Hi all,
I was wondering if most people with MAV suffer from pretty severe rocking most of the time? My rocking is so horrible that I can’t even stand or sit still for very long and have to either move a bit to override this motion or lay back. By the end of the day, the rocking is so bad I have to hold onto the sink for dear life just to brush my teeth as the rocking is just so horrible. Even while laying in bed, I often feel the bed moving. I know others have used the word “rocking”, but I was hoping for those that unfortunately have this, if you could describe what this means in terms of your symptoms and daily life.
Thanks so much,
Lisa
1 Like
— Begin quote from “MAVNY”
Hi all,
I was wondering if most people with MAV suffer from pretty severe rocking most of the time? My rocking is so horrible that I can’t even stand or sit still for very long and have to either move a bit to override this motion or lay back. By the end of the day, the rocking is so bad I have to hold onto the sink for dear life just to brush my teeth as the rocking is just so horrible. Even while laying in bed, I often feel the bed moving. I know others have used the word “rocking”, but I was hoping for those that unfortunately have this, if you could describe what this means in terms of your symptoms and daily life.
Thanks so much,
Lisa
— End quote
I d not now but I did after I had my crash in July 2008 and it lasted for almost three months before I started to see any difference. Only after I went on the diet and started going to bed the same time (although at the time I was not sleeping well) and got the stress settled down some did I get some relief and I think the Valium made a difference also.
Now I still get the rocking sensation but it is not as bad as it was last year but it is still under the surface.
Lisa I know it is horrible how long have you been suffering , I am sure you have mentioned it but I do not remember.
Maybe the medication is not working and making your symptoms worse? This is all so frustrating for us all.
My thoughts are with you…let us hear from you.
Hi Lisa,
Happily, my MAV is now pretty well under control.
During my periods of months long MAV the rocking is the one thing there from start to finish (other symptoms come, go and change). It is a very uncomfortable sensation so I can really empathise with you. This year it (along with all the other symptoms) got so bad I really couldn’t do much of anything without feeling sick and awful. As some symptoms settled, the rocking continued (and I still get the occasional sensation that I’m about to fall through the floor or fall over). I learned to “compensate” by holding on to things a lot to steady myself. Last year however the rocking made me feel really “antsy”, I just wanted to move around, I guess with the sub concious idea that I wouldn’t notice the rocking. I also had weird anxious energy so would go to the gym to try and “work it off”.
Mercifully I never noticed the rocking in bed. That’s probably why at my worst I’d stay in bed till mid day! Within 10 minutes of getting up it would all start up again.
Anyway, as I say, now I’m doing pretty well. I’m on a tri-cyclic (Prothiaden). I guess only time will tell if it continues to be effective. Previously my MAV episodes have started out of nowhere (although I think a serious night on the aged cheese and wine may have kicked off this year’s episode) and fizzled out of their own accord after a few months.
I do hope you find something that works for you and that you can get some relief.
Victoria
Lisa,
I experience alot of MOTION and ROCKING…but the Motion is felt inside and around my head. Also…this affects my dysequalibruium. Also with the motion is alot of tense/tightness…like a Squeezed sensation…also in my head. The motion feels as if i just got off an amusement park ride. With the motion, tension and squezzed sensation in my head it is hard for me to carry on a conversation, go to a movie…get together with friends. So believe it or not…a small amount of anti-anxiety medication gives me help along with Verapamil. The anxiety medication is Xanex and it helps to subside the motion and tension plus keep me more stationary so i can work a part-time job. I’m still not able to work full-time.
Joe
HI everyone,
Thanks so much for the responses. I really appreciate your support and honesty as we all struggle with this illness.
Rich, I have been taking clonazepam for about a year and a half when the dizziness started. I did not have rocking until a few month ago and I did not receive this diagnosis until 6 weeks ago and have been on verapamil since that time (6 weeks today actually). I am working with my neurologist with increasing the dose of verapamil slowly as I am very small and have very low bp and pulse (resting pulse 45-50 when layng down). I was wondering how long it took for you for the verapamil to start working? I too have head heaviness along with the constant rocking and I think the verapamil may have helped with that. It has helped with my headaches, but once again, the rocking has been relentless and quite debilitating.
Thank you again,
Lisa
I actually do not experience a rocking sensation. Occasionally I have wave like sensations in my head & I feel light headed and dizzy like I’m going to faint alot. I also have blurry vision on & off throughout the day. I get frequent headaches as well. So I guess it just goes to show you the symptoms of MAV can be as varied as what medicine we need to treat them!
Victoria,
It is so nice to read when someone is actually feeling better. What dosage of Prothiaden have you been on or worked up to?
Stay well and keep us up to date on how you are.
Sally
Hi Sally,
I’m on 75mg of Prothiaden per night.
For the last few days I’ve been feeling really good - like 95%. I’ve even tempted fate the last couple of nights and had aged cheese, smoked meat and red wine (haven’t had red wine since neurologist imposed embargo)! So far, no ill effects.
Prior to the last few 95% days I’d had several weeks of being about 80-90% with some minor but managable symptoms most days.
Thanks for your good wishes and yes, it’s great to be feeling so well. Am keeping my fingers crossed it lasts. 
Victoria
1 Like