kellybones
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Hello,
So. I'm really not sure even how to start.
I'll go back to my first possibly related issue and build from there, I guess.
September 2016, while having dinner with my parents when travelling, I had what I have been terming a "light-headed" spell. I've had them fairly regularly since about 2009 when I started running outdoors. I would generally get them when I would start running without warming up, especially in the hot weather here in Arizona. I didn't think much of the light-headed feeling, to me, when I describe it as, literally, it feels like there is a moment when there isn't enough blood in my brain. After having them for awhile, I hit upon a solution which was to up my electrolytes (it is very hot and I'm a heavy, heavy sweater) and increase my fluid intake, as well as warm-up by walking before starting a run. So long as I was dedicated and vigilant about supplementing and my hydration level, these episodes were basically gone. Any time I did have one, it was when I was doing something out of my ordinary (i.e. travelling, forgot to take my electrolytes, wasn't hydrated enough). I even have had them during half marathons and just kept running, so I didn't think much of it. My mother, on the other hand, lost her gourd when this happened in front of her (I'd been on an airplane, literally an hour beforehand and wasn't hydrated). So, to calm my mother, I promise to go see my GP when I get back to AZ.
GP, in September, checks my bloodwork (fabulous as usual) and sends me to a neuro, just in case. Neuro does her thing - basic neuro physical and then to be safe, sends my for a CT - totally normal. GP on my revisit, tentative diagnoses me with POTS (Postural Orthostatic Syndrome, since my heart rate does spike during these events) and he suggested keeping on top of the fluid intake and the electrolytes but otherwise, not to worry unless things changed.
Fast forward to 3/1/17. I wake up in the morning with a super sore tongue and start getting ready to go for a walk with the dogs (there's 3, and there's walking/running every morning) when my husband stops me and tells me that I had a seizure the night before - tonic clonic. So back to the GP who does my bloodwork (still all in the excellent/normal range) and sends me back to the Neuro where we discuss and determine that my husband has observed at least 4 to 5 automatisms (lip smacking) during the night, possible complex partial seizures. She orders an EEG on 4 hours of sleep (abnormal during the "dozing" phase) and an MRI (with/without contrast - 2 congenital malformations were determined in my right temporal lobe). I'm still in the which medication works phase at this point I guess. I started with Keppra (generic) and hated the RAGE. I could have lived with the tiredness but the anger was just too much. So I've now transitioned to Vimpat.
My questions at this point are related to employment, driving, and exercise.
1.) Who is employed/who is not? I had already stopped working (36 years old but husband wanted a stay at home wife to take care of the zoo - 3 dogs and 4 cats) a year to the day prior to the seizure. I had always had the possibility of going back to work in my head (I was a clinical laboratory technician) if I got too bored, something happened to the spouse, or if I just wanted more money. Now....I really don't know. The tiredness level is definitely rough enough without dropping a highly stressful job on top of it.
2.) I miss my car. Oh boy do I miss my car. I have 25 more days of no car, if everything else works out right. I'm trying SO hard to not count on getting my car back. I'm afraid if I don't that it will feel catastrophic. I've been getting rides with my husband, friends, and Uber. I just feel so dependent! I'm not certain how this is generally handled. Do you just learn to accept it as a new normal?
3.) Like I said, I run. But I also walk, and prior to this, lifted, biked, swam, hiked, etc, etc, etc. I am still walking and running because I just can't imagine NOT being physically active. That being said, finding information about exercise and seizures is hard. Does anyone have any information/links/tips on exercise with epilepsy? I'm currently running 3 or 4 miles a day and walking 3 or 4 miles a day - but I plan to up that as I have a half marathon in Cincinnati in October that I need to start training for.
I know, this is a long one - but I am just starting to find my feet again and I'm really hoping to start to feel more like me again. Hopefully.
Kelly
So. I'm really not sure even how to start.
I'll go back to my first possibly related issue and build from there, I guess.
September 2016, while having dinner with my parents when travelling, I had what I have been terming a "light-headed" spell. I've had them fairly regularly since about 2009 when I started running outdoors. I would generally get them when I would start running without warming up, especially in the hot weather here in Arizona. I didn't think much of the light-headed feeling, to me, when I describe it as, literally, it feels like there is a moment when there isn't enough blood in my brain. After having them for awhile, I hit upon a solution which was to up my electrolytes (it is very hot and I'm a heavy, heavy sweater) and increase my fluid intake, as well as warm-up by walking before starting a run. So long as I was dedicated and vigilant about supplementing and my hydration level, these episodes were basically gone. Any time I did have one, it was when I was doing something out of my ordinary (i.e. travelling, forgot to take my electrolytes, wasn't hydrated enough). I even have had them during half marathons and just kept running, so I didn't think much of it. My mother, on the other hand, lost her gourd when this happened in front of her (I'd been on an airplane, literally an hour beforehand and wasn't hydrated). So, to calm my mother, I promise to go see my GP when I get back to AZ.
GP, in September, checks my bloodwork (fabulous as usual) and sends me to a neuro, just in case. Neuro does her thing - basic neuro physical and then to be safe, sends my for a CT - totally normal. GP on my revisit, tentative diagnoses me with POTS (Postural Orthostatic Syndrome, since my heart rate does spike during these events) and he suggested keeping on top of the fluid intake and the electrolytes but otherwise, not to worry unless things changed.
Fast forward to 3/1/17. I wake up in the morning with a super sore tongue and start getting ready to go for a walk with the dogs (there's 3, and there's walking/running every morning) when my husband stops me and tells me that I had a seizure the night before - tonic clonic. So back to the GP who does my bloodwork (still all in the excellent/normal range) and sends me back to the Neuro where we discuss and determine that my husband has observed at least 4 to 5 automatisms (lip smacking) during the night, possible complex partial seizures. She orders an EEG on 4 hours of sleep (abnormal during the "dozing" phase) and an MRI (with/without contrast - 2 congenital malformations were determined in my right temporal lobe). I'm still in the which medication works phase at this point I guess. I started with Keppra (generic) and hated the RAGE. I could have lived with the tiredness but the anger was just too much. So I've now transitioned to Vimpat.
My questions at this point are related to employment, driving, and exercise.
1.) Who is employed/who is not? I had already stopped working (36 years old but husband wanted a stay at home wife to take care of the zoo - 3 dogs and 4 cats) a year to the day prior to the seizure. I had always had the possibility of going back to work in my head (I was a clinical laboratory technician) if I got too bored, something happened to the spouse, or if I just wanted more money. Now....I really don't know. The tiredness level is definitely rough enough without dropping a highly stressful job on top of it.
2.) I miss my car. Oh boy do I miss my car. I have 25 more days of no car, if everything else works out right. I'm trying SO hard to not count on getting my car back. I'm afraid if I don't that it will feel catastrophic. I've been getting rides with my husband, friends, and Uber. I just feel so dependent! I'm not certain how this is generally handled. Do you just learn to accept it as a new normal?
3.) Like I said, I run. But I also walk, and prior to this, lifted, biked, swam, hiked, etc, etc, etc. I am still walking and running because I just can't imagine NOT being physically active. That being said, finding information about exercise and seizures is hard. Does anyone have any information/links/tips on exercise with epilepsy? I'm currently running 3 or 4 miles a day and walking 3 or 4 miles a day - but I plan to up that as I have a half marathon in Cincinnati in October that I need to start training for.
I know, this is a long one - but I am just starting to find my feet again and I'm really hoping to start to feel more like me again. Hopefully.
Kelly