Instantaneous magical miracle! (Or not)

[lindsayschu2]

Many of you have tried many different meds over the years, so my question to you is: Should a new med be like an instantaneous magical fix (if it is the right med), or is it common for it to take several weeks for activity to slow down, become less frequent, and then ultimately (and hopefully) stop? My new med (Topamax)has helped a lot over the past 3 weeks since I've been on full dose for all three kinds of seizures I was having, and events are rare now. But I did have a CP in my sleep 6 days ago. Clearly, I'm afraid of concluding I will have an uncontrolled problem and am interested in knowing if a slower ramp down is still possible with what may ultimately become a successful med.

 

[arnie]

I certainly don't have good news from my own experience. I've been on meds for over 30 years. Two of them, Dilantin and Lamictal, had few enough side effects (in the short term) and controlled my TC seizures but didn't do a good job at all on my partials. I still have hundreds every year. Zonegran, Keppra and Trileptal had bad side-effects almost from the beginning, and after 4 or 5 months I had to get off of them. During that time they didn't help at all with my seizures, either. I have refractory (very poorly controlled) partial seizures. I also learned recently that side effects can start appearing after years and years on an aed. That was a discouraging discovery! I have VNS placement coming up in 1 week. Fingers crossed! (See some of my other threads, especially "my vns experience" for more info on my VNS plans. Here's hoping meds give you good control!

(On a happier note, my daughter, who is 33, also has epilepsy and has 100% seizure control on a minimal dose of trileptal!)

 

[chmmr]

Lindsay, my daughters dr's always tell us they like to see her on a steady dose (not increasing or decreasing) her meds for at least 2 weeks before they will asess how she is doing on a drug (they always refer to it as a "steady state" which they say is the amount of time it takes the medication to get to a steady level in the bloodstream ).
The question would be why you had the complex partial, we all know meds won't always stop all seizures. Perhaps you were ill, over tired etc? If you can identify a trigger for that particular episode, and/or it doesn't occur again i would be less concerned than if you start having seizures on a more regular basis again or notice a regular increase in episodes.

Not sure if that helps?

 

[lindsayschu2]

Yes it REALLY helps--I was within my first two weeks on 50 mg, and I was coming down with a cold. I know I'm not in the clear but I'm still much relieved. Thank you!!

 

[valeriedl]

It may take a few weeks to see if the med is working for you.

How often were you having seizures before you started taking it? How often were you having each type of seizure and has it stopped one type or slowed how often you have that type?

Depending on what it is doing for you the dosage may need to be increased or if it isn't helping at all then it may not be working.

You said you were sick, that could have possibly brought on a seizure. Were you taking any type of medicine for it? There have been times that I've taken different meds, over the counter and even ones prescribed by a dr (not the neuro) for different problems which have brought on seizures for me. Steroids, which I've taken for a few different things, cause me to have seizures.

With the meds I'm on now, and I have a VNS, my seizures have decreased greatly. I don't think I'm ever going to be seizure free but going from 5 a week to 5 a month is really good. I very rarely have TCs but I might have one once a year. This doesn't mean my meds aren't working. I guess you could just say it was time for me to have that type of seizure?

 

[lindsayschu2]

Yeah I've decided I'm just not going to be fully seizure free until I start sleeping regularly (just diagnosed with sleep apnea). I'm only having maybe one small simple partial a week, and a mild complex partial once a month or so, and hoping that will go down now that I'm working on the sleep issue. I've come a long way from the constant myclonics and other types i was having daily just a couple of months ago so I'm feeling blessed for that progress and hoping it improves rather than going the other way

 

[Nakamova]

Yeah I've decided I'm just not going to be fully seizure free until I start sleeping regularly (just diagnosed with sleep apnea).

Sleep apnea can definitely play a role in seizures. For those interested in the connection, check out the CWE threads listed in the link below:
http://www.coping-with-epilepsy.com/forums/tags/sleep apnea.html

 

[Belinda5000]

actually it depends on the person on weather the med is going to work or not.
There isn't an instantaneous fix, it takes time if it is even the right med for you that will work.Topamax is one med that actually works for me some with Tegretol.If your coming off a med never do it cold turkey.

 

[N Sperlo]

Different meds work different for everyone.

When I started Vimpat it was an instant fix. After a few months, problems started again. The doctor increased the dosage, and once again, it was an immediate fix.