The Migraine Associated Vertigo Community
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My Experience with VM and Symptom Uncertainty

Hi everyone,

My name is Allyson and I’m so pleased I discovered this website because it is the only thing giving me hope at the moment.

To cut a very long story short, I had a few brief episodes of BPPV last summer that was cured eventually with the Epley manouevre and then in November I was very poorly with a throat infection. Whilst suffering with this, I suddenly had a severe bout of rotational vertigo that lasted several weeks - the diagnosis my GP said was probable vestibular neuritis. Although I recovered, the vague sense of dizziness and feeling ‘not quite right’ lasted. Every time I felt dizzy, it caused me huge anxiety to the point where I was starting to get regular panic attacks. I thought I had everything from a brain tumour to MS because I had so many weird symptoms, including numbness in my arms and frequent pins and needles in my legs. Trying to explain this to all manner of medical professionals proved very challenging with most saying it was just health anxiety. Not helpful! Needless to say, all blood tests and my MRI scan have come back normal.

Realising I was getting nowhere with the NHS, I paid for a private appointment to see an audiology specialist and was diagnosed with VM and PPPD. Although this should have helped me to feel a little better, I’m now almost 12 months in with no abatement of symptoms. I have the usual suspects of constant 24/7 dizziness but also vertigo with dropping floor senstations and other strange things that seem to set it off i.e. eating dinner. I didn’t think that just this activity alone could cause vertigo lasting hours! Watching the TV is sometimes visually uncomfortable as well as reading and using the computer on occasion. Additionally I have high pitched, constant tinnitus, pins and needles sensation, head pressure (never painful but fairly constant above both ears) and a nervous system that seems to be completely out of control. I’m getting regular panic attacks, feel extremely fearful and anxious to the point that life has become one long tightrope with me trying to get across it without falling off. I feel a completely different person to the one I left 11 months before and can’t even begin to imagine how I will ever feel normal again.

The only medication I’m on is 10mg Amitriptyline at night (prescribed and taken since February this year) and Sumatriptan 100mg tablets for the headache/vertigo. I haven’t noticed any change in my symptoms. It doesn’t help that I’m peri-menopausal as I believe hormone fluctuations can play their part but I’m not sure to what degree. Also, I have Generalised Anxiety Disorder that before all of this was manageable but now seems way out of control given everything that has happened since last Autumn.

Despite my diagnosis, no medical professional has actually sat down and explained to me in layman’s terms about what VM actually is and how it impacts the brain. Without knowledge, my anxiety and uncertainty is constantly fulled. I would be so grateful for some more insite into this condition particularly as my pins and needles and numbness seem to be activated the moment the vertigo kicks in. I haven’t seen many comments about this and wondered if this too was definately a part of VM and if anyone else is experiencing this. Even when the vertigo has momentarily stopped, the pins and needles are constant. My neurology appointment confirmed that all was normal.

Apologies for the rambling - just a lot of frustration and sadness at having to deal with a condition I know little about and that is totally hidden. My work colleagues have no idea just how much of an effort it is to just survive the day! Curiously, driving seems to be the only thing that gives me relief from the vertigo and background dizziness.

Any help would be most appreciated.
Best wishes.

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Hello Allyson and welcome.

As we almost always say, we’re sorry you’re suffering but glad you found us. Please take some time to read our wikis. They contain a wealth of information.

As to pins and needles - common. I can’t feel my face at the moment and had to wait to be able to feel my hands to respond. It’s part of the migraine aura part of VM.

Welcome.

Emily

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Thank you so much for welcoming me and I will certainly have a look at the wikis.

Best wishes,
Allyson

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Sorry it was short. I’m usually one for long greetings. But, I’m at work with a migraine. Joys of VM.

Take care of yourself. You’ll find this is a good community to be part of. We’re especially good at demystifying VM and helping you conquer your anxiety. And rest assured, this is a physical condition that can trigger anxiety. It is not just anxiety.

Also, you might want to talk to your doctor about either increasing the Ami or giving one of the other drugs a try. You’ve been suffering too long on that low dose.

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Hi Allyson, as @flutters mentioned… you’re in a good place here where your surrounded by people who can commiserate and offer experience based advice.
You’re experience thus far sounds all too familiar!
Ami gave me my life back at a dosage of 50mg, I have since switched to Nort for help with the weight gain of Ami but I cannot praise Ami enough for the changes it made in my day to day life and anxiety. Panic attacks are not uncommon with this condition due to the horrid nature of the attacks. I’ve only had one in my lifetime and it was a couple weeks into MAV. I pray I never have one again!
It took a year for me to get a diagnosis, so the first year was hell. Please know it can get better! Take a few minutes and read this post which helped me understand more about this condition: Vestibular Migraine Survival Guide 2014
Best wishes,
Renee’

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Good Morning
I so feel for you trapped in this cycle. I have had chronic VM since 2014 and it took until 2018 to get some partial relief with Venlafaxine plus 37 Botox injections.My employer and colleagues now fully understand how ill i am as they see me in full blown attacks.
You are in very good hands on this site. The " regulars" are full of information and advice they post very frequently
Keep us updated with any progress
Jo x

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Hi Allyson. Cannot really add in much at this stage. Glad you found us. Sorry such a step became necessary. Try not to let the anxiety win. MAV will feed on it. We aren’t doctors but could well be you are going to need a good bit more Amitriptyline to get this under some sort of control. It is a hard nut to crack. Back to the doctor I’d say. Helen

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My grateful thanks to everyone in responding to me. I literally burst into tears (with relief) just knowing I’m not alone with a whole host of frightening symptoms. Most of the time my dizzy and vertigo attacks strike out of the blue - like today at work - where I did nothing to cause any provocation. Naturally my anxiety spiked through the roof and made me feel dreadful but I was determined to see out the day and not make a fool of myself in front of others.

