New Diagnosis

All different but we all have the same basic issues, brain fog, vertigo, sickness, the endless fatigue. I try to follow regular meals, drink plenty fluid , don't put off going to loo, avoid all stress , drink very little alchohol, low salt but I can't give up my Latte I enjoy it too much. Little thinks like where you sit at a table if out for a meal, preferably not a round one & sit at the end so you don't have to move your head too much. Avoid bright lights too. I very rarely drive now , haven't cycled as GP said not on hard roads, haven't being swimming but will go in the shallow end though. I did manage to fly to London on my own but I prefer company to travel. Betahistine works for me but 4 steroid injections really helped.

Hi, I am in the US, so we use different medicines (we use diuretics instead of Betahistine), but I wanted to let you know that there is hope that you will feel better once you get dialed in to the right dosage of your medicine.  I had terrible attacks when I first got MD, but once I got on the right medication, things improved.  I was afraid to drive at first, but over time the attacks diminished and I drive now with no fear.  I also live in a rural area (NH) so driving is totally necessary.  It has been 9 years since I was diagnosed.  The vertigo attacks resumed year 7, but were not as wild and scary, and intratympatic steroid injections stopped them.  Most of the time I feel quite normal, do normal activities, but stay away from boat rides, car rides in heavy traffic, and try very hard to get a good night's sleep and not stress over stuff.  Low salt diet is a must too.  Here in US they give us a mild, low dose sedative to take if we feel like vertigo is coming on and that works well.  I only take it every few months, as the attacks don't come much any more.  So please have hope.  People on this panel are helpful and sympathetic, and many take Betahistine and it works for them, so hopefully it will work for you once you find the right dosage for you.

Good luck, Lana

Although I had pretty vicious attacks when first getting Meniere's, once the diagnosis was clear and I was put on a sufficiently high dose of betahistine to regain control I have been able to lead a pretty normal life.

Betahistine takes a month to become effective. The NHS standard dose of 16mg three times a day helped reduce my tinnitus and reversed a bit of my hearing loss but did not stop the acute attacks, so the dose was tripled (48mg tds) and only reduced slowly once I was free of attacks for 6 months. I had a total of 21 months with no attacks but then noticed the warning signs of ear fullness, unstable tinnitus and some mild vertigo so went back on the previous high dose straight away. I needed to increase the dose further to settle things completely and am once again in the 'wean off' phase.

So hopefully with the right dose you will have a similar experience. 70% of sufferers get better.

PS unfortunately there are a lot of 'alternative therapies' being advocated. View with extreme caution!

Barbara you can moan as much as you like. Betahistine takes a month to kick in, I started on 8mg x3 but ENT specialist suggested upping to 16mg x3 which is better. I also take a paracetamol in the morning & early evening. I had several nights of pin prick sensations in my head and got prescribed 3mg x 1 amitriptyline for nerve pain at night. I stopped driving totally for months as I used to walk dogs on my own and once felt ill & had to get my husband to collect me & the dogs , now we work together & I only drive if I need to run the car to the garage or if I am on a quiet country road with no stress.  I haven't been back to the gym yet but reckon it will be ok but will have to be the bike, treadmill, arm crunch, as long as I don't look up or have to lie flat. Take it a bit at a time when you start, avoid big shops & crowds of people especially coming towards you. You will get back to hobbies maybe modified ones but you just need to build your confidence back up.

Hi Barbara,

Welcome to the forum!  I remember feeling very alone as well, when I was first diagnosed with MD.  But when I finally found this forum, it was so wonderful!  I realized that there were many people experiencing the same crazy, insane symptoms as I was experiencing, and all were willing to lend their support.  It was such a relief!  

I'm from the U.S., so we use different oral medications than you do in the U.K.. But a year after I was diagnosed I was finally referred to an otolaryngologist who treats MD with intratympanic steroid injections (also prescribed in the U.K.).  That's when I began to get better.  It was a long process, but they enabled me to get back to an almost-perfectly-normal life again!  I needed some vestibular rehabilitation and balance training in order to get back in shape, but once I had it, I was able to resume exercise and most of the activities I was doing before (I'm still unable to ride a bike, for some reason.) I'm guessing that if you respond well to your medications,  you'll be able to resume your Pilates, gym and dancing.  If you find that you're a bit wobbly and off-balance, you can ask your doctor for a prescription for physical therapy - 10 sessions of vestibular and balance retraining will work wonders.  

So, don't lose heart!  There are answers out there for everyone! And we're all here for you...even if it's just to listen.  Some days, you just need to know that you're not alone!

I wish you all the best!

Take good care,

J-