The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

On this boat diary


#21

Yay, that’s great Lucy!


#26

So…am on 30 mg nortriptyline now. Will attempt the move up to 40 mg next week. I’m still not feeling any side effects, fingers crossed I can carry on moving up like this. Am not feeling much change yet, I find it really hard to tell if I’m actually starting to feel a bit better or if I’m just managing my illness better so that I trigger fewer symptoms. Went into a shop today (for some reason I always feel nauseous in shops, it seems to be the lights and the visual obstacles everywhere) and felt as nauseous and unsteady as usual, which was discouraging, but I’m not going to give in to despair and depression, have had too much of that the first months of MAV.
I would say that one really positive change for me is how I cope, and how I manage the condition. I feel I’ve got the “hang” of pacing myself, staying reasonably active, looking after my son, and doing things I enjoy when I’m lying down to rest. (Even if there are some days I do too much, and then symptoms really ramp up).
I’m resting so much more now than when I became ill at first. (I stupidly thought I needed to stay very active to “compensate,” having watched a lot of videos about vestibular neuritis, but later I learned that I had no inner ear damage to compensate for and that in fact I had been overdoing things; in dr S’s terms, “driving the nail further into my head”). It feels right to rest this much, I don’t feel inactive, it’s just a very different lifestyle from what I’m used to, but maybe we expect ourselves to be always busy and productive nowadays; I definitely did. I manage to go for brisk 30 minutes or so walks and school pick ups. So all in all pleased with these changes. It also helps I don’t have a critical partner’s judgment to take into account any more; I feel like I can listen better to my body now.
Still have moments of intense frustration with the state of my life, sadness, despair, impatience, anxiety… but I keep going and will hopefully start to feel more improvement from the nortriptyline.


#27

You are amazing Lucy! :raised_hands:t3: You really are :sparkling_heart:So proud of you for making such incredible life changes and taking the time to listen to your body… all while caring for your son.
You’re getting there… little tiny steps :heart_decoration:


#28

Light sensitivity and visual vertigo that would be. Both very common MAV symptoms and strong triggers to aggravate symptoms. Have you tried wearing dark glasses and a brimmed hat. Helen


#29

Hah yes the hat and glasses will have to happen at some point if I carry on feeling so nauseous in shops. At the moment my strategy is sprinting in, spending as little time as possible inside, and running back out into natural daylight.


#30

Why not just cover up now and reduce the effects of a known trigger and give the Nori a better chance to work. It was drummed into me from all angles (neurologist, even my GP who talks very little sense about this condition, agreed on this), Trigger Avoidance is essential, a huge part of the recovery strategy. Helen