Choosing Not to Be Medicated

[Levihope]

Antecee,

Thanks for your advice. I do appreciate the input that I have received, and I agree that the seizures will probably get worse without medicating. Mine are already becoming more frequent, blah!

Everyone's seizures all seem to manifest differently. Mine seem to be brought on when I move my head after I have been asleep. Hopefully, I can do some sleuthing to figure out what is going on. I have a lot of muscle twitches, and I notice that my skin is turning brown, and then these partials . . . surely there is a single reason for all of the funkiness!!

Can you tell me, on the lamictal, does that seem to cause weight gain? Moodiness? Do you know anything about zonegran? I used to be about 40 lbs heavier, and so the prospect of packing on the pounds from meds is a little upsetting to me as well.

Thank you so much!

 

[Levihope]

Elyblue, Interesting!! Mine definitely started during the hotflashes of menopause! The only problem is that I am extremely sensitive to progesterone. It makes me very depressed and OCD. I suffered from depression until I had my hysterectomy and had my progesterone making equipment removed! I kept my ovaries, so I was still producing estrogen until recently. I know I have zero progesterone in my system, and I so plan to keep it that way!! I know, bad attitude, but it really was bad the depression that I went through. I tried a progesterone cream recently (unbeknownst to me when I used it). My ND gave it to me for the estrogen benefit. Within 3 hours of using it I was very OCD and depressed. I went and read the label, and sure enough, it contained progesterone. My adrenal glands don't break down the progesterone is what my ND told me, and so I really am not a candidate for that kind of treatment. As soon as the cream wore off, I was back to normal. It's funny how different meds affect each of us.

 

[antecee]

Levihope,

I did NOT gain weight on Lamictal; if fact, I lost a few pounds when I first started six years ago. I've gained weight since, but that's for two reasons: menopause and boredom.

I was going through menopause when my doctor switched me from Phenobarbital to Lamictal. I've had fewer seizures since then, but I'm not sure if it's the meds or if it's because I'm post-menopausal.

Sadly, epilepsy and depression seem to go hand-in-hand. My depression comes and goes. I know I need to start exercising on a regular basis again, as that really does help ( I think it helps prevent seizures as well).

 

[Levihope]

Antecee, that is good to know that you are doing so well on the medication. Can I ask if you think the depression is caused by the lamictal? It looks like all medications have that as a potential side effect.

How did your partials manifest themselves in the beginning? I'm sorry, I know, so many questions . . . I can't help myself. It's all just so scary.

 

[antecee]

Levihope,

Believe me, I know how scary this is. I was terrified when it started happening to me, even though I didn't even know it was epilepsy at the time. I was in my twenties when I started to have what I called "spells". They were, and still are, very hard to describe. They started with this "woosh" feeling, like I had just been dropped down an elevator shaft at incredible velocity. At the same time I felt like I had lost touch with reality, and I felt somewhat woozy and lightheaded. I couldn't talk, and I understood nothing that was said to me. They lasted probably less than a minute, but while they were happening it felt like an eternity.

I don't think my depression is caused by the Lamictal. I was diagnosed several years ago with Seasonal Affective Disorder (SAD), which is kinda funny as I live in San Francisco where we have no seasons in the true sense. However, I am horribly affected by damp, dismal, overcast days. I live in what are called the Outerlands of the city, four blocks from the ocean, so the weather is almost always damp and dismal. When I do get a good dose of sunshine, I feel one hundred percent better. (I work downtown, and it has been sunny there for the last few days.)

For whatever reason, epilepsy and depression seem to go hand in hand. I guess it's because the threat of a seizure is always lurking the in the background.

Have you been to any other doctors beside the one who told you that's your "jack-hammering" is caused by epilepsy? If not, you should definitely get a second, third and even fourth opinion. Also, think about talking to alternative practitioners. If you know of any holistic healing centers (many are staffed by actual MDs who take a holistic approach to medicine), I would check with them as well. It would be horrible if you were put on AEDs if your jerking is caused by nothing more than a pinched nerve in your neck or something.

Most importantly, remember there is no such thing as "too many questions". You will get a lot of great answers on this website (from those with a lot more experience and education than me). And you can't ask your doctor "too many questions". If they don't provide answers, move on to the next! And keep in touch.

 

[tinaw]

Hi there,

I have chosen to bypass the meds because of serious side effects. However I do have a adhoc one, that only gives me sleepiness. THe others just scared me with the side effects and I thought the med was worse that the seizure. The current med, clonazepam, I take adhoc when I feel it coming. I have complex partials from brain injury. This all works. SHould I get a change though or increase, I will be seeing Dr again to try something else. I am dangerous in the seizures.

Thanks

 

[RobinN]

My daughter also decided that the side effects were worse than the seizures. Once we began to address the cause of her seizures, they have been eliminated over time. She has not had one in over 15 months.