Reply to dancer mom

I really appreciate your consult with your source and sharing the info with me. And your caring about me.. i imagine my symptoms sound and are alarming. It doesn't sound like most ataxia people have it to to the extent i'm having it--is that your impression? Do people get what i'm getting where they can't get off their back and they don't remember how they got there and they don't know where they are or why they can't get up or what's wrong?

I had another episode this morning. i would say it was a little worse, which is to say, really terrible. :( Tonight i'm going to stay up all night and i'll eat throughout the night, hoping that will keep my blood sugar high enough. The low blood sugar, which is chronic and pretty extreme, is no doubt damaging my brain, and the medications are too.
I agree i need a consult/treatment with someone who would have knowledge about the different medications and their effects. It's actually complicated and although my doctor is an expert at helping people taper off of meds and was recommended by the Betty Ford Center, his answers to my questions indicate he doesn't know the kind of detail i'm asking. I don't know if anyone knows these things or how much it's been studied. I talked to him yesterday, told him what happened yesterday morning (he also knows about the previous two episodes), he said "that's weird," i had called him to ask about going off the meds cold turkey, it's not a very big dose, he was very against that, he noted the ill health effects of the cold turkey approach. i said i suspected the meds had something to do with the episodes i was having in the morning, and he said "..and you are tapering off them." It's a pretty fast taper. However, i'm worried and don't believe much is known medically about the effect on the body of withdrawal of a medication the body is used to, one that effects neurotransmitters as these do.
The first one of these episodes i had was 3 weeks into tapering off one of the two sleep meds i was on, i was tapering off Lunesta 3mg. The other one was Ambien. I cut 1/4 pill off the Lunesta and i waited a month before a cut another 1/4 off. i waited about 2 weeks until the next 1/4 cut. And then i waited one week until stopping the Lunesta, on 2/27/14 A few days later on 3/2/14, i had the second episode of the ataxia. Lunesta has a short half life and is eliminated from the body fast, so by about a week later it was pretty much gone from the bloodstream. i was going to taper off the Ambien next but then got worried that reducing the meds might be causing my brain to do weird things. Both of the first two episodes of ataxia occurred during the Lunesta withdrawal process. So, that's why i sought out the addiction doctor. I hoped he would know about things like that.
The doctor recommended switching from Ambien, i was on a fairly high dose, 27mg a night, in two doses, to Valium 10mg. The Valium seems much stronger than the Ambien, i had a tolerance for the Ambien which i don't have for the Valium, so Ambien didn't have a very strong effect. The 10mg Valium had such a strong effect, i slept all night, which was great, but then, i also had a bad hangover all day, not great. My doctor then advised cutting down 1mg Valium at a time every 7 days, so i went down to 9mg. That was not as strong, either for sleep or for the hangover, milder. Then the next week i went town to 8mg where i am now. The first few days i had some sleeping problems on the 8mg, but i was so determined not to increase the Valium because of the awful hangover that i took some Ambien--not nearly as much as i was taking before, about 10mg, and that got me to sleep and then i slept ok. That happened a couple of times, not every night. I am wondering now about whether combining medications has worse effects than not combining because i had no ataxia during the 2 1/2 months i was only on the Ambien. I did not have any ataxia when i was just taking the Valium. But when i combined it with Ambien, i did. Maybe just a coincidence. i have vowed never to mix again, sleep is not worth the risk.
