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Hi everyone! New to this page. I was referred here. I was diagnosed with vestibular migraines a couple years back. Still unsure that’s the problem though as I have issues in my cervical spine and have for years and imaging has proved it.

I’ve seen a neurologist, neuro-opthalmoligist, 2 different ENT’s, my PCP, chiropractor, PT/MT. The two ENT’S, PT/MT and chiropractor thought I had “cervogenic dizziness” or issues with the craniocervical/cervical spine causing my symptoms which after reading a lot and my symptoms- I agree, but there is some sort of headache trigger there as well. NOTE: My ears have been ruled out as a source of vestibular dysfunction. 2 brain scans did not show anything either.

My symptoms are: Neck pain (chronic) all on right side (right upper side below skull and behind ear and lower right side C5-C6 daily - I have a moderate sized bulging disc) and i get lightheadedness (NOT vertigo), disoriented, feel off-balance- feel kind of tipsy, brain fog, leg weakness, fatigued, blurred vision at times and sometimes with headache and sometimes without headache along with some nausea here and there. Anyone else have these same symptoms??? I feel like this daily now. Something is not right. Is it possible to be having a vestibular migraine every single day??

I’ve asked others what their vestibular migraines symptoms are and they never sound the same to me or as my symptoms. It’s been quite frustrating. I’ve been dealing with this for over 3 years! Need help. Need answers.

I’m just wondering if they are for sure “vestibular migraines” or these are all from my neck??? Please let me know what your symptoms are? What/who helped you? Medications you take that have helped? I’m nervous to take medication for this. Hate all those crazy side effects.

Appreciate your responses! :pray:

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Welcome Erin. We can’t diagnose here I’m afraid. It’s frustrating but that’s got to be reserved for qualified health professionals. Please see the very first link on the Support Wiki: Symptoms common to MAV & VM. That probably answers one of your questions?

MAV & VM can last for many years. The constellation of symptoms can change over time and morph. It’s a chronic condition. Some MAV & VM symptoms are 24/7.

Please use Search to find what people have found helpful. Check out the #user-polls, particularly:

The use of this site is transitory for most people so you will only get a narrow snapshot of opinion asking that question in a Topic and it’s been asked a lot before. Please read the vast material linked in the Wiki and the experiences reflected across the site.

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Very similar symptoms here: chronic stiff neck, usually on the right side but it can relocate to the left side here or there (usually a sign that I’m about to have a bad few days of dizziness!); periods of head pressure (pressure inside the head, pushing out) which come and go, along with lightheadedness (feeling woozy and that I might pass out); occasional periods of imbalance, where I lose my balance and almost fall over; general 24/7 mild headaches which come and go.

It’s sort-of 24/7 and constant, though I sometimes think I can also make out specific cycles of symptoms… they just morph into each other. Potentially I can make out a symptom-cycle wherein I’ll have food cravings and an especially stiff neck, then the following day I’ll have drowsiness and head pressure, and heat and feelings of inflammation, especially in the trigeminal nerve areas, radiating across the forehead… then I’ll feel really lightheaded and zonked out for a day or two, then it’ll all start to clear up but I’ll feel tired, need lots of sleep, might be quite irritable etc.

I find it difficult to tell if there are actually symptom-cycles, or whether I just have a random load of symptoms, all jumbled up together, coming and going at will.

It’s also at the moment quite well under control, through supplements and exercise and staying positive, though this huge temperature drop in the UK (and my diet over Christmas!) has definitely not helped.

I empathise with your uncertainty about your neck and “cervicogenic dizziness.” I’ve seen a chiropractor, who told me I have a rotated upper spine, and did an X-ray to prove it. I’ve also seen an NHS physio, who studied the same X-ray and told me it’s completely normal and that the chiropractor was deliberately misreading it to try to get me to pay for treatment. So who knows?!

It seems intuitive that people with neck/spine problems will sometimes become dizzy, because of restricted blood flow, poor communication to and from the brain etc. But I’ve also read so much that neck pain is a migraine symptom. So which way around is it? What causes what? There’s also the diagnosis of PPPD (which I assume you’ve researched??), and neck pain is quite important there too: if you have daily imbalance, you’re quite likely unconsciously to stiffen your posture, which could easily create chronic symptoms in the spine and neck.

