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How to get diagnosed?

Hello, I’m new here. I’m a 26 year old male and I have been going through the worst 12 months of my life due to this unknown dizziness. I originally thought and still kind of lean towards it being an eye problem as I noticed my vision was making it look like things were shaking/vibrating and this was a couple of months before the dizziness kicked in. But I’ve seen a few people comment on here suggesting that’s part of MAV.
My symptoms are; 24/7 mild dizziness, brain fog, can’t concentrate, eye strain/pain, head pressure, pressure behind eyes, light sensitivity.
So I’ve obviously been to numerous doctors and eye specialists who just think I’m crazy and it’s all in my head. Had an MRI come back okay so it’s nothing too sinister. They refuse to refer me to a neurologist so I’m a bit lost where to go.
I was put on amitriptyline which did help a little with the pressure in the head at first but not anymore.
So I want to get a diagnosis ASAP really and try to get my life back on track. What’s the best route to go down in the UK, I’ve accepted i will probably have to pay to see the consultant as the NHS will be a horrendous wait time.
Which person would be best a neurologist, ENT, vestibular physio?
Also I live in Devon so if anyone could recommend somewhere in this area that would be amazing!

(Sorry for rambling on it’s hard to fit everything in)
Thanks for reading.

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Hi Jordan, :slightly_smiling_face:

Sorry you’re suffering… I think you will find plenty of information on the forum with all of the symptoms that you’re suffering with. Can I ask who has prescribed the Amitryptline? I’m asking this because Ami is a first line drug for the treatment of migraine and so surely they must be leaning toward that as a diagnosis? What Mg are you currently taking and how long for? I think you do need to see a neurologist who will take a detailed account of all of your symptoms along with your MRI and be able to give you a definitive answer. I had to tell my GP that I wanted to see one and insist… this was after maybe my tenth time of pleading with the GP over a number of visits!! So yes I would probably pay for one knowing what I know now.

I can tell you, I have had all the symptoms you are suffering with and many more to boot so I don’t think a migraine diagnosis is crazy at all. I am also taking Ami at 50mg which has given me a quality of life I haven’t had for years! So if it is migraine this is a great start for you. Unfortunately I can’t recommend a neurologist local to you but I do know a fantastic neurologist who specialises in Migraine but she is located in Oxford. If you’re interested I can give you her details over a private message? I’m more than happy to help with that.

I wish you well on your journey and hope you start to get the answers you are looking for soon! :pray:t3::upside_down_face:

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Hey,
Thanks for your reply it’s very reassuring!
It was my GP that prescribed ami but I think it was more aimed at helping me with my sleep. I’m on 20mg a night and have been for about 5 months now.
Yes if you could please private message me the details of that neurologist in Oxford that would be great! :grin:
It’s amazing talking to someone that actually understands. Thanks so much for your time.

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Check the Wiki. Menieres Society keeps a list of current otoneuros: Types of Specialists

You might be lucky and be able to get a remote consultation if you can supply all your to-date test results.

Hey Jordan! :hugs:

It’s a pleasure to help other fellow suffers in any way I can, it’s very humbling to show support to others as I have had so much help & support from the lovely people that frequent this forum :hugs:

I will forward her private clinic details for you should you need to use them. You may find someone can recommend a neurologist nearer to you in the meantime. Give me a few minutes to find the details and I’ll sent them to you via private message. :+1:

Check out the Exeter Headache Clinic. Otherwise you are looking to Bristol or Bath. You will need to go privately. Try the Spire or Circle groups. NHS wise there’s a Headache specialist neuro at Yeovil Hospital.

MAV is pretty much ‘unknown’ out West as you say.

