Hi
I was recently diagnosed as having chronic vestibular migraine by the ENT and Neurologist as a consequence I'm now taking a small dose of Nortriptyline as a migraine preventative. It's a tricyclic antidepressant but at low doses has shown success with other conditions like migraine and chronic pain.
Even though I'm now taking 30mg daily (much lower than a dose for depression for example) is it likely to affect my thyroid medications. I make sure I take them well away from each other.
hello there, I also take a migraine preventative every day.I take amitriptyline(think it's same type of thing as nortriptyline).I take 20 mg every night.I have not been told there is an interaction by either my Gp or endocrinologist.I have been taking it since 2014.I have been on thyroxine since 2018.I take my amitriptyline about 1 hour before bed and my thyroxine in the middle of the night when I use the toilet.I always make sure I leave at least 4 hours between the 2.Hope this is helpful.
Hi
Thank you, yes they are the same family but Nortriptyline is meant to be easier to tolerate. Amytriptyline had too many side effects for me. I'm slowly titrating up but 30mg seems to be showing some improvement. Have you found it helpful,how long have you been taking it if you don't mind my asking?
Sorry just seen you've been taking it since 2014. Doh. Migraine brain lol.
yes 2014.I have had migraine with aura since I was a teenager and tried many things over the years.Mostly once the attack started for example triptans.They stopped working for me.My son suffered a serious illness in 2014 and I think the stress made them worse.It was then my GP suggested a preventative.I started on 10mg per night and that worked for a year or 2.I then went up to 20 mg per night.I did get migraine but they were less frequent and less severe.I could function instead of vomiting for 24 hours and being in bed.I have graves disease and my overactive thyroid made them worse for a time again last year and the amitriptyline was no longer enough.My GP didn't want to increase my dose so he started me on 20mg proprananol (a beta blocker) 3x a day as well.This has worked.So I now take both.I had a thyroidectomy in June this year and feel alot better.I still take everything and it seems to have solved the problem.I do get the aura but not the headache.No-one has ever mentioned stopping them but to be honest I would be scared to change anything as it seems to be working for me.Wishing you good luck with everything.
I had migraines very infrequently from adolescence onwards, I could go for years without having one. I got diagnosed with underactive thyroid in 2020, was also going through menopause at this time as well. I had more migraines with aura in the last two years than I had had in my whole life.
I dont know if it was hormones or what but it came to a head in April ( excuse the pun) when I had a nasty migraine one day then the next started feeling dizzy, and really off balance which has never gone away. I've now had it for 6 months and it's so debilitating. Weirdly only had one migraine since it started.
Both ENT and neurology consultants think it's known as MAV, migraine associated vertigo aka vestibular migraine where you can constant rocking, swaying, imbalance , dizziness and light-headedness, instead of the migraines. It seems to attack the inner ear. Treatment is much the same as for classic migraines. I was prescribed low dose propranolol but only took one and it aggravated my asthma.
I'm hoping the Nort works, I'm very med sensitive and this is the fourth drug I've tried. I'm tolerating it so far and am hoping it works. Thanks for the reply and hoping you get good control of your symptoms.
sorry to hear about your health problems.That type of migraine sounds horrific.Hope you find success with your treatment.
Hi Sparklingsunshine
After many, many years of migraines, and the occasional (every 3 months) episodes of severe Vertigo, leaving me bedridden for days. I have over the past 5-6 years been ping-ponged back and forth between ENT and Neurology, and finally given a diagnosis of Migraine associated Vertigo.
Having just read your reply from a couple of days ago, I can completely relate to everything you have said. I am convinced the worsening of my migraines over the past few years is hormone/menopause related; but i keep getting fobbed-off by the Consultants, who say its unlikely !!. They send me off with a different set of tablets to try, usually with side-effects worse than your original ailment. I had previously tried Propranolol and before that Topiramate. I am currently taking 30mg of Amitriptyline, and after a year, still struggling with awful side-effects, and unable to do anything other than go to bed within 30 minutes of taking them. They have recommended switching to Nortriptyline as they say the side effects are less. I am very nervous about a straight-switch in meds, as have had a lot of problems with side effects already, and don't need any additional triggers for my migraines.
I have never heard of anyone else with MAV, people just don't realise how debilitating it is. Sometimes i don't even get a migraine, I can roll over in the night and feel slightly dizzy, and by the time morning has arrived, i am completely bedridden, unable to move with severe Vertigo, nausea, occasionally upset stomach too. Unable to eat for days, just managing a few sips of water at a time. At this point, the migraine will arrive !. I have never managed to find a way of stopping the Vertigo, once the dizziness starts, its just a case of riding it out.
Would love to hear from you xx
Hi
Good to hear from you, I've had sod all help or advice from the NHS, apparently MAV is a rare subset of migraine so there aren't that many specialists and doctors seem to know very little about it. I've had GP's googling it even.
I've learned loads from a migraine and dizziness forum I joined. I've found out so much about MAV and the right medications to try. its an international one but there are Brits on there. Migraine is a form of central nervous system hypersensitivity. I also have Fibromyalgia which is another form of CNS, so migraine is quite common for us Fibros.
As well as getting on the right meds lifestyle changes like giving up caffeine are recommended, avoiding any trigger foods like cheese, chocolates, red wine etc. Making sure you get enough sleep, tricky for me with Fibro. Getting some exercise if you can. Reducing stress, haha easier said than done. I wasn't anxious before I got dizzy but I sure as hell am now.
Were you ever given any balance or Vestibular Rehabilitation Exercises (VRT) to do? I've got a sheet of them and they can really help retrain the brain to compensate for balance or dizziness. They can be found online on YouTube. I do mine several times a day.
