A little background: On 10/22/18 I started 10mg of Amitriptyline, and increased to 20mg on 11/6/18. I had a really difficult time getting on Amitriptyline, but finally after about 6-8 weeks the side effects lessened and my symptoms improved a lot too. I went up to 30mg on 1/6/19 and stayed there until August doing pretty well (I’d say 85-90%) when I slowly started to wean off for a few reasons. Fast forward to March 2020 and my symptoms crept back in with some new ones making an appearance as well! My worst symptoms are a lifty, rocking, unsteady feeling when I walk, which sometimes feels like the floor is going up and down and also gets worse when I try to vacuum or sweep, a ping-pong feeling in my head, and visual vertigo and just feeling really yucky when looking at screens for too long. A weird thing I’m noticing is I feel 100% when I’m driving or a passenger in the car. Strange.
My question: I started 10mg of nortriptyline on 5/18 and increased to 20mg on 5/27. It seems to be helping my visual vertigo with screen use (still have to limit screens but it’s better) and the ping-pong feeling a little, but the other sensation is the same and very frustrating. Should I stay at 20mg for awhile or should I keep increasing since I was on 30mg of Amitriptyline last year?
If it’s any help I’d say the unsteady/unbalanced feeling, disequilibrium as it’s called, is the very essence of MAV I believe and Is generally the feeling which hangs around the longest. It is the false motion which is the dictionary definition of vertigo. And, from what I noticed reading around on here over time, Nortriptyline doses tend to run bit higher than Amitriptyline ones which figures because Ami I understand is more potent. Whether you have given your current dose a sufficiently long time trial I wouldn’t like to say. Maybe the doctor might help there.
Thanks for the reply @Onandon03. Interesting about the amitriptyline being more potent. I did well on 20mg…maybe I should switch back. Hmmmmm. I’ll talk to my dr.
I am in 30 mg Nortriptyline from Dec 2019 and still i feel awful. But Dont lose hope some people find relief on small doses and others no.
The doctor advised me to keep going up until we reach the maximum planned dose (he put different maximum dose for each patient i dont know depends on what maybe the age/weight etc). I was hoping that i find relief on 30 Mg thats why i stayed long time on this dose but i found that i waste my time.
And unfortunately, Currently i cant go up more than 30 mg for some reasons.
All important in getting this Beast under control is reaching a sufficiently high enough dose that will stop most of the symptoms much of the time because until we get a clear head that dizziness/imbalance/rocking call it as you will just ain’t going to go away. Therefore an optimum dose is essential otherwise in my book you may as well not bother with preventatives.
Hope please don’t think I am getting at you. I am not. I am just speaking from my own experience. These are my own personal findings. Let me explain. I had no condition management whatsoever. Neurologists just diagnosed and said to take preventatives. My own doctor knows virtually nothing about that. She prescribed Propranolol, an excellent choice but left me to decide how much to take. However she did keep telling me to keep the dose as slow as possible despite continuing life restricting symptoms so I ended up struggling on 130mg for several years. Things only really improved after I saw second neurologist who told me to gradually increase to 180mg. I stayed there nearly two more years until I revisited that neuro and she told me to either increase (up to 240mg max) or quit them altogether. I upped to 200mg and just that extra 20mg has made a huge difference. Success on gaining control depends on stopping the symptoms because they just keep the vicious cycle running.
From my own experience I will stick my neck out here and say if 6 months of Nortriptyline at 30mg isn’t doing enough it’s time to make some changes. Lots of people on here have done well on 30mg of Amitriptyline but most who have had good results with Nortriptyline tend to be on 70mg or more. Titrating up to that level and allowing sufficient time trial at each dose would certainly take some time but could prove worthwhile in the end.