happen again.

Has anyone had similar issues with sleep problems? Comments and suggestions welcome!

 

[Suman]

My son did have insomnia and severe abdominal pains when on Lamictal. He also had several more seizures on Lamictal. When he went for a blood test to check the level of Lamictal in his blood, the more scary thing was that his blood sugar was at 56 on a full stomach.
Perhaps a combination of medications, especially a change in the night time one may help.
I hope this is hopeful to you!! Best

 

[Cint]

Doctor suggested melatonin but I was already taking that. From what I understand melatonin helps in falling asleep not sleeping through the night, which was the problem. A Benadryl-class drug he prescribed helps but only if I use it occasionally.

I've taken Lamictal years ago, but it didn't help with my seizures. I'm currently taking Keppra, which does bring on problems such as rage for many others. But it helps me with the seizures. However, as with all AEDs, one should be very careful when taking Benadryl as this medication could lower the seizure threshold. My epileptologist told me never to take Benadryl.

http://www.epilepsy.com/learn/triggers-seizures/illness-and-over-counter-otc-medicines

Do over-the-counter (OTC) or other prescription drugs affect seizures?

Some medicines that you pick up off the shelf at the drug store can potentially increase the frequency of seizures in people with epilepsy, or even cause seizures for the first time.
The most common OTC medicine that may affect seizures is probably diphenhydramine. This medicine is the active ingredient in medications like Benadryl, which is used for colds, allergies, and sleep. If you have epilepsy, you should talk to your doctor before you use it.

 

[Kgartner]

I've taken Lamictal years ago, but it didn't help with my seizures. I'm currently taking Keppra, which does bring on problems such as rage for many others. But it helps me with the seizures. However, as with all AEDs, one should be very careful when taking Benadryl as this medication could lower the seizure threshold. My epileptologist told me never to take Benadryl.

Interesting. I asked my daughter's neurologist about Benadryl and he said it was not an issue. In fact, when she had an allergic reaction to Trileptal, they gave her a prescription for it! And she's taken it multiple times with no issues.

I guess another instance where what works for one person causes issues for another!

 

[Cint]

Interesting. I asked my daughter's neurologist about Benadryl and he said it was not an issue. In fact, when she had an allergic reaction to Trileptal, they gave her a prescription for it! And she's taken it multiple times with no issues.

onder: I've taken Trileptal, also, for seizures and didn't have an allergic reaction to that med. I did, however have an allergic reaction years ago to Phenobarbital.
And another bad reaction to Felbatol years ago... that is one NASTY drug!

So, like you said:

I guess another instance where what works for one person causes issues for another!

I also took a med for depression and that brought on Type 1 Diabetes for me. SO.... be careful what you take!

 

[Hobbes]

no.guru, Have you had a sleep study?

My child has had sleep issues since before lamotrigine. Getting off oxcarbazepine caused the problem to be more prevalent (while on lamotrigine). Does anyone find the extended release versions of drugs help with this?

 

[no.guru]

no.guru, Have you had a sleep study?

My child has had sleep issues since before lamotrigine. Getting off oxcarbazepine caused the problem to be more prevalent (while on lamotrigine). Does anyone find the extended release versions of drugs help with this?

I have but it's been over a decade and when I was on another drug.

Thanks for the replies, everyone. I'm staying away from Benadryl-class drugs anyway. For now clonazepam is working much better for that, although I know it won't last.

 

[Porkette]

Hi no.guru,

I take vimpat and that causes insomnia and I can't sleep at times so my Dr. ordered a sleep study to be done and come to find out I was having seizures in my sleep 1-2 hrs. before I would wake up. My Dr. then put me on cbd oil and that has done wonders I can sleep better plus just like you I have a bad back and the cbd oil kills the pain. You may want to look into the cbd oil I just squirt it in my mouth 1-2 times a day and I have found it helps me sleep better, my seizures have decreased, and the back pain is pretty much gone. If you are interested check out healthyhempoil.com Here's wishing you only the best and May God Bless You!

Sue

 

[no.guru]

Hi no.guru,

I take vimpat and that causes insomnia and I can't sleep at times so my Dr. ordered a sleep study to be done and come to find out I was having seizures in my sleep 1-2 hrs. before I would wake up. My Dr. then put me on cbd oil and that has done wonders I can sleep better plus just like you I have a bad back and the cbd oil kills the pain. You may want to look into the cbd oil I just squirt it in my mouth 1-2 times a day and I have found it helps me sleep better, my seizures have decreased, and the back pain is pretty much gone. If you are interested check out healthyhempoil.com Here's wishing you only the best and May God Bless You!

Sue

Thank you, Sue. This looks promising!