I had no warning of the one that came yesterday morning.
I had a plan--i was going to wake up early, i seem to get the ataxia in late morning, although who knows because i don't remember what happened before ending up on the floor. But i was going to get up early and not go back to sleep, and i had protein bars placed around my room, next to my bed, and in other places, and i was going to eat them if i had ataxia.
This morning i woke at 7, no ataxia, at least not that i noticed, i seemed fine and normal, although i did not get out of bed. I did not think to eat the protein bar because i was going to get up and eat my usual (healthier) breakfast. But then the next thing i knew, i was laying on my back on the floor next to my bed. It was hours after waking at 7. I was so out of it, i didn't know what was going on, and that was true yesterday too, i didn't know i had ataxia, i didn't know why i couldn't get up. Today was at least as bad, maybe worse, i couldn't get up. And my ideas of what was happening made no sense, although they were all i could think of. It was worse than yesterday, i'm realizing that as i'm remembering these things. Yesterday i wasn't making sense either but i had more understanding than i had today I didn't have these mental symptoms at all the first two times. These are so scary. Does ataxia ever have mental symptoms, where you don't know why your body isn't working, no coordination, you can't say to yourself, "This is the ataxia?"
After some time, struggling to get up. i made it up onto my bed, and then i saw one of the protein bars, and so then, i remembered i should eat it. I ate it. I couldn't tell if it helped much. I have read that with hypoglycemia, if it's really low and if it's low for long enough, it takes some time for things to return to normal. But i was able to walk.
The endocrinologist insisted i should see a liver doctor, so tomorrow i have an appointment with a iiver doctor.
I may stay awake all night tonight and keep eating throughout the night so i won't have this thing happen again, hopefully.
If i wasn't living alone, it would be a whole different thing, i wouldn't be nearly as worried because my daughter could check on me and she could help me, all i needed was someone to get me to eat.
Thank you for the info about UCSF I do not feel stigmatized. That's the least of my problems right now. Unfortunately i'm in Los Angeles, about 500 miles away from there. Does your source know of any good resources in LA? UCLA is down here, and maybe other programs, but that would be one that would take Medicare, which i just went onto in April when i turned 65.
I looked up the Addiction Psychiatry program at UCSF, it sounds like their training module in "Treatment of Complex Populations" is what i need, it includes patients who have "co-occurring disorders." I wish they had a phone line where i could just call and consult with someone on the phone.
Anyway, my only family is my daughter and son in law (i think i already told you), they're in Oakland, which is virtually in San Francisco, my daughter went to UCSF for a laparoscopy last September. And i am planning to move up there eventually. but am no where near ready now. I am planning to go up there for their baby's birth, which is due 7/2 but might be sooner. But they don't have room for me in their place. They might have to though if i can't get some kind of medication to treat low blood sugar or something. What a mess.
I realize i need to see a neurologist and i will ask the liver doctor tomorrow for a referral or two.
I really appreciate your support and this valuable information. I hope you are doing OK and things are going well with you.