Best route. Generally I’d say neuro otologist however out here out
West you have almost as much chance of finding a Duckbilled Platypus so I would go for a specialist headache clinic where there is sure to be a migraine specialist neuro. Of course currently with The Virus all is closed up but you can still plan and enquire.
Helen

Yeah certainly doesn’t seem to be many options down here! But thanks for the suggestions will do some research thanks :blush:

I would say your initial best bet is the Exeter Headache Clinic for several reasons. They will only take referrals from Devon residents which must reduce your wait time surely. They do manage their patients through. Consultants don’t, not out here. They just diagnose and expect management by the GP who, they assume, incorrectly in every one I have ever come across over nearly two decades, they have MAV knowledge and expertise which they do not possess.

Second best alternative would be to try managing your own GP to manage you through using a
Scottish NHS document you will find elsewhere on here produced by Grampian. That’s comprehensive and, unlike say Dr Hains flowchart includes all preventatives available here in UK which differs from the US.

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Your description of your symptoms is uncannily familiar – constant light-headedness, pressure behind the eyes, fogginess. Exactly what I’ve been dealing with (if you search, you’ll find my introductory post, and it may seem familiar to you in turn!).

I’m new to this forum too, and have not been diagnosed with migraine – so these are just my amateur thoughts:

Have you researched “visually induced dizziness”? You mention so many things relating to eyes – eye strain, eye pressure, sensitivity to light – but you don’t mention what makes it worse. Is it worse standing or lying down? How does looking at a screen affect it? Being in a shopping centre or busy restaurant? If you go for a long walk (e.g. 60-90 minutes), does that make it better or worse?

As I understand it, when you have some sort of issue with your vestibular system, your brain can compensate by heavily weighting your eyes to balance you – which as you can imagine strains your eyes because you’re now using them both to see and to balance. This is common in the diagnosis of PPPD, “Persistent Postural Perceptual Dizziness”, which is what I’m diagnosed with. You’ll find some helpful articles on Google about this condition.

I’ve also read here that eye pressure is a symptom of migraine, but I’m coming to realise that “vestibular migraine” is a controversial diagnosis. Some people on here (and some doctors) claim that this condition can be caused by inner ear damage, so “migraine” is really just a blanket term for chronic uncompensated vestibular malfunction. I think probably a majority on here would disagree and say that migraine is innate and in some people it just happens to affect the inner ear. I really have no idea! Both seem plausible, though for me personally I tend to think the first one is true.

Finally, just to say: keep doing your research, and stay strong! I’m in the UK too, male, 32. It’s all very frustrating, isn’t it?! I would suggest you find a vestibular audiologist (I saw mine at the Royal Surrey hospital in Guildford) who can do extensive testing on your inner ears, to find if there are any malfunctions. This would either explain the dizziness (consequence of vestibular disorder) or rule out the inner ear, leaving – I guess – migraine as the likely diagnosis. Keep going to your GP and don’t be afraid to apply (polite but firm) pressure; don’t downplay the severity of your symptoms because you’re embarrassed; don’t let them dismiss you with “anxiety” or “it’s all in your head.”

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Hello Dave,

Yes it’s weird because I read your post a few days before I even posted and thought to myself it sounds exactly like me.
Yes I have seen some stuff about visually induced dizziness and does seem to tick all the same boxes for me. My eyes do feel like the main issue for me and all the other symptoms I have are just stemming from the stress and exhaustion of coping.
I don’t really notice much difference in my eyes worsening in different positions. Yep busy places and supermarkets are horrible for me as everything sort of wobbles. Not good on old pc screens but am pretty much fine with tv and phone screens. Don’t notice any difference after a walk tbh.

Also have you tried them optokinetic exercises that are meant to help? I tried it and the lines start to turn into wobbly lines but when I shut one eye the lines just stay straight and I can manage fine so I don’t know if that’s what’s meant to happen but it leads me to think I’ve got a misalignment issue but the eye doctor doesn’t see it so it’s just my opinion I guess.

I currently am on the waiting list for ENT department but that’s not likely to be for another 6 months atleast. Am looking at going private but without being able to afford all the testing it’ll just be an opinion from them.

