Nortriptyline seems to be working!

Specific Illnesses & Conditions VM/MAV
, , , ,
1

I too will weigh in on my nortriptyline trial, and am happy to report that it seems to be having a big positive effect!

I’m almost 3 months into it, taking 50 mg, having started at 10 and worked up to 50 within 2-3 weeks, I think. That was probably too fast, as I felt some significant fatigue, but that side effect seems to have passed. Otherwise only maybe some dry mouth.

I think I’ll have to give it six months before I claim victory, because who knows whether some other, unrecognized factors have been in play since the beginning of November. But I have had 15 years of experience with my dizziness (or 32, depending on how you count), and I really think it’s the nori.

It wasn’t some dramatic effect like the Strattera (which in 2004 lifted me suddenly out of the worst of the fog, though not the underlying dizziness). But already in December I noticed that I WASN’T getting all dizzy, woozy, and lightheaded at work when moving around a lot, as I always did before.

And I haven’t gotten any more of those episodes (again usually at work, seemingly triggered by a lot of motion) where I’d feel REALLY lightheaded and spacy and somewhat nauseated, which I think were migraine episodes, lasting a couple of hours. I may have gotten a couple in the early weeks, but for sure this whole month of January I have been feeling very well.

It’s a little strange because it’s not like I NOTICED feeling better as I went about my work–it’s just that when I think about it, I realize that I have NOT been getting dizzy and woozy like I always used to. There just hasn’t been anything to notice–no straightening up after shelving on the lower shelves and feeling that oh so familiar yucky wooziness (and wishing I didn’t have this all the time).

The underlying motion sensitivity isn’t gone by any means–but it’s much less now. Maybe the nori has just reduced my brainstem’s sensitivity to motion. Whatever it’s done, I am very happy with it!

Thanks to everyone for all the advice and understanding and information I have gotten here. Even though my symptoms were never the train-wreck kind that so many of you have, I am so happy to feel I have finally done something to fundamentally improve my dizziness at its root.

Nancy

2

Are you getting any side effects from the nortriptyline?

3

No remaining side effects that I can tell except possibly a little dry mouth.

In the first maybe 2-4 weeks I felt extra fatigued, especially in the mornings (I take the nori before bed), but now I can’t tell that I have any fatigue other than my “normal” fatigue.

Other than that, no side effects noted at all.

4

Thanks Nancy, this is heartening. I started on 10mg of nort for about a month, and just upped it to 20mg about a week ago per my ENT’s advice. The side effects I noticed when I started and then again when I upped the dose, are mainly hunger, constipation, and lack of sex drive. I’m hoping those will subside quickly.

I"m not sure if the nort is helping yet, probably because I"m on such a low dose even now. But i hate to up it as I"m very sensitive to drugs, so I’m trying to give each dose a fair amount of time. In the meantime the dizziness, wooziness, and nausea that you talk about, are pretty constant in my life. But I do notice that overall, since this hell started 6 months ago, some symptoms that plagued me in the beginning are now gone. Such as veering to the right when I walk, getting very nauseous when I walk, dizzy when I look around, etc. I think that’s more due to time than the nort, but who can truly say. I’ll stay on the drug for now, thanks for your “success story”, it’s great to read things like that. :slight_smile:

5

Thanks for this post…it gives me hope. I am happy for you, too.

6

Hi requin, glad to hear your symptoms have lessened even if only a little bit. I do feel my worst time with the dizziness was in the second half of 1999 and into 2000, and no doubt it wasn’t coincidental that that was when I hit perimenopause with a vengeance!

I wish you, and Lpeers too, good luck with the nori. I admit I’m surprised it has helped me as much as it has, and without significant side effects once the fatigue wore off. I am lucky and USUALLY don’t get bad side effects with meds–sometimes none, sometimes just negligible or fleeting ones.

I actually had a nori starter pack prescribed to me several years ago but I never took it, because the doctor wanted me to first try riboflavin. Well, I don’t know why, but in the first months with riboflavin I seemed a bit better (though that didn’t last and probably wasn’t an effect of riboflavin, hard to say), and I was discouraged and never did talk to the doc again about it and never tried the nori. Now I wish I had!! Looking back, I’m not sure why I was so skeptical. I guess I was afraid it might mess up my concentration, but fortunately that hasn’t happened. When I have much less of the “motion-sick” head dragging my life down now, I feel more energetic and able to actually get more stuff done. This is the FIRST drug or intervention of any kind that has made a real difference in my underlying dizziness. (Though I used Strattera very successfully for many years to counteract the “fog” that always came with the motion sensitivity. But now the motion sensitivity ITSELF is noticeably less, oh joy!)

Hang in there and best of luck with the nori. Keep us posted!

Nancy

7

How are you doing now?

