I have been weaning of nortriptyline for about 1 1/2 months now and I went down to 10 mg a week ago. And…progressively the rocking feeling has been coming back. I drove a to hour round trip today and I was so carsick, ugh. At the mall, crowds bothered me for the first time in about ten months, as well. I know that I was very lucky to find a med that worked so well for me. Damn that weight gain!
I start Effexor soon. I think Hain likes it for the super motion sensitive and visual vertigo so I have my fingers crossed. I am one of the few on here that are not super med sensitive so I am hoping this is my shot to give this thing the heave ho for good.
How high did you get on the Nortriptyline? Personally, I found Fex to be too activating to me, but I did get some visual relief stuff before my dizziness kicked up, and then I had to discontinue. His website says he gets about 80% people well on Fex, so your odds are good.
Please let us know how it goes!
Kelley
I got up to 30 mg on the nortrip. Within about 4 - 6 months on it I was 95%. In fact, I didn’t know how much it was helping until I went mostly off. Unfortunately, the 35 lb weight gain that I couldn’t get rid of didn’t give me a choice. I have hope for Effexor! I will keep you posted.
wow how long did it take to put 35 lbs on did you change your eating habits or can these meds just mess with your metabolism? i like being thin but not sick but sure don’t want to gain that much. i can’t even imagine gaining that much i’ve always been fairly thin.
this must be really hard for you to come off something that made you feel better otherwise.
It took from February until now to gain that much. Plus nortriptyline is a tricyclic which may have this effect. I am one of the lucky 3% or something. Your metabolism is screwy plus I was hungry a more often. I used to joke about “second lunch” lol. I was very skinny to begin with - that may have been the only saving grace Don’t get me wrong, I wouldn’t undo the past 10 months for anything. I had my life back. I traveled and lived like a “normal” person. I am, however, sick of buying new pants every other month.
I would recommend this drug to anyone. It had very little side effect for me other than the obvious, and when you are too sick to leave the house, weight gain is really not that daunting. Apparently Effexor is supposed to work somewhat like the tricyclics which is why I have hope for it.
Amy – is there any way you can monitor your caloric intake on the med and stay at a certain level or was it just too hard? I know how difficult it is when you crave carbs etc. When I did round 2 on Cipramil I was aware of the weight gain issue and really kept my fingers on the pulse and never put the weight on again like I did the first time (16 kg or about 35 lb). It took some massive will power sometimes but I stuck to high protein and low GI carbs, made sure I was walking about 30 min daily, and it never went back on.
Just a thought in case you end up reconsidering Nori again.
For the last 5 months I really tried. I ate like a rabit (“second lunch” was only the first few months, lol), apples and carrots for snacks, did cardio for an hour 4 nights a week (running or eliptical machine), yoga one night…and I still kept growing. My GP told me 4 lbs a month for the entire time you are on it is not unusual. Before I went on it I could have eaten all day long and not gained a pound.
My GP did say if nothing else works I can go back on it and she will add a weight loss drug or something like that but she would rather not unless really necessary. That makes me feel good though that I do have a fallback.
HI Amy,
I am not sure what dose you are going to try on Fex, but you might want to consider Cymbalta. It has relatively low side effects, now incidence of weight gain, and sexual side effects. It is a balanced serotonin/norephinephrine reuptake in hibitor (sorta like Nort) where at low doses, fex only hits sero…it’s worked well for me and for another member on here…Colleen I think.
It is good for pain too…not a headache in over a year…
Kelley
I’m also tapering of my med (Prothiaden) for the exact same reason - the weight gain. I’m doing it really slowly and am now down from 150mg to 125. In a week or so I’ll go down to 100mg. I haven’t noticed any change in appetite so far - still hungry all the time and inhaling food. Scott, Kudos to you managing Cipramil second time round with will power. Will power doesn’t work for me - never has. Didn’t with smoking, isn’t with eating. I’m just hoping the appetite starts to decrease soon.
Vis MAV symptoms - I’ve had a few rocky wobbles and physiological anxiety in the last couple of weeks but that could be because I haven’t been getting enough sleep (changed work schedule). God help me if I ever have to do shift work again!
man makes me think at some point i’ll need to try Cymbalta too Kelley. sounds pretty good except i’d have to start by emptying pellets out of the capsules probably.
Thanks Kelley, I will try Cymbalta if the Effexor does not work out for me. Today is much better than yesterday - I am so happy that I m not in a real rut like last year at this time!
Chris - the tricyclics are known for weight gain - not so much the others. I guess it depends on how sick you feel with what side effects you will put up with. I literally would have cut a hand off to feel better last year. But we are all different. My old roomate took a much higher dose of nortrip than me and never gained an ounce.
Im exactly the same as you! I was 95-99% well on nory! Started weaning off and gradually it all started coming back! I too had weight gain! I am going back up on the nory as I tried another drug for 6 weeks and i was dying! Hope you do well on the effexor xxxxxxxxxx Lara
Hi Victoria! I am off the nortriptyline now, have been for two weeks now. I have had good days and bad days, but mostly good I would say. I can feel the rocking sensation again, but it is very mild and I hope it stays that way. I was nauseas and very moody coming off the nortriptyline but I stuck with it. I am also a little more motion sick than I was. On a better note, I feel much more awake and hopefully this weight will start to come off.
I have a bottle of Effexor that my doctor gave me but I am going to hang on to it if I continue to maintain like this. MAV has always come and gone with me and I hope that if I ride this out I will go into another “remission.” (Remission being 95%, haven’t felt 100% since all this started 12 years ago).
On the whole I am so pleased that I had nortriptyline when I was so ill last year. One year ago today I was home from work, crying and terrified that I would never feel better. (This was also before I knew I had MAV or what MAV was). I credit much of my good health today to this forum and the ideas i found here.
Please let us know how you are doing too. Good health to you!
Amy
Amy - that’s great news that you are doing so well after coming off the nortriptyline. I only managed to get from 150mg of Prothiaden down to 125mg (where I’m at now). At 100mg all the migraine junk started coming back. I stuck it out for a week before caving in and going back up to 125mg - where I’m cruising at about 90-95% (not great today but I blame that on Christmas over indulgence and crazy sleep schedule).
When I was first coming off the nortriptyline I went to 20 mg and then 10. At 10 the vertigo returned along with all the other fun stuff. I went back up to twenty and held there for a few weeks and then was able to come back down. Maybe you will eventually be able to come down too, just more slowly?
Just a note…I have been on Fex for roughly 9 months now. Overall I am well…still sensitive to motion, but if I keep my head pretty still I’m fine. I take a small amount of Ativan if the dizziness sticks…seems to really help. Regarding weight gain, I have put on 15lbs since taking it (oy), and my diet never changed. Trained for 4-mile run recently, and no weight loss ) but I’d still like to fit into my pants again.
My doctor is Hain, and he told me I’d be on this stuff for about 2 years, and then he might start weaning me off.
I will have another crack at coming off or down the Prothiaden. Things are kind of hectic now with the holidays - sleep schedule out, socialising etc but when things calm down I’ll try again.
Don’t get me wrong, I wouldn’t undo the past 10 months for anything. I had my life back. I traveled and lived like a “normal” person. I am, however, sick of buying new pants every other month.
) but I’d still like to fit into my pants again.