Chel
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Hi, I'm new here, and don't yet have a confirmed diagnosis. A pocket history...
10 months ago at the start of a 9 wk migraine, I had an episode of aphasia and dysphasia. When I eventually told my doctor (3 wks later) he sent me to hospital as a suspect TIA, they ran a CT and found temporal lobe atrophy, but no evidence of TIA. Another week later, the migraine was still with me, so an MRI to follow up, and still no answers re the migraine.
The migraines (I thought they were "just" headaches) had been with me on and off for a couple of years by this stage, so mea culpa for ignoring them. I also didn't recognise the visual disturbances as "auras", or as I now believe, seizures. I was started on Endep for the migraine, with little effect, other than to make me drowsy and obnoxious.
Alongside this, I was found to be in peri-menopause, and my brain stopped. Dead. I don't know how I kept my job, but I did; thankfully my neurologist and gynae combined to get me onto HRT and save my sanity and my career.
Massive memory loss and reduction in cognitive ability in this time. There were times I couldn't work out how to tie my shoe laces, so bought slip on shoes (with elastic sides). I couldn't work out how to spell my own name. It's been a nightmare. Words out of order - honestly, it was like being a dementia patient. Frequent aphasia and dysphasia.
Meanwhile, my brain was like an electrical storm, with fireworks going off day and night - visual and aural. I had been switched to topiramate in the meantime, which was doing a better job of controlling the migraines, but not the "auras/seizures". I could write them out, but that's a bit like War and Peace. Jerking of my left arm, head, left leg if I eat crisps, the electrical storm mentioned above, pretty sure I've been seizing in my sleep (if I sleep at all), I was only getting about 2 hrs sleep a night, and so on.
I did find a food trigger - chai tea. Have been off it for about 6 weeks now, and my auras/seizures are down to almost nil. My main aura is low-grade "white noise" (visual).
I had an EEG last week, and during the strobe test my teeth chattered, my hands twitched and I think my head moved around. I get the results in two weeks. I was going to Las Vegas (in order to visit the Grand Canyon) in three weeks!!! I'm guessing Las Vegas is out...
It's been a long road - through the TIA suspicion, down the dementia path, and now epilepsy. At the end of the day, the CT and SPECT both indicate moderate temporal lobe atrophy (I'm 46, btw), so it seems to me that TLE would fit the profile.
Cause for the atrophy is unknown, although I'm IgA deficient, so it's possible some infection at some point has gone into my brain. I'm also a coeliac, so there could be a nutrition component.
Chel
10 months ago at the start of a 9 wk migraine, I had an episode of aphasia and dysphasia. When I eventually told my doctor (3 wks later) he sent me to hospital as a suspect TIA, they ran a CT and found temporal lobe atrophy, but no evidence of TIA. Another week later, the migraine was still with me, so an MRI to follow up, and still no answers re the migraine.
The migraines (I thought they were "just" headaches) had been with me on and off for a couple of years by this stage, so mea culpa for ignoring them. I also didn't recognise the visual disturbances as "auras", or as I now believe, seizures. I was started on Endep for the migraine, with little effect, other than to make me drowsy and obnoxious.
Alongside this, I was found to be in peri-menopause, and my brain stopped. Dead. I don't know how I kept my job, but I did; thankfully my neurologist and gynae combined to get me onto HRT and save my sanity and my career.
Massive memory loss and reduction in cognitive ability in this time. There were times I couldn't work out how to tie my shoe laces, so bought slip on shoes (with elastic sides). I couldn't work out how to spell my own name. It's been a nightmare. Words out of order - honestly, it was like being a dementia patient. Frequent aphasia and dysphasia.
Meanwhile, my brain was like an electrical storm, with fireworks going off day and night - visual and aural. I had been switched to topiramate in the meantime, which was doing a better job of controlling the migraines, but not the "auras/seizures". I could write them out, but that's a bit like War and Peace. Jerking of my left arm, head, left leg if I eat crisps, the electrical storm mentioned above, pretty sure I've been seizing in my sleep (if I sleep at all), I was only getting about 2 hrs sleep a night, and so on.
I did find a food trigger - chai tea. Have been off it for about 6 weeks now, and my auras/seizures are down to almost nil. My main aura is low-grade "white noise" (visual).
I had an EEG last week, and during the strobe test my teeth chattered, my hands twitched and I think my head moved around. I get the results in two weeks. I was going to Las Vegas (in order to visit the Grand Canyon) in three weeks!!! I'm guessing Las Vegas is out...
It's been a long road - through the TIA suspicion, down the dementia path, and now epilepsy. At the end of the day, the CT and SPECT both indicate moderate temporal lobe atrophy (I'm 46, btw), so it seems to me that TLE would fit the profile.
Cause for the atrophy is unknown, although I'm IgA deficient, so it's possible some infection at some point has gone into my brain. I'm also a coeliac, so there could be a nutrition component.
Chel