u/EggAltruistic1202

(Sort of a repost from the main FND sub but reworded slightly)

So for context I was diagnosed with FND after getting an unexplained stomach bug following withdrawal from a heavy cocodamol and thc edible habit in mid 2025 that ended with me losing 30lbs and being unable to eat most foods. About 6 weeks into starvation my “tremors” randomly developed into full body convulsions and uncontrollable jerks, vocalisations, tics, auras and hallucinations etc. Haven’t ever been offered an EEG, MRI or any testing but it seems like it’s off the table since my symptoms don’t seem consistent with epilepsy according to docs. Blood work was all normal at the time except slightly raised inflammation markers that were supposedly related to the stomach bug.

Anyway from doing my own research I’ve found out that my symptoms only happen in the hour after I eat a food that’s high in free glutamate (so MSG, soy sauce, tomato paste, mushrooms, spinach, essentially hundreds and hundreds of everyday foods and additives I’m no longer able to eat). Basically all the stuff that has umami flavour it seems. Even accidentally eating a few mustard seeds in a sandwich or a single piece of chocolate will set me off into multiple days of feeling as if each side of my brain is disconnected and that one eye is higher than the other/one side of my body is bigger than the other and severe sensory disturbances, Tourettes style tics and vocalisations and seizures like that. It somehow feels like I’m having some kind of migraine with shock like jerks where I feel as if I’m being pulled out of my body for a split second qnd my vision falters. This has been getting worse over time to the point where after a year the tiniest amount of tomato paste or canned tuna will trigger head pressure and feeling like fireworks are going off behind my eyes after 20 minutes and then the involuntary movements start.

Weirdly, the things that can help to abort these episodes temporarily (for the duration the drugs work) are ibuprofen and paracetamol?

My neurology registrar (have never been able to see a neurologist on the NHS because of the functional label) thinks it’s something to do with a gaba/glutamate issue but in all of the literature and even forums about FND I’ve never seen a single person say they have the same issue. I’m at my wits end at this point because there seems to be nothing to do other than avoid hundreds of foods and never be able to eat at a restaurant again lol.

I guess I’m wondering if anybody else has anything like this issue?

I’m in South Manchester if that helps. Looking to see someone to fully test and look through my neurological health issues (severe sensitivity to free glutamate and aspartame triggering seizure like behaviour, auras, tics, myoclonus, confusion) that haven’t been explained by the NHS neurology registrar I got referred to a year ago. So I’m looking for someone who can explain things to me properly and prescribe a treatment plan to actually recover as my symptoms seem to differ from the “regular” model of FND since they’re triggered by certain foods.

The NHS have been useless and it takes months for the GP and neurology registrar to communicate and I’ve only seen the neurology registrar once, given a link to a website and sent on my way lol. My symptoms are getting worse so I guess it’s time I pull some money out my a**. Any help or suggestions are very welcome :)

So for context I was diagnosed with FND (again, really unsure about this diagnosis) after getting an unexplained stomach bug in mid 2025 that ended with me losing 30lbs and being unable to eat most foods. About 6 weeks into starvation my “tremors” randomly developed into full body convulsions and uncontrollable jerks, vocalisations, tics, auras and hallucinations etc. Haven’t ever been offered an EEG or any testing at all but it seems like it’s off the table since my symptoms don’t seem consistent with epilepsy according to docs because I don’t lose consciousness, bite my tongue or pee myself.

Anyway from doing my own research I’ve found out that my symptoms only happen in the hour after I eat a food that’s high in free glutamate (so MSG, soy sauce, tomato paste, mushrooms, spinach, essentially hundreds and hundreds of foods and additives I’m no longer able to eat). Basically all the stuff that has umami flavour it seems. Even accidentally eating a few mustard seeds in a sandwich or a single piece of chocolate will set me off into multiple days of feeling as if each side of my brain is disconnected and that one eye is higher than the other/one side of my body is bigger than the other and severe sensory disturbances, Tourettes style tics and vocalisations and “seizures” like that. It basically feels physically like there are fireworks going off in my brain and I’ll get a rising feeling either in my head or stomach. Or sometimes I describe it as feeling like somebody is squirling around in my brain with a pair of chopsticks. Sometimes my body goes numb and tingly and I feel a rising sensation and then just fall to the floor. I never go fully unconscious - just sort of locked in or confused. Often I slur my speech and can’t write or talk properly during and for a while after these events.

My neurologist thinks it’s something to do with a gaba/glutamate issue but in all of the literature and even forums about FND I’ve never seen a single person say they have the same issue. I’m at my wits end at this point because there seems to be nothing to do other than avoid hundreds of foods and never be able to eat at a restaurant again lol.

It’s honestly the “aura” sensations that bother me - the movements/jerking/tics/eyes rolling around arent actually my biggest problem - it’s “feeling like I’m having a seizure” all the time that has my quality of life essentially zero lol. I often just have to go to sleep for hours after one of these attacks - it just sucks all the energy out of me.

I guess I’m wondering if anybody else has anything like this issue?

So for context I was diagnosed with FND after getting an unexplained stomach bug in mid 2025 that ended with me losing 30lbs and being unable to eat most foods. About 6 weeks into starvation my “tremors” randomly developed into full body convulsions and uncontrollable jerks, vocalisations, tics, auras and hallucinations etc. Haven’t ever been offered an EEG but it seems like it’s off the table since my symptoms don’t seem consistent with epilepsy according to docs.

Anyway from doing my own research I’ve found out that my symptoms only happen in the hour after I eat a food that’s high in free glutamate (so MSG, soy sauce, tomato paste, mushrooms, spinach, essentially hundreds and hundreds of foods and additives I’m no longer able to eat). Basically all the stuff that has umami flavour it seems. Even accidentally eating a few mustard seeds in a sandwich or a single piece of chocolate will set me off into multiple days of feeling as if each side of my brain is disconnected and that one eye is higher than the other/one side of my body is bigger than the other and severe sensory disturbances, Tourettes style tics and vocalisations and seizures like that. My neurologist thinks it’s something to do with a gaba/glutamate issue but in all of the literature and even forums about FND I’ve never seen a single person say they have the same issue. I’m at my wits end at this point because there seems to be nothing to do other than avoid hundreds of foods and never be able to eat at a restaurant again lol.

I guess I’m wondering if anybody else has anything like this issue?