Living with epilepsy: Tips and support?
in Health ·
Let's start from square one:
About 11 years ago, I had surgery on my right ear because they suspected otosclerosis. According to the discharge papers, they didn't actually perform a stapedotomy—instead, they found malleus fixation. Now? I'm dealing with conductive hearing loss and intense tinnitus.
Then, three years ago, things started going sideways:
Racing heart, numbness on the left side of my face... an MRI of my brain came back fine, Doppler on the blood vessels was okay, EMG on my upper extremities was also fine. However, the EEG showed diffuse dysrhythmic changes localized to the right frontotemporal region, with some slight paroxysmal tendencies. Neck X-rays showed minor changes at most.
The catch is that doctors diagnosed me with arrhythmic epilepsy. I DON'T LOSE CONSCIOUSNESS, yet they keep playing chemist with my meds.
For instance, I'm on Trileptal (for epilepsy) plus they added Lamictal about two months ago.
On top of that, I’m taking Concor 1.25 (prescribed for the rapid heart rate).
Over these last three years, there hasn't been any progress—if anything, things have just gotten worse.
Symptoms (to recap): weakness, numbness on the left side of my face, occasional partial numbness in the left eye, tinnitus, and leaning toward the left (my balance center is fine—which is why I mentioned the ear surgery earlier).
And yeah, I'm 51, so some people try to pin this on menopause (though my cycles are regular).
My request:
If anyone out there is dealing with similar symptoms, please reach out and share what you've been through.
Thanks a lot.🙂
About 11 years ago, I had surgery on my right ear because they suspected otosclerosis. According to the discharge papers, they didn't actually perform a stapedotomy—instead, they found malleus fixation. Now? I'm dealing with conductive hearing loss and intense tinnitus.
Then, three years ago, things started going sideways:
Racing heart, numbness on the left side of my face... an MRI of my brain came back fine, Doppler on the blood vessels was okay, EMG on my upper extremities was also fine. However, the EEG showed diffuse dysrhythmic changes localized to the right frontotemporal region, with some slight paroxysmal tendencies. Neck X-rays showed minor changes at most.
The catch is that doctors diagnosed me with arrhythmic epilepsy. I DON'T LOSE CONSCIOUSNESS, yet they keep playing chemist with my meds.
For instance, I'm on Trileptal (for epilepsy) plus they added Lamictal about two months ago.
On top of that, I’m taking Concor 1.25 (prescribed for the rapid heart rate).
Over these last three years, there hasn't been any progress—if anything, things have just gotten worse.
Symptoms (to recap): weakness, numbness on the left side of my face, occasional partial numbness in the left eye, tinnitus, and leaning toward the left (my balance center is fine—which is why I mentioned the ear surgery earlier).
And yeah, I'm 51, so some people try to pin this on menopause (though my cycles are regular).
My request:
If anyone out there is dealing with similar symptoms, please reach out and share what you've been through.
Thanks a lot.🙂