Nori advice please

I am currently having a really bad time. I have been dizzy for over 3 years, it was improving slowly but then started going worse for the last 2 months and I have become housebound and bedbound for the last 4 weeks and it doesn’t seem to be getting any better. I am really worrying and crying lots. I asked my GP if I could try nortriptyline 2 weeks ago, only on 10mg so far. I tried increasing to 15mg the other day but developed a headache and pains in my head which meant I spent all yesterday in bed. I took 10mg last night and now I don’t know whether I should try to increase to 15mg again or whether that is making me worse. I am just so worried about everything. I wake up each day fearing how I will feel. I am almost shaking with fear of the dizziness. I am just so terrified this won’t get better. Any advice would be much appreciated X

Hi Jem
So sorry you have been going through all this pain, anxiety and dizziness for three years! I know just how you feel - I was where you are now nearly two years ago just starting on Nortriptyline 10mg. The Nortriptyline will help you get much better - it really helped me BUT it can be a long slow process and titrating up very very slowly, staying at a level that is comfortable for you is the only way you will achieve this. Sometimes I stayed on a particular dose for several weeks before I felt stable enough to go higher. Eventually I got up to 50mg when I began to feel it was really helping. It is a good med to try and lots of people here on the forum have found it really helpful so don’t give up yet - it really is early days but you WILL GET BETTER.
Can you ask your doctor for some valium to get you through the anxiety - it will really help your brain to calm down! The more anxious we get the more it will ramp the mav up so it’s really important to stop that heppening.
Let us know how things are going for you.
Barb

Hello Jem, can’t help with the Nori but just wanted to reiterate what Barb said about not feeling everything is hopeless and believing you will get better. You will you know. But the hardest part is getting through where you are now, when things look so bleak and you feel so anxious and scared. So many of us have felt just like you feel now and yet, through one means or another, have made it through to finding relief. And Barb is right about trying to stem the anxiety too. I know it’s like a catch 22 situation when being dizzy makes you anxious and anxiety ramps up your dizziness but see if you can’t find a way to break that cycle in wharever way you find appropriate. At the very least talk to yourself along the lines of “Just stay calm, It’s OK, I can deal with this. I will get better”, or whatever you feel works for you. Deep breathe. I know those things sound like a drop in the ocean but they are immediate, cheap ways to help.

Feel better soon, Brenda :smiley:

Thanks Barb and Brenda, it helps when people reassure me. It’s like I need someone on hand at times like this to constantly tell me it will get better. I am just freaked out that it could go so much worse. I thought it was a one off thing all those years ago like labs or VN and I was slowly recovering so this is why it has totally floored me and I have begun to think it must be MAV. It’s the not knowing what’s going on that makes me so fearful. I am not having panic attacks like I did 3 years ago when it started, this is more of a normal kind of severe worry about everything and obviously feeling desperate, upset, guilty and like a failure etc. I really appreciate you taking the time to reply to me, thank you X

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Thanks Barb and Brenda, it helps when people reassure me. It’s like I need someone on hand at times like this to constantly tell me it will get better. I am just freaked out that it could go so much worse. I thought it was a one off thing all those years ago like labs or VN and I was slowly recovering so this is why it has totally floored me and I have begun to think it must be MAV. It’s the not knowing what’s going on that makes me so fearful. I am not having panic attacks like I did 3 years ago when it started, this is more of a normal kind of severe worry about everything and obviously feeling desperate, upset, guilty and like a failure etc. I really appreciate you taking the time to reply to me, thank you X

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Hi Jem,
I’m not on Nori, so sorry I can’t give you an advise on that, but can certainly empathize with all your feelings. It takes a lot of energy to stay on top of those. Just wishing you the best of luck and will be thinking about you.

Judy

Thanks Judy and really hope your new meds kick into effect soon X

Oh Jem, my heart aches for you! I am exactly where you are right now. I have been bed bound off and for the last few weeks. I am also weaning off Nortriptyline. I started it 18 months ago and it was helping, a lot! For some reason it pooped out on me a year later. Personally, I felt best at 50mg, had to push up to 60, then 70 when symptoms got bad again. I am now on Propranolol which is only helping the headaches, hoping to add an SSRI soon!

