Does anyone have experience with Nori and MAV?
Hi Lucille
Yes, I took Nortriptyline for about a year. I had good results only when I got to about 60mg. I stupidly took my time getting to that dose. My advise would be to keep increasing the dose whenever you can until you get results. My doc said that once you hit 60mg you’re not likely to get better results after that. 60mg worked for me for some time and then it wore off. I then switched to Amitriptyline which gave me instant results at a much lower dose (10mg to start). I was really good for about 4-5 months and have recently relapsed again. I’ve just increased the dose to 25mg.
Good luck!
Jenny
Jenny,
Nort might be the next med I try, and was wondering how long it took you to get to 60mg. My doc actually likes to wait 6 weeks for increases, which is a long time. He did say that if I wish I could go much quicker. Also, when your sxs came back, what did your doc say? he didn’t suggest increasing further? I was told that many have to at least get up to 100. I am so very sorry to hear that the positive effect didn’t sustain. You did get better, though, and I am hopeful you will again., keep us posted.
Lisa
Hi Lisa
I took 6 months to get to 60mg, but I must stress that this was my own schedule, not my doctor’s. I could have gone much quicker. I pretty much adjusted to a new dose within two weeks, so I could’ve got there much quicker. When I hit 60mg and felt so great I certainly wished I had got there sooner.
Yes, I read on this site that 100mg is the dose at which to stop, but my doc said patients don’t see further results over 60mg - I guess that is just his experience.
My doc is a man of few words and virtually asks me what I’d like to try next when things aren’t working - it is a little frustrating as I’d like to be advised by an “expert” on what to do. This site is so valuable as I can at least ask him informed questions when I see him next (early Jan).
Today is day 4 of my recent attack and I’m up and about now but in no way normal. I’m tolerating 25mg of the Ami well, so I’m trying to remain hopeful that in a day or two I’ll be back to normal. Man, this condition is a rollercoaster sometimes.
Good luck with your Nortriptyline experience.
Jenny
Hi again Lisa
I just wanted to clarify that when I was working up to 60mg I was feeling about 80% “normal” most of the time with no major relapses and pretty much living a normal life. It was when I got to 60mg that I felt 97% - oh what a feeling! I say 97% because I still felt dizzy/off-balance when I got tired or it was late at night. I was happy to live with that knowing that when I woke up the next day i’d be back to feeling great.
When I started taking the Amitriptyline I felt 97% straight away and felt like that continuously for 4-5 months until the first of my 3 relapses three weeks ago. I am still stunned as to how I can go from 97% to 0% in one fell swoop - I thought like the Nortriptyline that if I got used to the dose the side effects would gradually come back, not slam me with the worst vertigo i’ve ever experienced.
Oh well, as Scott said to me, the migraine brain is always evolving. I’m just trying to stay positive and think about the fact that I can get back to 97%, even if it takes a bit of time. I also think I was bombarding my body with too many migraine triggers - two of my three episodes came on in shopping centres. I am sensitive to fluorescent lighting and I guess with all the triggers that I was exposing myself to the shopping centres just tipped me over the edge.
Okay thanks so much guys! I’ve had the Nori since June and have not taken a single pill. I’m deathly afraid of medicine now because of my previous experiences. And it’s only 10mg! I honestly have a pill phobia now. I want to take it but am too afraid. It’s pretty bad. I’m waiting til I see a new neuro-otologist in the end of December for a second opinion and to see what he says.
Thanks,
Stace
Jenny,
Thank you so much for your response. I sure wish you weren’t dealing with this again.
Just wondering what dose you started seeing improvement on with the nort? Also. what were your symptoms prior to getting better? Right now, I am pretty much bedridden 24/7. I have been ill for almost 2 1/2 years. Cannot even imagine what it’s like to live again.
I took Nort almost 2 yrs ago, but only got up to 20mg. I ended up going to another doc at that time who switched me to verapamil, which didn’t help me. Sure wish I stuck with the Nort, but hindsight is 20/20. I had a tough time with side effects on Nort, but will deal with them. anything to get better. I didn’t see any improvements on 20, but am very aware that it’s a low dose. my doc said that I probably wouldn’t see improvements until about 50 or so.
Thanks again for your reply,
Lisa
My gosh Lisa, bedridden? No, thankfully I have not been that bad (not until Wed at least!) but I have been dealing with this for 7 years. In the early days I was bedridden for a short time but after that I have just lived with a constant feeling of being off-balance, not being able to focus properly on things and people and conversations, quite often a foggy head and actual dizziness where if I move my head suddenly the room seems to follow afterwards slightly. The severity of these symptoms waxes and wanes, sometimes I’m aware of it all day and it makes me miserable, sometimes hardly aware of them at all. For the past few months I’ve hardly been aware of them. I even stared drinking the occasional glass of wine! What I can say is that I haven’t been free of symptoms 100% since this started in October 2002, but in recent months I have felt almost cured.
When I have some time and don’t feel so wonky I will write my whole long story on the What’s your Story page.
Stace, the main side effect for me on the Nortriptyline was the feeling of grogginess in the morning. It is difficult to wake up, but once awake the feeling of grogginess virtually disappears. It’s definitely gone within half an hour of waking up. When you first start taking it this side-effect will be worse for a week or two and then your body will adjust and you’ll feel pretty normal (except for very deep sleep which is a great side -effect!). When you increase the dose you’ll have to go through another week or two of adjustment. And so the story goes until you get to a dose that works for you.
Jenny,
I guess people vary in how debilitating their symptoms are with this illness. I wish you all the best for a speedy recovery. keep us posted.
Lisa
Hi Lucille,
I am on 30 mg. It has took me 4 months to get there, not sure if I will need to go higher…feeling good but some days not good enough.
My doctor says he increases until 70 if he needs to.
Some people take 20 and it is enough to knock them out of MAV , we are all different and all the doctors are different and the way they increase is different.
I have not had a bad time with side effects, slightly dry mouth, slightly constipated if Iam not careful but not enough to stop me wanting to keep going.
I take the meds at 6 pm sharp every night, by 11 I can not keep my eyes open, I have to go to bed, but I am not drowsy when I wake up.
Good luck,
Penny
Do not use this medicine if you are allergic to nortriptyline, or if you recently had a heart attack. Nortriptyline is in a class of drugs known as tricyclic antidepressants, and has been used to treat depression. The use of nortriptyline group of schizophrenia may cause exacerbation of psychosis and may activate latent schizophrenic symptoms.
Geez, it’s something to see all the different uses for one drug. I take nortrip for neuropathy!
Anyone with experience or heard of others taking Nori 3Xs/day? I recently switched to 2/day and I seem to tolerate it better and along w/ better efficacy. Looking to avoid compounding 10mgs into 5mgs. Additionally w/ that note, anyone ever split open the capsules attempting to half a dose. I am trying to get 5mgs doses out of 10. Pharmacist said it should work in theory, in a perfect world if I have a scale…so I could get somewhat close.
Lastly - I have been taking it for several months now trying to find the best dose. Went up to 35 and gained a ton of weight and felt crazy, so reduced back down to 10mgs twice a day. How long should one stay at a dose before making a determination. I seem to get results extremely quickly within several days to a week with all meds I have tried, but have a hard time tolerating most - 40mgs of Verapamil for 6 days was a miracle but couldn’t take it.
Thanks