Hi, I'm new to this group. Just saw a neurologist/epilepsy specialist as my neurologist wasn't sure if I was having seizures but they weren't caught during the sleep deprived EEG (during the day). She thought I should have a video EEG (few day stay at hospital).
The epilepsy specialist was good. Patient and thorough with questions and testing. I'm glad about that. It's really stressful waiting until I can get the test and hoping it will work properly. It's a bit awkward to have video in my home for a few days though. At least I only turn it on when I think it's happened or going to. I'll have to leave it on all night cause that's when I have the most trouble with it.
I haven't had any full seizures/convulsions but sometimes seem to blank out shortly or have myoclonic jerks or twitches. It's woken me up from dreams before.
I think my case is complicated cause of the combination of conditions I have. I think I also can't be sure about it until I know if there's seizures happening. I have odd symptoms. I do have asthma that occasionally flairs up but I rarely need to use a puffer, which is good I guess. I have suffered from depression and anxiety for a long time but with medication and therapy I was doing better but the health issues were still happening or getting worse with medication so I had to lower and change the medication so now I'm not doing as well emotionally, plus the stress of all this health stuff/waiting.
Not being understood is difficult. I don't even really understand myself. Lol I might have Aspergers/autism spectrum but most people don't see it as a problem or notice it. Just some family members, etc. I just know I'm sensitive and awkward in group settings. I can be alright in individual conversations and writing is easier for me than explaining through talking aloud. Anyways, thanks so much for anyone who's read this. I know it's a lot and complicated. I appreciate and support.
I was tested for narcolepsy cause I have symptoms of it, with cataplexy, but during the night part of the test I only slept a few hours (cause of muscle jerks, etc keeping me up), so though I fell asleep within 5/6mins during the naps, they can't be sure it isn't from lack of sleep. Plus I didn't enter R.E.M. Sleep during them (though it's happened to me before very fast but I was on a medication that affects/lowers R.E.M. Sleep). Anyways. It's just frustrating dealing with all this and not really knowing what's going on. Makes me feel crazy and misunderstood. I'm hoping this video EEG will spread some light. I really hope they are able to determine what's going on. I really need the help. I don't like being "disabled". I know it's possible it won't all change but at least having understanding will help, and support. I just want to live the best life that I can. Not doing nothing all the time if I'm able to get better and be able to do more and hopefully help others too. Thanks so much! Take care.
