I was diagnosed with MAV about three weeks ago. My symptoms are a swimmy head, lightheadedness and it’s worse when I walk. These symptoms have been 24/7 for about two months.
I have looked into PPPD more recently and feel my symptoms are very similar to this also, as I have a history of anxiety. I have heard MAV and PPPD are treated in similar ways though. (Is MAV considered to have anxiety based roots like PPPD?).
Anyway my doctor put me on 10mg Nortriptyline for three weeks and I have an appointment on Thursday to review matters. I don’t feel a huge amount of difference since being on the tablets. Should I stick it out for a bit longer? I have heard Nori takes about 6 weeks to have an effect and I am hoping to increase my dose. What was the dose most people have had success on and how long from starting that dose have your symptoms gone down?
My side effects so far have been tiredness and constipation. My doctor gave me vitamin b2 which I take daily and I also take multivitamins and magnesium daily. The constipation is a bit annoying but am increasing my water and have started taking fibre supplements. I take my 10g of Nori at around 10pm before I go to bed. If anyone had side effects with this do they eventually go away and if so, when?
This is such a dibilitating condition, I don’t have any motivation to do anything or plan holidays as just doing simple tasks like cooking and walking causes my whole head to spin with head rush.
Any advice welcome, I am also considering asking about Zoloft as that has helped me with depression in the past. I have heard MAV responds better to Nori and PPPD to Zoloft. Can I take both?
Also worth mentioning I am cutting down caffeine, going from 3 or 4 a day to one in the morning. My doctor has also told me to avoid red wine and cheese. I am also cutting back on alcohol in general.
hey! well, there is a debate of whether PPPD and MAV (and even mal de desembarquement) are totally different entities, or some form of migrainous brain. Anxiety is a trigger for sure, and also worsen the symptoms. In terms of time, Dr. Hain (a well regarded specialist) says between 4 and 6 weeks to see symptoms reduction. The dose is each person’s dependent. For example, I take venlafaxine (generic for Effexor) and I am on a high dose (150mg) and still with a lot of symptoms, mainly the rocking. Others take less than 37.5mg and have found relief. So, the role of thumb is if side effects are tolerable, and you see some symptoms reduction, stick with the med.
I think you can combine meds, but your doctor is better at advising there.
Another good rule is to start moving, even if it is uncomfortable. Don’t plan holidays, but plan your afternoons or weekends, go for walks, for a swim, something that distracts you. Try to do you house chores as normal as possible, that is the best vestibular rehabilitation.
There is a ton of info here, so read through the posts, try not to get anxious and go slowly. This unfortunately takes time, but people get better, and you will soon.
Which even then I doubt is a root cause.
“a migrainous brain” may prove to have to have some external sensory instability as a driver.
Given I personally had a physical insult to my ear which lead to identical symptoms to ‘VM’ I suggest this is possible. I know i’m not alone on this forum having this condition post-trauma.
so possibly an inner ear issue
or an inner ear issue caused by some physiological instability somewhere else … which might explain some idiopathic instances.
and this explains the emphasis on the vestibular symptoms.
there’s a study which links diabetes to inner ear instability, for example.
Anything which influences the concentrations of the components in perilymph and endolymph could be implicated.
It’s not very productive to discuss this topic without going into great detail about the physiology involved which is hugely complex imho and almost certainly doesn’t just involve the brain. We’re not lego and you can’t just disconnect one system from another.
Welcome to this forum. You will find alot of your answers amongst the Welcome and Wiki pages on this site. It’s also easy to search the site for any specific subject ie the various drugs etc using the ‘Search’ facility. You’ll find plenty of relevant general information relating to migraine diet, lifestyle changes etc within the Welcome/Wiki sections. If you check out the Success Stories section you’ll find Daniel’s story and he achieved control of MAV eventually reaching 70mg Noritriptyline which may give you some initial ides of how things might go for you. You will find MAV is a very individual condition and there is very little about it that’s predictable or exact. Everyone has different experience of it and with it. However the experiencevof others often gives good indications.
