I wish someone would leave a comment here telling us abo...

I wish someone would leave a comment here telling us about a drug that worked!

I started experiencing strange periods of altered awareness about a month after a large-scale scalding from spilt boiling water. it is difficult to explain how i feel after reading about the experiences of other people. Suffice it to say that i burst into tears. A small part of me had always hoped that the diagnosis was wrong, that maybe it was my blood sugar, or something. but there is something very powerful about learning that other people have experienced the same things as you have, particularly when no-one you have ever met can understand what you are going through, or what you are talking about.

the seizures themselves are of three kinds: the best ones are not much more than a momentary fear/panic feeling that makes me stop, but its as gone as quickly as it comes, so its not too bad. the second is longer, i feel dreamy, dizzy, i find it hard to concentrate, or rather, i have to concentrate very hard just to walk or do anything. there is a strong temptation to just carry on doing whatever i was in the middle of doing something automatic like walking. traffic and moving people become both terrifying and mesmirising. apparently my speech and what i am saying changes 15 minutes before i get to this point, but i can only tell you this because i have met someone truly wonderful who figured out what is going on. i only know i a feel fear and am scared. the third kind is the worst. i get all of the above, but with a very strong *something* at the begining of it. a chain of thought, moving from one thing to another, like a dream, which creeps up on me, the same time as a wave of terror crashes down on me like a wall of water. i think my breathing is affected, but its hard to tell. all i know is that at the end of it, when i get to the end of the chain of thought that is so familiar at the time, but disappears entirely from my memory afterwards, is that i gasp for air, and swallow. whilst it is still with me, everything looks weird. the proprortions fascinate me. i am aware of spatial relationships to such an extent, almost to the exclusion of everything else (from my work as a social scientist, i believe this says something about the nature of knowledge) after i swallow, i am aware of feeling sick, and actually wretch after the worst ones. two to three of these a month, with 5-20 of the others. i think i may have sleep apnea, and am trying to prevent this with the strips, but they are very expensive. other symptoms - i forget words. alot. all the time. i am talking and then all of a sudden, either the word, or everything i was talking about, its gone. i am standing up in a meeting, i am on the phone to a civil servant in an office of the Government, i am hosting a lecture, and suddenly, everything is gone. so i make a joke about my memory, and laugh, and everyone laughs too. and inside, i am crying, because this veil may be fasinating, peculiar, even mystical, but it comes when i do not invite it in. adenoma of the pituiatry they said after the CT scan. then after the NMR scan, they said no, it wasnt there. EEG strange, but not in the way they expected. if they'd have asked about the hallucinations i was having at the time, maybe we might have got somewhere.

sadly the neurologist wasnt a very nice man. his manner wasnt very nice, and he was very impatient, and i thought it was just me before i slunk off and slowly stopped taking the tegratol (by the way, do NOT do this, it is very dangerous) because the side effects were so bad, but last year, he was struck off last year for sexually harrassing his patients. So now, 15 years later, i am about to have my first appointment with someone who might help me. i wish the doctors knew just how precious that 10 minutes is to us.

so what medications work, people? is anyone else getting hot flushes? (I do hope i am not having an early menopause!). Tell me what meds work, i so want to be free of this. i can embrace the strangeness, the shimmering lights, even the sudden shift in awareness, away from places, names and objects, and towards space, position and arrangements. but having this thrust upon one, so suddenly, and at any time, and with such a raging terror, so much nausea, such an overwhelming feeling of disaster, and to have my thoughts taken from me, my words taken from me, my very self taken from me, so many times during a week, in front of everyone, is more than i can bear sometimes. because all of a sudden, everything i am is gone, and no-one will wait for it to come back. and whenever i explain why it happens, or what is happening, the look on their faces tells me everything i need to know about the impact that has on who they think i am, and how they regard me. i would rather make myself a joke than a mad person.

[i:5f4dba056f]This message was automatically imported from the original Patient Experience[/i:5f4dba056f]

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