My doctors, shrinks, therapists etc all have slightly different opinions on what is making me feel this way. These range from a vestibular disorder caused by a migraine, to BPPV, to just plain ol' anxiety.
October last year I had what was supposedly a migraine (my first known migraine) which included an aura that lost me vision in my right eye and my fingers growing numb and cold. I'm not sure if I've been having migraines since though but if i have been, they haven't been very severe. Since then I've had a nonstop dizziness (11 months of it).
On the side of the anxiety argument is the fact that I've had a couple of panic attacks though that was when all of this was new to me and highly stressful and anxious situations make my dizziness all the more noticeable. I also was experiencing chest pains a lot.
On the side of a dental disorder, one of my adult canine teeth is growing sideways across the top of my mouth which apparently can cause problems (Somehow).
On the side of BPPV, I do find it a lot WORSE when my head is in motion (though i feel it all the time). Though it doesn't seem to be responding to the exercises i was given and from what I've read, BPPV doesn't last 11 months and isn't noticeable when the head is completely still.
My dizziness is not the kind that makes the room spin. It makes me feel off balance especially when i move my head.
Some things i'm not sure are factors are my neck constantly being stiff, headaches that last up to weeks at a time, a feeling off fullness or pressure in my whole head, nausea that seems to follow no pattern and just comes and goes at it pleases.
I would really appreciate anyone letting me know if this sounds all too familiar to yourself and what you know about what I'm going through because no one else seems to.
Thank you.
Hi Korcy, many disturbances to the balance system are accompanied by a stiff neck and nausea, simply because the various elements of the system aren't able to sync with one another, so I wouldn't read too much into these two symptoms. However it's important (although sometimes difficult) to describe your symptoms as accurately as possible in order to get to a diagnosis, so if you could do that it would help. Also importantly, does your sensation actually make you less stable on your feet, i.e can you stand on one leg with your eyes closed and manage to stay relatively still? And does close work on a smart phone, tablet etc make your head swim?
BPPV shouldn't last this long. I was initially diagnosed with this in he hospital. I was told it could last a couple weeks. I ended up back in the hospital with severe vertigo headaches, throwing up violently, I saw the floor on the wall. I was then diagnosed with vestibular nueritis. Months later after seeing ENT and Nuero- I kept being told I would get better, I was getting worse even though I was doing vestibular exercises with PT- I asked to try treatment for Vestibular migraines. I researched this- no doctor mentioned it to me. I told my doctors my right hand was numb. They were clueless, I have read that with vestibular migraines it's a symptom with the aura. I was prescribed nuerotriptiline. And a beta blocker. I had immediate relief. I agree you can have anxiety-going into stores or in crowds with people surrounding me caused me anxiety or just being nervous-I never had this before-I was always pretty normal with no anxiety. I had catsans MRIs ect. It sounds possible that you could have vestibular migraines. If you read about it-you can have vertigo or just regular dizzy with no symptoms of a headache but actually have one. If you aren't seeing doctors that specialize in Vestibular issues- you should. Ask your doctors to try to treat you for this to see if it helps. My hand hasn't been numb since I started the meds. I am also taking magnesium. My doctor says lots of people with migraines take this- it seems to be helping. I still get a little dizzy here and there- but I rarely need mecclizine anymore. I had terrible brain fog- was confused for months and I started to realize I had been having headaches-terrible ones behind my eye. I still have trouble in the stores or a passenger in a car- but ok driving myself. Seriously try to find a doctor Nuero and ENT that specialize in Vestibular disorders. And ask for treatment for migraines to see if it works- I had to advocate for myself the entire time. If I didn't- I would still be sitting in a fog not living my life at all. It's sounds very possible it's Vestibular migraines.
So my dizziness is completely in my head. I feel what i can only call a lag when i turn my head quickly. It's incredibly hard to explain. When my head is still it's even more hard to explain. I know that something is off but i can't place my finger on it. My head will feel full of pressure and heavy. If i have my phone to close to my face it does make me feel a bit dizzy but not until i look away.
For some reason the computer that i use at my work makes me incredibly dizzy. The reason for that is hard to pin point. It could be the type of monitor, the fact that I had my migraine there and i'm associating work with illness, the lightning of the room i'm working in (its a darker room because i edit photos and need a consistent lighting with no glare).
My feet are completely stable. I've never worried about falling over because of my dizziness however in complete darkness I feel very unstable and cannot walk in a straight line or without leaning on a wall.
Wow. you're symptoms seem to dwarf mine. I do find it interesting that you have a hard time being a passenger in a car but not while driving yourself. That's something i can relate to and can only guess as to why. I have a hard to believing that this is something caused by anxiety alone as it happens from the moment i wake until i sleep, whether i be happy, sad, angry or just apathetic, it's always there. That and the fact that it all started with a migraine kind of keeps bringing me back to the fact that it is likely migraine related. I'm definately going to ask my doctor about some medication specifically for migraines as opposed to all the prozac and zoloft they keep shoving down my throat.