MAV stands for Migraine Associated Vertigo and is not a result of anxiety. People with it often experience anxiety as a result if it but not caused by it. If you have been diagnosed with MAV presumably you have a migraine background, otherwise it would seem odd. Some plp with MAV may go on to develop PPPD or similar later I suspect. It certainly is debilitating. That’s a fact. Treating it is no exact science either I’m afraid. Generally they say preventatives can take 6-8 weeks to start working although usually you feel some benefits before that. Side effects can occur at any stage. A sensitivity to medication is common amongst people with migraine/MAV generally. Some don’t experience any side effects. Side effects affect everybody differently. No hard and fast rules. Most side effects go once the medication is stopped or once the body adapts to the drug.
Noritriptyline has a good success rate with MAV and is well proven and established in Use for preventing migraine. It seems to be prescribed regularly for MAV. I wouldn’t imagine Zoloft would be. I don’t take it myself so don’t know whether you can combine it with Zoloft but no doubt some here will. Otherwise check with your medic to be safe. Good luck with your MAV journey. Hope the Nori - as we tend to affectionateky call it - helps.
Sorry to hear you got MAV. Cooking is definitely one of the hardest things to do in my opinion. Lots of bending down, turning, many visual stimuli. I can only offer my personal experience with SSRIs - I used Paxil 20 years ago for depression but when I tried to use Paxil for MAV I had awful side effects which I pushed through for months and had to slowly go off it which was harder than MAV itself. If I had to do it again I would probably use Ami or Nort and perhaps Effexor. But others have done quite well with SSRIs, just beware that the drugs that used to help you may not help you in the same way with MAV. I was able to avoid antidepressants (after Paxil) by managing stress, taking time off of work, and using Verapamil (blood pressure med) instead.
Not sure which magnesium supplement you are taking, but magnesium citrate may be a good form to relieve the constipation as it tends to loosen stools quite well.
In addition to avoiding red wine and cheese, a strict migraine diet is a good thing to try for a few weeks at least. There are many resources available here for the migraine diet. Some people notice very large improvements on a migraine diet, others notice almost nothing.
As @turnitaround points out, MAV is not well understood. It sounds very plausible that many MAV patients actually have ear trouble / dizziness that starts causing migraines, while others seem to have predominately migraines / headaches that eventually cause dizziness (like me ). Whatever the cause, symptoms are very similar for us all, so take care and we are here to help each other!
Getting a MAV diagnosis does not explain your condition, it just categorises it. The underlying aetiology for most sufferers is simply not yet understood.
I am very sceptical about PPPD. I think this has just emerged from clinical study as an alternative explanation to those experiencing MAV symptoms based on co-morbility of anxiety and vestibular upset. I get a little cross when people start to suggest ‘anxiety’ is at the root of vestibular symptoms. Vestibular symptoms cause anxiety!
It’s even more suspect when they start giving a subset of the same MAV meds to people labelled with PPPD. Ugh. I give up.
The main problem with a lot of this science is it’s coming out of the clinic, and the rest is hypothesis.
So little seems to be coming from the scientist’s ‘bench’.
I have had about three migraines my whole life. The kind where you have to go to sleep in a dark room and your whole head hurts like hell. Not sure if that counts as having a history of migraines? Ah ok, do you know why an antidepressant is the recommended medication for MAV? Does it do something in the brain that helps?
Surely if it was an inner ear issue then antidepressants would have no effect other than perhaps make you a little less stressed about it all?
Inner ear trouble causes significant neurological ‘fallout’. That’s why Menieres patients, those with PLF, Secondary Hydrops and some with BPPV get migraines. Dizziness is also a neurological symptom and is often associated with inner ear trouble. And it’s why we have oto-neurologists!
