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Anyone have success with nortriptyline?


#1

So I have made a slow transition with my medication from topamax to nortriptyline. The reason I failed topamax was it caused insomnia which is really unfortunate because it was working so well. Currently I am on 40mg of nortriptyline and 25mg of topamax and since I have been weaning off topamax my daily dizziness has come back. I was wondering if people had success with nortriptyline and about how long till you should start seeing results. I have been on it for a month and just got to 40mgs. I am sleeping a little better so I am still going to stay on the 25mgs of topamax becasue i know it helps.


#2

Hello dizzydad. I can only tolerate 10mg of nortriptyline but that knocked the 24/7 nausea on the head in 12 hours. For all the other symptoms I have 12.5mg topiramate in the morning and 12.5mg in the evening. At first my sleep was disturbed but now I sleep a straight 7 hours usually and then go back to sleep for another hour or so. I have occasional break through mild dizzyness when I am really stressed, but I can do my housework, chop Vegetables wash my car, reach up and down into cupboards etc which I could not do before without major nausea and virtigo. So the combination of low doses of both meds works for me. I walk miles every day, deliberately challenge my balance, make a point of watching fast moving things on TV which I used to close my eyes to avoid, all in the hope that my brain will one day cope without meds but meanwhile I am very grateful for them. If topiramate works for you the addition of nortriptyline should help with sleep, just keep the dose low and maybe split the topiramate like I do or even just take it in the morning?


#3

I gradually moved up to 100mg of Nort after being on 100mg of Meclizine for last 16yrs…Meclizine started giving me terrible side effects. I’ve probably been on 100 mg of Nort for last 4 months and doing great…thank God. i hate to say this but I was at the end of my rope…I had enough if you know what I mean. One of the most important pieces of advice I can give is to be patient and give it time.


#4

Quite a few on Nort. I continue to generally improve on its cousin Amitriptyline. I keep the dose at 20mg. The higher you go the bigger the impact on your gut which is the biggest longer lasting side effect I find.

I still get breakthrough symptoms some days and I’m convinced there is a physical root cause to those but I’m getting much much better at handling those psychologically. Luckily I have some almost normal days now so it’s easier to shrug off the bad ones knowing a good day will come.


#5

I have been mainly on Nortriptyline since I was diagnosed in 2014. My neurologist thinks I should be taking 75mg a night, but I’m finding that 30mg is causing side effects (disturbed sleep, nightmares and intrusive thoughts) It has never helped with my sleep inertia, so to combat that I take 5mg Prochorlperazine a night, which helps me get up in the morning. I wonder if your specialist would prescribe you both if you can find a tolerance that works without nasty side effects. Good luck!


#6

That’s great to hear. how long did it take you to get up to 100mgs? I am trying to move up 10mgs every 2 weeks. I’m glad to hear you are doing well!!


#7

iam now on 60mgs of nortriptyline and im having some better days YAYYYY I also still have some crappy days but nortriptyline got me better last time and im sure its going to do the same this time :slight_smile: hang tight this does take time!


#8

Weegrumpy, consider a switch to Amitriptyline which is more sedating than Noritriptyline so should be better for sleep:

https://www.emedexpert.com/compare-meds/amitriptyline-vs-nortriptyline.shtml

I only have issues with sleep when the underlying symptoms of MAV overwhelm.


#9

I would say it took about 6 months to get up to 100mg. Dr says I can take more if needed…125mg to 150mg per day. I am also taking 60mg verapamil which also seems to help…it’s a good combination for me. Once in a while I sneak in a little meclizine on a bad day and thankfully It doesn’t give me bad side effects on low doses.


#10

Hey so I am on 40mgs of Noritriptyline and have been having chest pain off and on for the past three weeks. I have been to the doctors twice for a full cardiovascular check up and they have told me that the Noritriptyline is not effecting my heart in any way which is good. I’m curious has anyone else dealt with chest pain and discomfort from taking Noritriptyline? I know its a known side effect and i hope is just calms down as my body adjust to the drug. I feel like my anxiety is causing a lot of the pain as well. I am so frustrated with the side effects of these drugs. The drugs i have been taking work for me i just can’t handle the side effects so annoying!!!


#11

I started on nortriptyline 10 mg/day in July 2015 after being diagnosed by Dr Surenthiran. It helped alleviate my symptoms of MAV almost immediately. Since then I have titrated up to 75 mg/day, which I have now been on for several months.

The nortriptyline has greatly improved my symptoms without completely eliminating them. Dr S. added pizotifen 1.5 mg/day at my last check-up but I haven’t noticed any effects from that at all (neither improvement nor side effects).

The only bothersome side effects from nortriptyline have been dry mouth, constipation, and intense dreams. The first two can be alleviated with various products, but the intense dreams persist.


#12

hi there

I dunno if you will see this but I hope that you do. I’ve been on propranolol 150mg now for a month (I titrated up for almost 6 months to get to this dose) it has helped a good bit but I still do have that general off feeling throughout the day and sometimes a tingling sensation at the ack of my head as well as right ear pain , on and off tinnitus n ofcourse vertigi n some dizzy spells mostly when I lie down

I’ve had amitriptyline for a while but too scared to try it. when did u start seeing improvement on it and wat aspects did it help with the most?


#13

Hey Dina, don’t worry I’m always about somewhere :wink:

Amitriptyline isn’t that scary, really. The earth did not move. In fact it moves less :). I felt positive effects within about 4 days.

