My Story

[Heather]

About 6 1/2 yrs ago my old neurologist messed up my meds. I had never had problems with my seizures until then. But she messed them up and it got to the point where I was having seizures (losing consiousness) every two weeks. At that point she ended up dropping me as a patient, which was a blessing in disguise. My new neurologist had my meds straightened out within 5 months. I didn't drive for 2 yrs and 8 mths because of my old neurologist. I had never gone without driving before. Basically what happened, she put me on Zoloft, supposedly as an anticonvulsant, at least that's what she told me. Well Zoloft can cause seizures in people that don't have epilepsy and increase seizures in people that do have epilepsy. Most people that take Zoloft take 25-50mg. She eventually had me on 150mg. I couldn't concentrate at work. Short-term memory was gone. Word retrieval was gone. I couldn't think of words when I was trying to carry on a conversation. I was sleeping through my alarm clock. I was a walking zombie, besides the fact that my seizures were increasing drastically. Also she had me on double the limit of Lamictal. The limit, for me, is 400-500mg daily. She had me on 1000mg daily. I had to take it 5 times daily, just so I could walk straight and see straight. If I didn't take it 5 times daily and if I didn't space it out just right, I'd have double vision, feel like my head was spinning and could hardly stand up. If I had to get up to go anywhere, I'd have to practically crawl to where ever I was going. I would just lay on the bed, shut my eyes and wait for the side effects to wear off. I had to take all that Lamictal though. If I missed a dose, I'd have a seizure (complex partial and/or tonic clonic). She had me on other meds too, but those were the two that really screwed me up. At my worst, I was having COUNTLESS simple partial seizures daily, almost constantly and complex partial seizures and/or tonic clonic seizures every two weeks.

When my old neurologist dropped me as a patient, I weaned myself off of zoloft with no doctor/neurologist supervision. I had to do my own research on the internet and in books. I had to be my own doctor to find out that zoloft was increasing my seizures and making them worse. That's when I found out zoloft was increasing my seizures. If I hadn't done my own research, been my own doctor and weaned myself off of zoloft, I probably would have ended up in the hospital. When I got off of zoloft, I FINALLY went 1 mth without having a complex partial and/or tonic clonic and FINALLY made progress.

A few mths later I got a new neurologist. Basically I had to be a guinea pig for him to get my meds and seizures back under control. He did a lot of things, that before he did them, I knew I was going to have a seizure (lose conciousness). But I let him do it anyway. He didn't know what meds I was taking worked, which ones didn't work, which ones needed to be eliminated, etc. I was a new patient, he didn't know how I reacted to anything. He needed to see it firsthand. So I let him do what he needed to do.

One of the first things he asked me was does the lamictal work?'. I said yes. He said how do you know? I didn't know what to say, but I knew it worked. The dosage was so high, he wanted know how I knew it worked, which is understandable. The first thing he did was decrease my lamictal. I had a seizure almost immediately. I told my parents it would happen too. But that was ok. He needed to do it, so he could make the proper adjustments and he did. I've never felt like such a lab experiment in all my life. He temporarily raise my lamictal back up. I was also taking zonegran. He also maxed out the zonegran (600mg) daily, added keppra, maxed out the keppra (3000mg daily). Then he lowered the lamictal to 400mg.

Also some other things that happened, my old neurologist and her now ex-husband (who is a neurologist) shared an office. From what I heard from more than one person, and some of it was doctors, was her husband was messing around with the nurses and she almost had a nervous breakdown (at my expense, and I'm sure a lot of other patients).

When I got my medical records, all the phone calls I made about the seizures I had and the medication changes that were made, were never recorded. There was almost nothing in my medical records. My medical records were about 2-3 pages and would fit in a small envelope. So anytime you start having bad side effects or you need to change your meds, always make a doctors appointment. Otherwise you never know whether your doctor will actually get the message. My neurologist may have never have even gotten any of the phonecalls I made. I think my nurses may have actually been changing my meds, not my neurologist.

