Whether to quit Nortriptyline or not.

I’m currently on Nortriptyline, have been on it since August this year, but not continuously. I had a break on doctor’s advice due side effects. Also had impending ENT consult and didnt know if they were going to tell me it was Menieres or ETD, neither of which respond to antidepressants. Anyway the ENT agreed it was VM or PPPD. So i went back on Nort beginning of October and have been slowly titrating up. I didnt bother goig back on 10mg as I’d already tried it and it wasnt doing anything.

Now I’m on 35mg and have been for about 10 days. The side effects are becoming a problem. I’ve got a headache every day, a persistent dull ache across my forehead. Sweating has increased, I’m also noticing racing heart and some palpitations. On the plus side its definitely helping with my sleep, which has been a big issue for me for a very long time. I’m less fatigued, but so far the Nort isnt really helping with rocking or lurching. My balance is still poor and I’m very aware of it when I stand up or walk.

My question is do I quit the Nortriptyline and try something else, do I carry on on my current dose and hope it starts working, do I just need to be more patient? Or should I drop the dose back down again to say 20 or 25mg? I had high hopes it would help me as it seemed to help many other members. Just feeling very dejected today.

Notriptyline is the only medicine that has helped me. I started with Amitriptyline, which had heavy side effects. Nortriptyline is the active form of Amitriptyline, and has much easier side effects.
What you are describing is exactly right. It will give you the headache side effect when you up the dose and with this medicine you can’t change the dosage too fast. You have to titrate up very, very slowly taking weeks in between. To go from 0 to 35mg of Nortriptyline would take me many, many months, about a year. Since I started on Amitriptyline in February 2021, I broke the 10mg pill and started with 1/4 of it, so 2.5mg. When you up the dose, you stay on it for a few weeks. I switched from Ami to Nori last October 2021 and I was on 20mg then. Now it is October 2022, and I have finally reached 40mg!!! So you see, that is a year’s span in between just for 20mg. It has to be done very very slowly and carefully.

Nortriptyline is a WONDERFUL drug. It is the only one that has helped me, and I have tried several. Remember Nortriptyline will take several weeks to work once you reach the dosage. So yes, you are right about being patient, and yes, please drop the dose down to the one where it was tolerable. The palpitations, headache, and sweating happened because you moved up the dose too quickly. Since Notriptyline comes in capsules (unlike Ami where I could break the pills in half or quarter), and you can’t open the capsule so when I start upping, I alternate the dose in my weekly pill box. So 10mg Monday, 15mg Tuesday, 10mg Wednesday, 15mg Thursday etc etc, until you can stay on the higher dose and then even it out. You will have a slight headache when you are upping but it will go away when your body has adjusted to it.

So words of advice from me: Go very, very slow. Be patient and know that it is working. Up the dose by alternating and then stay on that dose before upping it again. That process alone would take several weeks. Yes, and it has been God send with the sleep. I suffered so much insomnia, neck pain and half sleepless nights before and now when I wake up in the night, it doesn’t take me too long to go back to sleep. I hear you about feeling dejected, but you don’t need to anymore because it is a very simple problem to fix. You will be helped and feel much better with the Nortriptyline.

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To be honest its never been tolerable. I’ve got experience of Nort, Ami, Cymbalta, Sertraline etc as I’ve got Fibro and many of these are prescribed for that. I was on Amitriptyline for years for nerve pain and insomnia until the side effects outweighed any benefits.

I’ve never been able to tolerate them and as I already suffer from sweating problems anyway due to the Fibro, antidepressants always exacerbate it. I was very sceptical about taking the Nort but hoped this time around it might be ok. I’ve decided to stop it. It wasnt helping and I feel worse on it than not. Its done nothing for the balance issues unfortunately. Thanks for the advice anyway.

I’m just sticking with Betahistine for now. It helps dampen down the rocking and I can at least take it without side effects. I’m taking a break from migraine meds. I’ve tried 6 different ones and they either had intolerable side effects or did nothing. I’m going to give my body a break and see where I am. If, as I suspect its far more PPPD than MAV that I have, then most migrane preventatives probably won’t work anyway. Treatment is VRT, counselling via CBT and SSRI’s or SNRI’s which I cant take.

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MAV is defined by its symptoms not by an aetiology.

I personally don’t think migraine is the cause of anything, it is the result of something: the A in MAV is Associated, not Caused. That’s for a very good reason.

For example, I’ve not had a migraine in years, yet I still have persistent tinnitus, go figure!

As such if PPPD has the same symptoms as MAV, then what is there to choose between them?

The struggle people have finding a medication that works is not surprising, because none of it is based on first principles, it’s just based on stats.

It’s not like the doctors have worked out what is definitely going on at a molecular level and then created a medication that reverses it, far from it! All they did was take medications that existed already, tried it with their patients and found that it reduced the symptoms of enough people to recommend they try it. That’s it!

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I totally understand! I have had all three neurologists and a headache specialist give up on me!!!

I have symptoms daily, and bad occipital migraines, worse that I am a teacher and those hallways and rooms with fluorescent lights do not help me at all. I can’t take sounds, and living with my 16 year old at home does not help. Stress is through the roof in my life. I cut my teaching hours and take a 50% salary but work full time, because that is what life is like as a teacher.
I totally understand you were not able to tolerate any meds. I have been on a dozen myself and each time, the doctors blame me for the drug not working!!!

