Advice - time to quit Nori?

Hey Gang

So my crash into the abyss continues, I had 2 weeks off work and things did settle down a fair bit, but this rocking/bouncing sensation is quite strong again while back at work. I’ve also had lots of headaches, pressure and general shitty. I have the feeling, being worried, trying to work while feeling super low is making things worse, as its adding anxiety to the MAV monster which fuels these symptoms.

I can’t stay at home all the time, as I have to work. I increased the Nori again last week on the advice of my neuro, as things did seem to improve while at home. I’m on 50mg and have been for over a week now, and its made no difference. I feel just as whack as when I was at 20/30mg.

I’m thinking of tapering off, as I have my neuro appt next week and think we will restart Pizotifen (as its the only drug that has worked in the past). Given my symptoms have only worsened over the past few months since being on Nori, I think it makes sense that the drug is not going to work for me.

This junk is hitting me harder than it has in the past 4 years. I’d be happy just to operate at 80%, instead of 20% as I’ve never had to stop working again since this first hit.

Thoughts?

Hi,

I’m on Lyrica, have never been on Nori but I think you need to give it longer than a week at the higher dose if the side effects aren’t too bad before you can really say if it’s helping. I know this is so hard and we want our lives back but for some of us it’s a slow process. I couldn’t possibly work ATM. I’m fine at home like you say but in a pressured environment I can’t think straight!

Im at 225mg Lyrica and think I’m ready to go up to 300mg I haven’t had vertigo but my heads full of pressure and I’m still having mini spin and general VM it has got better re the balance but my heads still crap! But I knew this would be a slow process as I’ve had it over 20 years and have just been diagnosed!

Can you think if anything has sunk you in to this abyss? Hormones? Stress? Change of diet? Sleep?

Hi Bee

Thanks for the reply

I do kind of agree with you, but I’m just looking at the evidence. In any med trial I have done there has been gradual improvement, even if its so small to really notice. My trajectory with nori has almost been the opposite, the higher I get the worse my symptoms seem to get.

I haven’t really changed anything in my regime, except I’m worrying more than the usual because I’m feeling so shitty, and also am dealing with another issue with my bladder. I’m 31 and feel 91.

I actually spoke to my neuro otlogist just now, and she advised that I start to taper down. The good news, is I’m at rock bottom symptom wise and things can only get better.

I appreciate your sentiments, and hope you crack this with Lyrica.

Cheers,

Luke

Hi Luke
You can actually take nortryptoline with the pizotifen I do and I also take pregabolin (lyrica) I take all three together it might be worth trying them both together they might be good as a combo just a thought.
Shenay x