5 months of non-spinning dizziness and 3-day flare-ups

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Hi everyone, this is my first post so please forgive the length.

I live in England. Until April I was a healthy 40-year-old. I went to bed one night and got pins & needles in my limbs, felt dizzy (non-spinning) and had Tinnitus. My speech slowed down and I stumbled on words - that has cleared up now and so has the pins & needles.

I was unsteady on my feet too but that improved within weeks thanks to Vestibular Rehabilitation Therapy.

5 months laterā€¦ I still have the non-spinning dizziness and tinnitus. It feels like a constant unpleasant lightheadedness. Thatā€™s the daily feeling, and then a few times a month it morphs into an episode that usually lasts 3 days where the non-spinning dizziness feels more intense and I assume itā€™s vestibular migraine.

Iā€™ve never been in any pain, luckily.

Iā€™ve seen 3 neurologists, an ENT specialist and had loads of vestibular rehabilitation. The neurologists disagree with each other on whether I have chronic VM, PPPD, BPPV or even chronic Labyrinthitis. The most recent Neurologist said it canā€™t be VM because the room isnā€™t spinning.

The vestibular therapist says it was definitely BPPV when I was unstable for those early weeks, but his recent tests confirmed thereā€™s no sign of BPPV now.

The ENT suggested an MRI of my inner ear, which Iā€™ll look into. Iā€™ve had MRI of head, neck and spine, all came back clear, as did blood tests.

Iā€™ve tried anti-migraine medication like Cyclazine and Semitel, it didnā€™t work. Iā€™ve tried Propranolol for a few months, didnā€™t do much. I can get Rimegepant (Vydura) privately but itā€™s Ā£1,100 for 3 months. NHS wonā€™t prescribe until youā€™ve taken it for 3 months.

Iā€™ve been on Lamotrigine for 4 years as a mood stabiliser - maybe thatā€™s why the other meds donā€™t work. Who knows.

Iā€™m at a complete loss and going round in circles. Is anyone in the same boat and if so please, please can you tell me what I should do?

Iā€™ve spent so much money on private specialists and yet Iā€™m still constantly online looking for answers myself.

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Welcome to the forum, @Confused! :tada: Everyone here is super friendly and eager to help, so youā€™re in good company! If you havenā€™t yet, make sure to check out the Welcome Topic here: Welcome to mvertigo and the posting guidelines here: Please read this before posting.

Youā€™re definitely not alone in your journey with dizziness and it sounds like youā€™ve been through quite a lot. There are many supportive folks here who can relate to your experiences, and together, you might find some helpful insights or strategies.

Feel free to share more about your situation or ask any questionsā€”this is a safe space!

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Welcome to the forum, your story looks very familiar to me.

I hope the site is useful to you.

The first few months with this crp is really tough, then it gets a little easier but no less annoying. It took me 3.5 years to really start to feel better. Explore the medication!!

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Thank you for the kind words and I hope youā€™re on the mend day by day.

I agree with you re: medication, the only problem is I donā€™t know if I should seek medication for PPPD, VM, BPPV or something unknown - itā€™s such a minefield.

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I would focus less on ā€œwhat it isā€ and more on ā€œwhat gets you betterā€

Antidepressants are used for both VM & PPPD, so thatā€™s good start.

Best options there - Amitriptyline or Venlafaxine - but there are plenty of other options if those donā€™t work out.

Every one of these diagnoses is an established ā€œhypothesisā€ in any case - even BPPV (ask a medic if ā€œloose crystalsā€ have ever been observed in vivo!)

I was very sceptical about my diagnosis and am still not 100% sure that it describes everything that is going on - but what was clear is that my enormous migraines that I had at the very beginning of this illness were stopped completely by Amitriptyline at only 10mg nocte. The dizziness and nausea was almost completely eliminated by 20mg. BUT many uncomfortable and anxiety inducing symptoms remained - none of these medications are a silver bullet.

That said you cannot operate at all if you start to have big migraines.

As almost always - consult your health practitioner.

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@turnitaround Thanks for the insight - itā€™s genuinely helpful.

And I agree. If the last 5 months has taught me anything itā€™s that itā€™s unlikely Iā€™ll ever know exactly what ā€˜itā€™ is. If 3 neurologists, an ENT and VRT canā€™t agree, Iā€™m hardly likely to crack the code!

Iā€™ve heard a lot of good things about Amitriptyline - the only issue is that Iā€™ve read it doesnā€™t interact well with Lamotrigine, which I take at 225mg as a mood stabiliser. I need to run it by the GP though - I just hate going to the GP because itā€™s a running battle.

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GPs are rarely able to prescribe some of the ā€œstrongerā€ antidepressants (though Iā€™m sure Amitriptyline is within their capability).

However they may or may not be reluctant to prescribe against your diagnosis as they may feel itā€™s not within their realm of expertise.

Consider a private specialist - you can usually see them very quickly and they are the best you are going to be able to see.

The investment is worth it because it will increase your productivity at work and you will earn the money back and more.

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@turnitaround Yep, good call. To be honest I wish Iā€™d mentioned Amitriptyline to the private neurologist a few weeks ago.

