so I have been on Nortriptyline 10mg for almost a week, since day 1 my symptoms have been 70% worse than normal. Is this abnormal or quite common when trialling a drug in the initial stages. I was expecting possibly some tiredness but was not expecting it to exacerbate all of my symptoms. The main things I feel are this weight pushing down on my head and shoulders, more significantly when walking and also general dizziness and visual jumping. These normally get worse as the day progresses but since being on this drug I wake up with these symptoms.
common symptoms are dry mouth and tiredness - why its often prescribed at night (I take mine at 6pm). Chance of experiencing increased symptoms so try and stick it out for a bit longer.
I’d say to stick with it a bit longer if you can.
I’ve just finished my third week on nortriptyline (5 mg for 1st 2 weeks and 10mg for the last week) and have possibly had some increase in some of my symptoms with it, but better in other areas. Initially I had some sleep disturbance but this seems to have settled but apart from that and a bit of a dry mouth it’s so far better than any other treatment I’ve tried.
That said I’m back to the neuro next week for review and see if I need to up the dose
I’m a month into nortriptyline and went up pretty quickly from 10 mg to 50 mg. Have been on 50 mg (at night) for two weeks now. The tiredness and heaviness improved a lot from my initial doses. Not sure if I’m still getting some of that side effect or whether it’s just because over the past week I had 21 dinner guests (for Thanksgiving), 9 overnight guests, the next day unexpectedly got a new grandson (he was due 12-29), and then I spent two nights with only 4 hours sleep so the parents could recover from the hospital stay. Plus working 20 hours a week. Think THAT might make me tired? Yeah!
My point is, the side effects may improve; you may just need to give them more time.
I too had some nights full of strong, seemingly constant dreams, but that has also tapered off.
It’s too early to say if the nori is going to help my dizziness overall, especially because it’s been such a disruptive month otherwise, but I’m hopeful.
Oh, weight gain, I forgot about THAT one. Thanksgiving didn’t help, but I did shoot up a few pounds, so I will have to be careful.
So I am fast approaching the 3 week mark of being on Nori, (still on 20mg) and I have to say my symptoms are still a good 70% worse than before I started take these drugs. I am really starting to wonder whether these are just not right for me, it doesnt sound to good. The only thing that confuses me is that Dr Surenthiran said I would feel worse before I feel better, I’m not entirely sure how to interpret that but this certainly doesn’t feel right atm.
Has anyone else experienced this significant a bad spell before turning good? I should add I am doing next to nothing, lying on my bed almost all the time as that is all I can do. I used to be able to even to go to work some days.
Wow, that sounds really bad; sorry you are so much worse. I am interested to see what other people might say about your question.
I would think if a med makes you worse, that should only last a few days at most? but I do NOT know that for sure.
Can you ask your doctor if this is normal/expected? It seems to me that if you’re not feeling some positive effect by now but are only just worse, this is not the right med for you. Just my own experience.
Well it isnt a bad idea to contact the hospital. Is it possible you titrated this med too fast (for you)? Many folks with mav have super sensitive brains when adjusting meds and must go up slowly. I have never tried Nori myself but your thread caught my attention because I started an anticonvulsant called Keppra last month…was told I could titrate every week until I hit my therapeutic dose, which would have taken 6 weeks. However, I am only halfway there because the first two weeks on the lowest dose were awful–symptoms just as you are describing. Even now, I feel rotten for a few days after titrating to the next dose. Therefore, I am usually titrating every 2 weeks instead of weekly. I think it is too early to tell for both of us if our meds are winners or losers. It seems a few dizziness docs here in the States feel it isn’t normal to get worse before getting better, but other docs and members on here believe otherwise…
Hi Simon:
I was on Nori for 2 months and had to get off of it. I was feeling so lightheaded and experiencing extreme dizziness and dizzy spells. This medication made me worse rather than better. I spent a lot of time in bed with this medication.
I’m a couple of weeks ahead of you Simon using Nortriptyline and have been titrating in 5mg steps and only just got to 20mg this weekend.
I went to the Neurologist last week for my follow up and reported that I was improving since getting on to 15mg. In fact last week was my best week at work since this whole last episode started back in April.
…However today I had one of my worst headaches ever (though curiously no dizziness) like a pressure all over my head and barely made it through the day - so I’m going back to 15mg tonight.
When I picked up my prescription from my GP on Thursday it said to go to 20mg for 1 month before going to 30mg so it certainly seems that the recommendation is to increase slowly. I’d only been on 15mg for about 10 days before going to 20 so maybe it was too soon?
hi - i increase by 10mg a month (am at 60mg) but when i went from 50 to 60mg i felt more dizzy, so went back down to 55mg and have gone up to 60mg now - so …slowly slowly…maybe baby steps at a time. Worth giving Dr S a call though.
Someone i knew who took Nori it gave them heart palpatations so she came off it. Depends if its the right drug for you - think Dr S often starts with this drug.
I guess its possible yes but I just did what I was instructed to, 10mg for the first week 20mg for the next 2-3 weeks. Thanks for your comments, thats another way of looking at it! I dont mean to be negative but I was starting to worry that my whole christmas is gonna be wiped out only to find at a later date that these aren’t the drugs for me.
Hi Katie, sorry to hear that, how long did it take you to get back to normal once you came off of it?
Hey Stew, that’s very interesting! wow I couldn’t even contemplate working whilst on Nori, I can’t even walk to the shops to buy a loaf of bread, it really has messed my game right up. I’m glad you are doing well with it, I certainly won’t be putting the dose up after all this feedback. So it sounds like really you should only up a dose once everything has settled, which could take a week to indefinitely by the sounds of things?
Thanks Cath, yes its my first drug from Dr S, so as you can see I really don’t know what to expect at this stage.
