Chronic Motion and Benzos - Plz share

Medication 💊 Benzo's
1

This is how I feel…

CHRONIC, 24/7, never a minute break, of…

rocking, swaying, tilting…
floor jerking, rolling, tilting…
falling thru the bed when sitting on it, bed tilting or floating when laying on it…

…some of you feel this way all the time too, correct??

If you DO, have you EVER taken benzos - in the past or now??

(I took benzos for a long while, and this sensation started shortly after benzo tapering began. It continues to get worse instead of better. I know others who have never had a balance problem before can experience the same in benzo withdrawal; however, I feel that I lowered my migraine threshold when getting off the benzos and that is why I feel this way, have more neurological migraine symptoms, even had a migraine headache this weekend, etc.)

Thanks for sharing,

DJ

2

— Begin quote from “DJDizzy”

(I took benzos for a long while, and this sensation started shortly after benzo tapering began. It continues to get worse instead of better. I know others who have never had a balance problem before can experience the same in benzo withdrawal; however, I feel that I lowered my migraine threshold when getting off the benzos and that is why I feel this way, have more neurological migraine symptoms, even had a migraine headache this weekend, etc.)

— End quote

VERY interesting. When did you start tapering, and when did you finish (if you have)?
My problems got really bad after a three-week Xanax XR period. (2mg a day for two weeks, then 1mg a day for a week to taper).
Second day after tapering down, my log states “more dizziness, extra anxiety, heavy head”.
The day after quitting completely was one of the worst days I’ve had. I was in bed all day, nauseated, tired, weak, depressed, feelings of unreality.
Three days after quitting, I had a dizzy spell while on a regular ol’ walk. Since then, I’ve been increasingly sensitive to visual input, motion, constant nausea, etc. Housebound, can’t do anything, can’t watch anything except perfectly stationary things. :?

I’ve thought about if the benzo is related to all this, but I feel it’s increasingly unlikely to be withdrawal, I’ve been 100% off since June! And, I was only on them for three weeks anyway. Reading your post sure made me think about it again, though!

3

I have the same symptoms DJ describes, 24/7, milder since Zoloft/Neurontin, but still 24/7.

The onset of my symptoms had nothing to do with benzos, but i have lurked on a yahoo benzo group who would insist that you are still experiencing effects of benzo withdrawal. They claim it can go on for a very long time. I did withdraw from Valium 30 years ago and was fine within a few months, healthy for 30 years.

IMHO, I think you’re right, I think the benzo withdrawal put you in a weakened/vulnerable place where your migraine symptoms have surfaced (or exploded). That’s similar to the way I understand why I’m so sick at this time in my life. I had some emotionally traumatic occurrences at a time I was going thru an extremely difficult perimenopause, and then I got catastrophically bad homeopathic treatment - result = 24/7 MAV hell.

Just my thoughts,

Julie

4

I use benzo’s to stop those sensations. I used to get them 24/7 for over 18 months and the first 12 months were without the benzo’s. Now that I am taking migraine preventatives, I still take my valium, but only when I get hit with a dizzy spell that is stronger than I can handle and still be funtional.

BTW, if the benzo that you are taking is valium, I have read that it has a half life of over a month, which means it can be slow to start withdrawal, and probably also slow to end withdrawal.

My point is, is that I experienced those symptoms before I started taking the benzo’s, so the motion symptoms you describe could be caused by either.

5

— Begin quote from “Brian B”

BTW, if the benzo that you are taking is valium, I have read that it has a half life of over a month, which means it can be slow to start withdrawal, and probably also slow to end withdrawal.

