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Any help gladly welcomed

Hi everyone any help gladly welcomed…

I was diagnosed in March 21 with VM. Initially the consultant thought I had suffered a mini stroke CT/MRI clear however once history taken of aura, photophobia,phonophobia, severe imbalance and terrible neck/head ache vm was suspected diagnosis.
I was sent home from hospital with Aspirin and prochlorperazine. My symptoms have continued since March they are there everyday but have dampened since I began to take Amitriptyline 75mg and prochlorperazine buccal. I attended ENT consultant in June of this year and the following reported:
HINTS/Hall spike tests negative
Vhit test normal gains no saccades
Rombergs test positive and ataxic gait present…
I am due to see my ENT next week and am half expecting him to say there’s nothing wrong because of my vhit result. Can anyone advise what I should be asking for at the next appointment? The dizziness and imbalance is the worst it’s happens unexpectedly whenever I twist, tilt, bend, turn or stretch my head… Also room/eyes spin when I am in bed or turning over even when eyes are closed or open… Please help I don’t know what I should be asking… I live in Northern Ireland

Thank you so much
Shell

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Hi Shelley

Sorry to hear about your troubles and good luck with the specialist. I shouldn’t worry too much. I think you will find he/she will be asking the questions. A detailed history is their best way to make as near an accurate diagnosis as possible. If he/she is any good he will throw the questions and scribble/type furiously most the time you are in the consulting room. You are the patient. He supposedly the expert. I suggest you listen very carefully and if possible record or take notes. Even then you won’t take it all in first time around. Few do. Important question you can ask if you get the opportunity is for a contact telephone number/email address so you can contact later when necessary (and it is virtually always). Also ask the contact process. Does he ring back or do you have to go through an intermediary, secretary/assistant whatever. From my experience probably your most important questions. Specialists post consultation can be so elusive one sometimes begins to think they’ve left the planet!

Your symptoms sound typical to me. You can Search any symptom, ie ‘vertigo turning over in bed’ to check that out. Betwen now and then have a good read of the Wikis on here and search any unfamiliar words. Might make his consultation seem less like some unknown foreign language. I’m in England so don’t know but beware many of these consultants have very fragile egos and won’t take kindly to Smart Alecs who have been hours on Google. No reason you can’t do that. Just don’t let on, not initially anyway.

Might be good idea to write out a short history of your experiences with VM to date and have a copy you can hand over. He/she will still want to ask the questions. They have years of training. They know what keywords they are looking for and often what seems so important to us bores them to death. Whatever you do don’t be scared of him/her. They are there to help you and most will and really nice people. Good luck, do let us know how you get on.

Btw I notice you take Prochlorperazine Buccal tablets. They are extremely good. Saved my life. However I trust I’m reading you wrong. They shouldn’t be taken regularly and certainly not daily. I think from memory three days maximum when acute. Just thought to mention it.

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Hi Helen

Thank you so much for your reply :blush:… I have constant nausea which the GP prescribed the prochlorperazine buccal for I have been on them for about 3 months now (2 tabs in upper gum 3 times a day) currently my GP has stopped them since last week and for another 2 weeks due to tremors in my left hand… My GP wants to make sure the tremors are side effects of this med and not early signs of Parkinsons.

I was more worried about the normal Vhit results because I feel my vertigo every day some days worse than others I credit this dampening down of my symptoms to the Amytriptiline, but am worried the ENT consultant will just brush me off because the vhit was ‘normal’ I just can’t explain how much this has impacted my daily life… I have been off work since March when this started… I use a walking stick because I feel light headed and dizzy most of the time… This is such strange territory for me.
I have had vestibular migraine symptoms for years without realising… Aura… Blindspots… Dizziness… Imbalanced… Ringing ears… Pins and needles… Aggravated by lights and noise… The worst neck and head pain and I always self diagnosed a headache… Low blood pressure… Stress… Needing new glasses… Exhaustion until the incident occurred in March I just woke up and tried to get out of bed and fell to the floor my balance had gone completely and I was terrified.

Thank you so much for your help
Shell

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Prochlorperazine is excellent for stopping vomiting. It can have bad long term side effects one of which, from memory, is some form of pseudo Parkinson’s type symptoms. Another ‘interesting’ one from a VM sufferers viewpoint. It actually makes dizziness/imbalance worse. So the doctors will want you off it. Unfortunately constant nausea tends to often occur with VM. I myself very nearly ended up hospitalised for dehydration during acute attacks on several occasions and although no longer actually vomiting post medication I still had about 18 months of constantly feeling sick throughout my waking hours. As I improved this eventually stopped completely.