Anti-depressants are apparently a good way to help prevent migraines and reduce dizziness. My point is the action in PPPD is likely just the same as in MAV - there is probably no distinction. They probably help simply de-escalate the brain from getting into a migraine-like state.
In summary, probably worth trying an anti-depressant in any case if you are suffering dizziness and/or migraines, just to see if it helps, regardless of your diagnosis :).
Noritriptyline is a good conservative first try as it’s relatively easy to titrate off of. SSRI’s are much more tricky!
Well, you probably have a narrow definition of migraine like I did. I never had a migraine by the classical definition (squiggly lines -> light/sound sensitivity -> ice pick in head -> hangover). But actually, people can have migraines without headaches, or even mild headaches. This may be good reading material for you:
As for the antidepressants, they act on a lot of different things including metabolism, vestibular function, and unfortunately sexual function as well. To say that they only affect your psychological state would be unfair, I mean look at all the side affects they produce. Medical science does not really know why they work for anxiety or depression, let alone for vestibular problems. The point is they have helped lots of people recover from various ailments and its largely trial and error for each person.
Yes, that’ll do. You ‘qualify’. I had a few ‘sick’ headaches many years back as a child in the days Noah was a boy as they say and I did, so you should.
Nobody really has much idea of how preventatives work for migraine. Virtually all drigs used were invented for other reasons, they are antidepressants, antipsychotics/convulsants, or like betablockers or calcium channel blockers made to treat high blood pressure, angina and heart disease, nobody’s really gotten around to inventing migraine specifics as yet. (It’s just about beginning now) . The fact they worked for migraines was discovered by accident. As you’d imagine the heart patient said to the medic ‘oh, and it’s stopped my migraines too’, one supposes, generally doses of any of the above are lower for treating MAV than they would be for treating their intended conditions so they recommend we dont think of them as ‘antidepressants’ etc in our case of MAV but obviously the names are still used to differentiate in conversation etc, one would imagine logically they are affecting chemicals in the brain somehow or another.
Use of anti-depressants is a result of clinical observation, not bottom-up science, if I understand things correctly.
I’ve been on nortriptyline for four months and have had some improvement, though it’s been slow and very gradual, with plenty of ups and downs. If you can stick it out, you may have success over time and/or with a higher dose.
The first two months for me were at 10mg, which is a tiny dose. Like you, I didn’t think it was doing anything. My symptoms (horrible drunk/unsteady feeling, swimmy foggy head, feeling of falling while walking, plus headaches) were actually worse during that period and there were quite a few days where I could not leave the house. Side effects were fatigue and dry mouth (which largely went away) and a bit of blurry vision (which hasn’t, but isn’t really bothersome).
Going up to 25 and then 50mg has brought gradual progress. It’s easier to be outside and walking around and exercising now, and my tolerance for triggering situations (fluorescent lights, restaurant noise, dentist) has improved some. The symptoms are always there, but on good days they are dampened to a point where I don’t feel too limited by them, where it feels close to livable, maybe 75%. My symptoms aren’t being controlled by this dosage (yet), but there has definitely been a measurable effect, so I’m trying to view it as a start. I may need a higher dose. This week my GP and pharmacist also added Gravol to the mix (dimenhydrinate), to address dizziness. Not sure how that is going yet.
I’ve been on this high dose of 50mg for six weeks and the most progress has been in the last week or so. It seems this is a slow-acting drug, and not one that produces quick results for migraine (except for the lucky few). I’ve been told it doesn’t even get into your system for 4-6 weeks.
Good luck with your symptoms. People’s experience with nortriptyline seems to vary, but many have success over time and/or when they reach the right dose for them.
Thanks everyone for your replies. From yesterday I have noticed a slight improvement. It seems to be ok now when I am sitting at my desk and even walking but when I am say walking and looking around and constantly moving my head I don’t feel too great. But it’s an improvement! I am going back to see my doctor today, should I try and get an increased dose as 10mg seems rather low and most people here find relief on around 30mg plus? Or should I stick out this 10mg for another month and see if I get to 100%?