Anyway, research PPPD if you haven’t already. There’s controversy about the diagnosis, in particular over whether it’s different to migraine or a subset of migraine, but it’s possibly closer to your experience than the diagnosis of “vestibular migraine” is.

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Thanks for the info. Yes, I’ve heard of that PPPD. Need to read up on it again. Have you tried anything to help you with your symptoms?

No caffeine, experimenting with the migraine diet, magnesium supplements, long walks every day, same sleep/wake times every day, lots of powdered ginger. But that’s just me, it might be different for you.

The thing that would, I imagine, help with your symptoms is delving into the research - of PPPD, migraine etc. - learning the mechanisms behind it all, and working out based on that what would be right for you. I don’t believe there’s a way of fast-forwarding through all that potentially boring work and just miraculously healing.

Hi Erin,
All of the symptoms listed are symptoms that I have had with VM, including neck pain. When you have time to spend researching on this forum, you will see neck issues are very common here. Cause or affect? None of us know. Actually could any of our symptoms be cause or affects? There’s so much we don’t know, the medical professionals don’t know and I suppose we may never know.

Oh yes! Every single day, every single waking moment! The thing with the term Vestibular “Migraine” that is mis-leading to people is that we tend to think of a migraine as an “event”. My Dr put it to me like this: It’s called Vestibular Migraine, not Vestibular Migraine(S). These are typically not independent events when it’s chronic. It is a state of being that needs to be addressed, then once the chronic phase is controlled, then vestibular migraine events can be addressed.

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Hello. If you got more help with your neck pain it’d help and might cut down on the number of possible diagnoses.

I had lower back problems for years was convinced I at least had kidney stones and all sorts of strange symptoms and found after ten years of false starts the work of Robin Mackenzie. No super-guru he found out his techniques by accident but for long term disc problems he really works. His Treat Your Own Back book gave me my life back.

Anyway, his Treat Your Own Neck book worked wonders for my partner using similar principles.

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Treat Your Own Neck
More recommended books here

I was nearly paralysed by a chiropractor. I don’t want to belittle any individual practitioner but I wouldn’t let one within a mile of my elbow let alone my neck.

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I wish you well and welcome to the group.

Thanks so much for the info. Funny you say this- I’m going to see a PT on Monday who specializes in that McKenzie method for my neck. I went to a Chiropractor for longer than I should have - about a year. I was also getting injections in my neck- epideral which did not help at all. The last 3 times I went to the chiropractor- I hurt worse afterwards. It’s been almost 4 months now and I’ve had terrible pain in my neck. Just went and got a new MRI this past Monday. Waiting for results. Did you do any images, ect?

I guess what makes me confused is that it seems like majority of people with vestibular migraines have a “spinning-vertigo” type of feeling. I do not have vertigo- more lightheadedness/disoriented/tipsy kind of feeling. I do, however have many of the other symptoms along with neck pain/issues of vestibular migraines though. I’m very frustrated and hoping I get the right treatment but also glad to know others are experiencing some of the same things as me and not alone.

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Hi Erin, I have a lot of the the same symptoms. I also had a large c5/c6 disc herniation. My dizziness started first then a few days later the neck pain. I don’t get the spinning vertigo either. My head felt like a bobble head. I also had blurry vision.

I tried chiropractor, physical therapy and 1 epidural injection. The epidural made my dizziness worse. I couldn’t drive for 3 days.

The Pt and chiropractor helped but it wasn’t enough for me. I tried my best to avoid surgery but I was in so much pain I could barely work. I had laser surgery in October to repair the bulging disc.
My neurologist prescribed nortriptyline, he thinks my symptoms are migraine related.

I am still having dizziness and balance problems. I don’t get the blurry vision anymore though. I am doing much better.

I think it was a combination of fixing my neck problems and migraine meds. I am still in the process of seeing a neurotologist to get answers.

Have you tried wearing a soft collar? I wore one every night while I slept.There is an inflatable traction device that helped a lot. You can buy one on amazon. I would wear the traction device around the house sometimes. It helped me with the dizziness and the neck pain.

I really hope the McKenzie physio helps.

