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Anthony, Anxiety & MAV.


#1

My story started a very long time ago. Pull up a chair. I was a child of about 8, and every year a visiting fairground would come to our town.
I was taken onto rides such as the big wheel or the carousel and after only a couple of revolutions I was screaming to be taken off. I remember more than once a ride being stopped to let off the severely distressed mini me. I would feel disorientated, sick, and much disequilibrium. The same would happen on car journeys. After only 2 miles I’d become hot and bothered. I’d go red and disorientated and feel extremely sick. This happened all the way through my childhood until efforts were made for me to avoid travelling and fair grounds. It was strange seeing other kids enjoying ‘fun’ rides whilst I found them a nightmare. They were obviously triggering a mav experience which I wouldn’t have known about when young. My caregivers were great and had me down as a sensitive soul so allowed me to swerve things that set me off.
The travel sickness abated somewhat in my teens but the fairground problem didn’t. I once went to Blackpool on a school trip and went on a couple of rides and was set off again. So I sat the rest out.
In my 20s, the beat went on. But a new development occurred. I noticed that every time I went in a large shop or mall, I’d become dizzy and disorientated, feeling like I was going to pass out. I’ve never fainted in my life but it felt that way. I didn’t know it at the time but I was being triggered by the florescent lights in these places. So I went to see my gp who said it was probably anxiety and agoraphobia. He sent me to see a CBT therapist who was very helpful and yes, I’d had the symptoms of anxiety BUT as a result of the mav related disequilibrium. That was never discovered by the CBT bloke or myself and I began voraciously reading all I could about anxiety. Not knowing at the time that anxiety was a symptom rather than the problem. It usually is.
My 20s and 30s were years of avoidance. The floor of a plane or ferry is very similar to a panic attack in full flood so I avoided those forms of transport resulting in my driving extraordinary distances to Italy and Spain for holidays (as I still do).
In my late 20s I experienced my first ocular migraine and thought I was going blind. All the (now) familiar symptoms of blind spot and travelling zig-zag lines etc. I was frightened to death at the time and this exacerbated my anxiety no end. Phone calls to at least five opticians eventually managed to calm me down.
So avoidance and (sometimes) bravery went on for a great many years. I felt it was just anxiety and that I’d been afraid of living. This state had and has accompanied me forever and become gradually worse.
My initial misdiagnosis of anxiety (25 years ago) led me into retraining as a counsellor, a job which I still do. I’d learnt so much about anxiety and addiction that I thought I’d help others too. This is sublimation and projection but it works. But the problem never really was anxiety. I changed my entire life around by being led up the wrong path. Trained at huge expense and now at 53 I’m in a role that I never intended. In my 20s and 30s I was also drinking too much in order to self medicate the condition which again, I took to be anxiety. The alcohol did ameliorate the anxiety but I gave that up 15 years ago as I felt a growing addiction may occur.
I’m my late 40s I had a shocking experience that eventually led me to a MAV diagnosis.
I’d had a bad cold and blocked nose and was using Vicks Sinex Nasal Spray to clear it. That stuff becomes addictive in the sense that you come to rely on it for clear breathing as one might come to rely on cocaine for confidence.
Anyway, I’d had my cold and was walking through town when I suddenly felt myself being pulled to the ground! A strange force almost pushed me down and I was certain it was a stroke or that death had come upon me.
I retained consciousness and all my faculties seemed intact and after a couple of minutes I was up and walking away from the scene of my demise. This being Blackpool, nobody noticed so I walked away confused.
As most of you can imagine, this set me off on a huge quest for knowledge about what had happened. I ruled out the possibility of a stroke, as did an ENT at the local hospital who saw me. There were some symptoms after this drop attack such as derealisation and mini room spins and an increase in ocular migraines. So I researched and researched and found the labyrinthitis site and many good things on YouTube. The ENT also said it probably wasn’t labs and my own gp said it was probably just anxiety or bppv.
I still had the disequilibrium going into places like The Trafford Centre (mall) and driving seemed to become a part time nightmare, as did walking.
At that time (2014) I was a part time musician and lost my job because I could no longer tolerate the sound and lights on stage. They obviously made me worse. This cost me thousands in lost income. But my other job as a counsellor is sedate and none threatening to the vestibular system.
I bought Migralens glasses and tried some home VRT interventions. My anxiety grew and my life became smaller. It was already quite restricted anyway but I did what I could. I learned to live with it.
Fast forward (or potter forward) to 2018 and I’m on a training course in Manchester in June. By this time I’d become very knowledgeable about the vestibular system and knew myself that I had mav, although I’d also toyed with the idea of simple epileptic seizures and a host of other diagnoses. But mav was and still is the favourite port of distress.
So, on my course I went into a toilet and felt a room spin. Nothing unusual there, but it disorientated me and I’d been relatively happy until that point. I’ve had many symptom free months over the years and done many things I’ve enjoyed.
The whole of summer 2018 I spent with bad walking, my wife or daughter having to accompany me everywhere like a cripple. I went funny one day on Blackpool Promenade and had to continue the journey walking near a fence lest I fell. I also had many MDDS symptoms like the moving floor and the internal movement you can feel or being pulled into your bed. Awful. I covered it up at work because there’s always someone who will stab you in the back and take your business.
I also read with great interest a website by Mr Lexy about meniere’s disease. If anyone would like to know my symptoms, they’re ALL listed on his site as the secondary symptoms of meniere’s disease. Every one of them.
So after a summer of discontent I saw the esteemed Dr Surenthiran in Kent, who diagnosed me with “migraine variant balance disorder”, did a battery of tests, and this placated my woe. I remember walking to his clinic arm in arm with my wife, not confident enough to walk alone. At last, I received the diagnosis I’d suspected for so long and Dr S confirmed all my suspicions. It was a relief. He suggested I take Amitriptaline and maybe Nort and I went to see my own gp in regards to a prescription. I have not taken any medications. As far as I can tell, vestibular and migraine meds are like antidepressants… Very trial and error. I looked at, and have taken, butterbur, feverfew, B12 (which makes me feel worse), Magnesium, and COq10 which gives me energy.
As I said, the secondary meniere’s symptoms on Mr Lexys site are all mine but they come and go. A moving door can set off a short episode of instability. Rain on a windscreen the same. Stress. Sleeplessness. A trip to a mall is a nightmare. Street lighting the same.
My energy is nothing like it used to be. The worse thing about this illness (apart from the symptoms themselves) is the inability to make plans. Some nights I’ll feel great and then arrange to see someone or do something, then feel completely broken when the day arrives. Then anxiety and low mood step in. Anxiety is always waiting in the wings.
At 53, middle aged, wanting to engage in life but knowing there’s only so much I can do is very difficult.