What I learned is they treat this with norotriptiline or amatriptoline and with a beta blocker blood pressure med too. I have read a lot of people here being told it's anxiety. No it's not. I too was dizzy all the time. Looking up down sideways. This dizziness was all the time- plus I had to vertigo spells where the world had tilted and I was violently ill. I first was given antibiotics in the hospital for sinusitis. Then when I returned and was admitted for days- they gave me steroids for a diagnosis of vestibular nueritis. They kept moving the timeline of when I would get better. I couldn't take care of my child, work, had a hard time speaking too. This is when I had confusion and brain fog. My PCP knows nothing about this at all. The Nuero initially saw and treated me in the hospital said I might be permanently disabled. She didn't try to help me at all. This is what kicked me into high gear of researching myself. I now have an appointment on the 24th with the director of the vestibular clinic in my major city. So if you aren't being taken seriously, keep seeing new doctors until someone helps you. The ENT was so angry at what the Nuero said she prescribed me the nuetripline and got me an appointment with this vestibular expert. She was very concerned about my numb hand. But when I researched vestibular migraines-one website had it as a symptom. Numb hand or extremity. I couldn't believe it. That is the aura. And it says you may get dizzy vertigo ect with vestibular migraines with no headache pain. I feel so much better. I still have a little ways to go. I want to be able to grocery shop and drive in the passenger side and not feel anxious when people are walking behind me. This is new to me. I have never had anxiety and I knew it wasn't that. Just know myself. Do you have physical therapists in your area that specialize in Vestibular disorders?? I have one and mine told me not many do. But it was very helpful. Now that I can do the exercises-we are now working on doing them with my eyes closed. When I started I couldn't follow simple instructions because of the confusion. The neortripline has helped so much so I know this is it for me. I have come to terms that I will have to be on this forever probably. I'm ok with it -because the alternative was much worse. I have read people on here for years with being dizzy, vertigo, brain fog and being told it will go away eventually. I am 4 months into this now. 1 month on the meds and people have told me I am acting myself again. Ask your doctor- if they say no- ask why? How can it hurt- you are sick, have no life- with no end to this. It can't hurt to try- what if it works??
LOOk up the symptoms for Vestibular migraines on webmd.com
this helped me so much. How can I find this and doctors are stumped? I had every symptom listed. If family members have a history of migraines you need to know. So ask your family-apparently it's important info- I asked and do have immediate family members that have them. I had migraines when I was pregnant. And was treated for this. I guess I've had them for a while but have ignored it and taken Motrin or Tylenol and pushed thru. I now can see that I've had them for a while.
Hi, I’m sorry to hear that you going through a lot. I have similar symptoms to yours but started 4 weeks ago and like I’m living in hell. Night and morning is worse for me, dizziness, vomiting and blurred vision, loosing balance. I feel pressure in my head and eyes, right side of my neck is stiff and when I turn my head to right it is making worse all the symptoms. I can’t sleep well since dizziness started, several times I wake from numbness in my hands and really fast heartbeat then all symptoms back. Nausea becoming my worst friend.
I have seen ENT, physio, GP but not neurologist. Waiting for the MRI scan, as my blood test came clear, CT also clear.
I have given betaserk but ENT warned that it won’t work straightaway. Procloperazine is not helpful at all.
ENT thinks I’m having labyrinthitis, GP said- BPPV, physio- neck problem.
You are not alone, I do understand your feelings.
Sometimes I don’t know where to turn to help myself. I can’t drive at the moment, I shopping, school run, cook. etc.
Wishing you to soonest recovery. God bless you.Xx
Hello get a neck/head mri to rule out anything else. If that comes clear, it may just be vestibluar related. Amd stress makes it 10x worse. I have a bit of spinal stenosis in my neck which makes my headaches bad. I go to physio for that and it helps. I dot have the spinning vertigo either, just swaying type. I don't think it's bppv from how your explaining your symptoms.
If mri is clear, get referred to a dizzy clinic. They specialize in these thjngs. Reg docs don't know much. I've been dealing woth it since march.
On first read your symptoms sound very similar to mine, and having spent quite a few hours going through discussion threads on this site, I've found on examination that symptoms people describe are often vastly different to each other, so it's important to be accurate when making comparisons, as a spurious connection will waste hours of fruitless reading, a bit like social media! I'm now 14 months ih and have undergone all the tests the NHS has to offer apart from the Rotary Chair, which they don't appear to use in my area.
Here's how I describe what I'm experiencing:
I'd describe it my dizziness as a kind of headrush, like an exaggerated sense of movement, predominantly while I'm moving around, although as it's progressed I've begun to feel it regularly when I'm sitting or lying still as a strong swimming sensation inside my head, as if my brain's adjusting its position inside my head. It's easily visually triggered, so my head will swim when I'm working with something directly in front of me; so I find it difficult to read, write, use a smartphone, tablet or P.C, and washing up is a bit of a killer. Although the condition has worsened steadily over the last 12 months it has never made me feel unsteady on my feet, but because it's balance related, I experience frequent nausea and on bad days all I can do is sit still and try to move around as little as possible."