He was sceptical about me having migraines at all because he said for it to be VM the room should be spinning, which it isnā€™t for me.

Despite his scepticism he prescribed Rimegepant (Vydura) because he knew I wanted to try something - but the cost of the private prescription is Ā£1,100 because you have to take it every other day for 3 months before the NHS will even consider prescribing it.

I told him I couldnā€™t afford it so he changed it to an ā€˜as and when neededā€™ prescription to use as a rescue med instead of a preventative. Even that cost Ā£57 for two tablets and guess what - it didnā€™t work the first time and did work the second time - so Iā€™m non the wiser!

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Room didnā€™t spin for me either except on very rare occasions and usually as part of positional vertigo.

Amitriptyline and Venlafaxine are goto.

Amitriptyline is WHO generic standard and costs pennies per tablet.

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@turnitaround Good stuff. Iā€™ll look into it. Thanks again mate and all the best to you :+1:

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My pleasure ā€¦ keep us posted!

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Iā€™ve sent myself almost insane trying to work it out and 2.5 years later Iā€™m still on the fence. I think mine is either VM aka MAV or 3PD. Actually you can have both VM and 3PD together, often chronic VM, especially if its untreated can morph into 3PD, or so my vestibular physio says.

I think the diagnosis only matters really in terms of medications. VM has a lot of options whereas 3PD is usually treated with SSRI/ SNRI low dose antidepressants, vestibular rehabilitation and CBT. But the papers Iā€™ve read show that a high number of people diagnosed with 3PD also meet the criteria for migraines. So is 3PD just another manifestation of vestibular or otologic migraine, or a seperate entity? Its only been known as 3PD since 2017 so research is somewhat lacking.

BPPV is allegedly the easiest vestibular to diagnose and treat and if it hasnā€™t responded to Epley manouvre then it could be you can discount it. I was tested for BPPV early on. I was actually hoping it was that as it often responds well and is reversible. But my GP discounted it pretty soonish.

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Are you in UK? GP can prescribe 3 migraine/ VM treatments, Amytriptyline/ Nortriptyline, Propranolol which is a beta blocker used to lower blood pressue but can be used " off label" for other conditions like anxiety and migraine, or Topirmate an anti epileptic.

Once youā€™ve exhausted those you would really need a referral to a Neurologist or specialist headache clinic. They have a lot of choices available that arenā€™t allowed in primary care. Actually Lamotrigine is funnily enough one of the migraine drugs they use. Its not commonly prescribed but I think weā€™ve had some members on it.

They can also prescribe the new CGRP drugs. But you normally have to have tried 3 others previously preferably different types, so a beta blocker, antidepressant etc.

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@DizzyandConfused Hi, thanks for this reply and Iā€™m so sorry youā€™ve suffered for so long. Itā€™s really horrible and you have my sympathy.

Yes, Iā€™m in the UK. Iā€™ve seen 3 neurologists and an ENT. The most recent Neuro said itā€™s not migraine because the room isnā€™t spinning and itā€™s just lightheadedness, but the Migraine Trust think it might be VM.

My GP is clueless, and rude.

Iā€™ve been given a private prescription for Rimegepant but itā€™s so expensive and the Neuro told me I have to take it for 3 months before NHS will even consider prescribing it. So Iā€™ve only paid for 2 pills so far - one worked, one didnā€™t.

I want to try Amitriptyline but you canā€™t take it with Lamotrigine. I can wean off the lamotrigine but that will take months, because Iā€™m on a high dose and it has to be a gradual process.

Iā€™ve been on 30mg Propranolol for a few months but I donā€™t know if itā€™s made much difference.

After this weekā€™s flare-up/episode/migraine I am
SERIOUSLY fed up and baffled as to what to do next.

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I tried it and it made me just feel slow, but some members have found it helpful.

Amitriptyline showed that it helped within three days.

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Great discussion here. Thanks to all. I have been on SSRI (escitalopram) 10 mg which is no longer doing an adequate job. Dizziness every day. VM diagnosis years ago, but I am now hooked into new ENT for a fresh look at whatā€™s what (haha!) and meds. Hang in there, @Confused. Iā€™ve rarely had spinning room either (very occasionally, on getting up from lying down).

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Such an important point. I have spent FAR too much time (years) trying to understand and label.

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You are far from unique :blush:

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@turnitaround Letā€™s say for argumentā€™s sake that I am having migraines - they are definitely ā€˜silentā€™, because Iā€™m not in any pain whatsoever. Itā€™s basically 3 days where the existing lightheadedness and tinnitus intensifies, and I feel weaker. Harder to focus too.

So with that in mind, does Amitriptyline still sound like a suitable option? I only ask because when Iā€™ve read about it, it seems to be used mainly by people who have painful migraine headaches, whereas Iā€™m not in any pain.

Iā€™m going to see my NHS GP tomorrow but I have zero faith in them - they are so dismissive and rude.

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I hardly ever had pain. A wholly different kind of discomfort.

Amitriptyline is a vestibular suppressant as well as a useful drug for migraine.

You really ought to be in the care of an oto-neurologist

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