I had an MRI ages back but certainly with lower back problems they’re not particularly useful because most people have some issues. (I’m hoping it’s different for necks.) You can have what looks on screen a completely totalled spine and be fully functioning, but also you can have no obvious impingements and be in agony. With McKenzie you know it’s working when the pain starts to move to the centre.

In the end it doesn’t really matter what a picture says - if you have pain on the right hand side of the neck all the time you need treatment!

I saw an acupuncturist who said one very useful thing in my opinion about all people offering treatment. He did three sessions and I wasn’t improving and he said “If it’s not helping after three sessions it isn’t going to help”. He had work coming out of his ears. He knew when to admit defeat. He had work coming out of his ears for a reason. Someone less good will keep on trying to help, suggesting pre-payment for twelve sessions at a discount.

I’ve only very rarely had spinning-sensation vertigo. I find it almost impossible to describe the feeling, other than saying my vestibular integrity is seriously compromised. It’s one of the ways that makes empathy from other people tricky. If you can’t explain it they think it can’t exist.

It exists!

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Thanks Justin! I greatly appreciate your story. I truly believe there is a strong connection from your cervical spine to your vestibular system. I’ve read a lot and done a lot of research too. Have you ever checked out the website called VEDA? www.vestibular.org. Super good info on there with vestibular migraines, cervogenic dizziness, ect. I saw 2 ENT doctors - one was a neuro-otologist and they both ruled out the ears. They both said that my issues were from my cervical spine. Neurologist, neuro-opthalmoligist and PCP all said vestibular migraines. I think I have both.

The question is…are the neck problems causing the migraines? I never had migraines growing up --ever. Never had motion intolerance or anything like that either, but I’ve ALWAYS had issues with my neck/shoulders on my right side and the imaging I’ve done- MRI’s, Xrays all show right sided cervical issues. C4-C5 and C5-C6 disc issues and bone spurs. For the past year I’ve also had issues on the right side- upper cervical just below my skull and below my ear. Almost feels like spasms in my neck- like you said bobble head feeling. Like an instability feeling and right ear pain that comes and goes.

I did get a soft cervical collar for my neck. It did help me. Please keep me posted about what you find out and thanks again for telling me your story! I appreciate it.

Awesome advice here. I think I went to the chiropractor WAY too long- a year! I do believe he was trying to help- but really didn’t know exactly what he was doing or how to treat me. I think providers don’t want to admit when they DON’T know something because it makes them look uneducated or dumb. I appreciate it when a doctor will tell me straight up- they don’t know or have the expertise in something. I’d rather honesty than giving me treatment that could cause more problems in the long run.

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Hi Erin,

Sounds suspiciously like VM to me. Sorry to hear you’re going through it. I agree the neck could be a trigger. The nerve involved in migraine that sits behind c1 and c2 (trigeminal) needs to be studied more. Any neck issues that irritate this nerve surely could be a cause. My 2 cents anyway.

Where is the research up to in regards to migraine? It’s a little disconcerting that the only thing I read is that no one knows why they happen.

Hope to read you’re recovering soon.

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I didn’t want to accept that I could possibly be having migraines with a vestibular component because I never had them before. I actually questioned the diagnosis several times. After reading a lot about them though and all the cervogenic dizziness stuff- there are similar symptoms and do believe I have them both. The neurologist I saw explained that because ive had chronic headaches over 10 plus years, they can eventually turn into migraines.

I am in agreement with you- they diagnose migraines but don’t know why they happen. The brain is complex. It seems like more and more people are getting vestibular issues and migraines. There is ALWAYS a root cause but doctors seem to just want to treat symptoms and not the root cause. I hate medications and am very reluctant to get on a migraine medication. So many side effects ive read. Makes me nervous! :unamused:

@Erin37 it certainly is a scary thought. But if your symptoms are not letting up, it’s something worth considering. I’ve read a lot of people on here wish they had started sooner as they were first a little nervous of the prospect,

I tried one I couldn’t tolerate, then another it was so much better.

You’re right, we need to start investing into the root cause of this, as getting that worked out will help in the types of medications we use.

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Yeah, it might well not be forever (I ended up taking them for just 1.5 years), but meds certainly can help you to get your life back. It’s always something you do on the balance of benefits.

In my case I saw an improvement within days and a total stop to my big horrific migraines. Don’t expect a silver bullet though: I had plenty of symptoms left.

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