Choosing Not to Be Medicated

[Levihope]

Hi,

Crazy question, but I have simple partial seizures, only at night, and after reading all of the side effects of the meds, is it crazy for me to even consider choosing not to be medicated?

My neuro mentioned starting me on Trileptal in the future, and after reading the posts, I'm thinking, "no thanks, the seizures seem way better than any of the medications."

In the past, I had tried to take an anti-depressant, and that made me extremely ocd about suicide, and most of these medications seem to have that as a side effect. I don't even want to go there again. My sense of well being is too important.

Anyway, please let me know what you all think. My seizures consist of just my head doing a jackhammer motion and waking me up a couple of times a month. It's not every day, and it is not something that is effecting my life.

Your thoughts?

 

[no.guru]

Your seizures sound similar to mine. The problem with letting them go is they will almost certainly become more frequent and more serious over time.

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[Levihope]

No Guru,

You have seizures like that? Do they know what causes them? Mine are only at night. They thought maybe from apnea, but even on the machine I have them. It's just like a jackhammer and mostly set off from tossing my head on my pillow I think. How do you control your seizures? I really don't like the sound of the meds.

 

[no.guru]

Levi, mine aren't like yours exactly but they are simple partials and almost all of them have been in the middle of the night. They advance to T/Cs unless I stay in bed. For me it's not the head but the chest and abdomen area instead; the exact area varies.

For me there are a couple of things they could be connected with but it isn't clear, and I had my first seizure with no known cause when I was a child.

It's good you know they're seizures this early. I attributed mine to a stomach virus or flu or something I ate. The first couple were also years apart so they were easy to dismiss as one-offs.

It took almost a decade, but they became more frequent and more severe. When it was obvious what they were, I started meds. Some years have been better than others but overall it's under control.

I can understand wanting no drugs, but I don't recommend it. Taking as little as possible while getting the seizures under control, yes, and maybe later coming off them.

Someone here said they see their doctor as a very expensive Pez dispenser.

Amazing what you can learn to live with when you become accustomed to it - seizures and side effects.

 

[Levihope]

Wow, amazing to hear how differently the partials affect people. I don't think I would have been able to diagnose that one either. I was fortunate that I could describe my head convulsing and the second or third person I mentioned it too told me it sounded like seizures.

This so does not make me happy. I cannot imagine taking those drugs . . . ugh!! Thanks for your direction. I really appreciate it. I cannot imagine what has caused these seizures, and I don't know anyone with the problem. So it's good to be able to find a place to learn and discuss.

 

[no.guru]

You're right - it's great to find others with the same or similar experiences.

I'm wondering what has your doctor has said so far. Did they recommend a specific drug?

There's no predicting how you will respond to a drug, but it's also easy to imagine horrors that never happen. Even common side effects to a drug may or may not affect you.

The warnings on a bottle of aspirin make me want to avoid it forever.

 

[Levihope]

Well, last I left the neuro, he hooked me up with a sleep machine to take home for apnea, and he hoped treating the apnea would stop the seizures. His next step was trileptal. I'm thinking that is where we are going because what happens is I go into REM sleep, I stop breathing, the apap machine blasts air into my face, wakes me up, and I have a seizure. Somehow I'm thinking the machine is not having the effect that he hoped for.
I hear you about the warning labels and not to worry; I do tend to put the cart before the horse--just my nature. I probably shouldn't have read about the side effects, but I see everyone on here describing the woes of the medications, and I never hear about a good experience, so it kind of scares me. Although, truly, I do know there are people who have adjusted to their meds and are doing fine without any side effects, and I just need to remember that.

 

[Nakamova]

Although, truly, I do know there are people who have adjusted to their meds and are doing fine without any side effects, and I just need to remember that.

I'm one of those lucky ones. I'm on Lamotrigine, which has a reputation for fewer cognitive and emotional side effects than some of the other meds. It works fine for me. I hope you have a good experience with whatever course your neuro recommends.

 

[RunningGirl85]

I was undiagnosed for a couple of years after my first TC seizure (and who knows how long it went on before that), and at first I had partial seizures every once in awhile. They started getting way more frequent the past eight or so months and eventually culminated in another tonic-clonic back in April. I'm on medication now but I'm still having more partials than I did when I.first started having issues. Anyway, my point is it might be a good idea to try medicine. When they first diagnosed me and put me on Keppra I felt the same as you- especially when I was frustrated with the side effects (which are better now, by the way)- the partials didnt really bother me, and I'd only had a couple of tonic-clonic seizures (the ones I DON'T want ). I didn't want to deal with side effects. But based on what I've learned and experienced with untreated epilepsy is it will get worse if it's untreated and that could lead to more inconvenient seizures.

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[RobinN]

Have you considered making nutritional changes, and managing blood sugar levels to see if that might help your night time seizures?

