I will introduce myself here. I will copy and paste from my profile message and add some more things i want to share that there wasn't room for, and ask if anyone knows anything about any of these things.
here is the story from my profile:
I have had three episodes since January. Each is worse than the one before. Each happens in the morning on or during waking. First episode, late January 2014, relatively mild (i fell twice when walking to the bathroom first thing in the morning and then was more careful walking, i was unable to type, unable to coordinate making breakfast). This episode ended when i made some instant oatmeal (unsweetened)--the symptoms rapidly went away in a few minutes.
second episode, March 2, 2014, much worse than first episode, woke up falling from my bed to the floor, unable to use my arms to break my fall. Could not get up, could not walk. i had peed on myself but didn't remember doing it. i remembered the other time when eating something cleared up the symptoms. I drug myself to the kitchen and ate a piece of rye bread (it was on the lowest shelf, i could not get up). The symptoms rapidly went away and i could get up and walk and i was fine, better than after the first episode.
Third episode, May 28.2014. I woke up in the morning, laying on my back on the floor, not remembering how i got there. i was unable to get off my back, i couldn't roll over, and i was disoriented, i didn't really know where i was at first. Beginning to figure things out came very gradually. i was laying near the foot of the bed, which is not near the part of the bed i get up from, but i don't remember how i got there. I could not pronounce words clearly. I couldn't control vocal sounds. I was calling out for help. even though i live alone. I had peed on myself but i don't remember that. Gradually i figured out that i was in my room. The door was closed, ii couldn't reach the door knob though it was only 2-3 feet away, i was helpless. But eventually, i was able to sit up, it probably took about 15 minutes or more, but these symptoms were improving a little. I remembered the other times when eating helped but the kitchen seemed impossibly far away. Eventually, i crawled to the kitchen and ate a piece of rye bread. Not as fast as the other time, but the symptoms steadily went away, pretty quick. I could get up and walk, but i was still unsteady and my head was bleary. But this got gradually better throughout the day.
Because eating cleared up the symptoms the first time in late January, and then, in late February i had routine blood work which had extremely low blood glucose (my doctor emailed me at home to ask how i was feeling the next day because it was so extreme, it was 32Mg/L. The lowest amount on the normal range is 65. When i emailed back that i was feeling normal, he decided it must've been a lab error because people don't feel normal with numbers that low, or even higher than that.
5 days later, i had the second episode of ataxia in early March, much worse than the first. Eventually i was able to get to the kitchen and eat something and the symptoms quickly went away. Has anyone ever experienced a relationship of ataxia to eating? or to fasting. like over night?
At that point, i knew that the very low blood glucose level was not a lab error (the lab had printed the word CRITICAL next to the number).
i emailed my doctor the whole story of these three incidents--the two ataxias and the extremely low blood sugar (i am not diabetic). We agreed i should see an endocrinologist. I also started eating 5 meals a day, small meals, with protein and complex carbohydrates, which is what i'd been eating since the 1990s anyway. i did feel better after doing that for about a week, but it might have been caused by something else that happened around the same time.
Anyway, I searched google for hypoglycemia and read a lot of stuff, but i didn't find anything anywhere that sounded like what happened to me.
I saw the endocrinologist. Before i did this, i dug out all these old lab tests i collected over the years, going back to the 80s. I had hepatitis C, initially undiagnosed (because the diagnosis hadn't been invented yet, there was no test), so i had my blood tested at least three times a year usually to keep track of how my liver function was doing. As i looked through these over all these decades, i saw that my blood glucose was always normal. i had never paid attention to it before
But in 2006, i got a low one. The lab wrote that there were some contaminating cells so it was never brought to my attention (btw, i had stopped worrying about hepatitis C back in the mid 90s because i got into this holistic nutrition thing and lifestyle thing, and it transformed my life, i felt awesome, all the time, better than i'd felt in my whole adult life, and to some extent that continues even though i have been somewhat off that lifestyle for some years now.)
Anyway, between 2006 and 2014 i had 6 blood tests. On those tests, 5 out of 6 of them had low blood sugar results, some really low. most just mildly low. but still, they had always been completely normal before. And those were not fasting blood tests either, i did them mid day. Looking back, i know that it was around that time, around 2006, when i first started having some hypoglycemic symptoms, pretty mild and i could avoid them by eating lunch on time. i never woke up with them, despite going all night without eating. But i did become very tired around that time, I'm sure now that it was related to the low blood sugar
So, i don't think low blood sugar is a recent onset thign. But i just read in a research abstract on google that .
"….Conclusions Repeated MR images revealed specific lesions in the bilateral basal ganglia, cerebral cortex, substantia nigra, and hippocampus, which suggests the particular vulnerability of these areas to hypoglycemia in the human brain.…" (i think this research was done of cadavers who had been stroke victims)
My attention had already been drawn to the basal ganglia before this, because of another factor that i am wondering about, in case it might be related to my episodic ataxia---For most of the past 45 years, i have used various sleep aids. It started out being marijuana in the late 60s when that stuff was popular. It was great for sleep.