That sounds just like me. Happened to me on many occasions. Some specialists refer to VM as a ‘Migraine Variant Balance Disorder’. We can both see why. It’s not the commonest symptom but it happens to many.

I can’t comment on your vHit test results. You need to ask the specialist about that. I never had them. The common alternative is the ‘head impulse test’. I had that and if its any help there was no abnormal response for me either.

No need not to me. I know. Looking at it objectively you can find a test on line - the Dizziness Handicap Test. Specialist will probably ask you to complete one.

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Hi Shelly,
So sorry your suffering. Your story sounds so familiar!
I also woke up one day and couldn’t figure out where the floor was… never having experienced vertigo before, I thought I was having a stroke. It was the most terrifying day of my life.

I have done all the awful tests too including the caloric test which was a real charmer. I actually just read an article that stated Vhit tests for VM patients typically are normal. Here’s the kicker however, with this condition… I think the brain is so confused by the mixed up signals from the eyes and vestibular system, all tests have room for interpretation.

Regardless, your ENT surely will not be hung up on that one test result considering your vast history which seems to lend to the clear diagnosis.

Also, if your doing well with the Amitriptyline… it is a wonderful treatment. I hope it treats you as well as it did me. It literally changed my life.

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The first two ENTS I saw were very inexperienced in treating vestibular migraine. They wanted to hand me off to a neurologist since it’s more of a central finding instead of a peripheral(ears).

So to be frank you could ask him if he’s had a lot of experience treating it? And if he’s honest and says no you could already have a neurologist picked out and ask for a referral to whoever that doctor of choice is. Find the BEST one in your area bc this thing is a beast!!

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I am so glad I found this forum xx

These past months I have felt like I was in the twilight zone… I find it hard myself to get a grip of the reality of this disease let alone trying to explain it to family and friends… Then of course there’s work which is another saga… I work for the Railway (safety critical) so my work place health department are looking for answers too because they won’t let me anywhere near a train until this is ‘fixed’ so long term is also the unknown.

Can I ask how long the vertigo has lasted for everyone as I am shocked by the fact that I can still’feel’ it there every day

Again thank you so much for helping me x

Shell

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Hi Shelly,
The length of time that each person has to deal with intense vertigo is different for everyone. How long did it take before you got on Ami?

I was chronically sick for 11 months before I got a diagnosis so it has taken a long time to get under control. I think those who get help sooner; recover faster if they get successful treatment quickly.

If Ami is settling your vertigo since March, I’d consider that success since VM is a very slow healer.

VM started for me 1/9/2018, I got diagnosis and started treatment 12/05/2018, I’m still here on MVertigo in 2021 but am running a solid 97% of “pre-VM” life :raised_hands:t4: I still feel it every day and I think I always will. That’s my “new normal”, which is fine… I’m so grateful.

Healing is progressive and slow… but you will get there!

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Thanks @Naejohn

I started Ami in April and have slowly had the dose increased and now on 75mg per day. I have found it helpful in dampening the symptoms down. I would say my headache and neck pain are now sitting on a low 4 out of 10 but somedays they ramp up to an 8 or 9… I am grateful for this as its definitely more bearable. The aura and pins/needles in my hands are about once a week again this is massively improved. The vertigo symptoms just seem to lurk constantly and react still to certain movements.
Reading posts on here has given me hope that some semblance of normal life will come back… thank you for your help :blush::blush:

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Give it some thought. What are you actually feeling? Is it true vertigo or something else? Do check out the term ‘vertigo’. Trouble is it means different things to different people. Strangely enough I think I found out it’s meaning varies country to country. Really odd that.

Severe objective (room spinning) vertigo which lasts constantly (in my own case as long as I have my eyes open but that varies with individuals) for up to 72 hours (I consistently clocked 60 hours each attack. Accurate as a kitchen timer) is one VM diagnostic criterium. Apart from that I’ve had very brief spells, only a matter of seconds most probably, more like BPPV rarely but virtually always clustered over a few days when particularly symptomatic. Other than that no ‘vertigo’ just imbalance or medically termed ‘disequilibrium’ and that can last on for months or years even on medication. However unlike true vertigo I’m sure most people can function and even go to work quite safely with some degree of disequilibrium. Much would however depend on what the work involved. Window cleaning the outside of the Office Tower would definitely be out for sure😁.

You may find it necessary to go to polytherapy. Some people end up on three/four drugs each at a smallish dose but eventually you will get it under better control and much of your old life should return. @Naejohn has given what I’d consider a comparable timeline.

