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Posted by Pam on August 05, 2000 at 21:52:08:

In Reply to: Re: I have it all - who can help me, I'm desperate posted by Anna on July 24, 2000 at 17:56:33:

: : I had a grand mal on 2/18/00 - lasted about 3 min. Since then the doctor's have increased my medication from my standard 400ml of dilantin to 500ml. As of then I kept having seizures every single night in my sleep and they were all only on my right side. I went back to the neuro and he added nuerontin. It did nothing for me at all. I mean I am having seizures EVERY NIGHT all within 20 minutes of me falling asleep. The neuro deleted nuerontin and added lamictal instead. This is of no help either. I had a grand mal over the past 3 months every time my menstruation begins and 2 others, one when my coworker tried to commit suicide and sent me his suicide note and another during a traumatic family moment, that one was the last one and it was on 5/22/00. That night I had 3 grand mals, bit my tongue severly and was totally out of it. I went to the pcp and they did nothing but advise me to take 500ml of dilantin, 400ml of lamictal and to all 900ml of nuerontin again.
: : I am done, that's it, I'm tired, I'm depressed and I don't know what is wrong. The pcp's have given me short term disability from work only as of last week. have had an EEG which showed no abnormalities and an MRI which showed no abnormalities.
: : Who can help me? I am only 28 years old and am dying to have a baby.
: : As of last week, I basically said forget it and have made up my own dosages. I take 200 ml of dilantin in the a.m. along w/ 300ml of nuerontin. At night I take 200ml of dilantin and 300ml of nuerontin and 200ml of lamictal. As of then I had had only one seizure in my sleep, as usual on my right side and very minor.
: : I have taken dilantin as of the age of 21. I am tired,my gums bleed excessively, they are swollen, I have gained about 50 - 60 lbs and the dentist refuses to see me until my seizures are under control. I don't know which medicine causes me which side effects. I think it is the lamictal which doesn't let me sleep very well and the neurontin which gives me panic attacks. Yes, my hands are always cold as well as my feet, I do have double vision, I do feel sleeepy all the time and I have slight shaking of my hands always. HELP ME< HELP ME , PLEASE< SOMEONE!!!!!!!!

: Dear Lisa,

: All aboard!!! I guess we've both ridden on the same train. Dominated by non compassionate, judgemental, generally crappy people and doctors. First, dump that lump of a dentist. You can get work done as long as you're not allergic to Novacane. Make sure and discuss your situation with the dentist first and then a pearly smile will greet you in the mirror every morning. Second, find another neurologist. If your doctor is not a neurologist get a referral. Find one you like and can work with. It took me four different trys to find mine. It changed my life from wanting to kill myself to wanting to live happily. Go shopping for a neurologist. Ask his staff if they'd go see him. If they are hesitant at all, skip him altogether. Be honest when you go in. Place your order. Tell the Dr "I want to have a baby. What is the best way to do it given my seizure situation?" If he is compassionate, the Dr, may recommend stabilizing first, but then should be able to guide you through a healthy pregnancy with the best seizure control possible with the least medication risk to your baby. My neurologist got me a healthy baby boy. Third, talk to an endocronologist and have your hormones and thyroid levels checked at the very least. It may relate to the stress reaction, weight gain, seizure pattern change and even the sleep disturbances. You don't ask you won't know. So ask!

: You sound like I did about 3 years ago. I took control of my meds like you are and found a smart, caring neurologist who would explain everything and work with me instead of handing me a prescription and yelling "Next." You deserve the best doctor you can get. You will get through this and with a little help, I know that you can get your life back from the seizures and maybe have a family down the road. Hang in there and give that loser doctor and dentist the boot and move on. There is help and you deserve it. Please post soon and let me know how everything's shaping up. A

Anna, you sound like what I have been going through for the past 20 years. I started having nocturnal seizures when I hit puberty. I didn't know that they were seizures then. To me, they were just strange feelings. Then, I had my first grand mal when I was 21. Nothing on the MRIs and nothing on the EEGs. It kept getting worse and worse and worse. I started having anxiety attacks every month and felt like I was going out of my mind. A friend finally noticed that I had my seizures about the same time of the month. Hormones!! Then, I could not find a doctor to listen to me. I finally found a woman who was more willing to work with me. I still had to take an aggressive approach, do some research, and start making suggestions of my own.
I took Dilantin for 7 years and it made me feel like I was walking in a foggy world. I gained 50 pounds myself. I was switched to Tegretol and felt much better. I take the highest dosage before I go to bed and make sure that I take it at least one hour before I go to bed so it can get into my system. You want the highest dosage when you are asleep. Have never had another grand mal, but still kept having complex partials in my sleep. I'm on Lamictal right now, but it has never helped any more. I still kept having partials. I asked to try progesterone(known to help seizures related to the menstrual cycle), but it made me sick and seizures increased like crazy. My doctor switched me to birth control pills every day, not just 21 days like normal and I have gone for 2 months with only 1 seizure and no anxiety attacks.
Anna, one thing that is really important and that I let go for so long is your general health. Also, I started trying to adjust my life as if I have PMS a few months ago. I quit the Diet Pepsi thing that has aspartame that lowers your seizure threshold. I watch my salt intake and make sure that I get enough calcium. Calcium's been shown to help PMS. Get enough sleep!! I found that when I don't get enough sleep the night before , I tend to have a seizure a short time after I go to sleep. I have started exercising. Something is going right. I'm 33 now and I've made it through 2 months with only 1 seizure. These changes are hard as anything to make in your life, but they could help and can help you deal with stress. I sat around and waited for all these years for that "magic" drug to totally make my life normal again, but it never came. I decided to take control in January and I feel so much better!

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