I have been diagnosed with VN/MAV, and I use my eyes for stabilization during the daytime. But night time is brutal. When I close my eyes, I feel like I am inside a turbulent airplane and that I am about to spin. It often takes me two hours to get to sleep. Prior to getting hit with this condition, I fell asleep within two minutes of hitting the pillow, and I had insomnia less than once a year (I am not exaggerating).
I currently take a small benzo (2.5 mg valium) before getting into bed every other day, sometimes every third or fourth day. It puts me right to sleep and I feel pretty good the next day. I would love to take this every night, but I am fearful of addiction, habituation, etc. Many years ago (19 to be exact) I went through rehab for alcohol and drug addiction and was taking lots of prescription Ativan, and after that I was drug and alcohol free for nearly 20 years before finally giving in and taking the valium for the vertigo. I would be inclined to take a nightly benzo, but I wonder about the risks especially for people who have a history (however distant) of benzo addiction.
I would love to hear about other peopleâs experiences with this, either your own experience or that of someone you know who has this condition.
I too find that when I close my eyes to go to sleep, I experience what I describe as feeling as if I am in free fall. I think your airplane turbulance analogy is more fitting for me though and I will use it going forward to describe this sensation. It is so horrid and something I dread every night. I am not quite as functional as you during the day though.
I wonder if such a teeny dose of valium that helps your symptoms so much at night would also help you greatly if you took it in the morning as well?
I am a physician and I have seen many people responsibly use low doses of benzos without any problems long term. I understand your hesitation, but given your level of suffering it seems like the benefit far outweighs the risk?
I tried Klonopin and sadly it did not help me at all. If it did and gave me my life back (or at least minimzed some of the suffering), I would absolutely take the drug for as long as necessary.
Hi Guys,
Iâd just like to add this, and pray it gives you a little hope for the future.
I too had all these symptoms, perpetually falling backward especially when laying down trying to sleep, and being pushed and pulled from side to side.
The hope part is? that I rarely have that sensation now, it did get better.
As far as benzoâs go, I agree with Lisa that if you are feeling these nasty sensations, itâs worth using regular benzoâs if they help so much.
Itâs Better to be/stay sane and use benzoâs than to lose the plot and be benzo free.
Because itâs a given that you will be full of daily anxiety and depression.
I have tried benzoâs and found valium helps me relaxe and sleep,
But made my symptoms worse the day after taking it, where as temazapame doesnât make me drowsy and doesnât effect my balance the next day.why? I have no idea.
I definitely have an addictive personality it runs in my family, but having said that⌠I had no problems at all with slowly titrating off of valium (due to tolerance issues)
Iâm so sorry you are both suffering like this; I know how you feel and will never forget that falling feeling.
Just wanted to let you know that with time it does go away.
Hey Jen,
Thank you so much for your kind words of hope. It as been many years for me without any let-up so I am not as hopeful. How long did it take for you to notice improvement?
At this point, I would take crack if it would help my symptoms and give me back something resembling a life.
I too find that when I close my eyes to go to sleep, I experience what I describe as feeling as if I am in free fall. I think your airplane turbulance analogy is more fitting for me though and I will use it going forward to describe this sensation. It is so horrid and something I dread every night. I am not quite as functional as you during the day though.
I wonder if such a teeny dose of valium that helps your symptoms so much at night would also help you greatly if you took it in the morning as well?
I am a physician and I have seen many people responsibly use low doses of benzos without any problems long term. I understand your hesitation, but given your level of suffering it seems like the benefit far outweighs the risk?
I tried Klonopin and sadly it did not help me at all. If it did and gave me my life back (or at least minimzed some of the suffering), I would absolutely take the drug for as long as necessary.
All the best,
Lisa
â End quote
It must be hard to be a physician with this disorder. I mean, the medical profession struggles to understand it, so your mind must go down a lot of different possibilities and avenues of testing, treatment, etc. Wow.
As for benzos, when I was younger and went through the addiction to liquor and pills, my state of mind was very different: I had just been through a rough divorce and I hated my job, felt there was nowhere to turn, and basically wanted to be âout of itâ and just get some relief from anxiety. Plus at that age there is something cool about partying and being out, etc. Now that I am pushing 50, with a wife and kids, and a stable job, I have no desire to be âout of it,â in fact I just want to be more awake for my life. So I have a totally different worldview now. I like my life and am not generally depressed, but this condition has thrown me for a loop. I am going to try klonopin for the first time, probably tonight: I was given a script for it last Fall, but didnât touch it since the valium seemed to do the trick. But I heard that klonopin might be better, so I will check it out.
Longshort,
You might want to try a low dose of Remeron. I used to take 5mg (the lowest dose is a 15mg pill, and I would cut it in half, and then shave a little more off) and it would knock me out completely. It also really helped my dizziesâŚGoGonzaga has been taking it lately and it has really helped his sleep. It is an antidepressant, with very low side effects exept for sedation, and it can make you hungrierâŚtruly, you wonât stay awake for 15 minutes before drifting off for a good 8 hours sleep. It doesnât affect sex life and is easy to get off ofâŚinstead of getting into a situation where you are going back to a benzo when you already had an issue there, maybe try this first?
IT works well for anxiety as wellâŚ
Just a thoughtâŚ
Kelley
Benzoâ are the only medication that has ever given me help so that i can work a part-time job (still canât work full-time), go to movies, concertsâŚhang with friends, etc. I only use a very small amount. At night on occasion i have to use a small amount of benzo but i donât do it very often unless itâs a really bad night. I have found other optionsâŚlike taking a St. Joseph baby Aspirin before bed time , sometimes that worksâŚor a 1/2 shot of Baileyâs Irish Creame. Also a good work out at the gym or a One Hour Walk after work hellps. Do a brain-storm and find out all your possible options⌠besides benzoâŚwrite them all down on paper. Try them one at a timeâŚmake a note if they helped or not and the worst scenerio is all the options didnât help except benzoâŚthen if i were you i would stay with a small amount of benzo. Not getting a good night sleep is one of the worst things for MAV. We must keep sane and have a good quality of life!
Hi Lisa,
Those symptoms stopped into the forth year, and after that âŚthey only ever happened when I was in the throws of a migraine and were short lived.
I Feel that the **not knowing **what I had and if it was going to kill me in other words âanxietyâ made my symptoms worse.
The constant falling backward feeling has completely gone, the pushing and pulling only lasts for a few seconds, my 24/7 rocking is more like on a soft ocean now, itâs definately liveable.
Yes me too Manvy , if they said Mav could be treated by cutting half my brain out, I would beg them to do it.
if it would help my symptoms and give me back something resembling a life.