Nortriptyline

I’ve always been a good speller, but I can’t spell Nortriptyline for the life of me without checking the spelling. Anyhow. I’ve had the script for Nori since July 2009. I finally took it, tonight will mark 2 weeks. I’ve been diagnosed with MAV and Meniere’s (But i question the Meniere’s). Anyhow, I’m wondering how long I should expect to see results. I have a support group on FB, we talk all the time. They said they saw a difference almost immediately. At first I didn’t really have any side effects, but I’m feeling myself get dizzy. I woke up early today and my vision was shifting left to right. I had to just go back to sleep and ending up sleeping 16 hours. I don’t think I’ve ever slept that much in my life.

I’m just kind of scared because I’ve been putting this med on hold, but telling myself whenever I started it, it would change my life. I’ve heard nothing but good things about it. Maybe I’m just being ridiculous and should wait. I think SRIs can take up to 8 weeks to start working?

Btw, I’m on a very low dose, 10mg.

I’m just wondering, for those who are/ were on it. How long did it take to see some results? I’m just getting anxious. It’s been like over 3 years with chronic 24/7 disequilibrium/cognitive problems/nausea/fatigue…I’m ready for some relief. Somewhere.

Hi Lucille,
Is this the first side effect you’ve noticed in 2 weeks? Normally, it takes 2 weeks before BENEFITS start to show up and up to a month or more for Side Effects to diminish, if they are going to. There really isn’t a magic drug, so don’t get
disappointed if this one doesn’t work for you. It just may mean your chemistry isn’t the lock for NORT key…so to speak. I would tolerate it if you can for a while longer, since you’ve come this far. But don’t be afraid to scrap it and move on if it isn’t working.
Keep us posted!!
Best of luck,
Kelley

Hi Lucille,

I am on 25mg of Nort right now…started with 10mg as well…I honestly did not see any benefit until I moved up to 20mg…and then I saw a lessening in symptoms. It also helped my mood a lot too. I had a few side effects early on, but not much now…I do have more dizziness if I titrate up too fast.

Good luck,
Kim

Hi Lucille,
I’ve been on nort for almost 4 weeks. I started on 10mg but after 5 or 6 days I was tired all day long and therefore, I guess, more dizzy than usual. I stayed on the 10mg for a little more than 2 weeks and the I’m-so-tired-and-so-exhausted-feeling didn’t stop. However, I did really like that the nort made me sleep heavily and deeply during the night (something I haven’t been able to for the last couple of years) - so I cut the pill in half and for 2 weeks I’ve been on 5 mg of nort. Seemingly, the sedative side effect of the 5mg is enough to make me sleep heavily - and the good thing is that I’m not exhausted during the day. I do feel a little better than I have in month, but it I doubt that it is because of the 5 mg - have never heard of anybody getting relief of symptoms on 5mg, have you? - but it might be due to the fact that I now sleep all night (I used to wake up more than 20 times during the night). My problem is that I don’t know what to do now - I really don’t feel like quitting the nort since I feel a little bit better, however I’m still not feeling GOOD and still not able to work and when I try to move back to 10 mg (I tried twice) I’m exhausted all day… Luckily, I’m seeing my doctor next week.

The best of luck to you,
Christina

Hi Lucille,

Nice to see your photo! Here’s how Rauch attacks MAV with Nori:

— Begin quote from ____

I typically start patients at 10 mg each night and increase the dose by 10 mg every 2 weeks until we get symptom control or unmanageable side effects. The maximum dose would be 100 mg.

— End quote

Perhaps you should think about doubling to 20 mg?

Good luck … Scott

Hey guys! I just wanted to say thanks so much for the replies. I will continue to stay on it and hope I feel an effect. It’s been almost 2 weeks and 1/2 and not really any good effects I notice. Side effects aren’t bad except that I’ve been sleeping like crazy. My body craves those repetitive sleep cycles. So since I started sleeping a lot and late (sometimes til 1pm-2pm) it’s been trying to do the same. I’m just trying to change it. I can’t keep doing that with school and work.

I’ve just been telling myself so long this would be the med that works, I hope it works out.

Kelley, It’s true. I’m putting all my hope in this one pill. I should look at it another way. If it doesn’t work out, well then there’s something else. Because if I say this is the one, and it doesn’t work out, I’ll be pretty devastated. You see I met an AMAZING support group on my Facebook. Quite a few people I have met. And there’s 5 of us that have a continual email chain. We’ve been talking for gosh, probably close to two years now I think. Well, 3 of them are on Nori and quite a WHOLE lot better, two of them almost completely better, just have those break through dizziness. Well, they’ve for a long time told me to get on it and that it would probably really help me.

