Hello Again After 2 Years

[Pinkattitude]

Hello All,
So, after 49 years of taking Mebaral then Phenobarbital and having seizures fully controlled, seizures came back on a daily basis. First they were night - falling asleep - seizures. Then added morning - waking up - ones. Then they would come during day, also - the end of driving.
Last week I had a video-taped EEG, EKG for 5 days in the hospital. Doc says phenobarb is no longer doing its job, let's switch to another med. I'm trying Lamictal, which seems to be working. Came home 8 days ago taking 1/2 pill per day and also taking Lorazipam for 7 days to be sure the sleep deprivation and all in the hospital didn't have long term effects. Also still on Phenobarb during this time.
The Lorazipam knocked me on my butt for the week - soooo tired! Thursday morning I had a huge headache and took asprin first thing when I got to work. Took last Lorazipam Thursday night, then on Friday started taking 1/2 pill of Lamictal twice a day.
Last night I had insomnia (nearly unheard of for me - oh, and I'm menopausal). Then a headache started in my left temple. This morning I have what I feel is a migraine and coffee (my mainstay) is not helping it at all.
Is the insomnia and headache possibly the work of the Lamictal? I can't tell if I'm just sick or having side effect or menopause crud.
Any wisdom appreciated!
Thank you,
Betsy

 

[Nakamova]

Hi Pinkattitude, sorry to hear that the seizures returned! And med transitions are no fun either.

The Lamictal is a likely culprit for the headaches and the insomnia. I experienced both side effects when I first went on Lamictal, but they went away after two months at a stable dose. I found that in my case the Lamictal headaches responded best to Acetaminophen (Tylenol), even though ibuprofen is what I usually use.

I hope the side effects disappear for you too -- it can take awhile as the brain adjusts, so hang in there if you can. If you find the side effects are persisting or getting worse, let your doc know.

Also -- since your seizures returned at menopause, there's a possibility that one of your triggers is hormonal fluctuations (estrogen spikes and progesterone dips are known seizure triggers), so you might want to ask your neuro about hormonally-based treatments and consider seeing an endocrinologist or your OB/GYN.

 

[Pinkattitude]

Thank you, Nakamova. Thankfully, I've slept well the last two nights and woke up this morning without that lurking headache feeling. :woot:

The good news is that in the eleven days since I started taking Lamictal, I've only had a seizure once! :clap: This is amazing since I was having them at least twice a day before!

I'm so grateful that you all are here to ask questions. The docs just can't answer the practical questions well!

 

[Nakamova]

It's great to hear that your seizures are going down! Do you have a target dose for the Lamictal?

 

[Pinkattitude]

The instruction I got when leaving the hospital was to take 50 mg once a day for a week, now I'm on 50 mg twice a day. It's been 1/2 a week on that dose. The dr didn't say anything beyond that, and I have an appointment in a few weeks, so I imagine he will ask how I'm doing then and go from there.
Still taking 194mg of phenobarbital a day as well. That will be a VERY slow weaning off of once I'm secure on a new medication. I've basically been on phenobarbital for 49 years. I'm just a bit nervous about the weaning off of it because the detoxing may be nasty based on past experience from times we conscious tried to get me off of it and the time the pharmacist gave me the wrong pills. He gave me 1/2 dose pills which were the same size as the ones I usually took, so I didn't realize I wasn't getting enough until I put all the pieces together - hard time getting to sleep and auras. That was in the 1980s when I was in my 20s.

 

[Nakamova]

As long as you don't mind going very slowly, the phenobarb withdrawal should go okay. It's also fine to take a break for a few weeks after each incremental drop to give your brain some time to adjust before going down to the next level. When I tapered off Zonisamide (and I'd been on it less than 6 months) I took 5 months to do so...

 

[masterjen]

Based on instructions I was given and what I have seen on some medical sites on how to titrate onto Lamictal, you are on a fairly rapid titration. I was on 25 mg once per day for 2 weeks, then 25 twice per day for two weeks, then 25 AM and 50 PM for 2 weeks, and so on until I reached 100 twice per day. Then a little later on the titration process began again to get me to 150 twice per day. Slow, yes, but it does minimize occurrence of side effects like the dreaded skin rash, headaches, insomnia, etc.

 

[Pinkattitude]

Nakamova, with the phenobarb withdrawal, my experience has been that going off it made my mind race so bad it was hard to focus on what I was doing. This was 30+ years ago, so I don't remember how quickly/slowly I was decreasing it then. I just remember sitting at my job as an engineer and trying to focus on what I was supposed to be doing and my thoughts/mind seeming racing like the Indy 500. So going down VERY slowly sounds like a fab idea to me! :lol:

Masterjen, I think the neurologists look at me and see how much phenobarb I've taken and for how long, and I have very minimal side effects, so they put me in the category of "tolerates meds well". Thus he sent me home with 1mg pills of lorazipam and instructions to take one a night for a week - oy! I'm a dutiful person, so I did what he said, but I was so tired and slowed down by that one. When the week was done I was THRILLED to be done with them

Plus, in the hospital, they kept asking what my "Pain threshold" was at. The first time I was like, "uh, what???" Am I weird for not having pain a lot? I don't understand why they seemingly expected me to be in pain and made it part of their routine to constantly ask me if I was in pain. I've never been a "give me another medicine" person because it seemed like taking phenobarb every day was enough!

But it got me to wondering, do many people with E have pain daily?

 

[Nakamova]

But it got me to wondering, do many people with E have pain daily?

Not usually, unless it's due to a seizure-related injury. It seems a very odd question for the doctors to ask.

 

[Pinkattitude]

It just occurred to me that with E and migraines being closely related, they may have been watching for those. Was talking with a friend last night who has migraines sometimes accompanied by auras. She doesn't seizure, but if she doesn't take her med quickly she vomits. Was the first time I'd heard someone with something other than E say they had an aura.

 

[Nakamova]

Migraine aura is defined a bit different than an Epilepsy aura, though it is qualitatively similar.

Migraine aura = Non-headache migraine symptoms that can sometimes but not always precede the headache phase. In other words, standalone non-headache migraine symptoms are called aura, with or without an ensuing headache phase.

Epilepsy aura = what a simple partial is designated when it closely precedes a more generalized seizure (complex partial or tonic-clonic). So all epilepsy auras are simple partials, but not all simple partials are epilepsy auras.