Now I have Epilepsy

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Hello, I am a 38yr old female who had her 1st (and what was thought to be last) GM seizure 2 & 1/2 yrs ago after a night of HEAVY drinking, smoking cigarettes and weed, not eating, sleeping, drinking water OR taking my meds. Lifestyle and social changes were made. I went from drinking 4-5 drinks, 4 times a week to maybe 3-4 times total in the past 2 1/2 yrs. Wednesday I had another grand mal. Unexpected and unprovoked, happened at work. It also didn’t occur like the last one where I could feel my heart beating really fast before it happened. This time, nothing of the sort. If I think back, the only “trigger” may have been the stresses around my work area that I have brought to my managers attention several times. If I really am truthful I have NOT been taking the proper dose of lamictal for at least a year, if not longer. I was put on it for mild bipolar disorder about a year before the first seizure, was on it when I had that first one but minus a few days dose. But my neurologist said, at the time, that it wasn’t likely that taking it already and missing doses would be masking a underlying disorder and the dose I was on was not the same as treating someone with epilepsy. All of my tests came back “unremarkable” and that was that. Stop drinking, stop smoking weed, get more sleep, reduce stress. Until Wednesday. The differences in my lifestyle between episodes are that I do not drink nearly as much (not even close) and I do not smoke cigarettes any more entirely. However I have not been eating and letting my blood sugar get dangerously low. When I do eat, it’s only a few bites. My sleep patterns remain the same, no more than 4-5 hrs a night (no matter what I try and believe me I’ve tried it all, Cpap machines, medications, natural remedies, proper sleep hygiene, you name it, I’ve tried it) The stop smoking weed part? That continues...and if that’s what’s causing seizures, then color me surprised given what is being discovered in regards to CBD oil...I digress... Worth mentioning that I work in Seattle and on Wednesday I ventured out, walked up a hill and felt very weird for the rest of the day until it happened. The smoke from the wildfires has been really bad this year and I had successfully avoided being outside more than 10-15 minns since it rolled in. But I’m not anywhere near the fires like some people are and we aren’t hearing of an “outbreak of seizures” due to it. I do believe that for me it seems to be a “perfect storm” of things where my brain just says “NOPE” but I also don’t know much about my newly acquired disorder, nor do I feel like I should complain because it’s not like I’ve had to deal with this my whole life like some people have. Shouldn’t I just be able to pull up my big girl pants and deal with it? I haven’t been able to stop crying. I’m feeling extremely low and worthless. I’ve found a local support group that I want to check out...but since I can’t drive for 6 months, the logistics of getting around to do these things and get medical care will be extremely difficult (Closest bus stop is miles away) and I just bought a new car not even 3 months ago. My neurologist is increasing my lamictal and wants me to start with my sleep issues. So that means back to expensive overnight hospital stays and machines that are “supposed” to help but don’t. I will go, and I will try again, but I won’t be disappointed if it doesn’t work I suppose is what I’m saying. I have support from a few friends, but those people have their own lives to lead. I live with my 80 yr old father...who taught me nothing but independence and self reliance, so he will not be someone to lean on, but that’s ok, I’m used to that. So. What’s all this blubbering about then? I’m just a girl who has been diagnosed with epilepsy who is sad and scared and feelin really low and just needed to get that off her chest.

Comments

Look like many of the why me

Submitted by just_joe on Sat, 2018-08-25 - 12:42

Look like many of the why me people. I asked that over 50 years ago and got the answer "Why not you"Yes we all have things to deal with and this is one of mine.. Look like you have made changes that were helpful. A question to ask is Has your body changed any in the last couple of years? Are you taking your meds as directed? Both of those questions need to be answered. If your body has changed the medications therapeutic levels needed to be changed which is why the increase in doses was needed as well as to stop other seizures. Taking meds as required needs to be done. 2 times a day does not mean in the morning and at night. It means taken as close to 12 hours apart as possible. That way the therapeutic levels stay the same and they can keep breakthrough seizures from happening. That can help if the dose is taken late or even missed. Oh and you are not the only one that misses a dose or takes meds late, Been there done that.Be glad that you weren't diagnosed back in the 60's like I was. Bus system where I lived was non existent. As for a father mine was a marine Sargent so I know I had to do things or else ummmmmmmmmmmmm yup. My real father was about the same way. Mom was well Mom. All of my parents were there but I was the person that had to know what to do and when. Now for the part about the group call them and see if they know of a way you could get there,But this part says a lot about you <<<"I do believe that for me it seems to be a “perfect storm” of things where my brain just says “NOPE” but I also don’t know much about my newly acquired disorder, nor do I feel like I should complain because it’s not like I’ve had to deal with this my whole life like some people have. Shouldn’t I just be able to pull up my big girl pants and deal with it?" I do think you will get answers to your questions and go far in your life with very little help. Use this site to find out more and you might want to get the My Seizure Diary it can help you in many ways.

