MAV, MdDS or PPPD?

New here, let me introduce myself šŸ¤
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Hi all! Iā€™m from the Netherlands.
My dizziness ā€™ adventure" started in 2013.
One day I noticed the earth was moving. Like being on a boat.
I went to the neuro who did an CT Scan and told me I was hypervigilant to sensations in my body.
I also developed an anxiety disorder (hypochondriac) back then.
Did two full balance-tests in two different hospitals in 2015 a MRI in 2016 and another CT SCAN in 2019.

Fast forward to 2020.
I still have the dizziness, some days (hours) are better than others.
There used to be days were the dizziness is a 2-3 but the last month it mostly is a 8 or a 9.
It seems like my bassline balance has gone up.

I never got an official diagnose but my symptoms (sensations) do seem a lot like you guys have.
Dizziness, bobbing, swaying (also when standing), pulling sensation, weak legs, visual distortions (moving objects etc) and trouble walking (especially inside the house). Overall a drunk feeling.
Also my head feels heavy and I get these weird head pressure like pain. Which is not a real pain like migraine. And this seems to move around my head but always at the back of my head and sometimes on the top. Generally it feels like my head is in a clamp or I have been hit by a truck.
There are days (weeks) I have to support my head when sitting or when working at the computer.
My neck and the back of my head feel very tense. When I stand still I can feel the tension building up in my neck especially when I want to see if I do sway a lot.
I never had any migraine aside from the normal headache which lasts a couple of hours. And no nausea.

Shops and lighting used to be a problem but I can more or less do all the regular stuff.
Driving is okay. Itā€™s my only relief.

Symptoms and sensations vary from day to day.
Today I feel my head wanting to bop back and forth and my neck is superstiff.
And I feel like walking on a trampoline.
This can be gone tommorow and than something else shows up.
But I feel off most of the time like 23,5/7.

In 2016/2017 I had other health issues and then the dizziness didnā€™t take the center stage.
In a post on this site I read that people say that when switching from one symptom like tinnitus (which I have too) or floaters (which I have too) the focus somewhat switches from the dizziness.
But at the moment it is full-on dizziness. From the time I wake up to when I go to sleep.

I do work a couple of hours a day, I like the distraction. But I feel a bit reluctant to take on extra activities as this wears me down. I never know how Iā€™m feeling later that day.
I have noticed nothing seems to trigger it or make it less. It just comes (and stays) or goes when it wants too. I meditate, walk my dog, sleep for 7 hours a night, take magnesium, cut caffeine, eat healthy food (fruits, vegetables) but nothing seems to help.

My questions for you MAVā€™ers out there.
Do most of you had a migraine attack prior to your dizziness? I never had any.
Does your dizziness come and go? Or is it there 24/7?
Do you have neck/back of the head issues as well?
Does your bassline go up and down over the course of weeks, months, years?

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24/7 imbalance and (without drugs) dizziness over several years. Stiff neck, sure. Migraine attacks varied in frequency but no correlation for me. I also had vestibular attacks (eg spinning, magneto head) which could bring on a massive increase in imbalance and symptoms which would last up to 2 weeks.

ALL my attacks and migraines have since stopped (Hallelujah!) but it took years to settle down.

Welcome to the board! And sorry you are suffering.

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Hi Dominic and welcome.

So heā€™s inferring you have PPPD I suppose. And put you on Nortriptyline for that. Can I ask how much and for how long because it doesnā€™t seem to be doing very much for you at the moment. Might be worth seeing another neuro maybe.

Iā€™m not a doctor but you certainly sound very much like a MAVer to me. So many of the phrases you use we hear on here regularly, like being on a boat, rear head pressure, having to support your head, Weird head pressure, head in a clamp, neck superstiff. All phrases Iā€™ve used myself many many times.

In answer to your specific questions.

No I never had a classic migraine before I developed my 24/7 dizziness. In fact Iā€™ve had MAV for 16 years now and I had my first ever classic migraine last October. Of course, If one counts my vertigo attacks as vestibular migraine attacks for over a decade they were concurrent

I had sudden 72 hour long vertigo attacks for over ten years that would make me too dizzy to stand then go away sometimes for months til the next one then in 2014 after one attack the dizziness and other symptoms, like sensitivity to lights etc, didnā€™t go away. It all become 24/7 and it stayed that was for more than three years.