I’m trying to find any information on folks who are taking Nortriptyline - particularly those who get symptoms like mine: I get woozy if I walk back and forth, bending up and down, just doing regular activities and then it’s yuck all day- in bed until I recover from it. Have nausea, woozy, sick, yuck head because I feel so sensitive to motion, lights, screens, sounds etc.

The TCAs seems to be the ones that don’t give me awful reactions, and side effects. I use the Nort solution to titrate up and go 1.25ml at a time- very, very slowly. I’ve just reached 15mg, by combining the capsule of 10mg and the rest in solution. Somehow I am feeling more sensitive to motion, and slightly more dizzy and I’m wondering if that is the side effect of Nortriptyline or if that is my regular MAV symptoms getting worse.

I find myself on the edge all the time, afraid to move too much or else I’ll get that woozy head again. This is just so hard. I’m grateful for the slightest bit of relief- it is so hard to live with this condition - it has put fear in my mind and body, fear of moving about, fear of bending, fear of sounds, fear of screens, fear of lights…

I see it’s been more than 10 years to this post and I’m wondering where you’re at now?
Would love to hear something. Thx.

1 Like
9

That’s good. I tried it but didn’t have any improvement. It was my first medicine that I tried apart from short term things like buccastem.

10

Hello Suffering–I’m sorry, I never saw your post here until I got a notification of the most recent reply on this thread…I stopped posting on dizziness forums because the answer to your question is that I am STILL doing FABULOUSLY on the 50 mg of nortriptyline, all these years later. Every now and then I get that tiny headachy feeling, a little nausea and spaciness, which I’m sure is a baby migraine, but since these are so infrequent now, with my brainstem no longer under constant attack, I no longer have that feeling you describe so well:

“…woozy if I walk back and forth, bending up and down, just doing regular activities…afraid to move too much or else I’ll get that woozy head again.”

I remember all of that SO, SO well. I’m truly sorry you are still suffering from it.

I’m sorry that you seem to have gotten a little worse on the nori and hope it’s a temporary thing. By now have you titrated up further? I hope that with time the med will give you the same good results that I got. It’s so frustrating how variable the dizziness can be, and you don’t know why…I kept a journal over many, many years, trying to correlate a change in my symptoms with anything at all, but I never figured out anything definite. Frustrating. The only thing that made the big change for me was going on the nori.

VERY BEST OF LUCK to you, and if the nori doesn’t work, KEEP TRYING. Do you go on Dr. Hain’s dizziness site? He has oceans of info. I tried Effexor first, but after a month I was having a lot of those head jolts and wasn’t any better, so my FM doc suggested nori and I lucked out.

Take care–stay hopeful–you CAN find something that works, hopefully with the help of an understanding doc.

1 Like
11

Have you found anything that does work?

Good luck to you!

12

Not at all :sob: tried that, cgrps, zonisamide/topiramate, flunarizine, venlafaxine (could not tolerate), mirtazipine

13

So sorry you haven’t had success yet… don’t give up. Are you sure you have the right diagnosis? Or that there isn’t something else going on? As I’m sure you know, there are many causes of dizziness and they can overlap.

14

That’s what I think. They’re giving me stuff for migraines like nerve blockers and cgrp when I think it might be pppd as other clinicians have suggested, and it fits the profile perfectly.

1 Like
15

Thanks so much for your reply Nancy. It’s so good to hear back from you.

I am so far on week 7 of 20 mg of Nortriptyline and the thing that frustrates me is that I started to feel better in between just for a little bit especially with digital screens and motion sensitivity but then back down again so I don’t know what this means but Nortriptyline does that to me like I get the feeling that I’m going to get better and then I get disappointed again. Nortriptyline and the TCA is the only medicine I have tolerated out of the eight other meds that I tried so I’m hoping I don’t have to give this up. I did suggest to my neurologist that I want to try to go up to 50 mg and that’s sort of where I have put my hope right now. She wants me to go up to 25 mg next which I will slowly start increasing after next week. Titrating up is not easy either. The medicine causes its own dizziness.

My biggest fear is that I get to 50 and I don’t see a change! I really hope that doesn’t happen. I really hope that increasing Nortriptyline will improve my condition. Reading your post has given me a bit of encouragement now.

How many years have you been on Nortriptyline by now?

I was worried about its anti cholinergic effects and other long-term side effects because I read that it can create some problems for some folks with heart? This condition has given me so much anxiety. Sometimes I’m afraid to move because moving causes the motion sickness symptom I so want to get away from. I need to use my laptop and phone everyday and as soon as I go on digital screens I end up with a horrid headache, dizziness and nausea.

Nortriptyline seems to have gotten me out of a miserable state but I haven’t reached the point yet where it’s actually helping me with the dizziness episodes that I get and also with digital screens. I would like to know if increasing the dose is going to make it better specially for my quality of life and better relief of my symptoms.

Your post has given me hope, guarded hope I guess I have become so fearful of my own condition. Thanks so much Nancy for writing back. I needed to hear from you. Looking forward to getting a response to the questions and doubts here.