Look like many of the why me people. I asked that over 50 years ago and got the answer "Why not you"Yes we all have things to deal with and this is one of mine.. Look like you have made changes that were helpful. A question to ask is Has your body changed any in the last couple of years? Are you taking your meds as directed? Both of those questions need to be answered. If your body has changed the medications therapeutic levels needed to be changed which is why the increase in doses was needed as well as to stop other seizures. Taking meds as required needs to be done. 2 times a day does not mean in the morning and at night. It means taken as close to 12 hours apart as possible. That way the therapeutic levels stay the same and they can keep breakthrough seizures from happening. That can help if the dose is taken late or even missed. Oh and you are not the only one that misses a dose or takes meds late, Been there done that.Be glad that you weren't diagnosed back in the 60's like I was. Bus system where I lived was non existent. As for a father mine was a marine Sargent so I know I had to do things or else ummmmmmmmmmmmm yup. My real father was about the same way. Mom was well Mom. All of my parents were there but I was the person that had to know what to do and when. Now for the part about the group call them and see if they know of a way you could get there,But this part says a lot about you <<<"I do believe that for me it seems to be a “perfect storm” of things where my brain just says “NOPE” but I also don’t know much about my newly acquired disorder, nor do I feel like I should complain because it’s not like I’ve had to deal with this my whole life like some people have. Shouldn’t I just be able to pull up my big girl pants and deal with it?"  I do think you will get answers to your questions and go far in your life with very little help. Use this site to find out more and you might want to get the My Seizure Diary it can help you in many ways.

Look like many of the why me people. I asked that over 50 years ago and got the answer "Why not you"Yes we all have things to deal with and this is one of mine.. Look like you have made changes that were helpful. A question to ask is Has your body changed any in the last couple of years? Are you taking your meds as directed? Both of those questions need to be answered. If your body has changed the medications therapeutic levels needed to be changed which is why the increase in doses was needed as well as to stop other seizures. Taking meds as required needs to be done. 2 times a day does not mean in the morning and at night. It means taken as close to 12 hours apart as possible. That way the therapeutic levels stay the same and they can keep breakthrough seizures from happening. That can help if the dose is taken late or even missed. Oh and you are not the only one that misses a dose or takes meds late, Been there done that.Be glad that you weren't diagnosed back in the 60's like I was. Bus system where I lived was non existent. As for a father mine was a marine Sargent so I know I had to do things or else ummmmmmmmmmmmm yup. My real father was about the same way. Mom was well Mom. All of my parents were there but I was the person that had to know what to do and when. Now for the part about the group call them and see if they know of a way you could get there,But this part says a lot about you <<<"I do believe that for me it seems to be a “perfect storm” of things where my brain just says “NOPE” but I also don’t know much about my newly acquired disorder, nor do I feel like I should complain because it’s not like I’ve had to deal with this my whole life like some people have. Shouldn’t I just be able to pull up my big girl pants and deal with it?" I do think you will get answers to your questions and go far in your life with very little help. Use this site to find out more and you might want to get the My Seizure Diary it can help you in many ways.

Sad and feeling low is as

Submitted by Jazz101 on Sat, 2018-08-25 - 15:53

Sad and feeling low is as natural as any other feeling so I hear you. That said, the upside is that you are talking. Coping with anything starts with talking. Epilepsy is one of those conditions that requires a certain amount of patience as you push to see what might be your best option. I'll start by saying that at your age it can't be easy because a sudden shift for any of us down the road takes time to really adjust. In my case Epilepsy showed up from the time I was 4 so it was easier to deal with; no stunning surprise. So yes, I feel for you.That said, neurology as advanced significantly so I think it's good to try to get in touch with a hospital with good ratings in neurology and neurosurgery. My source was US News and World Report. I see University of Washington Medical Center is one of the best rated hospitals in Washington in neurology and neurosurgery. If you are there, well, that's a good start. Also, it's good to know that you were able to locate a group. That can also come in handy.

I'm sorry you are going

Submitted by Thebrunette on Fri, 2018-09-07 - 18:03

I'm sorry you are going through this. If you need someone to talk to whether its by e-mail, social media, phone or in person let me know. I'm in Seattle area as well. I can always use a new friend and it's nice to know that they are going through the same thing :)