I didn’t want my life to be this way. It’s like a half life… Not really living. I’ve designed my life around my condition and am fortunate enough to have great support from my wife and daughter who understand. But this is living within confines of an ailment. I know a lot of people do that but it’s not living life to the full. It’s like walking round with a bomb in your pocket and not knowing when it might explode. I want to do this, I want to do that, but find myself lying in bed and dragging myself to work then trying to act normal. That’s about it.
In total, I’ve seen 2 ENTs, Dr Surenthiran the renowned neuro-otologist, and my own and other gps numerous times.
I’ve had a vast array of blood tests, imagining I have everything from diabetes to chronic fatigue (which may well be true) and all bloods are clear and normal, as is blood pressure. I don’t drink alcohol or smoke or take any drugs of any kind and never have. Basically a clean but troubled life. The luck or bad luck of the draw.
Remaining main symptoms that come and go… One sided headaches if I sleep more than 7 hours, feeling like I might faint but don’t. Derealisation. Room spins. Light sensitivity. Disequilibrium. Extreme fatigue. Anxiety.
All to do with the brain stem and the spasm it experiences during migraine events, which effect balance (cerebellum), and emotions (limbic system), and vision (ocular motor region). Basically a nightmare.
Confined to the shadows of life I now watch other people living, either riddled with anxiety or mav. The label almost doesn’t matter. The result is lifelessness and misery.
I once knew someone who had MS and its a bit like that. You read all the Facebook sites and everyone basically has the same symptoms with different detail. Inability to live fully because of instability and not knowing what’s going to happen. The worst thing about that is the total drain on one’s confidence. After an episode it feels almost impossible to regain your composure and confidence to do anything. If you get up or look up and you go dizzy, you don’t want to do it again. I know this runs kilter to CBT and graded exposure or habituation or VRT, but that’s how it is. I’ve never known ONE person to have been properly rectified by CBT in my entire 15 years working as a mental health practitioner.

So this is my sad tale and I hope it can help other readers. I’d be interested in hearing any feedback. I’d also be interested in setting up a support group in Blackpool if anyone’s interested.

Anthony


#2

thanks for sharing your story, you have gone through a lot. Can I ask why you are not on meds? Maybe they would help you.