Honestly I would say if you are as incapacitated as that then you need another migraine preventor. You've either built up a tolerance or it's just not working. Nort does have less side effects than Amytriptyline, I gave up on that as it made me shaky. Its less sedating and weight gain is less of an issue. Medication sensitivity is very commonif in migraineurs.
I would ask for a referral to a headache specialist. Have you ever been tested for BPPV ? I was tested or that by my GP doing the Epley manoeuvre. Turning over in bed and being dizzy can be a sign. If Nortriptyline doesn't work for me I'm temped to ask for Venlafaxine extended release, as a migraine specialist in Chicago has had very good results for MAV on that.
Hi
Thank you for your prompt reply. I would be grateful for details of the migraine and dizziness forum you mention, any extra help is always a bonus.
I have never managed to find any specific trigger foods, but lack of sleep and stress, as well as eye strain from too much computer use, all seem to cause me problems.
Yes, I have been given pages and pages of exercises to do. I was referred to a Physio and then later a balance specialist, who have both acknowledged that there has been little / no progress, on the improvement front - and the vertigo episodes come regularly every 3 months, whether the exercises are done or not. I keep a detailed calendar log of each episode, so i know approximately when the next one is due 
I've had so many god-awful tests over the years, and all have ruled out problems with my ears. But I have always had an issue with repeated right ear infections, hence them continuing (unsuccessfully) to find a link to the vertigo. I think the specialists have ruled out so many illnesses, that they have labelled me with MAV, as its the only thing left on their list !!. They say definitely not BPPV, or Meniere's.
I am still convinced the migraines are HORMONE related, the GP seems less convinced, but has agreed to increase my Estrogen HRT patches, to see if that makes any difference. I had the Autumn Covid Booster, and Flu Vaccine on Tuesday, one in each arm; which resulted in no sleep that night, that has now kicked-off another migraine episode, which doesn't seem to want to shift. Just keeping my fingers crossed that it doesn't morph into Vertigo, not that i can stop it. I think i will be waiting a good few days, for things to settle, before trying to swap over from Amitriptyline to the Nortriptyline. I've between told a straight swap from one to the other is fine, but having Googled it later, people have experienced problems doing this, so don't know what to do for the best.
The last visit to Neurology prescribed swapping to Nortriptyline, but it has taken months for the recommendation letter to get to my GP, and they won't act until they are advised by the specialist. If the Nort don't work any better, then there has been mention of an unlicensed medication, only prescribed by the Hospital (unfortunately i can't remember the name of it - brain fog). But, i'm not really liking the sound of that !
Hi
There's a new class of migraine drugs, CGRP inhibitors, been licenced since last year, they are injectables or pills and need to be administered either monthly or quarterly, depending on the drug.
They are meant to be more effective than Triptan or migraine preventors. Some people on the forum I use have had very good results. I think they can only be prescribed by a consultant not GP.
The NHS criteria is if you've tried 4 other migraine meds from different classes, ie beta blocker, antidepressant, antiepileptics etc and they haven't worked. Side effects of course but usually well tolerated and of course the are side effects with everthing. How did you find Topamax, I was recommended it by neurologist but it has a lot of side effects and isn't rated that much by forum users.
Seems a bit of a Marmite drug, you either love it or hate it. I can give you the name of my forum if you like, you don't have to join. I lurked for ages just reading posts.
ps Had my covid booster last week but held off flu jab until next week, didnt 't want to overwhelm my system
Thank you very much.
The Topamax wasn't much fun, I think it was the first med they tried. All I can say is, it was almost impossible trying to hold down a full time job whilst on that. I was going home lunchtime to sleep, and couldn't even string together a proper sentence - total absolute brain mush !!!
I'd heard that, also seems to cause hairloss as well which can already be an issue for thyroid disease sufferers, glad I dodged a bullet here.
Sparklingsunshine
You can check drug interactions on drugs.com
go.drugbank.com/drug-intera...
Here is their entry for Nortriptyline and levothyroxine in the screenshot below. I would take them at opposite ends of the day.
Hi
Thank you. I leave 6 hours between them. I didn't know if I'm likely to need more or less thyroid meds but it's a small dose so maybe it won't matter.
See how it goes, maybe retest in 2-3 months to see if levels have changed, if necessary get GP to change your dose of Levo.
I take 25mg Nortriptillyne as a migraine prophylaxis. I also take T3 only. The T3 I take first thing in the morn8ng and the Nortriptillyne I take when I go to bed as I was waking every day with a migraine. I rarely have them now.
Clemmie
Thanks, Its the fourth medication I've tried as I'm very mad sensitive which seems very common among migraine sufferers. I joined a dizziness forum and have found a gold mine of information on there. IBS is also common amongst migraineurs. There seems a link between disordered brains and disordered guts lol. Glad the Nortriptyline is helping you, hoping it gets rid of my balance issues. On the forum I use Nortriptyline is second only to Amytriptyline for effective migraine prophylaxis.
How are you going with the nortriptyline and any side effects?
I couldnt continue on it, gave me headaches and rapid heartbeats, same as Amytriptyline. I've been on Venlafaxine since January and its been a huge help. Apart from a bit of nausea I've not noticed many side effects.
That’s good to hear. I haven’t tried anything yet as I’m too scared of the side effects.
I guess you have to weigh up which is worse, the migraines or theoretical side effects. For me the dizziness and 24/7 imbalance was intolerable. I had no quality of life and needed something to help control it. Most migraine preventatives are given at a much lower dose than taking something for depression or blood pressure. So side effects should be minimal.
Thanks for sharing your experience 🙂
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