Massive relapse after 5yrs helppppp!

hi all im new to this site, my story is a very long one so I will try and keep it as short as I can :slight_smile: I started with this in 2012 just hit me overnight it took me 6months to get diagnosed I got put on nort and propranolol and then I went back to work and plodded through, I got into a relationship and that turned out to be awfull he was violent and abusive but I was too scared to leave, he died in 2014, that was my turning point I thought lifes too short im going to live it dizzy or not so early 2015 I went to Amsterdam on a mini cruise with girls and I also partied in Ibiza twice that year and went out every weekend I could my symptoms had gone and had been for a long while until NOW :worried: I quit smoking on new years eve and at the end of jan im back with all dizziness and all the bull crap that comes with this, any tips on how long my relapse may last? or is this it? my anxiety has gone straight through the roof again grrrrr!

Gosh, so sorry to hear. I had an initial bout of imbalance and nausea lasting 5 weeks, then it disappeared and I thought I was clear, then it came back with a vengeance 5 months later and added auditory symptoms (slight HF hearing loss, tinnitus) and its taken me 1.5 years for the dizziness to improve again, but I still have nasty tinnitus that fluctuates from barely a problem to annoying. My neuro tells me that can go too eventually and I no longer feel a slave to the condition.

I have a theory that if its fluid disruption/debris/bubbles in your inner ear this can ‘hang out’ harmlessly in your canals somewhere only to one day return to one of your sense areas and start causing symptoms again.

Did you go med free for a while? Do you recall anything that happened that might have brought in back? Increase in stress levels?

On the plus side be thankful for the good days and all the fun you had in Ibiza. I’m sure there is every chance it will go again. Meantime back on the Nort? (try it on its own first?)

hi thanks for your reply! have you had this long? the only thing I can think that’s triggered this is me quitting smoking it made me abit anxious and now all this has appeared again, I feel like im losing the plot its sending me insane I don’t want to get out of bed! sorry for ranting!

so all told i’m nearly 2 years in from the initial acute bout of imbalance. My advice to you is don’t fret, get back on the meds for a while and see how you go … you might find just nort calms it down at a pretty low doseage. But obviously talk to your oto-neuro. But you probably have enough experience with it now just to request nort from your GP.

yes ive been back on the nort for about two weeks now im sure a lot of this is down to anxiety maybe if I calmed down abit maybe my symptoms will too!

Oh good. See how you go. I wonder if withdrawal from nicotine has upset your brain chemistry a bit. I’m sure that will settle down? Well done for quiting!!

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yes I think the withdrawel is whats caused this,im seriously thinking of having a ciggy! my worst symptom is my vision its sending me nuts I feel like im In a 3d movie its so hard to explain! have you had vision problems?

When I was not on meds I had problems looking at screens and facial tightness and brain rumbles in artificial light. At its worst I had hallucinations that the floor was swinging side to side. This all almost completely resolved after taking 20mg Ami (related drug to Nori)

that is fab news :slight_smile: how long has it been resolved for? are you in the uk?

Well Ami didn’t solve all the dizziness straight away. It’s taken another 9 months to get rid of most of that and the vertigo. Yes I’m in London. :slight_smile:

I still get tinnitus although it has trended better. Do you get that?

sounds like your doing fantastic im so pleased for you! im in Nottingham and I don’t think our specialists are much to talk about to be honest! yes I get tinnitus but not all the time it changes though sometimes its like a ringing noise then its like a whoosing then its like I can hear fluid pumping through my head grrrrrr bloody illness!

Yes mine morphs too. It has got less intense over time and neuro tells me it might go into complete remission. Might!

I don’t think even the top specialists have the tools to tell exactly what is going wrong but at least they know about symptom management.

how long of being on the ami did it take to sort your vision issues out? (sorry for all the questions)

All told, the really worst ones within a week, the bulk of the rest after a month.

I’ve had vertigo attacks both before and during medication and what I came to realise is these meds help to disconnect the inner ear with the eye and this helps relieve the eye and brain of the noise coming from the balance organ. The vertigo attacks were much easier to deal with whilst on medication.

Ask away. We’re all in this together.

its fantastic how your doing so well you should be proud of your achievement! did you ever get the brain fog? that’s what upsetting me at the min!

No, that’s one symptom I’ve avoided.

One of the key things I’ve learnt through this process is don’t avoid going outside and don’t avoid social events. Both keep you sane and help you slowly compensate.

your right ive spent the last week in bed sulking thinking ohhh nooo not again but maybe if I got my butt out of bed and joined the real world I might get over this relapse quicker!

Definitely get out for a walk in the sunshine. It’s sometimes uncomfortable at first but you end up feeling better for it.

Also social or outdoor places tend to mask the tinnitus so cab reduce anxiety.

think I will :slight_smile: how old are you? if you don’t mind me asking if you do just tell me to p##s off haha I have leather skin!

In my late 40’s :). But I was surprised just how many people seem to get this even as early as in their 20’s!