 

[AlohaBird]

Hi no.guru,

Not sure what the laws on the subject are in Rationalia but have you considered the medical use of cannabis as a sleep aid?
In Hawaii you need a medical card, in Colorado you just walk in to the store and get some.
Cannabis can be a very effective sleep aid without the "hungover" feeling that a lot of prescription sleep aids can have.
And if you are not into smoking, there are a lot of options these days in edibles, oils, etc.

 

[valeriedl]

I've been taking lamictal, and a few other meds, for at least 8 years and I've really never had any problems sleeping. I'm usually tired a lot but I think that's a side effect of one of the other meds I'm on.

I've been taking both doses of Lamictal in the morning and this has helped with the sleep problems but I've also frequently been having extremely sharp pains along the length of my spine. I've had those since a TBI when I was a teen but they were very infrequent and not nearly as severe since the sleep problems.

What's going on sounds similar to what was happening to me when I was having back problems. About 14 years ago I started having back pains. I would have some pain in my back and at times it would shot down a leg every so often. At the years went by it got worse. The pain would shoot down both of my legs and it hurt to walk. Often my back would freeze up hurt so bad I couldn't even move. Wound up going to the ER because of that a few times. I had a good bit of trouble sleeping then because if I turned the wrong way in bed the pain in my back or the pain shooting down my legs would wake me up. It turned out I had two very sever herniated discs. I had to have screws put in to my spine. After that I didn't have any problems at all and could sleep and move just fine. You could possibly be having back problems because and might want to get it checked out.

 

[no.guru]

Hi no.guru,

Not sure what the laws on the subject are in Rationalia but have you considered the medical use of cannabis as a sleep aid?
In Hawaii you need a medical card, in Colorado you just walk in to the store and get some.
Cannabis can be a very effective sleep aid without the "hungover" feeling that a lot of prescription sleep aids can have.
And if you are not into smoking, there are a lot of options these days in edibles, oils, etc.

North Carolina laws are moving in the right direction recently, but they're not there yet. (Rationalia collapsed.)

Since Sue's comment, I've been taking CBD oil - which is legal here - and I've been sleeping much better. Not sure if that's what's doing it though, because I've also split the doses 150/50. I'll keep the thread updated.

 

[gnault]

I have been having restless sleep issues as well on Lamotrigine. I take 150mg twice a day and get restless sleep that averages between 5.5 to 6.5 hrs of sleep a night. Yesterday I tried taking the full 300mg at night instead of splitting the dose. Now this morning I dopey and drug out. I still only got about 5 hours of sleep last night according to my fitness tracker. Laid awake, finally fell asleep around 1230 am up a few times and up before my alarm which goes off at 0525. My doctor wanted me to try a sleeping pill but chose to take the lamotrigine once a day instead of twice a day. I don't see my neurologist until October. The other issue I have for the most part is flat-line emotional state, but that's a whole other issue on its own.

 

[Nakamova]

For me the lamictal-related sleep problems went away after about 3 months. Not sure what brought about the change -- could have been a slight lowering of my dose. I do occasionally take "Super Snooze," a supplement that contains calcium, magnesium, valerian, hops, chamomile, passionflower, inositol, L-Taurine and melatonin.

An important note about melatonin: Make sure to doublecheck with your neuro, before trying it. Melatonin can make some kinds of seizures worse!

 

[AlohaBird]

Nak is right about melatonin. It can work wonders for some people but I found it made my seizures much worse (like 3 in 2 days when I hadn't had any in almost a year). Definitely approach with caution.

I occasionally take a sleep aid by Gaia called "Sound Sleep" which is passionflower, skullcap, kava, valerian, California poppy, vervain, and kola leaf. Similar to the one Nak takes but without the melatonin. I also take a Magnesium pill that also has some supplemental Vitamins D & C included called "Magtein".

Mark Sisson over at the Mark's Daily Apple website and forum has a brand he calls "Primal Calm" which is Mg plus a few other things but is also all natural. So, you do have options that are non-narcotic.

Glad to hear that you are trying out the CBD products. There is a cannabis paste called Holden's Hope that comes out of Colorado (where they know a thing or two about growing cannabis) that I am using with great success. It is a super low THC/high CBD strain of cannabis, so low in TCH that it is legally "hemp". The plant is gently cooked in the oil of your choice and then the whole plant is blended into the oil. I'm finding this is working better for me than the CBD extracts did. The extraction process, depending on the brand, can often involve high temperatures and chemical solvents which tends to de-activate "the good stuff" before it can do you any good. I'm also finding that being a whole plant, it is more "time released" in my digestive system so it stays with me for the whole night, not just getting to sleep but staying asleep.

I wish you quality zzzzzzzz