I have had severe vestibular migraines (at least thats what we think it is) for about 20 years. Some days are ok but I always have an off balance cloudy head feeling. I have tried all kinds of exercises, medications, etc but the ONLY thing that touches it is Klonopin. I sense I may get some pushback for this because I know that a lot of people don’t like benzos. It is literally the only thing that helps and without it I would spin out of control. I have tried not taking it or coming down (Im on 2mg) but it is truly unbarable. Not jsut the vertigo but the ehad pressure and brain fog. I literally couldn’t spell my own name in that state.
I guess my point of writing this is to see if other people have been on benzos long term and what your thoughts are. The way I look at it is it is you do what you need to have the best quality of life. Without benzos I would probably be suicidal. It’s hard to argue against that
I do know that I may be making things worse for myself in the long run, but I think that ship has sailed and I am already screwed. I don’t know can anyone relate to this?
Thank you for sharing your story, I just so happened to log on and seen your post. My name is Jenn I live in Western MA, My doctor has placed me on Nortriptyline and like you, I have tried everything from diet change to Acupuncture and Physical Therapy and nothing but this medicine works. I have changed the MG of the med several times, from 40mg to 10 mg now as I have just had an increase in imbalance issues over night I am on 20mg and I am able to get a good 4or 5 hours during the day where I can drive or clean my house not both, too much activity. I asked my Dr to let me try a new med however, he asked me to do one more increase and this is where I am at now.
I have had this for almost a year in September I could not imaging what it would be like to have it for 20 years. As a Vestibular Migraine sufferer, I am so sorry you have go through this for so lone. I hope you can find some rest from the brain fog and your symptoms, just take it one day at a time as I do. You are not alone in this battle to be free of the dizzy and imbalance.
Jennifer
It’s really interesting how different medications end up helping with chronic dizziness, especially when dealing with vestibular issues that seem resistant to other treatments. Finding something that actually brings stability without overwhelming side effects can feel like a game-changer after trying so many different approaches. Thanks for sharing the insights and experiences on this definitely gives a lot to think about when managing symptoms!
> Benzo's