Also I am feeling quite stressed with this and feel something to get my anxiety under control would be good. Without wanting to get serotonin syndrome what is a good anti anxiety to go on with Nori? Or will an increased dose of Nori start working as an anti depressant as well as helping the MAV? I know I can ask my doctor all these things later today but just wanted your opinions first
It’s very early days. Once drugs start to work they tend to go on giving better and better for some time and as your condition improves your mood will too and that will help as well perhaps even more so I wouldn’t be in a rush to start combining drugs. Give it at least the 8 weeks to see how much good what you are tsking does. Doctor’s in charge here, expect he’ll increase it gradually to 30 mg or beyond with time. Lowand slow is the way forward with MAV. Don’t be tempted to think rushing it will restore you to full health by the end of the month because that’s unlikely.
Might help to read up a bit online about balance generally and how it works while you wait. It’s interesting and not at all scary. It pays to be able to think like your balance mechanism then you don’t panic at every seemingly odd occurrence. When you are sitting down your balance is under less strain, bits of you are in constant touch with solid ground. When you walk, that’s very different. Yr balance system requires input from, yr ears, eyes and yr body’s proprioceptive skills (yr joints, skin, nerves in feet etc, etc) which yr brain interprets to keep you upright and really balanced. The more of these parts affected by illness, the more difficult balance becomes. If one part is unreliable the brain uses more input from another. It usually favours your eyes for extra info it needs and that’s why looking around whilst walking is more difficult/uncomfortable. To provide the best info to the brain the eyes really need to be viewing a point and walking towards it. Having read the above, don’t stop moving your head and try to keep it rigid. That’s the worst thing to do. Apart from anything it’ll give you a stiff neck. Walk normally but just be aware of why you are feeling the way you do and maybe just be a bit kinder to your brain just temporarily until the drugs really take hold and that feeling should cease and you can forget all about it. Helen
I have found that the antidepressant effect of nortriptyline kicked in at a higher dose—my doctor said that 10mg is too low for that. Wishing you best of luck with it.
Doctor said as I am feeling a bit better and that is a good thing I can either stick to 10mg and he will see me in three weeks or I go up to 20mg if I want and he will see me in 3 weeks. I am tempted to go up to 20mg but worried that might make me feel worse for a bit and I’m going away soon so don’t want to feel worse?!
Go for it. You will be stuck on your final dose for months if not years so best work out what the optimum is.
The tricyclics are pretty easy to go up and down on and half life is only 24 hours so it’s fairly straightforward to work out the rough best dose.
I went up to 30mg on Ami and backed down to 20mg where I stayed for a loooooong time.
If you have good results at 10mg, I personally would try 20mg. I know its hard to make the decision to go up, I’ve made it several times on Verapamil. And it might get a bit worse for a while (which i’ve noticed several times on Verapamil). But I think if 10mg is helpful its unlikely that 20mg would be a disaster.
As I understand it, you need some monster doses of tricyclics to affect depression. I would not worry about serotonin syndrome with such a low dose of tricyclic (Nort) - my doctors keep reassuring me that serotonin syndrome is very rare. I think many on here have had success with Effexor (SNRI). I personally have had awful results with Paxil (SSRI) for MAV and have tried to steer clear of antidepressants ever since. Probably Paxil was just not the right one for me, but I don’t have the courage to try another. The only things that help my anxiety/depression over time is reducing life stressors, CBT, and working on daily meditation and exercise.
Most antidepressants have a similar half life, with the exception of Prozac. So that isn’t the reason its easier to up/down the dose. In fact, the theory is the shorter the half life the harder it is to handle changes in the dose. Prozac is sometimes used as a bridge drug to get off the last bit of antidepressants because its half life is on the order of days. I don’t think anyone knows why tricyclics are generally easier to change the dose.