Does this sound like vestibular migraine?
Posted , 3 users are following.
Hello all, I'm new here and after your opinions please!
I am a 43 y/o female, first recognisable migraine, with aura, at 27. Occasional migraines with aura for about 11 years. 5 years ago I had my first bout of vertigo (gp diagnosed - migraine associated vertigo). This happened regularly, with my cycle, for around 6 months, then spontaneously cleared up. I will mention at this point that most of my migraines had not involved a great deal of pain, mostly aura, mild headache, and that lingering migraine hangover for a day or two afterwards.
3 years ago (a few months after total hysterectomy, no hrt), I started with a completely new symptom. I can only describe it as a pressure feeling in my head, along with my eyes doing funny things. It felt like my eyes were being pulled into a crossed position, I couldn't focus and felt very disorientated. This happenened infrequently for a year or so, then eased a little, then for this past year it has gotten progressively worse. I have some level of headache every day - sometimes barely noticeable. I also experience visual disturbance and a motion sickness type sensation. 3 weeks ago, I had a major aura, followed by the worst pain I've ever had in my head. It had me bedridden for 2 days. Since then, I haven't had a pain free moment. It's up and down, always there. I also have pain in my eyebrow area, eye socket, cheekbone, between my eyes... this started within the last year, although I have been treated for chronic sinusitis a number of times over the years (there is no congestion).
The pain is getting me down, but the 'dizziness' and being off balance is causing me real problems. My chiropractor believes it to be migraine, my gp the same. My mum has a lifelong history of migraine with aura. Yep, I'm wondering why I'm even asking when I really think about it! The question is, though, if this sounds like vestibular migraine (migraine associated vertigo is the same thing?). My gp prescribed amitriptyline today, I'm scared to take it and scared not to.
Sorry for the long post, I'm just trying to get informed. I have a neurology appointment in 4 weeks, I'm pretty sure I can't manage with these symptoms for that long :-(
Any opinions and/or advice would be greatly appreciated.
0 likes, 22 replies
pcat
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patty818 pcat
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I'm sorry your going thru this I've been told I have MAV but I don't know. I've had swaying/rocking off balance, falling feeling, leaning feeling, nausea, anxiety, panic, sinking feeling, being pushed feeling for a year. I have headaches, neck pain and upper shoukder pain sometimes with it sometimes just that feel like your getting a headache but it never quite gets there. I have it most days 24/7 but I do get lucky and have nothing some days. It's a hard disorder. I took smotriptyline for about six days before I had a reaction to it and stopped. I'm like you afraid of meds so I don't take any. I'm doing VRT and it helps but doesn't get rid of it. I would give anything for it to stop.
I hope you feel better and find help
pcat patty818
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Patty, we sound very similar. I'm sorry to hear you're going through this too. Yes, that leaning/being pushed feeling - I feel like I'm being pulled head first to the floor. I've woken up again today with the almost-headache, neck pain, shoulder blade/upper back pain.
I hope we both get some answers/relief soon.
margaret22116 pcat
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margaret22116 patty818
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Patty my reply to pcat may be of interest to you also. If either of you have anything you want to ask me anything about this disorder please feel free but I think you could both do with seeing a different kind of specialist ....a neurologis won't be of much help and also! Please please please be very wary of taking things like amitriptyline and other 'migraine' medications. Some of them will only make you feel worse and certainly have no chance of working if it is vasculitis. I'd want to have that ruled out before I took anything like that as it could be counter productive.
margaret22116 pcat
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hi pcat, I have just had a long discussion with someone else on here. I have had similar symptoms for a long time (currently symptom free) and I have been diagnosed with vasculitis. Please have a look at this illness. I see a lot of people on here with symptoms of vasculitis and I know what they are going through.
Seemingly unconnected symptoms of a systemic illness which no one can diagnose. Have a look at my profile as I have listed some if not all of my symptoms. And also if you look at vasculitis, please remember that the profile for the disease is very wide ranging to may cover aspects of the illness you don't have or may never have. Some people may only have vertigo and migraine...others will have skin involvement, ibs symptoms etc. The possible list is long.
Vasculitis is an umbrella term for a spectrum of disorders which have overlapping symptoms and it is very very difficult to diagnose.
I am quite shocked even after being diagnosed about 12 years ago how few doctors seem to consider this as an option. Doctors need to be better informed and more open to looking at this as a possible diagnosis. The problem is there is currently no absolute blood test for vasculitis. Only hints in your blood work. I only ever have raised inflammatory markers but never positive ana yet I have vasculitis. Most often it is diagnosed on history.
Also, a neurologist an ent specialist a gastroenterologist and a rheumatologist, all had been unable to diagnose my illness. This is because vasculitis caused inflammation in the body. That doesn't show up on scans and with no absolute blood test...they were all stumped by me. I got the ibs, the 'are you stressed' line for years. It wasn't until I saw an immunologist and after a year or more of attending clinic that I got a diagnosis. That changed my life and I am currently symptom free with good meds. No migraine now for 3 years. God, so glad to be over that. Treatment is patchy though for many who suffer. But knowing what is going on and having someone understand your symptoms is like wow. After years of suffering I have a great doctor currently who takes great care of me.
pcat margaret22116
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margaret, thank you so much for taking the time to write all this down. I will have a look at your profile, and do some more searching. IBS... diagnosed with that 20 years ago... also I've been treated for depression/anxiety on and off for just over 20 years...
