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greenstormSo. I've taken the narcolepsy drug (modafinil) a couple more days (very few, because I'm worried about the hormonal-medication-cancelling effects) and it gives me a bunch more mental functionality than I've had in awhile. My memory works better?
I'm titrating down on the SSRI by 1/3, so it could just be that, or that could be contributory.
The sun is returning, that could be contributory.
But also-- modafinil has mitochondrial action, it helps remove damage from them of the kind caused by... long covid. So it's been helpful in very early, off-label use for fatigue and brain fog in long covid.
Now, my baby brother died of a recessive mitochondrial disease. I've never been tested. My energy stuff has always existed and it's weird.
This drug does not make my energy stuff wholly go away but it gives me a little more ability.
I have no idea if any of these are connected, and it would be funny to get to this point through the narcolepsy route if it is that my mitochondria are just slightly less functional through having a recessive issue (is this one where one allele can make up for the recessive one but not as well?). Back when Eli died I was 10 or so, it was 32 years ago, and in a tiny bit of googling I see that they know now his condition can be caused by mutations to any one of 110 genes, and 20% of cases are mitochondrial and not nuclear DNA, which is amazing. I expect that "recessive" isn't a great fit for it anymore and I don't know which variant his was.
Someday I'd like to get enough genetic testing done to know what things look like in there but I'm not happy about the privacy around that stuff right now. The cheap ones are especially not attractive given everything. I don't know if that issue will get better within my lifetime or not.
Anyhow, PDA still exists A LOT but at least I'm less immobilized than I was, and sitting upright is less exhausting.
I'm titrating down on the SSRI by 1/3, so it could just be that, or that could be contributory.
The sun is returning, that could be contributory.
But also-- modafinil has mitochondrial action, it helps remove damage from them of the kind caused by... long covid. So it's been helpful in very early, off-label use for fatigue and brain fog in long covid.
Now, my baby brother died of a recessive mitochondrial disease. I've never been tested. My energy stuff has always existed and it's weird.
This drug does not make my energy stuff wholly go away but it gives me a little more ability.
I have no idea if any of these are connected, and it would be funny to get to this point through the narcolepsy route if it is that my mitochondria are just slightly less functional through having a recessive issue (is this one where one allele can make up for the recessive one but not as well?). Back when Eli died I was 10 or so, it was 32 years ago, and in a tiny bit of googling I see that they know now his condition can be caused by mutations to any one of 110 genes, and 20% of cases are mitochondrial and not nuclear DNA, which is amazing. I expect that "recessive" isn't a great fit for it anymore and I don't know which variant his was.
Someday I'd like to get enough genetic testing done to know what things look like in there but I'm not happy about the privacy around that stuff right now. The cheap ones are especially not attractive given everything. I don't know if that issue will get better within my lifetime or not.
Anyhow, PDA still exists A LOT but at least I'm less immobilized than I was, and sitting upright is less exhausting.
no subject
Date: 2024-01-11 03:45 am (UTC)