I will refer you to my older post for more details:

Hope this helps. You’ll be fine, it’s a :rabbit:


#14

You sound much like I was - at 130mg Propranolol for more than a year. I think many people need the maximum 160mg - or even more, courtesy of consultant only in UK - to get really good results. Also I think Propranolol seems very slow to really work well. I was at least 8 months on the higher dose before It really kicked it. Cannot really count the tirating period. I am finding now, after 18 months on higher dose symptoms really reduced and quite recently I’ve lost the tinnitus and my balance is almost as pre-MAV but I still get head pressure and breakthrough symptoms. MAV tends to recede over years, not months. You may find Nori works quicker and combination might be good. I think the off feeling really does linger. Helen


#15

thank u so much @Onandon03 and @turnitaround for ur inputs
sorry it took me a whileto get back to u been a busy couple of days and obviously didnt help the MAV sigh
@Onandon03 so you were on the 160mg for 8 months before u saw effects? any reason u didnt try an add on like ami or nori ?

@turnitaround it’s so encouraging to hear that it worked out so well for you! fingers crossed I hope u remain as stable as u r now n continue to be a success. I think I wanna try it but the way I see it right now is

  1. continue propranolol at 160mg n see if that helps (not favorable as its a long waiting period as it may or may not work)

  2. add on ami (although anxious as pt sounds like a major drug)

  3. verapamil? and stop propranolol but afraid of relapse if verapamil isnt the correct choice

do u think ur long lasting relief was mainly related to ami?


#16

No, I suspect it helped though, mainly in reducing anxiety, which is a known exacerbator.

I suspect in my case the reason I improved was because the cause of my MAV was known - a one-off trauma.

Nature has done its thing and healed me sllowly.

I don’t believe I have any genetic reason to have MAV.

If you know the cause of your MAV that is always the first thing to resolve. (Recently we had someone with a sinus issue and in the past we have had someone with a cholesteatoma)


#17

I think my MAV started after my first episode of BPPV in 2015 (was triggered by major stress as my father passed away at the time and things were very stressful) but also the BOPV wasnt resolved with any maneuver till I got the 2nd episode in 2018 and it was major an dmuch more severe than the first but was treated through epley and another maneuver by a great ENT who actually diagnosed me with MAV even before the BPPV.

oh and recently I had my wisdom tooth removed a coupd of days ago and I feel better in terms of ear pain and sinus pressure but it’s this off feeling and light headedness and a weird spinning like feeling at the back of the head that’s really bothering me. did u have any of those initially and did the ami help with that?


#19

I think BPPV is just a sign of MAV and all part of the same condition. I think MAV will turn out to be caused by an unstable inner ear, but the testing doesn’t seem to be sensitive enough to pick up on this yet (mainly because the testing is a time slice … you don’t walk around with monitors all the time). Having said that, fluctuating tinnitus is probably the only evidence you need of a fluctuation. MAV has caused me mild hearing loss I didn’t have even after my initial injury so in my case it was obvious it was inner ear related. I think the reason is obvious - MAV is just all the outcomes of your brain struggling with a fluctuating vestibular response from your ear, a response you aren’t directly aware of until your brain starts to struggle to make sense of it.

If there is any non-genetic cause of both you need to look for it before your BPPV, possibly years before. MAV could take years to develop. Mine developed over 6 months after my injury during which I had virtually no symptoms.

For those that have not had an ear injury they will surely identify the driver one day - it doesn’t just happen, you don’t ‘just’ get migraines from nowhere.

I think medicine is just papering over the cracks at the moment and not addressing the cracks.

Ami doesn’t stop spinning I don’t think, might dampen the sensation though (as it generally dulls your senses).

However, if you look at the science more closely, there maybe an additional benefit of these drugs:

They say that Eustachian Tube Dysfunction can cause inner ear pressure to get out of whack. If you have inflammation in the middle wear for any reason you create more mucus. This can block the Eustachian tube and possibly influence the inner ear pressure in a negative way. This could be one of the exacerbators of some forms of MAV.

Now if you take an Anticholinergic drug like Ami, it may reduce mucus production which might have a positive effect in the middle ear and help reduce the negative influence on the inner ear. Just a theory.


#20

What anesthetic were you under for wisdom teeth extraction. Lindocaine, one of the mostly commonly used,is known to have adverse effect and interact with Propranolol. Helen


#21

Hi

I was on Propranolol at a higher rate for 8 months before the 24/7 dizziness started to stop, initially for a couple of hours then back, then half a day and back it came and gradually over weeks stopped, just returning when balance really challenged. I had some success at 130mg. It very gradually reduce light sensitivity and vertigo, and my tolerance thresholds increased. It’s kept on improving and now, 18 months later I still see improvements regularly. I wasn’t tempted to add in because I read Dr S said to expect 70% improvement after 9 months and I’m patient so I waited and was rewarded. Luckily. I was told subsequently I could add in Ami but haven’t done so which was fortunate because I’ve very recently discovered I’ve contraindications for it, by pure coincidence, so lucky again.

Looking at yr listed options, I’d stick with Propranolol for the full 9 months and add in Ami if you want. I understand it’s believed to work in different way from Propranolol. Verapamil works like Propranolol. I wouldn’t see any point leaving Propranolol for Verapamil at this stage. You cannot take the two at the same time and Verapamil will also prove a long haul like Propranolol and you’d be leaving the known for an unknown together with another long wait. What’s the point in that. Some plp see results from Ami after a matter of days. It’s predicted to take effect within 4 weeks I understand. It’s unlikely any drug will stop all symptoms and imbalance tends to linger longest it seems. All three drugs are major drugs as are most drugs used for MAV. Propranolol and Verapamil I understand alter brain chemicals. Helen