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Old 03-13-2005, 09:24 AM   #1
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Tired of all this

Hello, I have posted here before. I guess I am just feeling discouraged. I have been going to all kinds of doctors for the last year and half and have tried different meds through this time. Nothing works. I have Partial Complex Epilepsy (says two neuros) and for the last three days I have been having them throughout the day. You think I would be used to them by know but I am not. It is just so frustrating. My primary doctor is the only one who will listen to me. I had to talk my new Neuro into doing another EEG and the place he said had 60 patients ahead of me and children have first priority, so I could get bumped back further. (I am NOT complaining about children first as I am frightened by all this and I am sure they must be terrified) I found a place that had only a two week wait, so I go on the 24th. I also have been having heart palpitaions lately and when I went to see my primary the whole time I was in the waiting room my heart was doing its weird thing. When I was being examined do you think it would do it? Nope. Although both people said they heard a skip, but I told them that the ones I am talking about I can feel. I swear my car does the same thing, it will make sounds and when a mechanic is listening it will hum perfectly. LOL I keep praying that this over night study will show something so that they can decide what meds I should be taking. But I am so scared that I will be disappointed once again as my other 24-hour didn't show anything. Of course back then I wasn't having them practically everyday.
Sorry this is so long but I just needed to cry out for help hopefully someone out there can understand and give me some insight on what is going on. It seems like since I have been taking the meds everything is getting worse. To top it all off I have pain from neck surgery 10 years ago ( which limits my activities) and have suffered from major depression most my life and gaining 40 lbs in the last year has sent my selfesteem plummitting. Thanks for reading this. Any advice?
Laura

 
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Old 03-13-2005, 08:26 PM   #2
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cardshark HB Usercardshark HB User
Re: Tired of all this

I have an idea how you feel. I have been having seizures since I was 15. They started out as absence seizures and then turned into complex partial seizures and I have now had one grand mal seizure. I have been on several different medications including: Lamictal, Keppra, trileptal, and Zonegran. The keppra completely shut my body down and I had no physical strength, my whole body hurt, I had trouble breathing, and all I did was sleep; my seizure activity also greatly increased in the month I was on it. The trileptal also gave me severe side effects and I had to go off of it as well. My neurologist has said that since I have been on so many different medications and my seizures have not been controlled that the odds of medication controlling them is very slim. I have also gone from having seizures about once every other month to having them daily. I am scheduled for a Video EEG starting on Thursday to find out if I qualify for surgery.
I've never heard of having a waiting list to have an EEG done. I've gone to the doctors one day and had an EEG later that day or the next day numerous times.
I have been to numerous doctors throughout my life for various health problems and know exactly what it's like to have doctors that won't listen to you and act like your making things up and you don't know anything. I've learned that they just don't like it when a patient actually knows about what's going on. There have been numerous times I've gone to the doctor's office told them the syptoms I was having, what it was, what medication I'd been on in the past for it, and to just give it to me and let me go home; instead, they waste thousands of dollars running all kinds of test only to find out that I was right to begin with.
Do the doctors have any idea what is causing your seizures?
I've gotta go, hope I gave you some info. you were looking for

 
Old 03-14-2005, 10:34 AM   #3
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tiresome HB User
Re: Tired of all this

Thank you for the reply Cardshark, and yes you did help. They don't know what is causing the seizures, the MRI I had did not show any damage. I haven't been able to talk neuros into doing any real testing until now. All this time and they wait until I don't have insurance to finally take a real look at what is going on. The EEG I mentioned is a Sleep Study done on video is why the wait is so long.
Do you think the meds only make your seizures worse? I do, it seems like they have gotten way out of control since I have been taking anti-seizure meds. In the beginning I rarely had them and since I have started the meds I have had them almost daily with some being very disturbing. Did you have any vision problems with yours? They told me my vision problems weren't from the trileptal and since I still have it sometimes and I quit the trileptal it is seizure related. I have trouble with flourescent lighting and when I get extremely worn out or overexerted it gets bad too. Thany you.
Laura

 
Old 03-14-2005, 09:02 PM   #4
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Re: Tired of all this

I brought up the topic of my seizures getting worse since I have been on the medications than what they were without the medications numerous times. Everyone told me that although it seems that way, you don't know how bad they would be now if you weren't on the medication. I go back with my doctors and family a long way on that subject. Three days after I started the most recent medication, zonegran, I had the worst seizure I've ever had. You can't tell me that when I went from having seizures in which I basically day dreamed to having a seizure in which my family had to call the squad three days after starting a new medication that it wasn't related to the medicatio

No, I havent' had any problems with vision.
I've gotta go, and I hope I'm helping you as much as you are me
cardshark

 
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