Hi Everyone,
I’m new here and have had vestibular migraine for three years. It would be great to hear all of your experiences regarding amitriptyline and noritryptiline.
I initially started on pitzotifen which was a complete lifesaver as at the start I was so ill that I was retching 24/7 and couldn’t even walk straight. So I got so much better for two and a half years. However, now my dizziness has been back for the last year with the motion sensitivity and sometimes nausea. I cannot stay on pitzotifen any longer as I’ve gained over 3 stone and I’m do tired everyday which are both getting me down (especially as I’m starting a doctorate in September!). I tried Dolovent which is excellent for energy (a vitamin supplement) however isn’t totally helping the dizziness (although has helped a little). I then recently tried candersartan as it’s low side effects but unfortunately even on a minuscule 2mg my blood pressure took a hit and I kept nearly fainting each day. Therefore have had to stop it. My specialist has actually said that the SSRI cipralex (escitilopram) does have a tendency to make migraine worse in some and so has given the option of trying a trycyclic (amitryptiline being the mainstay).
Also I’m petrified of changing from the SSRI as MAV was so severe and started days after stopping cipralex after a long taper. However, I feel it is worth a shot. I do want to try ami but I’m v worried about the side effects of tiredness and weight gain which I’m trying to get away from on pitzotifen. He hasn’t mentioned nori but I’m thinking of asking to try it.
What have your experiences been on them both? Has anyone swapped from an SSRI to trycyclic ? Any taking ami who HASN’T gained weight? Does nori work for MAV? Does nori cause more side effects ? But with less weight gain?
Thanks so much for any thoughts.
Kindest regards,
Xxx
I’ve been on Ami for over a year (@20mg nocte) and the only annoying side effect now is the weight gain … all other side effects have disappeared … but to be fair and in any case my life is far more worth living now than it was before I started it. I guess the only thing you can do to counteract this is simply eat clean and do as much exercise (especially walking) as possible …
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Thanks so much for getting back to me much appreciated xxx
Ok , thanks for sharing, it’s really helpful.
May I ask how much weight you have gained on Ami? Is it as extreme as 3 stone? At the moment I’m eating clean and walking daily but my specialist said unfortunately on pitzotifen I need to be off it to see results. But it may well be v different on ami and that those suggestions will work to help control it.
Thanks again xx
No worries, Becky, glad to be of help.
No, i’d say 0.5 stone, but all on the tummy 
I was really fit before my vertigo so it was really annoying to lose some of my good shape, but I don’t really care that much, its just nice to feel normal most of the time now.
I have a feeling its partly because Ami calms you down, but probably more to do with it slowing your metabolism. Also it hits your libido a bit, but much less so than SSRI’s (I read). I was offered Citalopram (Celexa) in addition to Ami in the early days and I rejected it exactly for this reason. I’m glad I just stuck with low dose Ami.
Yeah, can imagine, I’ve heard SSRI’s are tough to come off for some people.
Good luck Becksy and keep us posted how you get on!
Hey James,
Yes, I’ve found it incredibly difficult and so I’m hoping that the switch goes well - fingers crossed!
I have next appointment next month with specialist so I’m going to talk to him about doing this.
I will keep you posted! Have a great rest of day! I’m just waiting for it to get cooler to then go for a walk ! 
I’ve had really good success with nortriptyline. It’s newer than the ami and meant to have fewer side effect. I’ve had a little weight gain, but it’s more like bloating around the middle. Really annoying but I’ll take that over mav symptoms! Any other side effects, e.g rapid heart, dry mouth etc settled down after a bit. Or I just got used to them! But it has worked well, I would recommend giving it a go.
I am on sandimigran 0.5mg (Pizotifen) and amitrityline since being diagnosed 2 and a half years ago. Also Maxalt if I get a full blown migraine. Pitzotifen is a life saver after experencing vertigo which was so debilitating. The weight gain settled down for me snd I am prepared to put up with a dry mouth. I live in Australia. If it works I am too afraid to change or try anything else. Best of luck to you.
Thanks so much guys I really appreciate your messages. Have had a flare up today and tonight and so will reply tomorrow. Currently trying to sleep but with a stabbing ear (ice pick headaches I get too) and dizziness etc! Will be in touch soon 
night night for now xxxx
Hi Becksy.bee,
I’m fairly new on here too, but kind of find it a comfort reaing other peoples stories, knowing you’re not the only person going through MAV and the effect it has in our everyda life.
I can only comment on my experience with Ami and Nor. I’ve always suffered with some form of migraine headaches and I was put on Ami for that. I was only on the lowest dose but couldnt cope with the constant feeling of dopiness so then went onto Nor which, I cant say I’ve experienced any side effects.
I was diagnosed early last year with MAV after having the symptoms for 8 months. I started with eliminating the triggers from my diet, coming off the combination pill, having my daith pierced and, following my appointment with the neurologist, increased my dosage of Nor fortnightly until my symptoms were under control.
I was great for over a month until one day, all my symptoms came flooding back. This is my 5th week off work but ive found a combination of increasing Nor to 6 10mgs daily, 4 tabs of prochlerozine daily and removing acesulfame and amartame from my diet (which are linked to migraines and dizziness), im almost back to normal.
These forums are great for giving you ideas to try new meds or whatever, but we do still need to be open minded as everyones bodies are different. At the same time, it’s good to try and eliminate things until we do find what works well for us
Hey Scott!