Hi Judy,

Well I am not a Dr. so I can't tell ya about you but I can tell ya about my experience and maybe that will help shed a little light on things or maybe not, I don't know.

I was tapering off all my meds then got very impatient and just stopped all together. I wouldn't recommend doing that. I went through withdrawals and was flat on my back for a few months. I'm told I was very lucky that I didn't create more problems by doing that. If I had it to do all over again I'd wean off slowly. I was told to every few weeks like 3 or 4 to slice off by 1/4 amount.

I eliminated refined sugars, Gluten flour and preservatives. I believe this has helped my ataxia to where my foods can work like meds because I am off meds.. I really think when I was on medication I had allot of side effects. I really think sugars are extremely bad for anyone to have in their diet. But they are so addicting and in everything processed, in a bag or box.. Dr's are finding that out more and more how bad refined sugar really is which they didn't know before now. But that said some people need to take some meds for a while or forever to help them.

Yes I have also gone to UCLA and have to travel 6,7 or more hours depending on traffic just to get there. They have an Ataxia clinic there under Dr. Perman. But I also have help. Be patient with yourself.

Have you gone to a Nutrionist yet? I think knowledge is power.

Hi Jeannie!

sounds like we are on some same pages. I used Valium for sleep for probably close to 20 years, no tolerance really, stayed around 10mg, would skip days, just took it for sleep. Then, some environmental conditions made sleep a much bigger challenge, needed sleep for intense day job which included a lot of driving, took more Valium. Over a period of some weeks, it was more and more Valium, i didn't know anything about tolerance back then, it was 1993, no internet, so i thought something was wrong with me, my body, and that's why the Valium eventually totally stopped working, i was up to 30mg for a few days and it wasn't getting me any sleep so i thought, what's the point? i just stopped. I had never heard of tapering, i thought you just stop and go through withdrawals and then go on with your life. That's basically what happened. it wasn't bad. i was already under herbal treatment with a Chinese doctor, maybe that's why, but only the third and fourth day were very intense,it wasn't so bad, i was on vacation from work, two weeks, but i functioned, i had my 9 year old daughter, i bought a lot of TV dinners and ready made food. The worst of it was over by the end of the 4th day. After that, scattered symptoms, over in another week, only problem was i was not sleeping so much. i was really happy to be off the Valium though, i thought it was poisoning my liver. So, my doctor prescribed Ambien, he said it was pretty mild. i didn't want to take it, but i did on occasion, for the first couple of years, now and then if i didn't' sleep much for a few days in a row, though sleep continued to gradually get better, very slow progress but it was progress. But in time, i was taking Ambien more often and then pretty regularly, still only 10mg. I started taking it in 1993. Until 2011, i was still taking 10mg and sometimes would sleep without it for several days in a row. 2011 was different, life conditions changed, rough times, especially for sleep, i moved, farther from work, bad commute in gridlock traffic at the end of a long day. Before that, if i got 5 hours sleep, which was normal for me, that was ok, i didn't feel tired during the day. But when i was driving home on the stop and go freeway, i would nod off while driving, in the middle of the 405, it was not good. By experimenting, i found out i did not nod off if i got 6 hours sleep so i started taking 5mg Ambien around 5 or 6 in the morning and would sleep another hour or so, and that was fine. After that, things got worse and worse, i was taking more, got tolerance, started taking Lunesta, that worked better until i got used to the Lunesta. Then i added the Ambien back in and was taking both. Then i retired, i though i would just go cold turkey off the Ambien and Lunesta, it worked well with the Valium so it seemed like the right thing to do. But then i found the forum website Benzo Buddies and read lots of horror stories about cold turkey, like you described, so i just was at an impasse. I didn't see how i could taper, i was on two meds and taking two doses a night of one of them, it was too confusing and i wanted to sleep anyway, finally i could sleep more because not going to work. But i got tolerance of the Ambien so i was taking more and more over time. i got up to 27mg, plus 3mg Lunesta. I tapered off the Lunesta 1/4 pill at a time, at first slowly, a month,and then 3 weeks, and then 2 weeks to the last quarter pill, and then one week to stop Lunesta. Hey, i was taking all that Ambien, i could still sleep, it wasn't hard to do, i was sorry i put it off so long. So, then i was just on 27mg Ambien, 17mg at bedtime, kept me asleep about 1 1/2 hours, then i would wait until about 4am and then take another 10ng and would get another couple of hours of sleep. i really wanted to get off it, but i had the first ataxia episodes during tapering off the Lunesta and i worried that reducing the meds could cause some kind of brain chemistry chaos. Then i found this addiction doctor who came highly recommended and in my case, with my meds, the amount i was on, he recommended that i stop the Ambien and start 10mg Valium. i hated to go onto a benzo, but i had so failed at quitting Ambien, i needed help, and i know that is a common treatment to taper off of short acting meds, so i did it, the Valium worked really strong, i didn't miss the Ambien, though i have taken it a couple of times to get to sleep when i cut down the Valium and didn't get sleepy. Anyway, i started at 10mg. He recommended going down by 1mg every 7 days. We renegotiated that and now the plan is 1mg every 4 days, but it's not hard and fast. It's flexible. my 4th day was Monday but i didn't go down to 7mg until last night. I don't have any noticeable withdrawal symptoms other than sleep adjusting to the dose reductions. It's not like i've been on Valium a long time or taking a high dose. I'm not happy about being on Valium because it has such a long half life, no way to know when it will be out of your body, it'll be a while.

