ENT referral time.

Hi

This is those in the UK specifically. I was referred at my request to ENT in July. I phoned them today to ask about waiting times. I was told my referral was being treated as routine and there was approximately an 8 month wait.

I was pretty gob smacked at this point. The receptionist told me to expedite my referral via the GP. I emailed them today and they’ve passed it onto one of the doctor’s. I’ve emphasised my many symptoms and how disabling this is. I can’t wait for 8 months. Is this typical of the NHS?

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I completely agree.

I fear the waiting lists have gotten longer in the last couple of years, but a multi-month wait was not at all unusual for the UK NHS.

I had a several alternate opinions, but was lucky enough to be able to afford private appointments for 90% of them.

Given how disruptive it is, I suggest considering a private appointment. In the end the lost months of earnings are going to add up to far more than the private visits will likely cost. This is something you really need to get on top before it impacts your life even more.

But be careful how far you go. Don’t focus on answers too much as sadly the technology is not there. You can go to 10 different doctors and get a complete mix of opinions. Focus on getting the symptoms under control most of all. At least there, there is some understanding of what to do and you can get your life back in order.

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Hi

Thats good advice. I think for me the frustration is not knowing what it is. I’m a pretty proactive person. I’ve done lots of research since this started. I’m knowledgeable on medical matters as having several chronic conditions already has made me a good advocate for myself. Often in the face of poor or indifferent healthcare.

I’m not a sit back sort of personality. If I’ve got an issue I want to know exactly what I’m dealing with. At the moment this could one or more of several things. I’m treating it like its VM and started on B2, magnesium. I’m reading the forum for tips and advice. I’m even doing some VRT at home, to see if that helps. But of course it might not be VM.

I’ve noticed so many vestibular disorders are very similar in terms of symptoms. I just dont want it to be blamed on the fact I have fibromyalgia as the sheer number of doctors who’ve blamed any symptom I present with on my Fibro is quite staggering.

I also wanted to ask is chronic or vestibular migraine classed as an FND. As some websites on FND suggest it is?

But what is VM?

The first thing to recognise is that a diagnosis is really just a class of condition and is usually defined by a set of symptoms. It is more often than not defined by what is going on at a cellular or molecular level especially where medicine hasn’t got that far yet. And in vestibular medicine …

I’m an engineer and a PhD and believe me I’m very analytical and when something like this hits you you want logical answers and answers now in order to be best equipped to fight it.

The sad fact is that the science simply doesn’t exist to explain these conditions in technical detail with certainty.

There are just theories, dogma and conjecture (including my theories). Some come and go with fashion: in the last few decades, similar sets of symptoms have been called ETD, Perilymph Fistula, a form of Menieres, Secondary Hydrops, MAV, VM and now PPD. Many of them are flawed in surprisingly obvious ways.

For example, it is never explained why VM sufferers get positional vertigo. A migraine does not switch off and on with angle, it’s clearly something involving the inner ear, the only organ that can provide such a sense, yet some of these apparently intelligent doctors seem to completely ignore this fact.

Imho we can be too accepting of their incomplete responses and we should be more demanding.

Of the many doctors I met, one of them was a professor and chair at UCLH. He admitted: “we don’t know how the inner ear works”. That was pretty sobering.

The ray of hope are the treatment protocols, developed with science, but it is very important to work out what helps you or what might be exacerbating your condition, personally, because everyone’s body, life and experience is different, though there are many common factors. People do improve and do get better, but I suggest that’s often down the patients actions and the patients body working through it.

imho any comorbidity might offer a very big clue, so don’t dismiss doctors who suggest such a thing, but perhaps on a positive note that might help provide an avenue for investigation and resolution?

A good example would be diabetes, actually known to cause dizziness, vertigo and hearing loss. And diabetes is more often than not a completely reversible condition. Reverse the diabetes and you can probably reverse the impacts on the inner ear.

Stress can cause tinnitus (and worse). Eliminate the stress …

If you are interested, you can see my theorising in #research-theories-controversies once you reach Trust Level 2 to see how I’ve gone through various stages of thought.

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Hi

Thanks for the reply, I do understand about comorbidities, I have an underactive thyroid and am a member of Thyroid UK, a charity based members forum much like this one. Which offers support and help.

Thyroid is often treated very badly. There seems to be a strong link with hypothyroid and inner ear problems. Many sufferers report tinnitus, migraines, hearing loss etc. I’ve certainly struggled since I was diagnosed two years ago. My thyroid levels have been poor and I’ve not responded to Levothyroxine very well, despite several dose increases. Maybe in my case that was the trigger.

I’ve also got some neck issues. I have hypermobile joints and my neck is very bendy which has led to some wear and tear in my lower neck. I’ve seen the physios who’ve ruled out neck related dizziness. I’m doing the strengthening exercises I was given like a pro, just in case there’s a link.

I think I’m struggling because it came on so quickly, literally fine one day, albeit with a migraine, suddenly very imbalanced halfway through the next and like it ever since. I suppose my experiences with chronic conditions have been far more gradual and insidious. I guess you can drive yourself mad trying to workout the cause.

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Yes you can, but at the same time you should never give up just make sure you keep things in perspective. Never stop fighting, for sure! Demand answers, don’t let the doctors off the hook, ever! Make sure you continue to look at all avenues to treat any underlying issues.

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Are you able to pay for a private Neuro appointment? I saw a Neurologist at the national migraine centre in the Uk over zoom. It was a good call and new ideas. It was pricey but if you’re not functioning with your MAV it’s a no brainer. X

Do you mind my asking how much a zoom consult might be and can they get your GP to prescribe on the NHS? I cant afford ongoing private prescriptions. Thanks.

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I think it was £300 that’s with a full run down of ALL your symptoms, a full report is then sent to your GP who then can prescribe for them, whatever they suggest to trial med wise. She also diagnoses so if you haven’t been diagnosed with MAV before then that’s the place to go. I called up at the start of an attack and had an appointment with Dr Simone Gregoire the very next day. I don’t know if I was just lucky but they seemed to be really quick at getting you in for an appointment. Check them out online. I hope they help you x

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I saw an NHS neuro and had a scan to rule out tumours or MS, fibromyalgia has a lot of similar symptoms to MS. He did suggest my imbalance issues could be due to VM but other than antidepressants he didn’t suggest anything else.