2 years ago i visited Dr Surenthiran who dignosed me with MAV. This was such a relief after visiting many other ENT experts who could not help.
So i’ve been taking nortriptyline since that visit along with sticking to avoiding his suggested trigger foods.
Since the dignoses i’ve got my life back on track returning to work and although the dizzyness is still there (much reduced happliy) it isn’t in my thoughts 100% of the time which was previously controlling my life.
I have to see my doctor about the repeat prescription. Should i be looking to stop taking them? I’m worried if i do i will go back to feeling ho i did prevoiously.
Should i get the doctor to refer me back to Dr Surenthiran to discuss this I live in Newport (SW) so it’s not that easy to get to his hospital.
Any experience others have had would be much appreciated.
Difficult decision. Many on here have stopped a med that’s working after x years and found the symptoms returned.
I have seen dr s as well but only privately. Are you having any side effects on nort that make you feel you need to stop taking them ? What doseage are you taking. Maybe you could try reducing you’re dosage a little and see if the symptoms return.
Good evening both,
Interesting post. Interesting for me as I am also a Dr S patient (hoping to go NHS but currently private). Scott I am so pleased for you that you are feeling so much better - it always makes me happy on here when I see that - if I may ask what dosage on nortriptyline are you on at the moment? Also how long were you on the med before you saw improvement? Did you follow Dr S rules & increase by 10mgs every two weeks?
I was having the same conversation with f-I-l today, he has some medical knowledge - he had some medical book containing info on all drugs available in uk. We had a look and it didn’t say anything about how long one would need to be on a medication for managing migraine. I often think about the future and will I be on drugs for the rest of my life? My guess is the Dr S ‘plan’ is whack the drugs up quickly , hopefully get better quickly then eventually bring the drugs down / but hey what do I know? I’m just a dizzy gal!
Best wishes Anna x
I’ve been on Nortriptyline for 11 weeks and am still not 100%. The s/e’s were the worse for me on 60mg, not looking forward to 70 mg… How long should you give a med to work?? I’m losing hope quickly. I feel I should know by now if it is going to work or not. I do feel better than I did 11 weeks ago, but want to get rid of the rocky boat feeling when I’m walking down a hallway and from the flourescent light… anyone get any relief from the artificial lights? :roll:
Been away all weekend so it was good to come back to some reply’s so thank you.
I take 4 a nights (well when i have my Dinner) I do sometimes forget (which i see as a good thing as it means the dizzyness isn’t on my mind) or if i have a Rare drink i won’t mix with the drugs.
I don’t have any side effects really. I do notice when i forget to take them i don’t get to sleep as well, i guess this is because the drugs probably make me a little bit more drowsy but nothing major.
I Live in Wales so get free prescription so that is a bonus, but this may be why they want to talk about my repeat prescription.
I might go see my Doctor an mention maybe reducing my dosage a night.
The Big triggers for me were Cheese and Chocolate, so i avoid these at all costs. I never drank coffee or Red wine anyway, some of the others i have in Moderation but if at all possible i’ll find an alternative (i.e Soya everything)
I never really noticed an overnight improvement it just seemed to happen over time. It was so nice not to be in a bad mood all the time and taking it out on Loved ones. I no longer do the exercises but i do play a lot of tennis which i think helps the eye movements.
I did also get Cognitive therapy which helped me, but i understand it might not be for everyone. I Had to cancel a trip to Peru 5 or so years ago when this horrible condition arose. Happily i was able to go recently on the same trip and although the High altitude didn’t help it was great to feel that i’ve achieved something i thought would be impossible before seeing Dr S.
I would say i was at 70% but from where i was before that will do for me.
Hi Scott,
I was also a patient of Dr S.
I tool Nort for a year and a half…built up to 40 mg and stayed there for almost a year feeling great .
Last year I started coming off,very gradually , staying on the diet.
I am now 5 months drug free…still on the diet and very very well.
Hope that helps
Best of luck,
Penny
Hi again all- I am just thrilled for you both that you are a relatively low does & it’s made such big changes - I just ramped up to 30mg on Thursday - fingers crossed. I have identified my triggers - light (fluorescent) & red wine for sure also lifts! Thanks to David S though as I tried your leg bend trick and it seemed to work on Sunday! A question to you all did / do you suffer in any of the same ways that i do? I just wonder if eventually to
Nori should eliminate these symptoms too?
Penny - yOur story is a great - great that you got relief at a relatively low dose & that you managed to come off the drugs.
Take care all x
Just this week I was thinking “geez, I feel great, better than I’ve felt in 2.5 years, this is amazing, maybe in the spring I’ll wean off of the nortriptyline!” and then last night, vertigo reared its head again and at work today I had to call someone to come pick me up because there it was again. I’ll do what I always do - up the dose for a week or so and that should rein it in mostly, and carry on…but I can’t say I wasn’t bummed. I was excited about the idea that it might be gone. Not this time I guess, lol…
I too see Dr Surinthian at Medway Hospital, fortunately for me, it is my local hospital!
I was under him for a year before he gave me some sort of diagnosis, and then did the restrictive diet for another year as I was reluctant to take medication if it could be avoided.
I started taking Nortriptyline last April and I have seen a marked improvement in my symptoms, I was really happy to have my life back and to be able to get behind the wheel after more than two years of not driving.
Have had a bit of a relapse at the end of February when my balance just “fell out”. Did increase my tablets, from 5 to 6. After a fortnight I still felt rubbish and went to see my GP, to be honest I might just have well have asked the bin men. Its just the look they give, when they haven’t got a clue! Was told to increase my tablets again, so I was on 70mgs a night.
Saw absolutely no improvement for the next week or so, so went back to 4 a night. My symptoms have eased over the 8 weeks, and reading on here, it’s not uncommon to get labyrinthitis and suffer from MAV. So I can only assume that’s what it was.
not back at the hospital until June…
My neuorlogist said once you experience no symptoms and are symptom free for 6 months you can start decreasing your dose, slowly, if you feel any sypmtoms creeping back with the decrease go back up and try again in a months time.