Need nortriptyline help

Against my doctor’s better wishes he gave me a 4 month prescription for this. He said he doesn’t like to prescribe it because of the side effects but both Topamax and beta blockers are out for me so he said to give it a shot. I started taking it with a very positive outlook, thought for sure I would have no problems at all.

Took first one Thursday night, slept great, none of my usual insomnia problems and had some very vivid dreams. Yesterday (Friday) I felt very good and was pleased I wasn’t having any side effects. Even thought about going up to 20 mg in a week or two.

Last night (Friday) I took pill # 2. It made me feel nice and sleepy. For ONE HOUR that is. Then I woke up at 11:30 PM with insomnia until about 3:30. Slept fitfully from then until about 7:30-8:00. Felt okay when I got up but as the day is going on I am feeling worse and worse - very, very irratible, shaky, weak, now and then heart feels like it is pounding, a little nausea.

I so much wanted this pill to work and I honestly didn’t expect to have any side effects. I’m only on 10 mg.

Does anyone here have any nortriptyline stories to share? What is your experience? Do you think this will get better over time or should I stop taking it? If I knew for sure it would stop my vertigo attacks I would try to stick it out but for all I know it may not do a thing.

Hi Bookworm,
So sorry to hear of your experience thus far. I have never tried nori so I cannot offer any advice on my experience. I was wondering what your doctor wanted to give you instead of nori since he seemed to not want to offer this treatment to you and why you felt so strongly about wanting to trial this med?

I hope others can offer some more insight.

Best,
lisa

Lisa, for some reason my doctor doesn’t like to prescribe ADs for MAV. His first choice is Topamax (out for me, tried it before with bad side effects) and then beta blockers (out for me because I get allergy shots). So my choices are really limited. We talked about calcium channel blockers but I can’t remember what the problem with that was, maybe because my BP tends to run low.

I wanted to try this because I also suffer from mild depression - kill two birds with one stone I thought. Plus from reading about MAV I know for several doctors this is their first choice.

I was on Lexapro several years ago for a severe depression I was going through. I remember having side effects the first couple of weeks but knew I had to stay on it because the depression was so terrible. Fortunately the side effects lifted as did the severe depression. I don’t know if these side effects are temporary also and am not sure how long I should stay on it to find out. I don’t want to give it up at this time and hesitate calling the doctor lest he tells me I need to.

It’s also possible they aren’t side effects but just the way I happen to be feeling today.

Bookworm - I’m not sure why you aren’t anticipating side effects. I took Nort in the past, started at 10 mg, and for approx 10 days (until my body adjusted), I felt sedated, dry mouth, constipated, and much more dizzy. People whom I know took Nort also had various side effects until their body adjusted. That being said, your body should adjust (anticipate having side effects with each increase), and I know several who have gotten much better on Nort. My doc would like me to retrial this med after I have the baby, and forecasts that I won’t see improvement until at least 50 mg, and will likely have to go higher. But, living with MAV is absolutely no life for me, so I know that I will have to withstand side effects to get better. Unfortunately, there is not a better alternative. I wish you luck. I hope this drug works for you. Sadly, we do not have a crystal ball and have no idea what will work for us until we try it.
Lisa

Hi Bookworm,

Sorry you are having such a tough time. Nortriptyline is my doctor 's first choice, so it was my first med. When I asked him why he wanted me to try this he told me it was what had given him the best results with most patients. I have been taking it for almost 6 months now and take 30 mg. I do get a slightly dry mouth but apart from that no side effects that I can tell of. I have spoken to people who hated it, and those who got better on only 10 mg, and others who needed to go higher. I know it is frustrating as we are all different with different reactions. I am mainly better so hope I don’t need to go higher but some days do feel that all the MAV is so close to the suface, it is almost back and think I may need a higher dose to really kick it away.

Sorry …I don’t know how long you should try to keep on with it, or when you should not force your body into taking something it is rejecting. Maybe someone here with more medical knowledge would be able to help you.

I hope you get some answers and hope the meds kick in and settle down for you.

Good luck
Penny

I am on 10 mg now, but had been up to 50 mg and was told to get off of it because at the time my ENT thought I had Meniere’s.

Now that he suspects MAV, I’m wondering if the nortriptyline was helping the symptoms. It’s now worse than before. The side effects for me at 50 mg was bad though. I had dry mouth and constipation.

If I do increase it again, I’m wondering at what dose should I stop at. I’m going to see the neurologist for the first time in a few weeks, and go from there.

My doc told me to make increases (by 10 mg) every 6 weeks, so body can adjust. Everyone responds to different doses, but he didn’t anticipate much success until 50-60 mg. Penny - that is great that you did well on a low dose!! Since every 6 weeks is quite long, he did say I can shorten the time a bit and even do every 2 weeks. I want to get better as soon as I can, but realize that my body needs to adjust. When I took it in the past and got up to 20 mg, I too was very constipated. But, this time around, I will be sure to be on a very good bowel regimen. I will do whatever it takes to get better.

MAVLisa, I guess I was naive in anticipating no side effects. I have them with everything else I take, I don’t know why I thought this would be different. I hope I can stick with this. I have to look for the light at the end of the tunnel. It sure would be easier if I didn’t have to work though. I’m dreading Monday already, feeling this way.

Penny, I’m glad to hear you are doing okay on this and it is helping you. I have the dry mouth also, that much I expected but really didn’t think I would have any other problems.

Res0, I hope your neurologist can get things straightened out for you and get you back on the right path. Seems there is a thin line between diagnosing Meniere’s and MAV.

My doctor never even said anything to me about going over 10 mgs, he gave me a 4 month prescription for 10mgs only. I go back to see him in April, unless I can’t make it that long.

I’m reading the side effects sheet that came with the meds and it says to contact the doctor immediately if I experience feelings of irritability or difficulty in sleeping among many other things. Reading that really scares me. I’m not off the wall irritable, just annoyed at so many things, but it really isn’t anything new, I seem to be irritable a lot, today it just seems to be a little bit moreso.

I really thought that 10 mgs was such a small dose that I wouldn’t feel anything. Oh well, guess I was wrong.

Hi Bookworm. I took Nortriptyline for a year. I increased the dose very gradually (too gradually) to about 60mg. It was only at 60mg that I got good results and the results were very very good - I was at about 97% of my old self. It was really only lack of sleep that would make me feel “off”. The side-effects at the beginning, and at each dose increase, lasted from 7 - 10 days for me and then wore off, except for the difficulty in waking up in the morning which stayed, but was not extreme. Once awake I was fine.

The benefits of Nort did unfortunately wear off and my doc told me he generally doesn’t see improvement beyond 60mg. I then went onto Amitriptyline with very good results at a lower dose (15mg). The side-effects were the same as Nort for me. That unfortunately wore off too and I’m now on Pizotifen WITH the Ami and I’m back to 97%. It’s a real roller-coaster ride this medication ride isn’t it?!

Jen

Jen, I’m sorry to hear that the good effects of nortriptyline didn’t last forever but at least there have been other options for you. It sure is a roller coaster ride. I’m taking this stuff and I don’t even know if it is working or how I will even be able to tell if it is.

I did sleep better Monday night but I think that was because I still had some valium in me from the previous night, cause last night it was back to being up half the night. Plus now it feels like this stuff is giving me heartburn.

Jen - just wondering what your symptoms were at your worst before you improved. I am so very sick, and housebound that right now I cannot believe that I could get my life back. I guess I just need an encouraging story to give me some renewed hope.
Thanks,
Lisa