zoe147
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Hi,
I just wanted to introduce myself and say hello to everyone. I have been reading and reading and reading and finally feel ike i have found "home". I am so incredibly grateful to have found this community and forum. Seriously, it is the first time I feel like there are other people who might understand this crazy illness. Ever. My neuro is ok but nothing compares to hearing what other people are going through and finally being able to say, "me, too!" It means the world to me that you guys are all here sharing your stories and wisdom. For creating a safe place to share about our struggles. Thank you for that.
I have all sorts of trouble with my noggin and have so many questions it is hard to sort them all out in my head. *surprise*
I joke to my husband that my "computer" has sprung too many sprockets. A few years ago, I started to have amnesia, disorientation (didn't know who or where I was), was bumping into things and getting lost in familiar places. I thought I perhaps had a stroke or was getting early alzheimers. The hospital did an mri and an eeg and it turns out I have complex partial seizures throughout my left hemisphere. Possibly nocturnal, too. We tried Tegretol but I developed a rash so have been on Trileptal since. After talking with the neuro, I learned I have had seizures since I was a kid. I have always had so many symptoms (losing my balance and falling episodes, burning ammonia smell, stiffening neck and limbs, lights suddenly dimming, travelling spasms, difficulty gauging distance, deja vu that can last for hours, visual distortions, awful photosensitivity, sensation of the everything sinking or rising under me, episodes of inability to speak, write or understand, etc, etc, etc, so many I can't even list them) I always thought I was just weird or had trouble and have always tried to make the best of it and compensate. I also have had decades of light triggered, vomiting, literally cannot see migraines, menieres disease, biaural hearing loss and chronic motion sickness with episodes of vertigo (arg!, you don't want that!) all of which give me rides in the ambulance, stays in the hospital or stuck in bed.
This is the first time I've ever written all of this down in one place and now it kind of makes sense that it can be a bit overwhelming sometimes. I find I spend an enormous amount of energy just trying to avoid a relapse and stay healthy and act like I don't have trouble, even though I do. I'm not stupid but navigating the world can be exhausting. Is it strange that I have a hard time talking about all this with people? My husband and kids know but I pretty much don't tell anyone else ever if I can avoid it. Maybe some of you know what I mean? Right now I am trying as hard as I can to hold onto the job I have working in a handmade jewelry shop. They have me down to only a couple of hours and I don't want to lose that. Between not being able to hear, getting disoriented, dizzy and forgetting everything, sometimes maintaining can be really hard. I hate it, to tell you the truth.
I have more MRIs and eegs scheduled for this week because I have been having breakthrough seizures so wish me luck with that, eh? I don't know what the neuro thinks but I have new symptoms.
Gosh. I am incredibly grateful to finally have a place to share about what is going on with people who understand. When you have that,everything is so much easier to bear. If anyone has any insight or wisdom to share, that would mean so much to me. Thank you, thank you, thank you.
Hugs to everyone
:hugs:
I just wanted to introduce myself and say hello to everyone. I have been reading and reading and reading and finally feel ike i have found "home". I am so incredibly grateful to have found this community and forum. Seriously, it is the first time I feel like there are other people who might understand this crazy illness. Ever. My neuro is ok but nothing compares to hearing what other people are going through and finally being able to say, "me, too!" It means the world to me that you guys are all here sharing your stories and wisdom. For creating a safe place to share about our struggles. Thank you for that.
I have all sorts of trouble with my noggin and have so many questions it is hard to sort them all out in my head. *surprise*
I joke to my husband that my "computer" has sprung too many sprockets. A few years ago, I started to have amnesia, disorientation (didn't know who or where I was), was bumping into things and getting lost in familiar places. I thought I perhaps had a stroke or was getting early alzheimers. The hospital did an mri and an eeg and it turns out I have complex partial seizures throughout my left hemisphere. Possibly nocturnal, too. We tried Tegretol but I developed a rash so have been on Trileptal since. After talking with the neuro, I learned I have had seizures since I was a kid. I have always had so many symptoms (losing my balance and falling episodes, burning ammonia smell, stiffening neck and limbs, lights suddenly dimming, travelling spasms, difficulty gauging distance, deja vu that can last for hours, visual distortions, awful photosensitivity, sensation of the everything sinking or rising under me, episodes of inability to speak, write or understand, etc, etc, etc, so many I can't even list them) I always thought I was just weird or had trouble and have always tried to make the best of it and compensate. I also have had decades of light triggered, vomiting, literally cannot see migraines, menieres disease, biaural hearing loss and chronic motion sickness with episodes of vertigo (arg!, you don't want that!) all of which give me rides in the ambulance, stays in the hospital or stuck in bed.
This is the first time I've ever written all of this down in one place and now it kind of makes sense that it can be a bit overwhelming sometimes. I find I spend an enormous amount of energy just trying to avoid a relapse and stay healthy and act like I don't have trouble, even though I do. I'm not stupid but navigating the world can be exhausting. Is it strange that I have a hard time talking about all this with people? My husband and kids know but I pretty much don't tell anyone else ever if I can avoid it. Maybe some of you know what I mean? Right now I am trying as hard as I can to hold onto the job I have working in a handmade jewelry shop. They have me down to only a couple of hours and I don't want to lose that. Between not being able to hear, getting disoriented, dizzy and forgetting everything, sometimes maintaining can be really hard. I hate it, to tell you the truth.
I have more MRIs and eegs scheduled for this week because I have been having breakthrough seizures so wish me luck with that, eh? I don't know what the neuro thinks but I have new symptoms.
Gosh. I am incredibly grateful to finally have a place to share about what is going on with people who understand. When you have that,everything is so much easier to bear. If anyone has any insight or wisdom to share, that would mean so much to me. Thank you, thank you, thank you.
Hugs to everyone
:hugs:
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