It is so easy to feel scared and hopeless. I have 3 kids who are just plain sick of this. Hoping you have better days soon!

Hi bbrees

That’s awful that nori just quit on you like that. Did your doctor know why it would do that? How long have you been suffering and what symptoms? You see I haven’t even been diagnosed with mav as yet. I am gonna try moving up my nori dose but feeling so bad right now. How soon did you see results on nori? Hope you improve soon X

I have been diagnosed with MAV, Meniere’s and POTS, so who knows what it really is. I have a constant feeling of dizziness, like my equilibrium is off, ear fullness, ear crackling and popping, nausea, just an unwell feeling. I had an experience last week where I would get weak and my heart rate would skyrocket when I stood up, hence the POTS diagnosis.

I saw results pretty quickly, a week or so and just got better and better. I assume it was the Nori and not a remission of Meniere’s, which I don’t think I have since I have no hearing loss! Who knows, feels like a crap shoot at this point. I really do think Nori helped me dizziness though!!

hi ive had this beast for 4 years and fully know where your at. I starting taking nori 5mg recently and things got alot worse. Its taken 3/4 weeks to settle. Im at 15mg no massive improvement yet. Dont stop taking it too soon as it will take time at the right dose. Give it upto 5 months at higher doses before you change it, otherwise you will have the what ifs about this med.

Hi bbrees

Do you think the racing heart could have been the nori, it made me have that when i started taking it. Are you housebound at the moment then? How long have you had this illness now? x

Hi Becd

4 years is a long time isn’t it? Have you felt better during this time? Did you try other meds before nori? This is my first med as only just looking into MAV due to this relapse. I have only been on it 2 weeks and last night went up to 15mg. Would you really give it 5 months to see the effects? Wow that’s a long time. I guess you’re right though, no point giving up too soon. What dose are you aiming to get up to? x

Hi Jem

Im on amitriptyline the sister drug to nori. It worked for me Im on the lowest dose right now (pregnancy as you know) 15mg is such a low dose I think 30mg gets the best results but give it time.
I went on and off ami for a while I tried it first summer 2010 it made me feel worse at only 5mg and didnt do anything so I stopped it. I went stable again for around 6 months but then had the worst Xmas of my life I hate even thinking about it now but I was housebound for weeks. I got the tablets out again I had nothing to lose at that point and started on the 10mg I started feeling improvement at four weeks in on 10mg it was very slow though I realised I could do a little more each day it wasnt an overnight magic pill which is how these tablets work.
When I went to 15mg after four weeks I felt better still and then again at 20mg. I was never cured from the tablets but they stabilise me to the point I could go to work , go on holiday etc.
I felt I could function ok so never upped the medication I wish I had now to see if it stopped the dizziness entirely to nothing.
I would carry on with it you wont notice anything straight away its very gradual.

You will get better again Jemma Ive been where you are more than once honestly and at the time you think its never going to end but it always has you wont be bedbound forever. How do you feel when moving around?

Im in a very bad patch right now but Ive managed to have a shower today and take my son to school Ive been sofabound on/off for a week and this relapse has lasted three weeks so far which is long time for me. I know as soon as the baby is born I will be upping my ami dose and hoping for the best if not will move onto something else.

Im thinking of you this illness is so scary yet a lot more common than people realise x

Thanks Donna, it helps to get reassurance and to know I’m not alone. It’s so scary and I hate it so much. I have asked my doctor if I can have some more nori so I can keep on with it and up the dose again soon. I am doing a tiny bit more than I was last week but I just fear going worse again each day. I really hope that the nori is helping me. I still can’t really leave the house yet although I have been in the car and as always I feel a lot better inside a moving car which has always been the case for me. Obviously long journeys make me feel rough but shorter journeys seem to mask the dizziness.

I have my fingers crossed that everything goes well with the birth for you Donna and that your dizziness starts to subside. Like you say, I am sure when you get back on the ami again it will settle down. Keep us posted on how you are, take care X