It's been a long time / balance between meds/side effects/seizures

[Bluesbrkr]

Hello everyone!

It has been a long time since I've been here in the forum... I've had major life changes and things have been crazy... maybe I should have come for support, but it was hard to deal with anything for a long time. I was layed off from my job and was unemployed for about 5 months. Stress, of course, caused all sorts of probs with my seizures... Had to pay the RIDICULOUS amount of money for Cobra just so I could afford my meds and keep my family covered. Fortunately, I got back to work about a month and a half ago on a temporary contract job, and have just been offered a really good full time position, so things are going much better.

All that being said... on to my question (sorry for rambling there).

I have been juggling quite a bit with my meds, trying to find the right balance. Too much meds.. too many side effects that I don't want to live with. Too little.. obvious results.

side effects have included double vision (lately)... dizziness, dry mouth, numb tongue (weird), tiredness, memory issues, weight gain, and of course, lovely libido and other "romantic" issues. Many of these cause a lot of stress, not just on myself, but on my family, my wife, and has been problematic with my job.

I'm trying a lower dosage, that has fewer side effects, but I find that I'm having simple partials throughout the day that build in frequency and intensity as the day goes on, until the evening, when I take my evening dose.

My question is how do you balance your meds versus everything else. Do you just live with the side effects to completely deal with your epilepsy? Do you change meds often (try new ones, different combinations) to deal or lower dosages to try to balance an acceptable level of occurrences to offset the side effects.

I hope I'm making sense here. I am trying to keep the lower dosage, but I'm finding my simple partials are getting more intense as I go and want to get some ideas as to the best way to proceed.

thanks!!

 

[Nakamova]

Congrats on the job and job prospects, that should be a bigh help all around, right?

As for "coping with meds", I think everyone proceeds a bit differently given their particular circumstances (factors related to driving, finances, family, overall health, etc.). The Holy Grail is a med (or other treatment) with 100% seizure control and zero side effects. But the quest for this goal can get a little tiring (to say the least). As a result, I've become less willing to switch meds (and more tolerant of side effects). I've lowered my expectations.

That said, I always want to know how low I can go on a given med and still have seizure control, so I've tapered down (slowly and in small increments) knowing the risks involved, but deeming the potential rewards to be worth it.

In your case, it sounds like the extended release version of your med might help (if you aren't already on it), or taking the med more often during the day but in smaller increments. Have you discussed the options with your neuro?

 

[Bluesbrkr]

thanks for the reply... I haven't been able to see my neurologist in quite a while due to my unemployment and insurance issues. As soon as I start this new job though, I'm making an appointment and heading right in.

I'm on Lamictal and Trileptal, and was also given Topomax to try to help with breakthrough seizures. The Topomax started causing the double vision and more dizziness, so I backed off of that. still working with the three to try to get the magic mix, lol. just trying to decide how much side effect vs how much acceptable seizure activity. They are simple partials, but having anywhere from 5 to 10 and sometimes more daily kinda sucks.