I will be right back! Google is calliing
margaret22116 pcat
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pcat margaret22116
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So much new information to process, not easy with an aching head :-/
I could go right back to my toddler years - I used to have 'episodes' of intense neck pain, which left me unable to move at all. They would last just a day, easing gradually. A gp told my mum it was stress (!). It just stopped happening, I couldn't say for sure how long it had been occuring - maybe a year? At age 12, it happened again. Just the once. I was rushed to hospital with suspected meningitis, but I was pretty much ok by the next day (and back at school the day after that) with no lasting symptoms.
This has got me thinking about so many different things that have happened over the years, from an undiagnosable shoulder problem and wrist pain (ongoing) to many episodes of unknown pelvic pain/suspected water infections with nothing found in testing.
My chiropractor hasn't been able to tell me why my atlas (top vertebrae) keeps moving out of alignment (along with various others from my neck to lower back) - suggesting that it must be muscular tension - severe if it's pulling vertebrae out! I was involved in a nasty car accident in 1993, she believes that's what put my neck out initially. But why it keeps shifting back out after adjustments is a bit of a mystery.
Could it all be related? I need to do much more reading. Thanks again, margaret, this is all really useful information for me.
It's good to hear that you finally have someone working things out for you, I hope you continue to feel relief.
margaret22116 pcat
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margaret22116
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pcat margaret22116
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Just a mention - I had full bloods done 2 months ago. The only thing 'of note' was slightly low folate (but without enlarged blood cells). Nothing else. I can't take folate, makes me sick, so I promised to eat better :-)
pcat margaret22116
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Finger pain - forgive me if this is 'tmi' but I sometimes get bad aches in my fingers when I need to use the bathroom (not for a pee!) - I've never found anyone with this bizarre thing. Not that I go around asking people at random!
margaret22116 pcat
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pcat
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Just an update...
I saw the neurologist. He threw me around a bit, then had me do some eye-tracking-finger exercises, finishing with a head thrust test (twisting my head rapidly to each side, asking me to keep focused on his eye). The head thrust test was 'postive'? He tells me I have vestibular neuritis - he explained that the balance system in my right ear is not functioning properly. I was so relieved to discover it's not all my head (you know what I mean!) that I took his 'diagnosis' and came home. He is referring me for vestibular rehabilitation therapy.
So, when I got home I thought I would google this vestibular neuritis. I'm annoyed and confused. It explains the dizzy/off balance episodes - but apparently it's caused by infection and is generally acute. I've been this way for years! Also, I haven't found anywhere anything like my head-rush and face pain symptoms. I think the neurologist was trying to tell me that all that stuff is migraine, he said something about getting the migraines under control (did he mean I need to do that? Or should I have asked him how??). As I mentioned above, I can recognise a migraine. These episodes are different...
Mostly, I am confused by his diagnosis as it doesn't fit with the long-term exsistence and progression of symptoms. Unless I have permanent nerve damage??
I don't know what to do next :-(
margaret22116 pcat
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pcat margaret22116
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I think you could be right, sadly.
Something I've noticed over the last few weeks - when I'm really busy with work, I don't eat very well (understatement!). I exsist mainly on crisps and chocolate, and feel better for it. So, I think there must be something in my diet causing me problems - as well. Wheat/gluten? I have bread, rice and pasta only once a week at most. BUT, I do eat biscuits and shortbread. No meat, very occasionally I will have a few fishfingers. Diet, caffeine free cola. Decaf coffee...
I do feel, I don't know, like my whole system is 'irritated'? But it's really hard to find a common cause... Yesterday, I forgot my sunglasses at work (I work outside all day). By about 5pm I could feel my balance going, which progressed to proper dizziness, I then woke this morning with a headache. I am generally sensitive to light (and very sensitive to sounds and smells). Could the bright sunlight all day have set me off?
I keep going back to your earlier replies, it does make sense to me. I must be more insistent with my doc!
Thanks for your input again, I really appreciate it xx
margaret22116 pcat
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Hi. Yes sadly sun is a trigger for me. Getting overly hot. I really suffer even this year where I am on good meds. I have been flaring a bit. Other people in my help group the same. Others react badly to cold. There is no rhyme or reason with this illness. Sensitivity to light is another symptom. The eyes are very sensitive.
Please try with your diet. I know it is hard. I would say if I eat better it helps. Having said that, when my symptoms are gone I don't have a problem with any particular foods. It is the disease which makes me sensitive to foods and certainly to drugs. I get allergic reactions to things when disease is not controlled. Even things like antibiotics X
pcat margaret22116
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Wow, it's just making more sense with every comment. I have often thought it must be all in my head because sometimes I can eat a pizza/tomatoes/drink caffeine etc without issue, sometimes it's like I've been poisoned. And, it has definitely all been worse since surgical menopause (hot flushes).
I've never been good with meds - especially antibiotics.
I don't know if this is relevant, but - docs and nurses have always struggled to get blood from me. My veins just seems to collapse. Occasionally, they're straight in and it pumps out - but often it's a trial and error thing with at least three different stabs being required.
I will try harder with my diet. I usually feel pretty rough when I try to eat better (fibre - no!) but I will try x
margaret22116 pcat
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I don"t know about the blood thing. 8t is hard with me. Often joke I only have one good vein. Don't know about others if it us the same for them.
Re food I don't think high fibre. But I recommend trying to incorporate anti inflammatory foods like avacado and fish. At the height of flaring I used to crave weird things....would live on cupa soups and toast! Poor appetite. My diet now is pretty reasonable. I am not without issues and weight gain is part of the profile for many of us! But I do try to keep it healthy now x