The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

MAV: 'The bad thing' I've been waiting for

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues:
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness: Whiplash in January
Start of chronic phase: May 2019
Age at chronic onset: 25
Started medication: June 28
Stopped medication:
Number & type of consultants seen to date: 2 ENT, 1 neurologist, 1 gp
Diagnoses received (one I’m “running with” first): MAV
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: Not yet
Any hearing loss in either ear:
Persistent or intermittent tinnitus and character: Tinnitus both ears
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines: Never had one before this year
Any family history of migraines: Dad had severe ocular migraines
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?:
Friends think I’m making it up
Doctors , save for GP, think I’m making it up

Symptom summary

What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: Can function but its hard, Internal swaying (MDDS-like), Heavy bowling ball head, Weird vision problems, Left side of face very tense, Feeling worse after motion, Feeling the world is swaying, or like a plane cabin
My Worse Day Now: (description of the worst day you get now)

Rough History

  • May 2nd – First start. feeling ‘off’ exhausted
  • Then head pain, then dizziness

Start of Journal

I figured this would be a good time to post, on this forum, my ‘journey’ (more like odyssey) so far with vestibular migraine. I have, as many of us, read through so many of these posts, looking for hope, light, and support. I am now two months into this journey, as I believe my migraine started on May 2nd. But, I would say that the migraine/this has been building up for quite some while.

I have been under chronic stress for the past two years of my life: waiting for ‘something bad’ to happen, perhaps something that would maybe allow me to escape the day to day suffering – ‘ordinary unhappiness’ – that I was going through at the time. I have always had a bit of ‘health anxiety’ veering on hypochondria so after coming down with VM, it took me a lot of time to believe that this was a ‘real’ diagnosis. I have always had a complex relationship with my body, and if this is getting too personal I apologise: although I do not think VM is psychosomatic, I can’t help but shake that there is a message or a link to our current states. That VM, is, in many ways, a cry for help or a cry for attention-- maybe an emotion or a memory brought to light in the only way it knows how? I don’t know-- perhaps that’s the ‘romantic’ in me? But that’s besides the point.

My story started about two months ago, and at first I just felt a bit of pressure and dizziness- I had worn glasses the day I noticed it (I am usually in contacts) and simply put it off to my glasses prescription being stronger than what I was used to. I remember being aggravated by florescent lights, but not knowing why or how. Then, I started having MDDS-like symptoms (with no head pain): just internal swaying, we know the drift. My GP said it was VM, but I didn’t listen to him (because, of course, it had to be something much more dramatic, correct? Needless to say, VM can become dramatic enough on its own). I was still able to function, albeit I was constantly exhausted and had a few panic attacks (that I didn’t really realise were such).

However, with time, my VM got worse (of course). My head was hurting, bowling ball, I barely left my room, stayed in, and always-- ALWAYS-- wanted to sleep. I did an MRI (came back with a few lesions but radiologist deemed them to be not warranting any attention). I saw a neurologist who said that my MDDS like symptoms were a result of central sensitivity syndrome-- that my brain had essentially gone haywire and needed to calm down. He prescribed propranolol, which I tried for three days, but I had some bouts of tinnitus with it and decided to stop.

In the past week, my VM shifted from vertigo/swaying inside me to feeling like the room was swaying, or shaking, and some ‘falling’ sensations. I think the scariest thing bout all of this is the social isolation-- the inability to explain to others the thing that you feel. Of course , they can’t understand. How could they? I know, of. course, that some people think that I am making these up (especially as I have suffered through a break up two months before the VM started).

I have an appointment with Dr S lined up (almost seems like a rite of passage, no?) and am now on 10 mg of Ami as per my GP (for the past week). I am exhausted, and scared, and extremely sad. I feel robbed, but I also am not surprised that this happened to me (and I wonder if any of you feel this way?) I think I also had undiagnosed depression before this VM came to light, albeit not severe at all.

I am also trying to see this experience, in the ways we all do, I think, as a learning experience. I am going to do everything I can to get back to 100%-- or, if not that, 90%. I feel lonely, but I also feel lucky that I can share my story and feel heard by people who know that this does to you. Who you are as a person, the way you interact, and view life. My symptoms are getting ‘scarier’ and scarier but I think that fear is a poor friend to listen to.

I feel blessed that I can still go out (for now), and take walks, and see friends, even. if it takes every inch of me. I hope I will be able to go through this, and more importantly, to learn what it is that VM can teach me. We are, after all, our bodies: if VM is a monster, then I am a monster too. I know the road is not easy, and if I could I would definitely choose not to go through it but we never really get that a choice do we?

Sorry if I waxed poetic but, if I cannot control this migraine (for the time being), I can at least try to control the narrative through which I experience it.

Thank you for listening.