Of course it’s always worth studying the other (than meds) parts of treatment strategy, sleep, exercise, diet particularly caffeine reduction, stress and trigger reduction).

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Thank you so much for your message… Actually it has me quite confused… I can feel the light headed ness every day as though I’m on the outside looking in… and at some points everyday I get the room spinning sensation just from a simple twist or turn movement…then when I am in bed I close my eyes and it feels like my head is spinning and my hairs stand on my neck/arms :thinking:
I have started cutting out Caffeine and chocolate and try my best to keep to a sleep routine but most of my worries come to the surface and I can’t shut my brain off…

Thank you so much for your help
Shell

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Sorry if I’ve confused you. True vertigo has to be rotary either the room appears to spin (objective vertigo) or you feel you are spinning ‘internally’ (subjective vertigo). Specialist told me each type of vertigo and each type of dizziness is indicative of different conditions. Presumably affects different parts of the brain/system. Fuller details on link.

Imbalance, Vertigo, Dizziness - Different types of vestibular symptoms

Best way to quit caffeine is cold turkey or so they do say. Sure there are detailed threads on that too if you search.

The confusion resulting from the onset of any chronic condition must take its mental toil. Ramps up the anxiety for many hence brains that won’t shut down. Amitriptyline should help with that. Otherwise on line CBT maybe.

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Was the ENT any help?

On checking out this topic I see I omitted to mention that normal on VHIT is usual with VM patients. I happened to read that somewhere in passing after we last spoke.

Hi Shell

If you have no luck with the ENT then I’d ask your GP to refer you to a neuro-otologist (I’ve had better treatment from a neuro). There is this private place in Belfast:

Dr Baillie also works for the NHS at the Royal Victoria Hospital so presumably he runs NHS clinics there (and perhaps elsewhere) maybe if you are in striking distance of Belfast you could get your GP to refer you there.

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In the Useful Resources page on the Belfast Vertigo clinic site there is a vertigo/headache diary that might be useful to fill in to see if you can track any triggers (hormones, poor sleep etc.)
http://belfastvertigoclinic.com/wp-content/uploads/2016/11/Dizziness_diary.pdf

There is also a link to Dr Timothy Hain’s site in the US which means they must be aware of VM and MAV treatment protocols

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Hi everyone

Appt. at ENT (at the Royal) was last week…my consultant said that because I have headache nearly 24/7 and my Vhit was normal he doesn’t think this is Vestibular migraine he basically has stated he thinks its neurological and is now referring me back to neurology…my confusion continues.

Thanks for the links/information I can now describe my vertigo as subjective it’s me that’s moving all the time not the room and when I don’t feel this movement then I get the light headed floaty feeling as though I am on the outside looking in…I get fatigued very quickly and thus in turn makes my symptoms worse… I get weird numbness and tingles in my hands and scalp…I forget things and get mixed up with words and then there’s the aura which is bonkers because sometimes it’s black squiggles then other times a sparkly rainbow

I am still convinced it’s VM but ENT disagrees the quest continues xx

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I’m not surprised you are still confused. I’m so interested to hear what the neurologist has to say I might even lose some sleep over it! Do access Dr Hains site as per @sputnik2 suggestion and read all the info marked for specialist on VHIt.

So pleased we appear to have done some good in helping you. They should sit up sharp when you throw the word ‘subjective’ into the conversation. Joking aside it really pays to be able to speak to them in their own language as you might say.

I’ve fingers crossed for you. Btw I came out ‘normal’ on everything too and I’ve a VM diagnosis which I don’t dispute.

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Thanks Helen
It was a neurologist that diagnosed VM originally but the ENT consultant thinks not…so back to neurology I go x

And @sputnik2 this is a great link I am going to go through it tonight with hubby when he gets home. It seems different consultants have differing opinions… I think I need to be more assertive when I add my point of view :thinking: but reading through different posts here I can really connect with my symptoms xx

Do bear in mind Dr Hain is in the US. They appear more enlightened about VM there. Here in U.K. many ENTs don’t acknowledge VM. No idea why. Whether it’s outside their field of interest or expertise or not I’ve no idea but I saw four different ENTs and none of them could find anything wrong with me. One actually said ‘You shouldn’t be this ill with what you have wrong with you’, whatever that was supposed to mean, and then wrote a report to my doctor saying he couldn’t find anything wrong with me? I know more educated ones do exist but I’ve yet to meet an ENT who understood VM.

That makes so much sense to me…I was beginning to think no one actually believed or understood this weird disease am just so thankful that I am actually not crazy…the battle for answers continues xx

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