Hello from a newbie - VM/PPPD

Yes, the first time I split an amitriptyline pill and failed to swallow it quickly enough, my tongue went numb for several hours! Excellent pain killer I expect!

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For PPPD you’d need a Clinical Pyschologist and VRT therapist working in tandem and to have all migraine under tight control and meet all the criteria. Privately you might be lucky. Could try a Spire hospital if they aren’t still subbed to NHS which they were last time I heard.

Good stuff. Think we have to accept that we may not find an answer in our lifetime. I can understand how VRT can help, and medication can “numb” your brain so you dont get dizzy anymore, but things like changing your diet and CBT are totally rubbish in my opinion. Eating gherkins and chocolate can’t make someone lose balance!

For example, I did the HYH diet and noticed little or no difference. I stopped the diet and things naturally got better. Secondly, every time I have an appointment the doctors suggest CBT - ok, I can kinda understand how it may help with the frustration of the condition, but it’s not going to help us heal physiologically. Paying £100 per session for god knows how long isn’t a feasible solution for most people, nor a good clinical outcome. Neuroplasticity is an interesting topic, but I’d argue that you’d develop new neurons and pathways as you get on with life. Infact 2/3 of the neuros I saw, actually told me not to bother with VRT as going out and about, doing exercise etc. is probably more helpful (partially because non-compliance with VRT creeps in over time).

Yeah, CBT meh! I did find non-pharmacological psychotherapy helpful if only just to be able to hear someone remind me ‘you’ll be ok chum’, which was surprisingly important. However, the muscle relaxation exercises I was given, that even applied to my jaw, ended up giving me severe TMJ that took 4 years to resolve. Gah!

Istanbul. You can have every test under the sun at fantastic private hospitals for £1k. Maybe £2k if you really push the boat. Anything is worth a try at this point.

I don’t buy into CBT for reasons explained above, but I’m open-minded and happy to be persuaded. I’m definitely going to resume VRT, and I may consider CBT in a few months.

If you have private insurance, CBT is worth trying. I done it once some years ago for other issues. Went to the Nightingale Hospital in Marylebone (paid for by my company). Their rates were like £400ph, so I was seeing the best of the best.

In all honesty, I didn’t find it very useful. They give you hand-outs and things like “if you are in X situation, think of Y and relax your mind”. In reality, and in a practical sense every time your in a super negative situation you cant sit there in a split second and mentally recite positive paraphrases that your therapist teaches you.

Positivity and motivation comes from within in my opinion. Having a therapist tell me to keep my chin up once a week, isn’t going to add material value to my life.

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I think it depends on how bad you get. I was thinking suicidal thoughts at one point. I totally get why some individuals need pharmacological help.

Good point. This is a genuine concern. I’ve felt very on edge at times. Something weird happens to me on occasion - when I have a super intense dizziness (like 10 out of 10), I feel like my brain is physically shaking and that I’m going to “fall off” and lose control and die. Once the dizziness stops dies down, it goes away in a split second. I guess its some type of weird vertigo sensation.

I guess this is where the meds come into play…

Amitriptyline did nothing for my vestibular attacks, just the dizziness and migraines.

Google Dr Matthew Whalley and read his paper on PPPD. Don’t think theres any mention of CBT. In fact reading that paper may give you greater insight into what your condition really is or isn’t.

No I did buy CBT either. A load of junk.

To what end? Tests for what exactly? Inner ear maybe. If they come up with anything whats the treatment? Is there one? People get told they have an x% loss in one ear. So what happens then? Worse case scenario you worry about it but there’s nothing can be done to cure it. Medics aren’t all that keen on entering the brain with a scalpel.

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Whats your current situation, out of interest?

I’ll give it a read, thanks. I recently read Dr Knoblauch’s book on PPPD, which was a load of rubbish. Basically a bunch of general info copy and pasted off Google.

I don’t know - just good old fashioned hope. Eastern medicine often looks for the root cause, rather than simply treat the symptoms. Doctors out there are taught in a very different way and are known to be very knowledgeable.

By way of testing in the UK, all i’ve had its an MRI, Calorics and VNG. I would raise the question - is this really enough? Maybe for all we know, there is a different cause to my dizziness. Theoretically speaking, you can never have a 100% full-proof diagnosis without undergoing a full breadth of full body testing. Dizziness/balance issues can be caused by a wide variety of medical problems. Sure, VM/PPPD is most likely my problem but who knows maybe it could be something else. You need to find out for sure, in order to move forward appropriately.

Funny you should ask, My journey to Hell ... and (almost) back. - #162 by turnitaround

about 3 Topics down when going to press :wink:

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Awesome, great news. Looks like I have 3.5 years to go!

Btw, can you or @Onandon03 point me in the right direction with respect to finding a VRT specialist in or around London? I’ve been looking on https://www.acpivr.com/ and identified a few. Previously saw Nicola Harris, but didn’t find it overly helpful so I want to change my physio.

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One of my doctors thinks I have Secondary Hydrops (which has an identical symptom spectrum to MAV, ahem, go figure ;)).

He told me in 2016 he couldn’t tell me if I would recover in 6 months or in 6 years, but that it would eventually ‘burn out’.

So far, he’s right.

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I’m in London and saw the lady in this video. She is very nice indeed:

Which doctor was it? If he made the right call regarding the timeline, the man is a hero!

Hmm. Spoke to someone recently who said they weren’t too happy with that lady. For the same reason, I wasnt happy with my physio - too much of a blanket approach and not enough tailoring to my specific problems. I think some doctors and physios have done the job so long, they have tunnel vision and just offer the same solutions to every patient.

I’ll PM you my doctors name.

The Physio did her best and was very professional. I did not find VRT that helpful personally. Perhaps she could have gone a little easier but it’s meant to challenge you.

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Over the last two months I’ve seen two neuro-otologists, located only a few miles from each other. Based on the exact same set of symptoms, one of them diagnosed me as having PPPD and dismissed migraine; the other diagnosed me as having vestibular migraine, and told me I was a typical case. These are clearly, in my opinion, different words for the same thing. Or at least there’s a spectrum of sensations, and these labels are pointing in a very general way to different places on the spectrum, but it’s all linked.

With regard to your post, you say you’re experiencing PPPD symptoms such as “numbness/tingling,” “light sensitivity” and “headaches.” I must have read most of the papers on PPPD (and the one terrible book written about it!), and I have nowhere seen any of these things mentioned. Aren’t they all fairly common migraine symptoms (and in the case of light sensitivity, diganostic symptoms)?

Anyway, whatever one calls this condition, it’s most annoying!!


Interesting. I found VRT helpful when I had the initial onset of VN - my balance drastically improved. But since the VM/PPPD diagnosis, I did some VRT at home initially and didnt find it helpful.

As it’s non-invasive, I’m happy to give VRT another try and maybe do it 2-3 times a week. I’m sure it helps physically, even if it is just a tiny bit.

Over the last few months I started jogging and playing football again - hasn’t made any difference to my symptoms at all to be honest. But it does help psychologically.

Very valid point Dave. Lately, I’ve been constantly dizzy and I dont understand how anyone could have a constant “migraine” for weeks on end. Whats more, when I go outside my dizziness sometimes goes away completely. Then step back into the house, and my dizziness comes back full force immediately. It’s very odd indeed, and makes no sense. I would describe it as spatial dizziness (not sure if this is an actual term or if its been researched before). I guess my solution is actually very simple - stay outside forever, and become a farmer or something lol.