Two different neurologists have told me in writing the Back of the head issues are ā€˜migraineousā€™. They are the migraine. The neck issues are also closely related. I had both together all the time for the whole period of my constant 24/7 dizziness. Most probably the neck stiffness is made worse by the brain trying to keep the head still in an attempt to aid balance.

Baseline varies in correct correlation with symptom severity. Over weeks, months, years or even hour by hour. Hopefully once some control is obtained by medication, supplements, diet, etc over time the baseline will comes up as tolerance thresholds are raised however this doesnā€™t appear in any way to be linear. Quite the contrary, very up and down.

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Thanks for the reply.
So you do get attacks? I donā€™t. Just lingering dizziness and the last couple of weeks a very stiff neck. The head pressure is there most of the time.

I havenā€™t seen a neuro since 2016. Currently treated by my ENT.
The Nortryptilene I got in 2016 because I just couldnā€™t handle life in general anymore.
I remember telling my GP I got sick of holding on to the walls while taking a shower.
I was on 20mg but it didnā€™t seem to be doing much for the dizziness or unsteadyness.
Tapering down for a long time and currently on 7,5mg.
My GP advised me to up the dose again just to relax my thoughts and worrying brain.
So when I upped to 10mg I got panic attacks and tunnelvision.
So I am micro-dosing but sometimes feel I should switch to Venlafaxine.
You see, Iā€™m not sure what to do. The meds make me feel worse.

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Yep medication is very individual. Work through them steadily in a controlled fashion to find what works for you.

However do not be blindsided by relapses. These can occur in any case and have nothing to do with the medication.

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Yes, I have had distinct self contained vertigo attacks but not everybody does. Sometimes a person just wakes up one morning with Constant dizziness which they find impossible to explain. Itā€™s a condition that varies much individual to individual. Iā€™d say as you have regular head pressure and a constant stiff neck you are in what is called status migraineous. An ongoing migraineous state where all the symptoms are high and cannot settle. Youā€™ll probably need medication to reduce this back to manageable levels. I wouldnā€™t imagine the tiny bit of Nortriptyline would be doing much to help. Go back to your medical provider and ask about alternatives. Propranolol is useful for MAV and anxiety together as no doubt are other drugs like Venlafaxine. Whatever medication is suggested itā€™s all a question of trial and error. Nobody can tell you what will help you not in advance. Itā€™s guesswork selecting one from a pack of drugs that have helped others in the past. Any particular drug has a 50/50 chance of being The One For You from all Iā€™ve read. So you may need to trial several and you will find they often make you worse before better unfortunately. Ultimately one will help you for sure.

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Yeah that is a tiny dose. Canā€™t imagine it is doing very much for you. Be careful the increase in symptoms is not made worse by med and health anxiety which are huge problems.

My psychotherapist used to laugh at my 20mg dose of Ami calling it ā€œpositively homeopathicā€.

Depression sufferers used to get 200mg+ of that drug.

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Thanks!
The stiff neck is not something that has been there alongside the dizziness for the past 6 years.
It sort of comes and goes every now and then. The last two weeks I have this heavy head feeling.
And I need to support my head.
I understand it is trial and error. I guess I just have to work with it.

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Stiff neck can be caused by brain trying to improve gaze stability if vestibular system is compromised.

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And the fact the neck isnā€™t moving naturally because of the brainā€™s efforts or simply because we MAVers tend to restrict head movement as itā€™s a main trigger will just make a stiff neck even stiffer.

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Hi Dominic, sorry that youā€™re a fellow sufferer of dizziness, but welcome to the forum. Like you I am on nortriptyline, however I am on 90 mg and built up to this dosage over many months. It was only from 70 mg I started to feel some effect, and itā€™s now a year in and itā€™s very slowly making some change; my neurologist also has me add in a second migraine preventative, Iā€™m currently building up on Pizotifen. All this to say that you are on a VERY low dose and can definitely ask to build up to much more on migraine preventatives and if one med doesnā€™t work eventually add in a second.
Re: side effects / feeling worse when moving up this is very common but sometimes itā€™s worth trying to sit it out for a few weeks as the body adjusts and starts to get the benefit from the medication.

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Trampoline! Thatā€™s exactly what I used to feel at my worst. And yes 24/7. And I went thru ALL the supplements and all the meds. The most helpful to me have been Amitriptyline (like Nortriptyline) and Venlafaxine. Klonopin for extreme incidents. Iā€™m weaning off the Venlafaxine very slowly. So far so good. Iā€™m at 90% now.

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