I’m trying to keep checking this and researching although I find it does get my mood down constantly trying to find my own cure but guess it’s gotta be done. Thanks for the advice, you keep strong aswell
Hopefully we can all find a happy ending soon enough

Trying to be very brief (Broadband troubles mainly) I went down the Eyes route thoroughly and over a long period of time. To sum up MAV can seem to be generated from the Eyes. All the wobbly vision etc however it pays to remember that our eyes simply gather visual information it is our brain that interprets that information and dictates what we actually (appear) to see. If an optician says your eyes are OK then it’s most likely they are. True Light sensitivity, or photophobia to give it its correct term, is a strong indication of a Migraine type brain. At one time it was virtually a diagnostic tool. Not so much now as it can occur for other reasons. Migraine and MAV is common far more common than Vertical Heterophoria so I am told. People with eye misalignments are generally born with them or they occur soon after and most people with any eye misalignment go through their whole lives without issue because their brain adapts.

Common things are common. VM/MAV is far more likely to occur in people with a migraine history or from a family where there are other migraineurs. You don’t seem to mention a migraine history. do you have one?

Sorry to hear you are waiting so long for an ENT. I appreciate some people do get sorted by ENT but personally I was messed around for many months and eventually saw 3 or 4 ENTs and none could tell me what was wrong with me. I actually mentioned rear head pressure to one at least and he said ‘that’s nothing to do with it [the imbalance/dizziness]’! I eventually paid to see a neuro-otologist (about another condition actually) and in forty minutes he did all the tests for the other condition and ruled it out and, in the last few minutes of my allocated time slot, just mentioned by the way that what I had was ‘most probably’ MAV and to go away and take preventatives. I’d waited 12 years for that two-minute diagnosis. Just my own experience. I know others have had diagnosis from ENTs.

Hey!
Fellow dizzy Devonian here (Exeter).
I am nearly 33 year old female that started feeling dizzy one evening when I was 19 after a few years of visual migraines.
After many years of going to a GP that would tell me there was nothing wrong and I was anxious, my Dad saw Dr Surenthiran on embarrassing bodies treating someone for dizziness.
My parents paid for a private appointment and he requested my medical notes and a letter from my GP .
I went to my GP and he told me there was no way I’d get a referral to him as it would have to go to a board who would have to make the decision and it would take weeks and weeks. I said to him I’m PAYING to see Dr Suren so he was like ‘oh ok I’ll just write the letter then.’
Anyway a trip up to Kent to see Dr Suren and within 5 minutes he had diagnosed me and was very cross reading my medical history over the way I’d been brushed off all these years (8 years before I met him).
I burst into tears as soon as I left his office from relief of a professional finally diagnosing me with Migraine Associated Vestibular Disorder and within 2 days he had me referred to him on the NHS.
I have been his patient ever since and I would say I am about 70% better but we are still working on things. I have a telephone call with him once a year where we discuss how I’m getting on and we tweak the medication.
He always reminds me there is light at the end of the tunnel, there are just people blocking it sometimes.
So what I am trying to say is do not give up, keep going to your GP, ask for that scan, ask for a referral to the headache clinic in St Thomas Exeter, keep pushing because it is not normal to feel this way and you need help.

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Absolutely. A diagnosis is the first positive step towards gaining some sort of control. A specialist headache clinic is the place to get. Push your doctors harder for a referral.

Hmmm not sure about this Helen. Surely people should initially be visiting a Balance Clinic with qualified oto-neurologists - people who straddle all relevant disciplines?

Going to a headache clinic is going to limit the possible diagnoses you receive.

Nothing wrong with going to see a headache specialist once you have your diagnosis to aid with treatment, granted.

Hi could you give me the name of your neurologist that is in Oxford as I live near Witney and would love to see someone close to me. Do you live close to Oxford it would be lovely to talk to you as I think this has been the worse 6 months of my live with this horrible illness. Michelle

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Hi Michelle

I certainly can give you her details that’s fine.
I’ll send them to you via private message if you like?

:upside_down_face: