Hi I’m new here, I was only diagnosed with VM last week though my symptoms started full time 6 months ago.
The first few months I was convinced that the symptoms (dizziness, bad brain fog, horrible pressure in my head especially when I sit up or stand up) were coming from my neck because they seemed to get worse particularly when I bent my head down and up again (e.g. looking at phone) and when I turned my head round to the side. For instance, trying to talk to someone who is sitting next to me makes me feel awful unless I just don’t look at them!!) I did a neck MRI and it did show a bulging and torn disc at C6/C7 which seemed to confirm my feelings. However after a lot of doctors visits and a trip to a specialist vertigo clinic I got diagnosed with VM and it does make sense to me as I did get a few migraines in the past couple of years where I experienced dizziness and I don’t only get dizzy when I move my head but have other triggers as well (worse when I get perimenopausal hot flashes or strong smells or if my stomach is off).
However what I was wondering is if anyone else is mainly triggered by head movements? I have to walk around very stiffly with my head in one straight position and try not to move my head much at all if I want to reduce the symptoms. In fact wearing a soft neck collar helps. I’ve looked at a couple of youtube videos of people with VM and they seem to be bending their necks looking down at the camera no problem, so I wondered if my symptom is very unusual?
Any feedback would be greatly appreciated :-)!!
Head/neck movement causing VM is one of the most common symptoms. An illusion of movement - which is the definition of ‘vertigo’ can be internal or external and can be caused by movement of self or environment. It doesn’t necessarily affect everybody or anybody all the time. Symptoms vary greatly in severity between individuals, It is a very common trigger.
By keeping your neck still you are doing exactly what everybody does - I’ve done it myself a thousand times - so understand it’s necessary to keep you functioning and if acute stop you feel so ill however long-term it’s the worst course of action because it causes neck muscles to tense and eventually becomes a habit. The position of your head and neck together with neck muscle tension levels all influence your balance. Hopefully with time and medication your sensitivity to triggers will reduce and things should settle. Helen
Thanks so much for your reply, Helen, that’s really helpful to know. And also good advice about trying not to let it become an ingrained habit. I went for a very gentle massage today and it did feel really good to release my neck and shoulder muscles a bit (though no immediate alleviation of symptoms).
From my experience you will not get much respite from stiff neck muscles as long as your vestibular system is struggling. I had it for years. VRT therapist gave me a shoulder rolling exercise which would temporarily release my neck. I think this is because the ‘tightness’ is generated by the brain. It’s even possible IMHO the brain is doing this specifically to help you balance because posture and neck alignment are integral in balance system. Not that that helps much with the discomfort I appreciate! Helen
Welcome to the forum Katherine, although I’m sorry you’ve been diagnosed with VM! Oh the neck pain… I remember it SO WELL! Actually in retrospect I’ve been going to chiropractors for the past 10 years with the same complaint with my neck, although only had my VM diagnosis in Dec 18. When MAV decided to rear it’s ugly head in January of 18, I really couldn’t move my neck at all, even an inch without feeling dizzy. My neck and shoulder muscles looked like the Incredible Hulk! I wore a neck brace and slept with a travel pillow wrapped around my head flat on my back so my head couldn’t move. I just knew when I went to see my specialist for the first time, he would immediately connect the vertigo to my neck issues. Nope! Quite the opposite. Neck issues weren’t my “cause”, but my “affect”. Within the first month on Amitriptyline my neck ache went away! I had not been neck-pain free in probably a decade.
Yes sorting out cause and effect is so tricky with this illness. The thing that threw me is that my neck feels kind of jammed when I try to do certain movements like tilting my head back, but it provokes dizziness rather than pain. When I found out I had a bulging disc it make total sense of the jammed feeling - it’s like you are trying to open a door but there’s a sock stuffed in somewhere near the hinges. I never had this before. However I think it must be just a strange coincidence that my disc started bulging sometime around the time my VM started.
It’s very encouraging that people on this forum like you and Helen get relief from drugs like Amitryptyline. I think I will have to ask my doctor to try that. At the moment I am only on 50mg Pregabalin and 20mg Proponalol (going up to 40mg) today and still have really disabling symptoms…
I find the McKenzie neck exercises very good if I really start getting neck pain or pain in my upper back. Especially if I do them regularly throughout the day for a few days they really take the pain away but like you say, as long as the vestibular issue is there, the problem will keep occurring.
McKenzie is good. I also find that “Is, Ys, and Ts” on an exercise ball help over time to keep my shoulder’s back and down. I hope that once my migraines/dizzies go down this neck/back crap just leaves. I’ve put in so much effort over the years to fix my neck/back and can’t ever seem to get a handle on it - takes daily PT just to keep my range of motion. Everything just feels like tough rubber and tight cables. It all started 10 years ago at the base of my skull and slowly its worked itself down to the low back.
I don’t take Amitriptyline. In fact I have contraindications against all tricyclics and couldn’t if I wanted to unfortunately. I take Propranolol which IMHO takes alot longer to work, works very differently but is every bit as good if you can stick with it. Helen
Right, interesting. What dose are you on and how long did it take before it had an effect? Do you still have symptoms on it or not anymore?
Maximum dose for migraine in most countries is 160mg. Some go to 240mg. Main restriction is how much it slows your pulse up. Some people get relief at very log doses. I’d say most need minimum 80mg and a wait of at least 6-8 weeks to see results. I took alot longer but there are many other factors involved for sure, ie length of time condition previously untreated being major one. I was misdiagnosed for 12 years beforehand. Yes, I still get some symptoms. Lately I’ve had a week with virtually no symptoms at all. Read my PD for more info, IMO and from personal experience it’s totally unrealistic to expect to be symptom free for a long time, talking a year or more. I’d say some symptoms will linger now a long time. Helen
OK thanks so much for the information, it’s really helpful. I probably have a way to go before I figure out what works best for me. But this site has really given me hope that something will eventually .
I have severe foraminal stenosis c5/c6, bone on bone degeneration and spurs all on the left. My facial/neck pain, nose stuffiness, tinnitus, eye tearing and twitching, also all on the left. My dizziness is a rocking dizziness that tends to come in attacks. I do get sudden feelings of being pulled over, when I look to the left and down. My Neuro thinks my neck is causing Cerviogenic dizziness, and also triggering true migraine. The muscles on the back of my neck on the left side are like granite, and she thinks it triggers basilar migraines for me.
In Oct 2018, I had a cervical epidural at c5/c6. It worked for 3 days. During those 3 days, all of my symptoms disappeared. I wasn’t having major dizzies at that time, so hard to compare that, but it was pretty miraculous.
If you’re also having neck, shoulder or arm pain, maybe ask the Dr about trying an epidural. For me, although it didn’t end up working very long, it was considered"diagnostic". Problem is, neck surgery is risky and no guarantee of being better afterward. I’m now trialling meds that work on nerve pain and migraine. Gabapentin has seemed to work well. Neck surgery may be in my future…
My mom had neck surgery to remove some bone spurs and it really helped. There is always risk, but it can definitely solve some issues. I went to the same orthopedic surgeon to have him look at my neck/back and the MRI revealed nothing - no bulging or spurs. I guess my pain is more of the myofascial type.
Hi yes the orthopedic doctor I saw wants me to stay with the migraine programme/drugs for at least 6 months before considering neck surgery but actually I don’t have a lot of degeneration in my neck only a bulging, torn disc which could possibly be leaking cytokines onto the nerves and aggravating them (my doctor’s theory). I did ask him about injections into the nerves but he said I didn’t fit into the category of people it would help, but I can’t remember now the reason he gave why!! But the more I read on this group the more I do think I fit more into the VM category more than cervicogenic dizziness which I originally thought I had. I don’t have arm pain or finger tingling or any of those symptoms.
However in my original research of cervicogenic dizziness I came across this article about nerve ablation which could possibly be helpful to you for up to 10 months at a time, given that the anaesthetic worked for a couple of days…?Cervicogenic Dizziness Successfully Treated With Upper Cervi... : A&A Practice
Interesting comment. Makes sense. He should end up ‘knowing what’s left’ to deal with I suppose. Reading through your story bit surprised they didn’t put you on gabapentin before Pregablin. Sure they had good reason.
As you only got a diagnosis last week I’d think that’s more than enough for starters. Preventatives can take months to really kick in and if you start up on too many you’ll not be able to sort out what’s causing what if you do develop side effects, or, if it works, which is working. Best to tread water a while, avoid known triggers and manage symptoms while you wait and see. Helen
Hi What’s the difference between Pregabalin and Gabapentin? Even though I only was diagnosed with VM last week I’ve been on the Pregabalin for a couple of months because the orthopedic surgeon prescribed it when he thought it could be the disc leaking onto the spinal nerves that was causing the dizziness. I did find it took the edge of the worst of the dizziness so kept taking it, though I think that’s partly because it helps me sleep.
Thanks for your advice about taking things slowly to see what’s doing what. I’m sure you’re right. I’ve also just introduced all the supplements so that’s definitely enough to be getting on with. I do think they’ve made a bit of a difference the last day or two as well. It’s frustrating when my life is on hold though not to be able to try everything at once ha ha!!
Thank you! I will check it out!
I’m not sure of the exact differences between pregabalin and gabapentin, but I think it’s just Dr preference. My spine Dr gave me low dose gabapentin for a similar reason- to calm the nerve. I’ve taken it a few times, when I don’t have to get up at 4am the next morning! And even that low dose does help. Takes the neck, face and arm pain away, and takes my tinnitus away! No other drug has helped my tinnitus!
Very little I understand from reading about it but I’m no chemist. Pregablin is newer version of Gaba it seems and should have fewer side effects. My comment was made becsuse I was but surprised you were prescribed Pregablin and not Gaba because I’d assumed you’d been given it by neurologist for controlling MAV and I think Gaba is used more often by neurologists but now I see you were given it by orphopaedic makes more sense. Actually I have heard either can be used for MAV, and any long-term chronic pain condition too. Glad it worked for you for both but of course that doesn’t really help specialist finding root cause of the dizziness so I guess you’ll be going round and round a bit longer in more than one sense of the phrase! Still good to have some relief in the meantime. Helen