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Nocturnal Epilepsy?

Tue, 06/27/2017 - 21:40

Comments

Keep a diary of how things

Submitted by Roald on Wed, 2017-06-28 - 09:34
Keep a diary of how things are going and everything related to either seizure symptoms or Rx side effect symptoms. There is an online version here or I just write a "word" document on my computer and update/save it as things happen. It is hard to remember things and it is also helpful to see a timeline of how frequently things happen. I also note what I was doing the day before that was out of the ordinary since physical strain on my back injury is the main trigger for me but maybe food, sleep, etc may be relevant to you. Also note your concussions or other injuries/illnesses. I also include when I start, increase dose, or stop Rx. This is also useful to give to drs so you don't have to explain everything every time and drs can't interrupt and dismiss your explanation. It is tough to find the right Rx (I am on #5 vimpat and #6 oxcar) and they have their own issues to keep track of. Some side effects make seizure symptoms worse or cause actual seizures themselves so it is important to track wether the Rx is making things better or not. In my case when they have made things worse, drs just want to add more drugs to the ones not working or making things worse rather than get you to stop those and try something new and find one that actually works or improves your condition first and then proceed from there. Otherwise they just start stacking up the drugs and are using one to treat the side effects of the others, not necessarily treating your specific condition. I'm 2 months into vimpat and 2 weeks into oxcar, and having some real problems with with the oxcar or it's combination with the vimpat but I'm still trying to give it a fair chance of 4 weeks. When things aren't helping or making you feel worse tell your Dr and remember you are the one in charge. They have fist fulls of different drugs to try on us so if one isn't working ask to try something else. If they tell you "most people take a combination of anti-epileptic Rx's" tell them you want to start with one that actually works, makes you feel better, and improves your medical issues in some way and then you can add more to it if needed as long as they continue to improve your situation. Some drs consider that "drug seeking" like it is a bad thing... d@mn right I am seeking drugs that are effective not just ones that turn me into a zombie who doesn't care about anything like continued seizure activity, or a completely different person who still has seizures, or wild animal who friends and family can't stand to be around who still has seizures. This website has been the most helpful and informative source of information I have found. Good luck

You may have had a brain

Submitted by morrigan067@gmail.com on Fri, 2017-06-30 - 17:59
You may have had a brain bleed caused during the concussion. Have them do a CT or MRI.. if there is a built up of fluid anywhere in your brain then it could lead to some of the symptoms your having. 

If it is not related to the

Submitted by whatitisepilepsy on Thu, 2017-07-20 - 18:16
If it is not related to the concussion this might help,  May I suggest talking to your doctor about a med called Lamotrging. I'm also taking VIMPACT with that, and I have the most control I've ever had. We are trying to wing off the vimpact. Something else that might work for you, I went a whole year without arua or seizures taking a martial arts class. It was not so much what I learned, the over 100 jumping jack, stretching, working my body at least 5 days a week.  You have heard it before," use it or lose it". Exercise make sense. As soon as I stopped everything came back with in a week. Good luck, life with out seizures can be amazing, always try new things don't let it win. 

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