Good morning all. You can all call me musicnut. I am having seizures after not having them for 15 or more years. These seizures are becoming more violent, they say they are not epileptic seizures but don't really off any new information. I was hospitalized for four days with having to be transfered to a better hospital who could monitor me better. I was released on June 2. My follow up with my nuerologist was scheduled for Friday, June 21st, now they just calle me to reschedule to July 8th. REALLY???? I am having so many issues. My primary care doctor cant handle this problem. I am growing more and more frustrated. Sunday, I came in from outside, thank God my partner was home as I fell head first into the floor having a seizure. My partner was under the house working in the crawl space and heard me and got to me as soon as possible and she kept me from slamming my head even further. The only thing the Dr has done is increased my Kepra once. I am still having seizures, most of which do come in my sleep. I know the frustration of getting used to the medicine is a normal problem, but these doctors around here just dont seem to give two cents!!!! Any sugesstions??? Thank you so much. Whoever came up with this idea....God bless you!!!
Frustrated in Delaware
- Thread starter musicnut
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Hey musicnut, welcome to CWE!
Why do they say the seizures are non-epileptic? If it's because of a negative EEG, then that's not enough evidence to rule out that they are due to epilepsy -- especially given your past seizure history. I agree, the doctors can be super-frustrating -- don't be afraid to "be squeaky" about getting a faster appointment. Get on the cancellation list, and ask if there's another neuro available to see you.
Any clues as to why your seizures may have returned? Any changes in your metabolism, diet or routine? Any unusual stresses? Any other health issues?
Best,
Nakamova
Why do they say the seizures are non-epileptic? If it's because of a negative EEG, then that's not enough evidence to rule out that they are due to epilepsy -- especially given your past seizure history. I agree, the doctors can be super-frustrating -- don't be afraid to "be squeaky" about getting a faster appointment. Get on the cancellation list, and ask if there's another neuro available to see you.
Any clues as to why your seizures may have returned? Any changes in your metabolism, diet or routine? Any unusual stresses? Any other health issues?
Best,
Nakamova
Yes the EEG was normal so they told me it was non epileptic. Their is another Doctor in the practice that I could see but I have numerous friends that it was a horrific time for them and I am not just talking one or two people, Im talking dozens. Flashing lights bother me, it seems as when an approching electrical storm gets close I get very antsy. When I am beyond tired I have the most problems. Stress, there is tons of stress in my life. A 17 year old daughter who has no respect for her mother and thinks she knows everything. The so called Father in her life doesn't do anything to help, thank God we are divorced, she just by the skin of her teeth passed 10th grade, she has to repeat Eglish and French II. Then to top it all off my parents are moving all the way to Florida to be near my little brother. They leave Saturday and it seems the anxiety is increasing more and more. I keep myself busy with baking and cooking and it helps. The increase of the Kepra has made me so tired and so dizzy. To ride in a car is very sickening at times. This last fall I had I know I should have gotten my head checked out but the ER close to me just sucks and there really isn't much more they could do than what I did here at home. Im just angry. Angry that this has taken so many freedoms away from me. I can't drive, I can't walk arouns outside unattended, I can't shower or bathe unattended and I just feel like it is putting so much pressure on my partner. She says she is ok and she is here for no matter what and I believe that but it's just not fair for her to be the one to work and then have to put up with my issues. The only other medical problems I have is migraine headaches since I was 8. I have always been a motion sensitive child and light sensitive too. All my EEG's have always come back negative. I guess thats why they insisted on the pshic consult. To get an appointment with the Dr's I saw at the good hospital up north is probably gonna take at least a month....do I wait or do I not wait that is the question??? Thank you for your insight.
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Sounds like you've got stress up the wazoo! 
If you can, keep focusing on being proactive in eliminating stressors. If that means baking and cooking 24 hours a day, go for it. 
See if you can add in other ways to distract yourself and relax (meditation, puppies, gardening, therapy, music, yoga, walks). And keeping a seizure diary can help too. Some good basic info to get you started here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
I hope you can get an earlier appointment. I assume that the neuro will concur that your seizures are epileptic. Do you think continuing to increase the Keppra will help control your seizures, or are you hoping to switch to a different medication? Either way, be prepared with written questions for the neuro. Make that appointment count! And don't leave until all your questions are answered.
If you can, keep focusing on being proactive in eliminating stressors. If that means baking and cooking 24 hours a day, go for it. See if you can add in other ways to distract yourself and relax (meditation, puppies, gardening, therapy, music, yoga, walks). And keeping a seizure diary can help too. Some good basic info to get you started here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/I hope you can get an earlier appointment. I assume that the neuro will concur that your seizures are epileptic. Do you think continuing to increase the Keppra will help control your seizures, or are you hoping to switch to a different medication? Either way, be prepared with written questions for the neuro. Make that appointment count! And don't leave until all your questions are answered.