 

[KelKel]

I'm in the same boat. I have simple partials and complex partials, and I have lived with them for a long time and they are more of an inconvenience than anything. I have temporal lobe epilepsy and the doctor said that left untreated, I could have memory issues very early, like in my 60s, and it couls progress to convulsions. I have only tried one med, Keppra, and was very rageful and tired, even on such a low dose, which didn't stop my seizures. I am going to try at least another couple meds before I give up, but if the side effects are bad, I think I would rather feel like myself and be happy and roll the dice.

 

[Levihope]

Nakamova, did you find that you gained weight with Lamotrigine? It's good to have at least a name to suggest to the dr when I see him.

RunningGirl, so yours progressed even on meds? That is kind of discouraging. How do you drive? I'm so scared of losing my license.

Robin, I'm not a big carb eater, so I don't think that is an issue with blood sugar. However, I do think this all happened in the throes of menopause, waking up with some pretty bad hot flashes, but now those are controlled on low doses of premarin, but still having episodes. I'm thinking I should jack up the hormones and see if that works.

KelKel, do you not drive then? That would stink for the memory issues. None of the options sound really encouraging.

Sometimes I just feel like my body is vibrating, is that from seizure activity? It's not that I am shaking, but more like vibrating on my insides. Sometimes my head is jackhammering though. It's all so weird!!

 

[nicholas:)]

Hi! I have nocturnal seizures and I experience what you do plus other things. I had 109 seizures a month at one point, medication took me down to 5 a month. If it's not a problem for you, explain this to you GP or neurologist. I'm happy with my medication - drowsy at times but I'm coping

 

[Nakamova]

Nakamova, did you find that you gained weight with Lamotrigine?

I did at first, although that's mostly due to the fact that I lost weight on the med I was on before (Zonisamide). So I regained the lost poundage, and then maybe added 5 pounds more. Still trying to shake those off. I found that with Lamictal I crave salty foods for some reason.

 

[RunningGirl85]

No I was unmedicated for at least two years when I started getting more frequent partial seizures until I had a third (second technically since I had two in one day when I had my first TC- also not sure how long I may have been having partial seizures before a TC manifested itself ) seizure with convulsions. Except for the past few days my partial seizures have been less intense and seemed to be decreasing in frequency since I started on meds. And who knows- I could be having more tonic-clonic seizures if I wasn't taking anything. It seemed my body was progressing that way with the increasing number of partials prior to medication.

Nakamova, thanks for the insight on the lamatrogine. I only started it a few weeks ago but I've noticed I've had way more cravings the past few weeks... which I guess I had before I was on any medication (love my food! ) and keppra and/or celexa kinda took away my appetite. It's probably better this way as I ramp up my running for marathon training ....

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[RunningGirl85]

Oops forgot to mention I also don't drive (and even if I COULD I wouldn't if I wasn't feeling right). I do ride my bicycle! Lol, but not if I'm feeling odd (dizziness/auras of any type). Thank goodness I get a lot of warning with my seizures. Though I've only had a few TCS, I now know I could have another so I'm extra careful.

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[RobinN]

For what it is worth, good nutrition does not just mean low carb intake.

 

[Levihope]

Thanks, Robin, I appreciate that.

 

[antecee]

Levihope,

I think a lot of us (most of us) use this forum to let off steam about our medications, but we really do need them. I started with partial seizures (though I didn't know that's what they were at the time) that progressed to nocturnal tonic-clonic. After a few go-rounds with some bad medications, I stopped all together (I convinced myself that my boyfriend was imagining my nocturnal seizures) and on top of the return of my tonic-clonic seizures, my partials came back with a vengeance.

I know it's frightening. I fight my doctor constantly over adjunct medications just because I am so afraid of the side-effects. But the most important thing to remember in all of this is that each medication affects each of us differently. What works for me may not work for you, and vice-versa.

It's kind of a cost/benefit thing. Lamotrigine causes insomnia for me, but it also the only medication that I've tried that does not interfere with my concentration (for the most part). In other words, the "cost" of the lamotrigine (insomnia) is worth the "benefit" (mental alertness).

Best of luck to you. It's great that you have found this website so soon into the game (it took me twenty-four years to find it). It is an invaluable source of information and support.

 

[elyblue]

Hi, I suffer from catamenial epilepsy which only started about three years ago.I am menapausal, it has took all that time for a nuerologist to diagnose my condition. I HAVE TRIED medication all to no avail, and am now trying natural progesterone cream. Iam on my second month but am unsure about the doseage because i dont have periods i havnt had a break yet. Also my problem is when i experience the seizures, which generally start during the night and carry on throughout the day any where between 8-15 in 24hours, is the blues after the seizures have finished. Is this common and can any body give me some indication as to whether these horrible down feelings get better as the menapause progresses or is it just seizure related.