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symptoms worse with different activities


I’d far sooner believe in fairies at the bottom of my garden, too!


Hi R, I am sorry you are suffering all this too. Yes I am in the UK in London. First I went many times to my GP who thought I had BPPV and was depressed, hence amitriptyline and escitalopram trials, then I went to ENT at Guy’s hospital, saw Dr Louisa Murdin who is specialised in balance problems, she thought I had a virus, had VRT over 5 weeks there without much result. Also had a brain scan which was normal.Tried to get another appointment with her but the waiting list is about 8-9 months. My husband called 999 one night as I was so bad, got to the hospital, had heart tests, blood tests, and they sent me home after a few hours.
So it went on, in the meantime my life was filling me with despair, the only respite being on holidays, which makes me think my main trigger is stress. I have also been seeing a therapist for 5 years. In December I went to see Nicola Harris a vestibular physiotherapist and she diagnosed vestibular migraine.
Gave me a diet sheet, recommended some supplements and vestibular exercises to do at home, wanted to refer me to Medway hospital in Kent, one of only 3 specialist centres for balance problems in the UK, but my GP refuses to refer me as it is out of area, so might have to go private. Seeing Nicola next week for a follow-up. M.


Alot on here have been there to see Dr Surenthiran who’s well respected with MAV. I’m not qualified to speak but I think last I heard his NHS Clinic here is about to close. I understand he does see people in London somewhere. @Amylouise, @janb, @sputnik2 all have seen him and will certainly fill you in on latest update. Helen


Yes I think you can see him in Devonshire Place W1 where I saw Nicola Harris.


Hi. No wonder this causes depression harding surprising feeling dizzy all the time!. It is in your head,but not your head if you know what I mean!I was diagnosed by a consultant Otologist and ent surgeon in March 2017 after years of suffering on and off. My husband called the ambulance in Feb.2017 as I was really ill too! Didn’t want to come out and had to call them again and finally they did and checked me over and went away!I could go on! I think it is a bit of BPPV too but my vertigo lasts hours and was told BPPV only lasts for a few minutes at a time! I can feel abnormal fluid in my left ear.My Doctors won’t refer me out of area either!I have been diagnosed with parathyroid disease finally after loads of tests,after telling them I was sure I had it! They always tell you its stress or a virus!I will be very interested to know how your appointment goes.R.


Hi, Yes I was told it could not be BPPV as it is transient whereas my dizziness is practically permanent except for 5-10 minutes when I get up in the morning. Stress or a virus are the universal answer when they don’t have a clue.
I am going to ask Nicola to check me for BPPV just in case next Wednesday at my appointment. I read somewhere that with one vestibular problem it is not uncommon to have another one. Will report on the result next week. M.


Hi. Do you get the spinning vertigo as well. Hope your appointment goes well.R.


Hi, No I don’t have the spinning vertigo, more a feeling of spatial disorientation, specially looking down, unsure under feet, feeling that I am still moving after a movement when in fact I am standing still, lightheadedness, sometimes legs like jelly, and the general feeling of “not being there”. The worst is walking on a busy street, it has got worse and worse as I try to avoid it and now I have to remind myself to breathe.
Thank you, will report next week. M.


Hi. I get all that as well as the awful spinning. At least you have been spared that.I wouldn’t wish that on my worst enemy!Its a constant battle. I will be most interested to know how you get on. You seem to be like me and not had much luck on the good old NHS!R.


that’s the one that gets MAV misdiagnosed as BPPV. Helen


And some doctors say you have MAV and BPPV …


Had that one too. I totally understand BPPV can be a stand alone condition. In fact I’ve a friend who’s had it for many years and she doesn’t have any MAV symptoms at all, ever. My MAV started out looking much like BPPV but it morphed. Why should I be unlucky enough to get both, eh. Now, after more than fifteen years of MAV, I think I can safely say I only get BPPV type vertigo when very acute with MAV. Between acute ‘attacks’ when they were episodic or chronic as they became, I didn’t ever get positional vertigo. In my case at least the BPPV-like bits are just part of the MAV. Helen


Hi, I only had spinning vertigo once, I was watching Glastonbury on TV, maybe the flashing lights, the noise, I was just able to crawl to bed and thankfully it was gone the next day, it is more a case of feeling dizzy inside rather than my surroundings spinning. Plus I am tired all the time, just feel like sleeping. I think unfortunately there are so many causes of dizziness and it is so difficult to describe, that when you present in A&E with it, unless there happens to be a very clued up doctor around, after the basic checks you will be dismissed as stressed or anxious. M.


All, I suspect, classic examples of ‘Visual Vertigo’. I had some only last night watching TV. A river flowing right to left, and a little speed boat travelling left to right. Footballers with flow of play going one way and that moving advertising hording going the other! Cars with lights on travelling through the dark. People in silhouette, ie backlit, ‘Vera’ on UK TV is always full of those it seems, All on the TV. It’s all linked to Optic Flow apparently and is common amongst people with vestibular disorders including MAVers with heightened sensitivity. Helen


Yes I get all those things too, also what you said about your BPPV-like episodes. I am new here, so forgive me if you have already discussed this, but any tips for coping?


No need to apologise. ‘Tips for coping’. All these things (Visual Vertigo, etc) are symptoms of hypersensitive vestibular state. IMHO once you have got a few of those, and a MAV diagnosis, it’s best to take a preventative which long-term should bring them under control, or at least into better control. Trigger avoidance is another part of the strategy as is migraine diet and caffeine restriction. Tinted glasses meantime help some get through the day but obviously they are only masking symptoms. The preventatives are just that. They hopefully reduce sensivity. They aren’t a cure either. In fact there isn’t one as yet but the preventatives can help alot. Helen


Thank you for this, I am following the migraine diet and eliminated caffeine completely, I had a glass of red wine last night and am suffering today. I find stayed well hydrated seems to help as does my mental signal to relax when I feel myself getting tense + the VRT exercises and lots of sleep. As for stress, well I still have my mother on the phone twice a week! That’s the main trigger. I also read about those glasses that filter blue light. Anyone here tried CBD oil?


A doctor prescribed migraine preventative, trigger avoidance, and possibly caffeine restriction is what’s helped me. In that order.

More commonly used in USA. From my limited understanding strengths and quality available in UK are no match. Helen


Hi @cassandre

Sorry to hear that you are going through it - how mean of your GP not to refer you to Dr Surenthiran in Medway. I saw him privately in the Devonshire place clinic, but I know he also has clinics in other BUPA private hospitals and has a clinic in Blackheath. The BUPA clinics are in Walderslade, Kent and Tunbridge Wells. To go privately I had to get my GP to refer me but I paid the bill and then Dr S put me on his NHS list at Medway. I can dig out a phone number for Dr S if you need it - just let me know. I have paid more for dental treatment than I did to see Dr S and it was money well spent.
Re the Medway clinic closing - I have heard that it is going to close, but have an appointment there in September. I have my fingers crossed that it doesn’t move! Jan


It is really mean and the NHS website says patients can be referred to any hospital of their choice in the country, I think he could have tried and see if the local authority allowed it but there we are. There are ways to go above your GP and challenge it but I am not ready for a fight at the moment. Anyway I am going to Devonshire Place next week to see Nicola Harris and she seems to work closely with Dr Surenthiran. On my first visit she told me more or less the same as Jem describes in her appointment report. The big difference is that she cannot prescribe drugs. I might have to go privately too.