I feel as though you are taking words out of my mouth: None of the migraine meds they prescribe work on me. CGRPs injection Aimovig, Ubrelvy, Nurtec, Imitrex, Qulipta…also Sertraline, Meclezine, Promethazone…the list is long of all the meds I failed…the headache specialist kicked me out because I messaged him to ask him and report my condition and he said I wasn’t “happy” with his office and said I was discharged. He got rude and nasty. Got sent back to neuro #2 and he was angry why I got sent back to him!!!
My Primary care doctor thinks the problem is with me that I can’t stay with any doctor!
Please don’t feel bad. I live with horrid migraines each day, despite being on meds. It’s either I sit and do nothing all day (not possible) because this whole life is my trigger (sounds, smells, screens, stress, lights, movement, phone calls- the worst)

The only reason I feel Nori does something is because I’ve come this far and if I didn’t have that in my system, I would be worst off.
A point: I ordered a couple of books from Amazon by a doctor called Alexander Mauskop. In his first book he talks about the triple therapy with Mg, Ribo and Feverfew in a supplement called Migrelief. His second book is called 150 ways to end your migraines. It’s published in 2021 so it talks about the new drugs too.
i just pray every day to get me through. I want to travel a bit, and my last trip I threw up all over the city of Paris, because I woke up with Vertigo the day my flight was coming home. How I made it to the airport is quite a story!

I just try not to waste money so I can live in my part time paycheck. Nobody including my closest friends understand my condition. It is what it is. Just trust yourself with whichever med you think is the right route. The worst will pass and you will feel things getting easier. It’s been three years since this started and it has taken many shapes and forms. The rocking will leave. The swaying took more than a month to get better. Keep Valium 2mg by your bedside for the day you wake up with it. I have Ativan 0.5mg I just keep with me incase I have dizziness coming on. Just be aware and avoid triggers if you can. I know easier said than done! For me life is a trigger.

Sending you healthy vibrations.

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I’m in the UK and doctors here are very reluctant to prescribe Benzos. I’d quite like to try valium or Klonopin but its never been offered. I saw a locum GP today and frankly he was as much use as a chocolate fireguard, nice but useless. I’ve apparently exhausted the drugs they can prescribe in primary care, ie Propranolol, Amytriptyline and I refused to try Topamax. So now they’ve got to write to the Neurologist for advice or if he wants to see me. So a waiting game again. I’m curious if anyone has ever tried Low Dose Naltrexone for migraines here?

Have you considered taking Pizotifen? I have been on it since May 2021 and I found it very useful. It has very few side effects, the main ones being fatigue and increased appetite.

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I’ve considered it but the weight gain is a red flag for me. Having an underactive thyroid means I have to be very vigilant already about diet and exercise. I dont want to take anything that can cause weight gain if I can avoid it.

I’m using Low Dose Naltrexone for my immune system as I was getting frequent sinus infections. I found that I have to be very careful with the dose. I’m currently on 2.5mg LDN, every time I tried to increase up it actually gave me a migraine. I think it’s because it feels like it raises my internal temperature a bit and if my head gets too hot, I’ll get a migraine. But we’re all different so I think we each have to figure out for ourselves what works…

The headache specialist suggested the 2mg Valium to keep by my bedside in the case I wake up with the horrid attack. I have only had to take it once. Now that I am no longer his patient, I asked my primary care physician at my physical but he said he already prescribed the 0.5mg Ativan (that I use very infrequently) for when I need emergency help. Again, I only fill them once a year but have the assurance that I have it on me. My doctor knows that I use it very infrequently otherwise he would not prescribe it. He told me in the case of the attack, I could take 2 of the 0.5mg Ativan. It turns out that the Ativan vs Valium… The 0.5 Ativan is equal to 3.8 Valium…so I cut the tiny Ativan pill into an even tinier half pill. Doctors here do not write refills on these to use as controlled substance so if you tell your doctor about the Valium, you can fill it just once a year and have it on hand. I only fill mine once a year and then throw up the full bottle when the year is up. My main symptoms, have been feeling nausea and sensitivity to motion (for vestibular migraine) and then I also have the regular migraine symptoms that are worsened by triggers of sound, lights, stress, smells/odors, talking on the phone and driving). It seems the illness changes itself and some days like yesterday and today I had more nausea in the mornings, but then it is gone later in the day. I think I am a horridly difficult “intractable” case despite being on the 40mg Nortriptyline and the every other day Nurtec.

Well I’ve not felt any worse not being on Nori, I quit 5 days ago and the daily headache and shakiness has gone. So a big plus. I’m still unbalanced but it waxes and wanes. Its certainly not all the time. So I made the right decision there.

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When I came off Amitriptyline (after 1.5 years!) I still felt unbalanced, with periodic neurological “episodes” but no major migraines nor vertigo. At this point, I decided to tough it out and eventually all my symptoms bar tinnitus subsided.

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Thats pretty much what I’ve decided, I’m clearly very med sensitive anyway, even before this started, I’ve always struggled with side effects and looking at the wide range of meds other members have tried they all seem to have a long list of adverse outcomes.There didnt seem to be a MAV drug with minimal side effects.

I’m hoping to start some CBT in a couple of weeks with an NHS therapist to find some healthier strategies for coping with anxiety. I genuinely dont think I was anxious pre balance issues but i know I am now. I know anxiety can exacerbate or prolong dizziness etc, but I dislike the easy label that doctors use, to ‘blame’ the patient.

If CBT doesnt work then at least I can say I tried it. I’m going to just try and either ignore it or just get used to it and hope in time it’ll get bored with me and sod off.

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Dizzy, this is a really good strategy. Doesn’t necessarily have to be CBT of course, but a good psychotherapist worth their weight in gold, imho.

These symptoms are very disturbing, but the psychological impact can improve significantly as you get more used to them. And I found that a reduction in anxiety probably did lead to improvement in the condition in general, whilst improving quality of life in the meantime.

I’m not quite back to where I was, but I’m not that far away. I would no longer be on this website much if it wasn’t for that fact that I run it! lol

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