— End quote

Hmm no, it has a relatively long half-life, but wikipedia states 20-100 hours. I doubt that any benzo has a half-life longer than at most a week. :slight_smile:
In any case, it definitely has a long half-life. Heck, it’s even used to taper off benzos, by switching to an equivalent dosage of diazepam (Valium). :slight_smile:

6

i was on ativan for 2 years. ended up taking up to 2mg a day, esp the last year of it. started weaning july 4 07. by aug 17 07, the withdrawal was so awful (panic attacks, sweats, jitters, fear, fidgiting, etc), down to 1/3mg a day, that shrink put me on 10mg of valium. ended up taking 8.75 a day for close to 6 weeks, then slowly got down to 5 a day, then he put me on luvox (ssri) for a week or two and then we went 5-4-3-2-1-0 in that many days. on valium for a total of 10 weeks. took last pill on nov 3 07. took luvox for 5.5 weeks total, just to mask valum withdrawal to fight panic attacks.

november was hard - hard to sleep, had nightmares if i did sleep, jumpy, lots of fear, sweats, only one panic attack (guess the luvox did help that some) but valium withdrawal was MUCH easier than ativan withdrawal. at least the acute phase.

let me say that my sense of rocking began a few days after cutting the ativan. it wasn’t 24/7 but very annoying! i think the worst began in december - a month after my last valium and 2 weeks or so after the last luvox. the luvox definitely made the problem worse so i thought went i got off of it i would get better, but it is getting worse. but so are my frequency of colors and blind spots, face going numb, headaches, etc = migraines!!

my symptoms are classic MdDS symptoms, yet i wasn’t on a cruise or a plane (but did get on a pool float on 4th of july and had a bumpy car ride that day), but they didn’t turn permanent and chronic til december.

i had “visual” migraines long before i started taking ativan, which was rxed bc i had a pulling/tilting sensation and felt like i was walking on a treadmill sometimes. now i think i have full fledged migraines - neurological symptoms and pain. soooo many of the symptoms mimic benzo withdrawal, but my doctors do not believe i would have this much withdrawal or have it this long out. however the internet would tell me otherwise as there are support forums for those suffering months and years out!

so i am stuck - is it benzo withdrawal cause that is when it started!? or is it a lower threshold for migraines caused by benzos?!

i don’t want to permanently get back on benzos to find out cause i don’t want to go thru the crap again of withdrawal cause it was and is the worst thing i have ever gone through!

i am “glad” that some of you feel the way i do and have never taken a benzo - or at least not prior to onset. that makes me hopeful!

7

I have tried numerous anti-depressants off and on over 15 years (1992) and no help. Also have been taking Xanex for the same amount of time and that has been my saving grace. This medication helps to keep me more stationary and less Vertigo. At one time i was on a fairly high dosage and strength of Xanex (7 pills per day - 0.5mg)…but in 1999 i began to scale down the Xanex and the last 4-5 years i only take one tab per day (0.25mg)…lowest strength you can purchase. I will admit trying to reduce from 7 tabs to one tab was not easy…but it can be done.

Joe

8

I was put on klonopin by my first neuro-otologist after a severe bout of vertigo that started with BPPV and got much worse with my attempts/and his attempts at repositioning the otolith. He pushed me to take 3 mg/day. I ultimately switched to an otologist, because all he wanted to do was prescribe and never see me. We’ve tried to wean down, and at 1 mg twice a day, I’m pretty stable. I’d like to go down further, but at our last meeting he told me not to. So, I have a third opinion coming up next week. Like Joseph, it’s been a life saver for me: lets me work, but it definitely slows me down,and may depress me. I’d like to figure out the lowest possible dose I can get away with, but I realized that I may be on this low dose for life. Hard to deal with that thought.
Kira

9

Kira,

You know that I’m struggling with the Klonopin issue. I would be very interested to hear what you latest opinion has to say to you, if you feel like sharing it.

3 neurologists have told me they would much rather see me at a regular, low-dose, daily dosing than to be using it PRN. I am just SO resistant to the daily dosing.

Good luck!

Julie

10

Julie,
I will definitely let you know. It’s my long time ENT, who also treats vertigo, and MAV. I really struggle with taking a drug that produces dependency, but I can’t ignore the fact that it allows me to function. Personally, I want to get to the lowest dose that will maintain function.
Kira

11

Kira…after reducting Xanex over many months some years back(very slowly)… until i reached one tablet…i have found that one tab per day helps to maintain function. It certainly isn’t a cure…but atleast i can hold a part-time job and do some activities. Until i find something else…i will stay wit Xanex. Rather to have a somewhat life than no life at all.

Joe