8 Likes

Hi Dizzylady, I read your journal and felt really touched. You put into words the physical but also emotional aspects of MAV beautifully, if beauty can exist in the case of MAV!
A few thoughts came to mind reading your post - when I saw dr S he said that most people he saw had been under some kind of chronic stress for 18-24 months before the onset of the condition. He also said that the symptoms are the brain’s way of telling you you need to stop and take notice of whatever is harming your brain.
I personally believe it’s useful to look at the emotional background of the illness (you mention an emotion or a memory), and to see how we can heal and grow emotionally too, but it’s still very important not to see this illness as psychosomatic in any way; its basis is a real neurological condition, migraine, and it needs to be treated medically. People or professionals that tell you it’s because of your stress or anxiety or whatever (I’ve heard a variety of these things, including from a neuropscyhologist!) that you’re still dizzy will NOT be helpful to you as they misunderstand the condition. You’re going to see Dr S, I believe he’s great, he explains most people end up with depression or anxiety because of the condition, and he does say to avoid stress, but beyond that he kept emphasising to me it wasn’t my fault and it was environmental and genetic factors that had caused my MAV.
Like you I went through a break-up (my marriage broke down a few months into the condition), I had to grieve both the relationship and my good health at the same time… it was so hard, still is at times, I imagine you’re having the two losses to deal with as well.
I wish you a good recovery, and hope you’ll soon find some relief. Let us know how your appointment with dr S goes.

3 Likes

So sorry to have to welcome you to the club - but seeing as your body has signed you up anyway…here’s hoping you can draw some comfort and support from those of us who have been around for a while.
Whilst I firmly endorse the view that what ails us is NO way psychosomatic, I do believe that SOMETHING goes amiss within the body that causes these horrid symptoms - either a genetic pre-disposition, or in some cases a physical injury that we may not even realize we sustained. The problem is to find what helps to right what is wrong in our own bodies and try to rectify it until the body is satisfied enough to at least perform even close to) normally!
Just to mention that when I first asked my medical/homeopathic/holistic Doctor about Meniesr’s (My primary condition) some yearsago, her first question was…‘so who is causing you to be off-balance!’ Perhaps in your case this is a valid question and once you can get ‘around’ the trauma of your break-up, you will find your way forward!?? Personally, I was a bit miffed at her question - having already been through many years of Dr’s questioning the validity of my problem!! However, I later realized that it was her way of making me take stock and look inwards at myself. Sadly - I still could’nt come up with an answer!! However, perhaps in your case this is a valid question and once you can get ‘around’ the trauma of your break-up, you will find your way forward!?? Sending good vibes to help you along your path!!

1 Like

Ah. I’ve found consultants in the UK are much more remote, impersonal. ‘Multifactorial they say, it’s multifactorial’, purse their lips and slide away, Helen

1 Like

Which, simply put. means “I have no clue”!!!

1 Like

I agree completely: this illness is not psychosomatic, it is way too powerful I think too that way. However, I must say that it did come through at a really difficult point in my life. I find myself today obviously in a pit of despair and it’s difficult to come to accept this because just two months ago I was a normal person and now I legitimately find going to my kitchen difficult. But, we will see with time.

1 Like

I also have had this kind of reaction from. my homeopathic doctor, and it’s funny that I felt so insulted as well. But I think that there is a part of me that is afraid to get better, for some reason, and that it also the person I am fighting against (as opposed tot eh VM only).

1 Like

Which infers you now see yourself as being ‘abnormal’? Having a balance disorder doesn’t make a person ‘abnormal’. You are just a ‘normal’ person - whatever one of those might be - who has an illness/medical disorder. As a VRT person told me it’s no worse than having a broken leg, the only additional disadvantage being it is Invisible. A leg in plaster is obvious for all to see. Helen

4 Likes

I just want to thank all of you who. took the time to reply: it’s crazy how less lonely I feel since joining this site :smile:

7 Likes

Yes, this is where the depression hits hard. It’s exactly why you need to push to find social engagement, even if its on the internet like this!

3 Likes

A post was merged into an existing topic: Anyone know if u can lose weight while on amitriptyline?

Post moved for being off Topic.

So, I can now say that when I am in bed/immobile for a long time I really do forget I have MAV. I can feel super slow progress, and motion is once again 100% the worst trigger but I think I am coping.

Yesterday, I even went to watch a 2.5 hour movie (Midsommar, amazing) in the cinema. I paid for it after (a bit of dearlization and vertigo) but to be honest, I was feeling that way before the cinema.

I am now on 15 mg amitriptyline and hoping that I will be recovering sooner than later. I feel. lucky that I am able to get out and about (although in small doses!)

4 Likes

This is amazing news! We all know MAV is a verrrryyyy slow healer so the progress is cumulative and hard to even decipher. Proud of you for getting out there and challenging yourself! Pat yourself on the back, you deserve it! :slight_smile:

3 Likes

Thank you so much!!! :blush: Your positivity is amazing

1 Like

Good for you Dizzylady. I went to the cinema a couple of weeks ago and it increased my symptoms a bit afterwards but it was a good achievement for us both. I’ve just gone up to 40mg of Ami. I’ll let you know how it goes at 40mg. I have more good days than bad at, 30mg but still didn’t feel quite right although I suspect time is what it needs now. Hang in there

2 Likes

Thank you for those words of encouragement, Jess! How long did it take you to titrate up to 40 mg of Ami? And ow long have you been on it?

I sometimes, on Ami, when I get up too quickly have. my. vision turn t o black-- have you ever experienced this?

2 Likes

Vision changes can occur as a side effect of Ami. I should speak to a doctor. Not sure where you live but I’d contact your relevant emergency department just to be on the safe side. If it’s a drug side effect it should reverse once it’s out of your system. It shouldn’t do long term harm so don’t panic. Helen

1 Like