Kim, You gave me a new hope. I’m just at that point now, over 3 years, --well really the beginning of my symptoms started at 12, I’m ready for some kind of change. Hopefully if I go up it’ll help. I hope you continue to see some improvement!

Christina, I’m just worried about you. Did you ask your doctor if you could split the Nori first? I’ve read it’s one of those drugs that you cannot split up. Like certain pills, for instance - Citalopram - the other med I’m on - it’s safe to cut because you’ll get the same dose of the med and same chemicals. But with capsules like Nori, you’ll get different chemicals. I just heard it’s never very safe. I’m just trying to look out!

Scott, I’ll be seeing my doctor soon, I think Friday. And I plan on asking him to bring it up. He’s really my favorite doctor. When I call, he calls right back. Even if it’s late. He’s just so on top of things and seems to actually care about his patients. It sure is refreshing coming from a doctor. I find it so rare unfortunately.

Lucille,
What meds are you on? And what doses? Can you add me as a friend on fb? I would like to read the threads and hopefully be included. Also, where do you Luce? You can pm me that info if you prefer.
Thanks!!
Kelley

Hi Lucille,

Only happy to help…

So, two things…when I first started the Nortriptyline, it did not really go well…I was hoping that it was going to be a cure-all and I didn’t really see anything for the first month…like I said, it took until I hit 20mg to see a shift. If the side effects are mellow, I would keep going and move up to 20mg after a couple weeks on 10mg. Like I said, I am now at 25mg and definitely see that it helps reduce the symptoms, but, they are not all gone. I am hoping that I can get up to 30mg…haven’t been able to in the past. And hopefully, there will be even more relief then.

It’s nice to see an upward swing in this condition…which is definitely something that I can report.

Also, why have you waited so long to try it? And what dose are your fb friends at that have had success?

Thanks,
Kim

I was on 30 mg for about seven months. It took about three months to get up to the 30 mg from 10 mg. It worked quite well for me when I got up around 20-30. Unfortunately it made me gain weight (a lot) so I am tapering off but not everyone has this side effect. The thing was, I was functioning when I started at 10 mg, but the longer I was on it the better it worked. One day I realized I had not felt carsick or nauseas in weeks.

I had the lightheadedness too that comes with started or raising the dose, but quite honestly for me that was nothing compared to the vertigo and nausea so I didn’t really care.

Good luck!

Kelley,
I’m on 10mg of Citalopram and 10mg of Nortriptyline right now. I went up to 40mg of Cit with no success. There were periods were I had energy and I felt like things were getting better, but the 24/7 vision/ dizziness never changed. When I was up to 40mg I started to get – I forget the word you use --like I didn’t care about anything. Oh and I PMed you.

Kim,
I’m really glad to hear you’re improving. I’d take any kind of relief right now. I guess the Cit has helped an incy bit with anxiety. But not much else. The energy spurt I got didn’t last long. I’m hoping this Nori will kick in, maybe when I increase it. I had some dizziness, anxiety, and DEFINITELY drowsiness. But I can def go up. Oh and I think one is on 75mg Nori and also Gapa; One was on Nori and she said she was almost completely better - got pregnant - had a kid - and has not since had to go back on it - she feels like she’s really luck - another one had started Nori fairly recently compared to the other two - and her next up dose is 75mg I believe. They all say the same thing, they’re better, but there’s always break through dizziness with that time of the month, lack of sleep, etc.

I didn’t start the Nori for a long time because I became like deathly afraid of meds after my dizziness/panic attacks began. I use to have no worry. But after taking Excedrin and having one of my first panic attacks. I’ve been afraid. But I finally, over a year later, took the Nori. I’ve just heard a lot of great things about it.

Amy,
I’m sorry that you had to quit the drug!I was worried about weight gain as well because surprisingly the Cit had me at the biggest I’ve ever been in my life. But part of it is due to the food cravings and feeling too tired to run, and I’ve been a runner my entire life. My body is probably just like what’s going on? !
Are you on anything now and is it helping you?

Hi Lucille,

How long did it take your friends to get up to 75mg? I am finding that I have to move up very slowly…when I tried 30mg a month ago, it made me more dizzy. So, I am wondering if it took them awhile to hit 75mg.

Thanks,
Kim

Hi Kim!
I can’t say I remember. (I barely remember 5 minutes ago.) Ha. I’ll ask them and let you know.