Hope for Newbies

Hello fellow dizzy people! I was chatting to my lovely friend Missmoss today and we were both saying how dramatically different life is now in comparison to when we were first dizzy. I will have been dizzy 24/7 for 2 years in July. In the first year I absolutely despaired of ever being normal again. I had severe attacks along with a pretty grim baseline. I had flickery, flashy vision, severe head pressure, light sensitivity and killer fatigue. I lived between 30 and 50% of normal. I trialled propranolol, nortriptyline, gabapentin and finally pizotifen. I would say my usual days are now at around 85-90%. I still have my lows and get v easily tired, but life is much closer to normal and I’m improving all the time. I jog, go out all the time, handle shopping and cinemas and pubs, and often find I haven’t thought about being dizzy. I know how much it would have helped me to hear this a year ago when I was crying my eyes out on a daily basis! So there we are. Hope this gives someone hope. Xxxxxxxx


Thank you…what meds finally helped the most?

" I will have been dizzy 24/7 for 2 years in July" doesn’t sound too hopeful :frowning:

Did you ever have balance problems/swaying/rocking?

I think pizotifen helped me dramatically. A low dose of gabapentin also helped. Yes I have been dizzy 24/7 for nearly 2 years but its getting so much better, it’s much milder now. I cannot even imagine how I got through the first year. Life is a whole lot better now. I think a big part of improving has been the meds, no doubt but also the passage of time, acceptance that nothing bad is going to happen, however bad the sensations and being kind to myself in terms of exercise, healthy eating, sleep and limiting alcohol. There was a time when all I saw were negatives, I was always cynical that frame of mind could impact on outcome, but a positive frame of mind is absolutely key.

Ps yes defo had swaying and rocking but never actually couldn’t keeps balance.

That’s good to hear…I’m on 900mg Gabapentin now, but it’s not doing much. I understand handling MAV is all about trial and error, and what works for some doesn’t work for all. Gabapentin was only my first, so I’m excited to try other meds when they’re prescribed. I’m pretty sure my doctor’s going to switch me to something else when I see him again on May 20th. How long have your meds been working for you and controlling everything? just wondering. Sometimes I feel like a lot of people find temporary relief with meds that’s all too fleeting and only lasts for a few months :confused:

Also, just curious from looking at your older posts - have you also been diagnosed with or are also combating Lyme as well as MAV?