How long did it take to get the meds right?

[mommieinmi]

I finally saw the neurologist. My daughter had a really bad seizure on Friday that scared the heck out of me, mostly because I didn't know what to do. After that, they got us into the neurologist. We went yesterday.

They explained a lot to me. They believe she has generalized epilepsy based on her EEG results and what I've described. I think she has been having a lot more seizures than I realized. I think she is having tonic-clonic seizures (that's what I witnessed on Friday), absence seizures, and myoclonic seizures.

She has been doing weird stuff that I didn't realize were seizures like zoning out. I didn't realize these were seizures because they happen so quickly but now I think that's what's going on.

They upped her Keppra prescription yesterday and gave me a prescription for diastat. I am still waiting for the pharmacy to fill that but am so glad to have that and the info on what to do if we need it.

But, my question is, how long did it take for your child's seizures to get under control. I think I am concerned that if the Keppra didn't stop the last seizure that it may not stop the next one either. I will feel better once we get her meds right.

Did you have to try different meds or did the first one work? Do you think the increased dosage will help?

I know you aren't doctors and can't tell me for sure of anything but I was hoping you could share your experience.

 

[Loopy Lou]

Well I've been on four different meds now and still trying to find one that works. Sometimes it can be a long process as there's so many meds and everyone tolerates them differently. I'm at the point now where I'm on Keppra and just trying to find another med that will go alongside it.

 

[Nakamova]

I started out on Dilantin, which did control my seizures. But my neuro was worried about the potential for long-term side effects (like gum overgrowth and osteoporosis), so I transitioned off Dilantin and onto Zonisamide. Zonisamide controlled my seizures at first but it also gave me low blood sugar, which eventually triggered a big seizure. So it was off of Zonisamide and onto Lamictal, where I am now...

 

[Aicila]

I have only been on 2 meds for siezures, but I have been on about 6 different combinations of those 2 medications over the past year and a half. The two meds are Topamax and Vimpat. Topamax has been an up and down dosage rollercoaster and Vimpat has been a steady climb. I hope I am good where I'm at and won't have to make any changes any time soon.

 

[ajssoscia]

My daughter was diagnosed Sept 2010 with complex partials. She was put on trileptal and was seizure free up until this past August. Her Neuro increased the trileptal due to the seizures starting up again. She was having single seizures here and there but he said there should be none. He increased the trileptal to 600 mg twice daily, but she started having double vision and continued to have breakthrough seizures. Keppra was added and trileptal was weaned. Her single seizures progressed to clusters. He then added topamax and started to ween off the keppra. She is now on a relatively high dose of topamax (175 twice a day). She has been seizure free for 12 days. Here I sit while she is at school waiting for the dreaded phone call. It's all I think about. I hate this. I feel like her whole life is ruined. When I hand her her 5 pills each morning and night I feel sick. I can't imagine how she must feel. This is all just so awful.

 

[Belinda1961]

Her life isn't ruined just because she has epilepsy. She could be having uncontrolled seizures.

I took 3 different meds in High school and they didn't control me. So she's lucky.

I have temporal lobe epilepsy and there weren't many meds when I was growing up.

Your doc will try what he thinks is best.If he thinks dosage needs be increased he will increase it.

Belinda

 

[tinathesingergirl]

how long to get the meds right.

well as I understand it... for some people it can take some time to get adjusted to the right medications. I have been on Keppra (the genereic form) for about 3 years they have upped the dose about 4 times now, last year they put me on an addtional medication topamax (generic) becasue I went into status for the first time. that has since been upped 2 times the fist time they upped it I was hospitized for 4 days becasue 5 TC's in 1 day they don't know why. Everything came back clean, MRI, EEG, CT. Blood Work. So frustrating. the second time they upped it was about 6 weeks ago they added another dose during the day of the topamax. I see the neuro again in a few weeks. We may be talking about a different medication becasue I don't think this current medication is working. I am also taking lisinopril as a precautionary for high blood pressure even though my BP is fine, and I am on Birth Control to prevent pregnancy since I am married (NuevaRing) it seemed the safest option for me. I also have an emergency rx for Diastat in case of Status situations that my husband can give me if neccesary.

Tina

 

[ajssoscia]

Her neurologist thought she was failing on the topamax two weeks ago be size she was on 150 mg twice a du. She had a cluster that started in school and continued after two .5 doses of clonazepam wafers 10 mins apart. I called 911 and she was taken to CHOP ER. By the time she was in the ambulance they stopped. Her neuro hppenned to be the er oncall. He came down and right in front of her said he wanted to admit her for 5 days for 24 hour eeg video monitoring to see if she was a candidate for surgery. He wasn't even if the topamax was failing because he hadn't checked her blood levels. I took her home and waited for blood results. They showed the levels were relatively low for her dose. The increase seems to have worked for now but I have this constant knot in my stomach just waiting for the next one. I know he thinks it will fail. Will this constant bombardment of catastrophic thoughts ever end? I can't stand it. Feel so alone.