I also found out my neurologist never thought I was having seizures, but she didn't tell me that. In my medical records, it said anxiety attacks. I guess that's why she had me on zoloft. She lied about that too. She told me, she put me on zoloft as an anti-epileptic drug, not for anxiety attacks.

My current neurologist had me keep a calendar until my complex partial seizures and tonic clonic seizures were controlled. I wrote down the dates of all my med changes and all my seizures (simple partial seizures, complex partial seizures and tonic clonic seizures). I couldn't even count my simple partial seizures when I first started going to my current neurologist because it was almost constant, day and night. I wrote an approx number of simple partial seizures, but really didn't know for sure. My complex partial seizures, tonic clonic seizures and med changes I was able to document accurately though. Every time I had a complex partial or tonic clonic, I made a neurologist appt. When I first started going to him, I had appointments prob every week or two. He took and active interest. And everything's documented because he had me keep monthly calendars. I made copies of the calendars too. So I don't have to wonder if everything was documented.

I learned a lot from all this. So it wasn't all bad. This will never happen again because I did learn a lot. All of this could have been prevented, if I had gone with my gut feeling and spoken up. I learned how to be alot more observant. I learned what to ask, what not to ask, what they should ask, what they shouldn’t ask, what I should do, what I shouldn’t do, what they should do, what they shouldn’t do, what to look for, what not to look for, what they should look for, what they shouldn’t look for, what I should say, what I shouldn’t say, what they should say, what they shouldn’t say.

I learned not to go along with them just because they are the doctor. I thought, why should I question anything, she’s the doctor, she’s the one who’s been in practice for over thirty yrs. She was also recommended by a friend of my mom’s and all I had ever heard was good things about her. So, who am I to question her? THAT WAS A MISTAKE!! ALWAYS question your doctor. If your gut tells you something is wrong, most likely it is, I don’t care how many credentials the doctor has. Nobody knows your body better than you, not your doctor, not your family, not your friends, nobody. If you don’t believe the advice your doctor, family, friends, etc, is good then it probably isn’t. You’re the one that knows how your body feels and is reacting to things, not everyone else.

It only took my current neurologist 5 mths to get my meds adjusted and get my seizures mostly controlled. I knew my seizures would be back under control, because they always had been. It wasn't a matter of "if", it was "when". I just had to be patient. Each time my neurologist adjusted my meds, I'd go a little bit longer without having a seizure (losing conciousness), until eventually I stopped having seizures (losing conciousness). I still have simple partial seizures daily. But I've always had simple partial seizures daily. I doubt that will ever change. My simple partial seizures are less frequent, shorter and less intense though. So my simple partial seizures are better controlled too. My seizure control is still getting better, even thought I've been taking keppra for 6 yrs. Keppra has been a wonder drug for me.

Once my complex partial seizures and tonic clonic seizures got under control, I also realized I was having nocturnals. I used to be sore all the time, have sores in my mouth and on my tongue, be so tired I'd sleep through my alarm clock. My bed was wet alot. At the time, I thought that it was just drool, not wetting the bed, while having a nocturnal. When all of that went away, I realized I was having nocturnals.


That's my story. Sorry it's so long. Hope it makes sense.

Heather

[Meetz1064]

Heather, what a story.

I can only ASSUME that you are going to take this former doctor to court for malpractice???

Welcome to CWE, by the way. I'm sure you're going to be able to help a lot of people here with what you've learned. Sit down, kick your feet up, and Buckeye or Eric will be around with the coffee soon.......trust me, theirs is far better than mine......

Take care,

Meetz

[Heather]

She's no longer in practice. She quit, I think not long after she dropped me as a patient. I'm just glad it's overwith. My current neurologist is great. He actually listens, takes an active interest and doesn't have an ego trip, if I disagree with him.

Heather

[Meetz1064]

find a way to go after her through the legal system, if at all possible........

[Heather]

I'm not sure it is possible because I don't know how much of it I could prove. She's not in Tulsa anymore either. That's ok though. I'm just glad it's overwith, I have seizure control and a neurologist that takes an active interest.

[skillefer]

Hi Heather! Welcome to CWE. Sounds like you've been on one wild ride. It's great to have a good neurologist though, isn't it?