Hello from a newbie - VM/PPPD

Well let’s be grateful her best buddy wasn’t currently focusing on amputations without anaesthesia. Honestly that sort of referral is laughable. It’s a joke.

1 Like

This is why I opted against it, because this year I’ve had bad and OK phases - on average I’d say I’m in the 80-90% bracket. I can do everything a normal person would but I’m still slightly limited in certain areas of life (some of that being psychological rather than physical). Obviously medication brings with it nasty side effects so on balance, I decided myself that medication wouldn’t be of benefit.

Regarding your comment - do you feel your healing would have been quicker without medication? From what I understand, the medication is basically meant to give your brain a break and let it recover peacefully without the outside noise.

1 Like

Yes, that’s absolutely what I believe it does. It really depends on how severe you’ve got it. I had it so bad I was laid out with basilar migraines for 14 hours at a stretch unable to even blink at one point, every 3 days. This immediately resolved with Amitriptyline and I never had such horrific migraines again.

However, once physiologically things have started to resolve, the brain catches up and you don’t need them anymore imho.

Sure, things at this point are still uncomfortable, but at least your brain is giving everything it’s got (so long as it doesn’t go over the top!)

Of course, I’m male and there may be other physiological stuff going on in females which complicates matters, and its obviously very individual too … case by case.

4 Likes

Its reflective of the wider systemic failings of the NHS and the country as a whole these days. NHS policy has turned into one of pass the buck. They send people home with painkillers or antidepressants for almost anything these days, and wish them good luck. Actually its systemic of western medication - they try to fix the symptoms, not the root cause.

In April I was due to fly out abroad to have a team of private doctors (from all manner of different disciplines) to review me and conduct a wide range of testing, to get a root cause analysis of what’s going on - but I couldnt due to Covid. Even seeing private doctors in the UK is incredibly frustrating for people with vestibular disorders. If you dont fight back, you can very quickly get lost in the system and end up with a poor quality of life. The NHS for example is giving appointments once or twice a year to people - for people suffering daily vestibular systems, that feels like a lifetime. It’s a disgrace.

1 Like

Interesting. How did you develop the view this view? Any articles/links/sources for it? Or just personal opinion.

The point I would raise is, how long should one wait with this condition? I’m 18 months into the journey and not tried antidepressants yet. I’ve reached the point where I cant cope with daily dizziness anymore, but I dont suffer from psychological issues. It’s obviously just naturally frustrating…

1 Like

Could not agree more.

I used to get angry, but as my condition has improved, this has tempered a little.

The problems are numerous. It’s so easy for a neuro-oto to see you for 30 mins, charge you £150+ and prescribe some old antidepressant. Incredibly poor value for money.

MAVers/PPPDers are an incredible productivity drain for society that you’d think it would get more focus, but then we are rare I guess?

see my rants on #research-theories-controversies, some of which are backed up by ‘science’, the rest is a personally developed model to fill in the gaps/gaping chasms. My personal opinion is summed up A note about my views. I’m convinced there is a physiological cause of the symptoms, and at least a common subset of anatomy that is involved.

2 Likes

Country of destination? Where’s better in your opinion? Actually I can imagine a one word answer ‘Anywhere’ because the NHS in fact English medicine private even. Neither does Vestibular. They may as well just cross it off the medical dictionary index altogether. When it comes to Vestibular stuff I don’t have a good word to say for them. Nothing surprises me. You should read my own story. You could print it off and take it to read on your next long haul. It’s long enough thanks to the NHS.

It’s piece of string country. Yes but you shouldn’t think if them as antidepressants. You would only be taking about a tenth of the AD starting dose so it shouldn’t affect your mood. Tricyclic antidepressants are used off lable more these days than on. Nobody starts them for depression. They have been surpassed long since. They are regularly used for long term chronic pain, another off lable use.

1 Like

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!

1 Like

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.

1 Like

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.

1 Like

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:

1 Like