I guess tolerance must've developed, i don't remember, but in the mid 70s my then doctor prescribed Valium for sleep. I continued to take that until 1993 when i got a tolerance for it, it didn't work anymore, so i just stopped taking it, went through some brief withdrawal symptoms for a few days, all neurological, and then was fine, except sleeping was a challenge.
I thought it would take a long time, but i had a really intense full time day job, i was a public child welfare social worker, child abuse and neglect, and i was a single parent of a 9 year old, and i complained to my doctor about the sleep, although i was so HAPPY to be off the Valium and not wanting to be on anything else. He prescribed Ambien, he said it was short acting. I used it only as needed, like, if i didn't sleep much for three days, then i'd take it but over time, it got more and more habitual.
That started in 1993 and i am just now in the process of getting off it. I went to a specialist doctor who helps people get off this kind of medication. The method he uses is to switch you from Ambien or other short acting medication like that, onto the very long acting Valium. So, with misgivings, i did what he said, i needed help, i switched. It worked. I went from 27mg Ambien a night to zero, and switched onto 10mg Valium and then, the next step is to start tapering off. So, now i'm down to 8mg Valium and tonight i'm going to go to 7mg.
The reason my attention was drawn to the basal ganglia, about month ago, is because i was researching ataxia and ambien, and i was thinking this is cerebellar, right?, because it involves motor control. But something i was reading said that the basal ganglia is filled with GABA receptors. I'm sorry to use terms that may be unfamiliar but i don't know what the synonyms might be, and i don't understand the meanings of them myself, but this is just to explain why i have gotten interested in the basal ganglia part of the brain--because Ambien and also benzodiazapines affect GABA receptors, that's how they work. GABA is (i think) i neurotransmitter, and GABA is involved in just about everything our brains do, and if they get messed up, there will be symptoms.
The basal ganglia is a part of the brain that affects motor control. What i read is that basal ganglia is filled with GABA receptors. And Ambien that i've just taken for 20 years, and Valium that i took for about 20 years before that, act on the GABA receptors. They are GABA agonists. I do not know what that means, i just keep seeing that term when i read about this.
Anyway, since i've been saturating my brain with these chemicals for so long, i am suspicious that the meds may have something to do with the onset of ataxia. Just wondering if anyone has heard anything about a connection between any kinds of medications and ataxia, anything hat can cause it or create a risk?
i did read today about MSA which i'd never heard of before. Apparently the most common symptoms of it are urinary issues and ataxia?
I'm sorry this is so long. I've been living with it by myself since January. Because each of the three episodes i've had has been worse than the one before, i am fearful that this is rapidly progressive. I don't have any medical advice on this. The endocrinologist said it didn't add up (endocrinologically) and he said he suspected the liver might play a role because of my hepatitis C diagnosis, and he advised me to see a liver doctor. I was skeptical about that, but i have made an appointment for Friday. I will ask that doctor for a neurological referral.
i am not confident in doctors and medicine based on past experience, in fact, i'm scared of them. i didn't start out that way, i saw them as a source of help. But then i had some experiences over a period of many years that killed my naive ideas about what they can and can't do, and i have become fearful of some of the things they tell you to do which are harmful and don't do any good. i don't want to be a guinea pig.
I currently don't have a holistic healer to work with, the one who transformed my life just died a month ago in her late 80s. I am searching. I hope i survive this ataxia because i was so helpless laying on my back on the floor today, i couldn't do anything, nothing, i tried reaching for the door knob but i just couldn't do it, and i was crying out and peed on myself before i became conscious, and i was so helpless, if i could've been able to use a phone, i probably would've called 911. What if it's worse the next time? What can happen? Not good to live alone under these circumstances.
My daughter and son in law who are my only family live 500 miles away and are expecting a baby in early July. and are having some problems with the pregnancy so they can't travel and i don't want to try traveling until i get off the Valium and put that behind me, it's hard enough without the stress and dislocation of traveling . But so far, reading the few posts i've read on here, i haven't found anyone else reporting the severity of what i had--not that i wish that on anyone but i guess it would be helpful to find someone else who has had this. I did read a post by someone named Kimberly in 2011 who's husband died of ataxia three months after diagnosis. but she didn't say what symptoms he was having.
I am sorry this is such a long post, i don't expect anyone to still be reading, but i am glad you guys are here. i just found you while googling various search terms to try to get a handle on what is happening to me. No doctor i've talked to so far knows what it is or what's causing it, and one said "That's weird," and another said "It doesn't add up." I would rather hear that than arrogant wrong opinions. (i welcome humble wrong opinions or guesses). i guess a neurologist would be the next logical thing but there are doctors and then there are doctors. i want to find someone with a humble mind (not a rigid "Do what i say, don't ask questions, don't question my advice")
Anyway, thanks for being here
One other thing--I am in the Los Angeles area, San Fernando Valley, if anyone has any medical referrals.