Feeling bit better again and so getting back to all my messages! Thanks so much for sharing your experience of Noritryptiline, I really appreciate it. That’s great to hear that it’s meant to have fewer side effects and that it’s not soooo bad for weight gain. Sorry to hear it’s caused a bloating like symptom for you but as you say it’s better than MAV any day !
Glad to hear that the side effects you experienced got better or you got used to them. It just so happens that I’ve just got a letter from my specialist saying that my best med would be nor or ami ! So I’m glad to hear. Bit scared of swapping (cross tapering) from my SSRI to nor or ami (want nor) but hopefully it will go okay, going to my doctor soon to start the process. Thanks for your support xxxxx
Hi Sarah
Lovely to hear from you. Like you I found pitzotifen a life saver from the debilitating vertigo. I’m glad to hear it’s helped you with Ami and I totally understand the fear of changing anything if it works! Pitzotifen did work well for me but not only the continuous weight gain and sleepiness (been on for 3 years and can’t keep awake still) it’s stopped working for me so need to go onto something else. I’m going to go talk to my doctor and hopefully start nor but need to also change from SSRI (which can make migraine worse I’ve just found out from my new specialist!). Will keep you posted xxx thanks again
Hey Helsbels80,
So lovely to hear from you. Thanks for sharing your experience. Yes, I find it helpful, too- to hear others stories as it helps to know you’re not alone. I’ve had MAV for the last 3 years and although pitzotifen helped allot initially, it’s now stopped working and 3 years later I’ve gained 3 stone, too. So now looking at other options like ami and nor. Thanks for letting me know that ami made you feel dopey - as this is what I’m trying to get away from. As pitzotifen does just that (for last 3 years!). I’ve also just got letter from my specialist that says ami or nor would be the best for me. As I’ve said in previous other posts here I’ve said I’m on SSRI and to take nor I need to cross taper of it (also just been told by this new specialist that the one I’m on is known to make migraine worse ! After being on it for YEARS and YEARS of MAV argh! ). So I need to get off it. I start my very part time doctorate in September and so I’m considering whether to do it before first module or after. My MAV started the moment I stopped SSRI. But I think that as I’ll have nor going into my system then it might be allot better this time. That’s great to hear that eliminating these things out of your diet has helped. I eliminated so much for 2 and a half years but it never worked for me and so eating normally again. Do you’ve not gained weight on noritryptiline? So great to hear you’ve had no side effects.
Sorry to hear all your symptoms came back but so glad to hear that you’ve been able to get them under control again.
Yes, very true, we need to be open minded and remember our bodies are all individual, but also it’s very helpful to hear different options etc.
Thanks again and great to virtually meet you.
Xxxx
Hi,
I have been on nortriptyline for two years and have found it very helpful in reducing MAV symptoms.
I started on 10 mg/day and gradually titrated up to 75 mg/day, which my neuro-otologist said was the limit for MAV. I estimate it has reduced symptoms by 80%-90%. As it didn’t completely eliminate the problem, he added pizotifen 1.5 mg/day, which has had no effect whatsoever - it is like being on a placebo: no helpful effects, no side effects (no weight gain).
Nortriptyline has also been very good for relieving anxiety. I do feel a bit more depressed since I started taking it but that may be due to external circumstances, or it could be that reducing anxiety has exposed underlying depression.
Anyway, based on my experience, I think that nortriptyline is worth a try.
Good luck
Hi MrHeathcliff,
Lovely to hear from you and thanks so much for sharing your experience. It is great to hear that you have had a positive result from noritryptiline - sorry to hear that it did not reduce your symptoms fully, but its great to hear that it has helped 80-90 percent. Ah thats a shame pitzotifen did not help you and you didn’t get any positive side effects from it (but good no weight gain like I did). It seems that it is so variable according to our individuals bodies. Some of my friends have been on it and its worked but have gained weight, others it has worked and no weight gain, others still have had a similar experience to you and others, like me have taken it, it worked and gained weight and felt incredibly tired for years on it, and it has stopped working. That is great to hear that it is very good with relieving anxiety which is one of my main problems alongside MAV. Sorry to hear that you do feel a bit more depressed taking it. But thanks also for sharing that this could also be external circumstances and or underlying depression.
I had a couple of questions :
How long have you had MAV for ?? were you on any preventative before noritryptiline? How long did you take the pitzotifen for and was it okay coming off it ? what were the start up side effects like from noritryptiline and how long did they take to go? I’m a bit scared of starting it but at the same time I really do want to.
Thanks so much again,
xxx
I’ve had MAV for almost four years now, and I wasn’t on any preventative before nortriptyline. I’ve been on pizotifen for just over a year now - I’m going to see my neuro-otologist soon and I’m not sure if he will want me to keep taking it, given that it has had no effect (alternatively, he might bump up the dose).
The three effects of nortriptyline that I noticed when starting the drug were (1) sense of calm and feeling less pain (hard to describe, I wasn’t in any specific pain); (2) mild constipation; (3) dry mouth. I 'm still experiencing all of these; the latter two are bit of a nuisance but manageable.
In my opinion, it would definitely be worth giving nortriptyline a try.
That’s odd. My dry mouth disappeared completely and I thought Amitriptyline was supposed to give you more side effects …
, it doesn’t sound as bad as pitzotifen by a long mile 
. Thanks also for sharing about libido. I must say this has been one of the hardest upsetting parts oh being on the SSRI cipralex. I’ve been strongly hit with that one :(. And so it would be good to get off. Petrified as it all kicked and all hell broke loose stopping SSRI last time, including VM starting, but I think that if I have ami starting or nori (cross tapering) then it won’t be as bad. Xxx