#3

Hi Dizzy. Its a good question. Meds may well help. As a mental health psychotherapist I am very aware of the ramifications of psychotropic medications, ami being one of them. Vestibular meds and antidepressants are very much hit and miss and finding out what works is very difficult, so you have to become your own Guinea pig. I also know how hard it is to get off them, the side effects, and withdrawal symptoms. The one with obvious and great effect seems to be Valium/diazepam… Which is highly addictive. After spending my 20s and 30s self medicating with alcohol I’ve not going to start again with legal drugs if I can help it. I appreciate they work for some and that’s great. Do what helps, I say.


#4

Anthony, that’s a fascinating read. I could spend a day picking out quotes to comment on, lots of talking points in there. Must have taken you hours to compose. In general terms it sounds much like me. Surprising in one way because I blame mine of fluctuating female hormones! Bang goes another theory, maybe?

So very similar, motion sickess as a child, even the fairground stuff. Identical, except no one-sided headaches, and I had many years between adolescence and menopsuse when I had excellent balance and became perfect traveller, on boats in Force Seven gale off West Wales and crossing The Channel, up in a glider etc etc, then at menopause it all returned.

Our similarities have only recently stopped. To an extent I’m still living on the sidelines but things are improving, i coped with all the ‘funny bits’ (motion sickness, avoiding fairgrounds) and then episodic MAV for a decade then it went chronic. Took over my life and I decided it must be stopped. I tried the non drugs routes, CBT, Vision Training/possible eye surgery which turns out not possible, VRT, Alexander Technique. Interesting, frustrating and pocket emptying and basically useless. In fact I got worse so when the neuro-otologist suggested preventstive meds were available I went for it. Five years before if somebody told me I’d be on betablockers I swear my teeth would have curled in horror but the way I look at it, I had no ‘real’ life as I was so I had no choice. I’m lucky, only one med so far, and it’s taken several years to stop the 24/7 dizziness. I’m middle-aged and I don’t concern myself about withdrawal (and I do understand it. I worked with drug addicts). I doubt I’ll ever get off the Propranolol… I look at it this way. Fate or Genetics or whatever dealt me this hand, I’m stuck with it so I have to get the best quality of life I can with it whatever it takes. Helen


#5

Hi Anthony. I read your story and couldn’t believe what I had read! I thought I was one of the longest sufferers on this site! I am 54 years old and had headaches since a child, migraines with aura since 22,and my first vertigo attack a couple or so years later so nearly 30 years! Migraines are in my family,although nobody seems to have got the bad vertigo like I have.Vertigo can be caused by different conditions and as I am female thought it was my hormones.I didn’t get car sick when I was a child,although could never read in a car and could tolerate fair-rides, although have felt like I have got off a ‘merry-go-round’ many a time without going anywhere near a fairground.I was diagnosed with ‘post viral sydrome’ about 15 years ago and have since developed ulcerative colitis. I was only diagnosed properly with MAV by a ENT specialist in April 2017, but I still question this but he ruled out menieres as my hearing was not effected.I have to trust someone! I am on a small dose of propranolol as I can;t tolerate a higher amount and take B2 as riboflavin 5 phosphate, magnesium and a couple of other supplements. I have parathyroid disease and am waiting for an operation. My doctors seem to think my calcium levels have something to do with my increased issues, and my dizziness has become 24/7. I don’t like drugs either but vertigo is so awful you will almost try anything!I can’t work at the moment. I hope you find something that helps but I sympathize.R.


#6

Thanks for sharing, my anxiety went hand and hand with this condition as well. The anxiety never really helped the condition of course, but it was not the cause. I avoided meds as long as I could - until my will to live reached almost zero. I’m a bit off balance and floaty now, but never motion sick and I can do most things. Hoping over the next few years things settle down and I just slowly come off meds and return to “normal”. We’ll see. Good luck sir. Starting a support group is a great idea, I belong to one in the States here.

Oh, and sorry if its off topic, but I was interested in a statement you made:

If CBT doesn’t work in your field, then what is the most effective treatment(s)?


#7

Hi Helen, to answer and address your paragraphs…
Yes, I’ve heard others mention female hormones but that’s obviously not me, but I understand those play a part for many sufferers.
Not only fairgrounds and transport, but I also remember being ‘unable’ to do PE very well at school, especially if it involved somersaults as the turning over would disorientate me. I forgot to mention that in my tome. Again, I would watch the other kids seeming to enjoy themselves so I just concluded I was a weakling.
I too have had perfect experiences of travel, when I assume the MAV is waning or in remission. I think it’s something that never truly leaves you.
I think like you, if it went worse I would go for medications. I’ve tried everything but, and I can handle it at the moment. It’s not chronic… just wrong and confidence-ruining. No one has ever said anything against Propranolol to me.
Ant