About sugar, i'm with you on that too. Back in '94, i started working with a very special nutritionist, she gave me some simple diet guidelines, one thing was constant, no salt, no sugar. No sugar meant no honey, none of those sugar things, none of the foods that have it in them, as best you can. Also no wheat and not much fruit, it had meat, fish and beef, no chicken.

After doing that for a short while, i started feeling better and better, i have hepatitis C and i used feel really wiped out a lot, that's why i was glad to get off Valium, can't be good for the liver. After being on that diet, i started feeling better and the longer i was on it, the better i felt. Clearly a lot of foods in the normal regular diet are toxic and weaken the body to various degrees, depending on the individual.

Anyway, so you must be getting some good results from going to UCLA to make such a long trip. Is it worth going to them, do they have something to offer that a doctor in private practice doesn't have, when you work with them? Do you have a diagnosis, i mean, do you know what's causing the ataxia?

Right now, my strongest theory about my ataxia is that the Ambien and Valium and Lunesta that i've been on for like 40 years, have saturated my poor basal ganglia, which is filled with GABA receptors, which those drugs are targeted at. I just learned last night that the basal ganglia has a role in glucose regulation and according to this study i was reading, "Zolpidem (ambien) reduces cerebral glucose metabolic rate in the basal ganglia and limbic structures." i'm not sure what that means but i think it supports my theory. it doesn't sound good. It also says "Zolpidem reduces regional cerebral blood flow in the basal ganglia and insula." Can't be good.

About a nutritionist, i need one. I went to the one i told you about, transformed me life, set me free from illness. This is the first time i've been sick since the early 90s with this ataxia thing--not just ataxia but low blood glucose that is so low i now realize the past two mornings i have woken up from being comatose--at least i think that's why i can't remember how i got on the floor and was very disoriented, didn't' understand what was going on. Last thing i remember it was 7am and i was planning to get up. i thought i felt ok, i had some food there by my bed but i decided i didn't need to eat it, i would go and make breakfast. That's the last thing i remember. This is so freakin scary. when i woke up in that disoriented state i had pretty much global ataxia, i couldn't make my body do anything. i wanted to get up but there was no way. But after a while , not sure how long but maybe a half hour, maybe less, it started improving and i wanted to get up and put my pants on, get some underwear from my drawer so i got onto my bed in front of the drawer. i don't know why the condition would improve like that, i hadn't eaten anything yet. Anyway, then i was able to clumsily walk to the kitchen and make breakfast.

This had happened two mornings in a row, so i was afraid to go to sleep last night. I decided i would stay up, despite taking the Valium, i don't think i felt it, i had things to think about. And i ate right before i went to bed which i never usually would do, and i brought food with me to bed, and around 3am or so, i had some whole grain rye bread, a few almonds and a little bit of apple sauce. I felt secure that i was not going to have some low blood sugar thing and go into a coma, the food got glucose to my brain, and also, i was testing pretty high on my glucose monitor yesterday. Later in the morning, i decided it was time to get up and i ate some more, more rye bread, a soft boiled egg and a little more apple sauce. I took my sugar reading thing and it was 78. I never have it that high in the mornings regardless of eating. i can eat three times and it will still be low. So i need to eat more often and maybe i will have to wake up in the night and eat, not sure.

anyway, thanks for reaching out. i appreciate hearing your similar experiences. I don't know how much benzos you took for how long but that article i quoted above also addresses benzos effect on neurological stuff and symptoms. if you want me to send you the link, let me know. take care

Hi, Judy, I will look into some places in Los Angeles for you. Continue keeping a diary of episodes with possible triggers, and keep communicating with your doc. Keep us posted as you continue tapering off of the sleep meds. We are rooting for you and hope these episodes subside.