 

[tinathesingergirl]

I feel your pain it can feel so frustrating i will pray they find the answers for a quick and correct treatment plan for her. I know i sure am frustrated and am planning to go to the epilepsy center in Tampa to seek some more answers my doctors here in Orlando just seem to want to add more drugs and dont seem to want run more tests i have been trying to get an extended video eeg during my period for a like 6 months now with my neuro maybe this time he will listen. The standard answer I always get is because my eegs have always come up clean there is no reason to.

 

[ajssoscia]

I have one reply for that....I HATE DOCTORS! It makes me sick to think my daughters life is in this one man's hands. She is just a number to him I'm sure. I hope you find a doctor who can help you. The good ones are far and few between.

 

[Sheripark]

Oh it's good to vent but try not to "hate" doctors. There are definetly some out there that were not a good fit for me but "we" are lucky compared to other cultures. It's sad and unfortunate that us out here are faced with seizures (out of our control). I guess I get frustrated when people hate on doctors when so many Americans think going to a doctor is their right yet they in turn dont take care of their body (obesity, alcoholism). Of course we didn't ask for epilepsy so these are the cards we are dealt. Sorry for my 2cents but hate is a strong word.

 

[Cint]

I've had epilepsy for over 30 years and it has been a battle of trial and error of 11 meds, brain surgery, two VNS surgeries before I finally got some control. Plus, seeing neurologist after neurologist, epileptologist(s), neuro-psychologist, neuro-psychiatrists, endocrinologist (for diabetes brought on by a drug), and the list goes on.....

:twocents: So I agree with Sheripark......"hate" is a strong word... I "hate" going to doctors but at the same time, if it weren't for some of the doctors and meds, I would NOT be alive today. And as Belinda stated, some of these treatments for seizures were not around when we were growing up...... but we suffered through and are still here!!!!!

 

[Belinda1961]

I've had epilepsy 48 years.

It's basically taken 47 years for me , for my seizures to get controlled.
My seizures been around since I was a child

I had brain surgery in 1982 and I got my first VNS in 2000 and of the three I had my seizures were decreased.

I've been sent to numerous specialist that did no good and I always ended up going back to my original neuro.
He stuck with me and he's the one who has finally seen me seizure free.
I have ask him why he never gave up on me.
Belinda

 

[Sheripark]

1859-1906:

Under the leadership of three English neurologists--John Hughlings Jackson, Russell Reynolds, and Sir William Richard Gowers--the modern medical era of epilepsy begins. In a study, Jackson defines a seizure as "an occasional, an excessive, and a disorderly discharge of nerve tissue on muscles." He also recognizes that seizures can alter consciousness, sensation, and behavior.

Before this it was said that people with "seizures" had the demon in them! We have come so far and no doubt will continue to learn more and improve the outcome for "US". This is all in the hands of "doctors". I had to think twice about debating the doctor issue but I can't sit back and let someone say in all caps that they hate doctors. One thing to remember, doctors have a "practice" and they treat symptoms. They are not magicians. To add..many physicians incure school debt in excess of what many Americans will make in a lifetime. There is a misconception that doctors make a ton of money. Not true if you think of it this way. Physicians work 60-80 hours a week (many) they have debt, private practice insurance is well over $60,000 a year. They make on average about $250,000.00 a year. Seams like a lot right? Not really when you think of our entertainment industry. Someone like Brad Pitt can work on a movie for 3months and make millions!! An CEO of a major company millions a year! Lawyers! Politicians (!!!!). All making well over what a physician makes without the liability of being sued and the "haters" that expect miracles. Also, because of the tax bracket the physicians (and those making this amount of money) pay the most taxes. Once you are in the "big bucks" like our entertainers they don't pay taxes like we do. So...let me get off my box. Give your physicians a break, if it is not a good fit, find another. There was this fed-ex worker that threw a tv over the gate of someone's porch, it was caught on film. That doesn't mean all fed-ex workers are like that. Ok I'm done

 

[Cint]

Once you are in the "big bucks" like our entertainers they don't pay taxes like we do. There was this fed-ex worker that threw a tv over the gate of someone's porch, it was caught on film. That doesn't mean all fed-ex workers are like that. Ok I'm done

Well........ some FedEx workers (pilots) can be a pain in the arse! :bigsmile: I was married to a FedEx pilot for 25 years, and he made good $$, but didn't do much to support his wife emotionally. And wasn't around much when I was going through the bad times of depression and seizures. My kids witnessed more TC's than he ever did. They witnessed me taken away by an ambulance because 911 was called several times when their dad was out of town. I pleaded with him to change his schedule, but NO.... he had to make $$ instead of take care of his family. Like I said, arrogant A**. But now that marriage is done and I'm much better.... so are the seizures.