@A MyEpilepsyTeam Member. Have your neurologists ever told you “get some exercise” or “exercise can help”? A few of mine did early on, but it can be difficult to get good exercise at home, and going for walks can be dangerous due to the chance of seizure. And walks don’t really get your endorphins racing like a good workout. I joined a small gym during a period where I felt like a seizure was not likely. Little by little my overall mood got better, I felt better, and the number and frequency of my seizures has dropped. Exercise can help in many ways.

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A MyEpile...

@A MyEpilepsyTeam Member With regards to sleep apnea, have you gone to a site to look at the symptoms of someone who has sleep apnea? One of these you cannot find out by yourself (you could record while you sleep to determine if you snore for example), and that is whether you have had a shift in your overall mood as a result.

In my case (because of my previous neurologist was making all kinds of mistakes in the later years as he lost more knowledge to Alzheimer's), I had gone about 6 months with severe sleep apnea before a co-worker came up to me one day and ask me: "Why are you being such a bitch!" I had not noticed any change in my mood. However, after she made that comment, I went on the NLM site and researched sleep apnea and its symptoms. And I then demand that my neurologist get me a sleep apnea test. When the test was done, it was determined that I was "waking up" (not completely but out of REM sleep) 54 times every hour, thus I had not had a moment of real and refreshing sleep (travel through the full sleep cycle) in 6 months. If my neurologist was in a better state of mind, he might have asked me how I managed to get up every morning (it was one of the first things my new neurologist asked on the first day I saw him). For the record, I am proof that God is performing miracles every day because there is no way I should have been able to survive that long without real sleep and long before that time I should have suffered major brain damage. I know that I did experience some brain damage (God wanted me to learn from the experience and share the knowledge with others), but it is only because of God's miracle that I am even alive.

Don't wait for your neurologist to act. If you believe that you might have sleep apnea, then go to another doctor to get approved to go to a sleep clinic.

What did they do with the recordings (or did they make them?) when you were in for full time observation with the 5 days of VEEG? They might already have the information they need there to tell whether you have sleep apnea or not.

Remember, if we are not getting enough sleep, it greatly increases the chance that we will have seizures triggered.

Listen to your psychologist and do the work to try to get your insomnia under control and reduce your stress levels because those too are what you do as your part of the effort to prevent the seizures.

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I find that hard to believe. Some testing still doesn’t pick up the abnormal brain waves when a seizure happens. They tried to tell me that too until they witnessed my seizures at the SMU and then they believed me. It made me mad to have them suggest that I didn’t have epilepsy, I guess they needed absolute proof though. I hope you go for further testing just to make sure🤗

Hi @A MyEpilepsyTeam Member. Thank you for your comment. My neurologists recommended exercise. I’m not really talking about hi endurance exercise. I know what my body can and cannot do. I’m just talking about something more than walking. My routine at my gym includes starting on the treadmill at a pace slightly faster than the typical walk, then some light weights, ab exercise, a few squats holding a light weight. It is better than sitting in my couch waiting for the next seizure. I know my “seizure cycle” well enough that I started this during a non seizure period and it has helped me feel better and more positive. Little by little, slowly, I’ve felt better and better and my seizures have gotten fewer and farther apart.

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Brigitte,
Thats how I was diagnosed with my Epilepsy. I was about 1 year of age . I was in a baby chair and I went from moving and active to going limp and turning blue. Moments later I started to move again. My parents call for the ambiance. Got brought to the hospital and was diagnosed with Epilepsy. I wish they could figure out a better answer for you.
Many prayers 🙏🙏🙏🙏 to you . Hope they can finally find a true answer .