I havent posted for a while but here is a bit of an update. After switching from 50mg of amitriptyline to prothiaden due to the side effects of the ami and so I could get to a higher drug doseage I have continued the improve significantly. I am now on the maximum recommended dose of prothiaden (150mg) and do VRT on days where i feel “good”. This time last year getting out of a chair and walking across the room was a challenge and my visual vertigo was completely disabling. Last month I travelled to Australia!!! for 3 weeks and managed to have an amazing time. I even did the sydney harbour bridge climb where I did not admit to having a balance problem on the safety contract you sign before hand. I still have a long way to go and really have to pace myself but getting the right diagnosis and getting on the right medication has given me my life back. Dont expect miracles in a short time though. I started on 10mg of ami in August and have just got up to the maximum dose of prothiaden, so I have been on the meds for 9 months. Progress was v v slow but as I have got up to the higher doses I can push myself more and this is helping me compensate quicker. I was misdiagnosed with uncompensated labs for 4 years and so am entering the 6 year of having a chronic balance disorder but I am now more hopeful of getting to 80-90% better thanks to Prof Luxon.
Hang on in their everyone X
FANTASTIC!!! This is what we love to hear.
I think it’s also important to mention that nobody gets better quickly - all of us who have found dizziness relief had to wait several weeks and usually months for the medication to do its thing.
Thanks for sharing good news, and so glad it’s going well for you!!
It amazes me some times how people expect quick and a full response to medication. The drugs have to dramatically change the biochemistry of the brain and it is also down to the brain feeling well enough to begin compensation. This process is v slow especially if u have been suffering chronically for years like I have.
Thanks so much for posting!
Thrilled that you are getting some great results!
Yes, that’s fantastic! What a difference a year has made, eh? Trust you’ll get to your target 80-90% soon. Very encouraging, thanks for the update.
That is some great news!!! Keep doing what you’re doing!!
That’s wonderful news! I’m thrilled for you. I hope you just get better and better!
as you know, I’m thrilled for you
Really great news. What I really like about your case is that it highlights very clearly how this “uncompensated labyrinthitis” dx is just plain bunk. Labs just doesn’t go on for years causing the sorts of debilitating symptoms you have been experiencing – and yet there is a website devoted to it too! It’s nuts.
What were the side effects you had on Ami? I’m at the 11 day mark on it and it’s just getting worse now. Stomach pain every morning, back and neck ache is off the charts. I tried increasing from 5 to 7.5 mg for 3 days and symptoms just intensified. Maybe I should give prothiaden another shot.
Thanks for posting Becks. I hope to see you in the Success Stories thread soon!
You were in Sydney and didn’t tell us! Awwwwww
That’s great news that you are feeling so good and are able to travel! Austrailia must have been beautiful. Its good to see that people do get this frustrating disease under control. It gives others hope! Thanks for the post.
Thanks for all the replies. Sorry I ha net replied sooner.
Scott: I could not tolerate amitriptyline due to anxiety, speckled vision, nightmares, poetical hypotension but I could tell itwas my drug as it got rid of one of my worst symptoms which was a heavy head. I had to hold my head to turn it. I changed from 50mg of ami to prothiaden and suffered withdrawal for about a month but then upped the dose and got better and better till I reached 150mg a few weeks ago. The lack of side effects with the prothiaden amazes me. It is a wonder drug for me.
I am still doing good and have even started jogging. I live in fear that an attack is imment to scramble my vestibular nuclei but as time passes I hope that when it does my brain will recover from it quicker.
I was wondering how you were going with the Prothiaden. What fantastic news after such a long battle. I am so glad you have your life back. To tackle a long flight to Australia just illustrates how well you must be feeling!!! Yeah!! I am fast approaching my 3rd year with MAV. I am still searching for a medication that agrees with me. Most of them have serious sedating effects on me and send my dizzies through the roof. I am flying up to see Dr Granot in Sydney in a couple of weeks and am going to ask him about this drug of yours. Did Prothiaden make you feel really fatigued initially? Well done Becks. Happy Days!!
Yeah! Love to hear a good story! It’s such a great feeling getting control over this! Congrats and best wishes!
Great news, congrats!
Wonderful news Becks
I’m on Prothiaden too and have found it a good med to tolerate - prescribed by Dr Granot in Sydney. I’m just titrating up from 100mg to 125mg. I’m feeling pretty good but still have awful wobbles if I’m standing still or turning - only the Ativan seems to help this but I’m hoping getting up to 150mg will sort that out. Do you take any benzos, especially for the long flight?
I’m hoping to be able to get back to UK to visit my brother & sisters but thought I’d never cope with the long haul flight again - your post has given me hope. Thank you for letting us know how much you enjoyed your hol over here & admire how brave you’ve been to risk it.