#8

Ander 454 thanks for your comments. Yes, I think one avoids taking anything unless it’s absolutely necessary… that’s my belief anyway.
Regarding CBT, many people say it’s just lip-service or a sticking plaster in regards to MAV. Basically positive thinking of the “feel the fear and do it anyway” kind. Which is good if it works. Probably good for phobias or general anxiety, but positive thinking is not going to touch MAV - or nit much anyway.
Best wishes to you too. Anthony


#9

Hello oak17,
I read in your gracious reply that your problems seem to be holistically linked. All interspersed in a way.
The first ENT I saw also ruled out Labs and Meniere’s for me too because my hearing was fine. My own verdict is still out on that as I read about atypical Meniere’s too. It’s almost impossible to differentiate sometimes. If you look at Google for MR LEXY MENIERE’S website and see secondary symptoms on there, I think you will find, like me, that there are very many familiar woes. Ant


#10

Really so like me.

Oh, Infant School, and forward rolls. I told the teacher they made me feel sick but she insisted. I think she regretted making me do two. One made me feel sick and two! I was sick all over her. Well, I did tell her. I think I was a most outraged six year old that day!

Oh, why wait, I cry.

Just as well I’m not Mrs ‘AntofBlackpool’, cos I’d be tempted to smuggle meds into your dinner! Helen


#11

Guess it depends on the cause of the anxiety, My GP thought my problem was anxiety but it wasn’t. The anxiety came later once the MAV became 24/7 and I started to suspect I was going to be stuck with it permanently. Soon as the preventatives started to wane so did the anxiety. Addressing the root cause is best way forwards with all medical conditions I suppose although not always possible, and some people seem almost born anxious so CBT may help them. Hope so. Helen


#12

Hi Anthony. I have read Dr Lexy Menieres website and I have symptoms, most of them!I have had tinnitus for absolute years and first told that it was because I had ‘better than average hearing!’ My sister has tinnitus as well and so did my Mum. It is very common. I have got used to it. My ENT specialist was adamant I didn’t have menieres. He thought it was unecessary for me to have all the tests so I didn’t bother. I did have a cat scan on my sinus’s but they failed to scan my ears! The last bad vertigo attack I had I didn’t notice any hearing changes, but I was so dizzy anyway!The only thing is my vertigo has got worse and it states that normally in Menieres as the disease progresses the vertigo lessens. I have been on
Serc (betahistine),and I take stugeron to try and stop a bad attack, but it gives me even worse headaches.There is no cure for menieres. I think it is classed as an autoimmune disease and as I have one already wouldn’t be surprised if MAV and menieres are linked. Ask your doctor to test your calcium and PTH levels as my vertigo has got worse since I have been diagnosed with parathyroid disease. I hope that when I finally have that fixed I feel a lot better but not counting on it. If you find any supplements that help or anything else keep us posted. R.


#13

Hi Helen, here’s a link to a humble video I made on YouTube about MAV. IF it can help someone?


#14

Hi Anto,
I really think you should try the meds. The Amitriptyline is only given in tiny doses - I’m happy at 37.5 mg per night - and Serc/Betahistine isn’t addictive. As for Diazepam, I take a half a tab if I feel anxious about a trip or going to a mall etc - I’ve had the same pack of 50 x 5mg since May 2018, and have 8 left. The thing about the Ami. is it helps you to sleep, which is so important with MD.
I have recently changed my way of eating to Carnivore/Zero-carb (6 weeks), which can have the same effect as anti-depressents, so, perhaps a change to that W.O.E. might be the way for you to beat this curse without meds?
Cheers
Naomi


#15

Thanks very much for your comments. I might well do that! Anthony


split this topic #16

A post was merged into an existing topic: Hi all. New member

Please try not to discuss different cases on someone’s else’s Diary Topic. Check who the OP is before asking a third party a question. Keep in on Topic!

If you want to ask a third party a question, check to see if they have their own Topic and ask it on their introductory post or their diary.


#17

@AntofBlackpool
Hi Ant,
I was diagnosed with anxiety by my GP for the first 2 years - so I understand that completley! I just had to keep trudging back and eventually saw a Neuro who then after some years (before it became chronic) diagnosed basilar migraine. I am 100% sure that is vestibular migraine… I didnt get actual headaches way back when, however now it has evolved and I get varying degrees of migraine daily. Lucky me eh?! :see_no_evil:

Good and informative video!!:+1:


#18

Hi MNEK,
Thanks for your reply and video comments.
You get the diagnosis in the end and then the quest is to find the cure.
All the best, Ant


split this topic #19

2 posts were split to a new topic: GP said ‘anxiety’.


#20

MNEK - “MS”? I imagine many of the symptoms overlap with MAV then?