Medication for PPPD

A question for people on here diagnosed with PPPD: do you take medication and, if so, how is it?

As some of you will have read elsewhere, my problem is lightheadedness, head pressure and visually induced dizziness (no spinning vertigo). I’ve been diagnosed with PPPD by one consultant, with vestibular migraine by another. The VM consultant has also put me on Nortriptyline. I’m two weeks into it, 10mg. Going to 25mg in four weeks, then up again every six weeks.

So far, I feel worse than I did two weeks ago. I’d had a pretty steady four months prior to this, with drowsiness as my main symptom, and the dizziness only flickering a few times a day… now the big daily midday wave of lightheadedness has returned, along with the flickers of imbalance and derealization. I’m assuming it’s the medication, as nothing else has changed.

I’ve read some stories in the archive on here, and I understand that things get worse before they get better. But I’m also anxious because the PPPD consultant explicitly warned me not to take medication, as that would hinder the healing process. So now, because I was already doing OK, and because I’m now feeling worse, I’m worrying that that doctor was right, and that I should come off the Nortriptyline now before it does any damage.

Obviously no one can advise me medically on here. I’m just curious if anyone has been / is in a similar situation.

Thanks!

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If by healing you mean compensation, I would agree with you, and I wrote about it here.

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Everyone with chronic VM has PPPD. Steer away from vestibular suppressants like meclizine and benzo. Nortriptyline should be fine but if it is not working find a different med.

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I’m confused if i have PPPD or just VM that’s chronic for 3 months daily? I am on 2 meds but still having chronic symptoms. I know VM can be chronic, but I feel since I’m already on meds, it’s something else…

I’m on an SSRI so I’m thinking that would help the PPPD?

To be able to move forward in a positive way everybody needs a meaningful diagnosis, one they can believe in and Just the One. You could easily drive yourself crazy by either constantly wondering which condition you might have and by trying to abide by two totally contrary treatment regimes. It’s time to make up your mind. Trying to run with one foot in each camp will only make walking a bumpy road even more difficult.

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  • SSRI’s can be prescribed for MAV and VM
  • These are diagnoses based on symptoms and snapshot telemetry, not based on actual aetiology. They can also be classed as ‘wastebasket’ once other diagnoses are ruled out (e.g. acoustic neuroma via MRI).

I gave up worrying about diagnosis after 5 alternative opinions and just focussed on getting better.

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I thought ssri’s are the treatment for pppd

They are. Just not exclusively.

ie you can’t derive the diagnosis from the medication prescribed (in this case)

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Interesting findings. Sertraline for PPPD seems to work far better when combined with https://www.hindawi.com/journals/bmri/2018/8518631/

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I too have been diagnosed firstly with VM and recently a neuro is more convinced PPPD fits the bill as far as Iam concerned I have both as I’ve always suffered from classic migraines etc etc

I am now tapering off Amitriptyline as I have found it makes me worse I was on 50Mg and it has not addressed the dizziness/lightheadedness although it has helped minimally with head pain.

I have as others have found a great reduction in dizziness with Cetirizine just hoping it continues…