The Vestibular Migraine Survival Guide was excellent and explained a lot of what I’m currently experiencing. One thing I forgot to mention was nighttime - something I greatly fear because it’s like trying to fall asleep on a flying carpet. I’m propped up with pillows but after a minute or two of lying on either side, I literally feel like I’m dropping. I woke myself up the other night convinced I’d fallen through the house! So now I’m a bit stuck in a cycle of knowing I need more sleep but keeping myself up because I know what’s coming when I close my eyes. I suppose you could say I’m my own worst enemy but this condition has really changed me as a person in terms of greatly fearing the unpredictable.

I will definitely look at the meds side of things, too, but will need a change of doctor I think. My GP so far has accused me of having health anxiety which she feels is to blame for all of this and says I should be ‘greatly reassured’ that all of my tests have come back normal. To be fair, she has referred me for CBT counselling but I’m still on the waiting list some 11 months later and not likely to be seen until the new year. I’m seriously wondering whether to pursue alternative counselling but not quite sure what direction to go in.

Sending my very best wishes to everyone and of course I will keep you updated. Thank you so much for being a crucial, supportive and caring lifeline in my time of need.

Allyson x

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GP know pretty much nothing about VM. Get to a neurologist.

Falling is a common feeling with VM. You’re in good company. We believe you. Really, read the wikis. Do searches on every one of your symptoms. You’ll find them here.

This is no reassurance, but you’re normal to us. You fit right in.

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As @flutters says first step is to see a neurologist preferably one who specialises in migraine. GPs lack necessary information almost always.

No they don’t strike out of the blue not ever they have to be triggered and there’s your trigger, same sentence ‘at work’. Work environments are often main triggers forpeople who obviously already have a predisposition to developing vestibular condition.

Use the forum’s Search facility you’ll find plenty of references. Try ‘Falling through the mattress’, ‘Vertigo whilst sleeping’, ‘Afraid to go to sleep’. Things like that. Common Occurrence. Heken

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Sounds so very familiar!!! Even well medicated, if I have a stressful or “high functioning” day I get the flying carpet ride when I go to bed. It’s one of the more scary feelings with this disorder but now knowing that I’m not alone and it’s fairly common, I am not scared by it anymore. Just ride the waves. My husband said that he would love to be rocked to sleep :smiling_face_with_three_hearts: So, that’s how I look at it now :laughing:

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I had that sinking and drifting/sinking sensations when lying down in bed. I looked at migraine food triggers and I realized that I eat oranges and chocolate every day. I cut those out completely along with caffeine and it got rid of those sensations. However I still ‘float’ but intensity is not as much.

Try adjusting your diet as it helped me more than straight medication.

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Hello
I have exactly what you have explained
It’s very scary to say the least
To cutt to the chase, I am being seen by a team of neurologists an ENT numerology an I have had great improvement
I was started on 10 mg of nortriptyline an went up every 3 weeks till 40 mg
This has subsided all my symptoms even the crazy anxiety an panic attacks
You can get some good books on VM on amazon as well, not sure if your in California like I am or not… if you are in California I can give you the names of my neurologist as well for your follow up care
I am seen every 3-6 mo the now to just watch me an be sure no symptoms creeping back-
I am also per menopausal this is one of the triggers for VM in women I was told, it can subside an even go away after menopause I was told, but that’s like 10 yrs away for me- lol
Anyway I hope this helps
The medication I’m taking has brought me back from hell, I was bed ridden for 6 mths from this an lost over 40lbs from not being able to eat due to my crazy dizziness an weird head sensations
Talk to your neurologist about the medication I mentioned an see what they say-
Good luck an I’m so glad you too have found this support group just as I had months ago…

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I had the same experience. Fell into a bad depression at the 1 year mark because nothing was getting better. Now at ~3 years in I am ~90% better. You will get better, much better, just keep working on the treatment options with a Neurologist!

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Welcome to the site Allyson :smile: It will get better, I promise! The brain is a wonderful thing. Trust it to sort things out or at least adapt so that life gets better for you. I haven’t had attacks like you describe for 3 years now but of course I remember them well. As regards sleeping, I found that a very firm pillow helped me. I used a contoured pillow image and it was really almost as hard as a board! Also, I’m a side sleeper and I found that it helped to use my hand (the one closest to the pillow) to support my head on the side of my forehead above the ear. I think that what these things did was minimise all those little head movements that the brain is misinterpreting. Now that I’m ok I have gone back to using a latex pillow which is really quite springy (bouncy almost) and didn’t suit me at all when I was in the middle of or coming out of a VM episode.

I use that same pillow - for my neck. It’s doing double duty.

Hello again everyone and many thanks for all the lovely comments and messages of support - it really means a lot to me! I’m having an especially tough time at the moment and a slight spike in symptoms which is just making my anxiety and feelings of depression difficult to manage. I wake up every morning determined not to let things get me down but then I feel that first jolt of vertigo and think ‘oh no, another 16 hours of similar’ and then it’s very hard to get into a positive frame of mind.

Anyway, I have a slight update in that after waiting several long months (I live in the UK and was told that in my area neurology has a 50 week waiting list), I finally have a neurology appointment later this week so I will definitely be taking everyone’s comments on board regarding medication and treatment options etc. If anyone can think of anything really specific I should be asking then that would be great to know.

Thanks also for the comments about the pillow - I’ll do some research on that - as well as diet. I’ve already cut down on salt, caffeine and alcohol and will try and keep a food diary to see if I can identify other hidden triggers. I know I’ve got to work double hard on the stress side of things because my hair is actually beginning to fall out…but I am determined not to give in and let this thing win!

Hopefully I will have something more positive to post soon.

Best wishes,
Allyson x

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