If this sounds similar to what you're getting we should talk more because so far I've only found two peope whose symptoms I can make a direct comparison with and one of them stopped posting 2 years ago.
I'm guessing you're in the U.K, whereabouts are you located?
I forgot to mention. I've had my brain MRI and neck and chest xray, Cervical spine CT. nothing out of the ordinary. which is both good and bad news i suppose. ill have to research 'dizzy clinics' i havent heard of them before..
I'm sure there are some doctors in my area that specialize specifically in vestibular disorders. My doctor suggested i go to see a neurologist however they aren't cheap and due to the nature of my dizziness I've had to take more time of work that i'd like to.
I would say, just based on what you've described whatever we have is likely the same condition or very similar. I do however have a laundry listen of other symptoms that you did not mention however it's hard to say how many of those are related.
My frequent headaches are likely due to my neck pain which itself is probably due to bad posture.
My chest pain is likely due to IBS and since i've eliminated certain foods and started chewing gum regularly it has all but vanished.
But as you described "an exaggerated sense of movement" kind of hits the nail on the head. My symptoms though haven't followed a steady pattern of getting worse. They tend to come in waves of about 2 weeks or so at a time. 2 weeks of intense dizziness that might be followed by a week or 2 of more manageable or even hardly noticeable dizziness.
I am however not in the U.K.
I live in Brisbane, Australia.
Damn! I was hoping you were in Birmingham, would’ve made things a bit easier.
I’ve seen ENT and neuro consultants as well as balance physios and none of them are particularly familiar with my set of symptoms, as my balance hasn’t been affected and my vestibular tests have come back pretty much A1.
Very interested to hear you’ve been chewing gum. I noticed a while back that my symptoms all but vanished while I was eating so I started chewing gum and the same thing happens, and The effect is almost immediate. Have you noticed anything similar.
Also, from my experience I’ve been told by several consultants that there are many conditions related to dizziness and balance that doctors simply aren’t able to diagnose, but because they need to manage their patients’ ‘journeys’ they tent to pidgeonhole people presenting with symptoms they can’t explain with anxiety or vestibular migraine. Thankfully I’ve been taken seriously during my investigations and I’ve only had one professional attempt to put my symptoms down to anxiety. I am anxious of course, but only because I’m feeling so unbelievably crap all the time!
Korcy,
I have a near identical experience. Mine also stemmed from a “migraine” in which my arm went numb and I lost significant vision. I also have the same dizziness that does not ever reach a zero point. I’ve had mine for almost 3 years and have been all over the country in search of answers. Best I’ve found is there is no diagnosis. This was very difficult for me, but I’ve come to appreciate it as I have no “pre-existing condition” that can limit my insurance in any way or heighten my dues. The most significant improvement I’ve found is by very strictly following an anti-inflammatory elimination protocol diet. (You can google it or there are books - it has seriously changed my life) Through this I’ve found that certain foods (for me rice and soy and some others) really make it worse as they inflame my body, creating the neck pain and attack cycle. When I feel a bad “attack” I take 2 Advil, a Claritin and two shots of espresso. It seems to really lighten the attack for me. Ive also found relief through balance therapy with a PT and regular exercise. I chose horse back riding as I can still do it when I’m off balance and is great core work which I desperately need after years of being sick. I hope this helps you as it appears we have very similar symptoms.
I have suffered from 24/7 vertigo for 16 months. Went to ten specialists. One finally connected my painful stiff neck to Cervical Vertigo. I was recently diagnosed with Bow Hunter’s Syndrome, where my vertebral arteries are obstructed, causing a lack of blood flow to my brain. With this disorder, the dizziness is worse when you turn your head. Have you had any imaging done?
Hi Janet, sorry to hear you’ve been dealing with this for so long. I thought that my symptoms may be due to an arterial problem in my neck but a contrast mri scan ruled it out. Is this how you were diagnosed?
Hi Brian. Mine did not show up on my MRI or MRA. I had an angiogram of the arteries in my neck. My neck was manipulated during the procedure, which produced dizziness and showed how the right and left vertebral arteries are obstructed. I’m scheduled for surgery. Do some research on BHS and go to the best neurosurgeon you can find.
Hi Janet, thanks for responding and wow that’s scary! But it sounds like you’ve made sure you’re getting the best possible treatment, so I’m sure your op will be a success!
I’ve read that a dynamic arterial constriction is unlikely to show up on a resting MRI unless the head is moved into a certain position, so I was a little sceptical when they ruled it out for me after one MRI.
I’d be really grateful if you could describe your dizziness, as it’s probably different to that experienced by someone who has a vestibular disfunction, and mine certainly doesn’t fall into the spinning room/floating horizon/walking on cotton wool categories.
also would you mind saying where you’re based, as this will obviously have a massive impact on the way a certain set of symptoms is investigated. I’m in the U.K and consultants here don’t generally appear to even acknowledge the existence of VBI, let alone investigate something as potentially rare as Bowhunter’s Syndrome. Thanks again for getting back.