Hello all,
Had an appointment with my doctor today. I am completely off all medicine and my doctor wants to relax on that for a while. I must admit I feel stuck and that makes me anxious. I’m at the point where I still feel constant motion all of the time but I do believe that I can feel better and be better! However, I am just not sure what medicine or what supplements or what lifestyle to move forward with. It makes me nervous to not be on any medicine but maybe I can also use this time to try some supplements on my own. I don’t want to give up on myself but I feel like I’m suspended in a space of where I am and where I want to be.
I’ve tried:
Amitriptyline
Noritriptyline
Effexor
Any thoughts, insights, or uplifting words would be wonderful. Thank you for listening.
Hi Camille,
Don’t give up. We’re here for you.
I’m also off all meds at the moment, though I’m still on Vitamin A, CoQ10, Magnesium and a refined form of butterbur. I find it both liberating and terrifying. I’m dizzy with visual symptoms much of the time, though they are far better than they’ve been even recently. My headaches and migraines I’ve mostly got under control, for now anyway.
I’m not purporting to tell anybody how to live, and I don’t know what works or might work for you. For myself, I’m trying a nutrition based approach. It allows me to control something on my own and experiment to see what works best for me. It’s much harder and requires much more mindfulness than taking a pill or two, but it has the benefit of no side effects and I can add a new med anytime. The next three on my list are the ones you’re done with. Topomax curbed the MAV, but it wasn’t worth the side effects.
So far, I’ve found that if I stick to the Stanton Migraine Protocol, which is basically a low carb ketogenic approach and work to balance my electrolytes, I can arrest most headaches and migraines and keep the rest of MAV to a functioning dull roar instead of full disability. Combine that with not spending all my time looking at monitors and getting some exercise and there are more and more periods of time when I forget I have MAV. I’ll be managing it everyday for the rest of my life, but at least I have hope that I can manage it.
This is a journey. Don’t despair.
Emily
3 Likes
wow…you just decribed how my best moments look like
1 Like
Hi Camille,
I think VRT can be super helpful for constant motion. When i was on a time table of VRT exercises the constant motion thingy stopped. Once i stop doing the exercises this creeps back. I think the VRT is a like an exercise for the vestibular system. Kind of like squats and bicep curls you need to keep working it to stay fit.
@flutters
Hello Emily! I resonate with your post a lot right now. It is both freeing and terrifying that I am off meds for now. I am happy though that now this will allow me to experiment with supplements and diet. I have been eating well but plan on continuing that and I’m hoping to add some supplements.
Aside from the feeling of constant motion, I also feel like there is a barrier between me and the outside world. I think it’s similar to describe it to brain fog but not sure. Do you have this or have you tried and supplements that make you feel more clear and centered?
Please let me know and please keep me updated with how you are doing.
1 Like
@GetBetter
My doctor was talking about VRT but I don’t know how it could work for me unless I try. I have had a test that told me that I can compensate pretty well so I don’t know how much VRT would help me.
1 Like
Hi Camille,
Yes, brain fog is definitely part of my world, though I find I have much less of it when I avoid simple starches, sugar and alcohol. If I could just figure out how to get rid of more or less constant visual vertigo and increase my mental stamina, I’d be at peace with MAV.
I take two supplements which may or may not be available outside the US. Both are mail order from Linpharma. One is a standardized version of butterbur with the liver toxin removed called Petadolex. The other is a migraine specific multivitamin and mineral complex with clinical trial levels of magnesium, coenzyme Q10, Vitamin A and others. It’s called Dolovent.
I guess I should mention I’m on the beta blocker atenolol and an anti-androgen/diuretic called spironolactone. I’ve been on both for years to treat complications from PCOS. I’m on Vitamin D, too, because everyone in the rainy part of the Pacific Northwest is deficient.
Emily
Atenolol can work for VM as well.
I’m certain that’s true for some. I’ve been on atenolol for at least twice as long as I’ve had chronic VM.
I did VRT once and felt super nausious afterwards. Am I supposed to feel that way? I couldn’t add another level of dizzy to my aleady dizzy brain. Is that normsl at the begining? Would this go away if I worked out more?
HI Camille
for me, starting on pizotifen made a huge difference. i didn’t like the antidepressants (they made me depressed!), but pizotifen quite quickly took me from being in a hell of constant motion to being mostly having to sense of motion on most days. i went from hardly leaving the house to driving my kids to the beach etc in a couple of weeks.
i don’t know where you are, so i don’t know if you can get pizotifen (not available in US i think??) but from my personal experience i’d recommend it. it also killed my anxiety stone dead (i think you suffer from this too?). i went from constantly thinking i was dying to really not caring about too much. side effects: tiredness and some weight gain/hunger. i kind of felt warm and fuzzy on it and quite sleepy to start with, but soon ‘normalised’ 
1 Like
Hello ,
I can understand the anxiety feeling you have. I have that a lot. I hate being alone with my vertigo because I have blacked out before. I wonder if these meds are working anymore on me also. My vertigo is so bad anymore I don’t know. My migraines are so so now. I go back for a recheck tomorrow to the doctor. I have had injections in my neck with prednisone that did help but in the beginning they make you feel like crap. I’m on vitamins and I use essential oils and diffusers to help. I also do yoga for exercise and to relax. For meds I’m on verapamil Er 180 mg in the morning. I take Topamax 100mg and Amitriptyline 50mg at night. I have Lidocaine cream to numb my neck nerves. I just don’t understand why I still feel like crap. I haven’t driven for over a year. I do feel better knowing I’m not the the only one, but it doesn’t make it better. I wonder if my ovaries have anything to do with it. I’m 40 now and had a hysterectomy 6 years ago, and at one time my neurologist thought it could be hormones. Keep hanging in there.