I appreciate in advance anyone who can offer me some insight. On Mother’s Day of this year while driving on the highway (no traffic), I became really dizzy. It was a feeling like I was on a slow moving ride with a little lightheadedness. I said “Whoa” and it passed and I asked my husband if I had swerved the car. I hadn’t and I thought perhaps I just had low blood sugar. I had a little anxiety afterward, but not much. I got a headache again later that day.
Then at the end of June, the same thing happened while driving on my way to work. That morning I had a migrane. I took some pain meds and the headache slowly subsided (but wasn’t gone completely). I got a weird pain in the back of my head behind my ear and reached up to rub it and the dizziness hit again. I felt like I should be on a rollercoaster going backwards and upside down at the same time. This time it lasted a lot longer (still less than a minute) but I got hot and cold at the same time and really shaky. At first I thought my car had a CM leak or something. Then I thought I was having a stroke or annuerism. And the anxiety afterwards was horrible. I ended up going to ER and they said Vertigo and Anxiety and to follow up with my Primary Care.
In between these episodes- once when I woke up I was very dizzy, I stumbled to the bathroom and by the time I was in the bathroom the dizziness was gone. And once while walking into my car I got dizzy and stumbled like I was drunk. Again, it only lasted seconds.
Well after the June episode, I went to my Primary Care doctor who said what I was describing was not vertigo. When she saw me she couldn’t create nystagmus–But I wan’t having spinning dizzy at this point. However, I was having a feeling like I was on a boat or that I was being pushed And I have ringing in my ears, mufflness, and pain. She sent me for an MRI. The MRI was clean except white matter that was “indicative of migraine” and an “promienent cisterna magna” (which was confused with an arachnoid cyst). I was sent to a Nuerosurgeon becuase of the possible cyst. He told me I was born with this “prominent cisterna magna aka arachnoid cyst” and that he was 99.9999999999% that there was no way it was causing my symptoms. He said I had BPPV and sent me to a Nuerologist. The Nuerologist as well agreed that it was BPPV and sent me to a physical therapist for the Epley Manuever if it ever happened again. Well the Physical Therapsist couldn’t recreate the dizziness and/or nystagmus and therefore said it’s not BPPV and will not do the epley Manuaver. She sent me to an ENT.
The ENT’s response… “you need Jesus in your life”. He had no answer for what could be going on… other than I need Jesus in my life!!! I asked if this could be a migraine and he said no becuase my headaches don’t last 3 days and I don’t have a visual aura. He also said-if it were possible to have vertigo with a migraine it would last more than a few seconds. I asked him if it could be Minere’s and he said no because I don’t have hearing loss and I’m not dizzy enough. Then he proceeded to pray out loud for me. He then said, I don’t really know why you are worried, you know it’s nothing life threatening.
I’m at my wits end. I’m getting the run around, and no body is able to tell me what is going on. I constantly feel like I’m walking on a boat or a deck (and I haven’t been on any boats in my life!). Not to mention the sporadic dizzy/vertigo/lightheaded spells. The doctors can’t even agree if it’s vertigo. I’m depressed and worried and this is ruining my relationships. I’m trying to get over and not focus on it- but I am scared. I don’t have any answer what this could be.
I am sorry you had such terrible luck with doctors…believe me, I have been through that, too; except, one of mine would not believe I even had migraines, just high blood pressure( and they did not even take my blood pressure that day). He based this on past history; needless to say, I did not see him again. I know exactly how you feel and i feel like I am always on a boat, in various degrees or a swaying feeling or rocking. This is a common mav presentation, I believe. I just wanted you to know you are not alone. I am still trying to get better too. Be sure you read survival tips section on this forum…it really helped me feel justified in my symptoms.
I’m sorry you got the runaround and the extremely unprofessional ENT who felt Jesus would solve your problems.
It is YOU who has to solve your problems, and you need to start by getting yourself to a doctor who’s knowledgeable about dizziness and migraine and their connection. Obviously that’s none of the docs you’ve seen yet.
You need to see a NEURO-OTOLOGIST (ENT with special training in the inner ear and its connections to the brain) and/or an OTO-NEUROLOGIST (a neurologist with special training in the inner ear and its connections to the brain). Sometimes, depending on what they find, a neuro-otologist (commonly spelled neurotologist) will refer the patient to an otoneurologist or vice versa.
Someone here might be able to give you a recommendation. Where do you live?
Check out this thread on the forum here, for info on migraine/dizzy doctors around the world:
Thank you for replies. The ENT I saw actually was a Nuero-otologist. I guess that’s not really an ENT. Sorry about that.
Can you have MAV and only have vertigo for a 30 seconds or so? Also, is it possible I have BPPV that just randomly comes and goes and I can’t seem to recreate? There was only one time where I noticeably had my head turned to the left that I got dizzy.
Last question… is it veritgo if I feel like I’m falling feet over head or like I’m on a roller coaster that is going upside down? Because one doctor said that wasn’t even vertigo? I’m so confused!
I looked at some of the articles and they were very helpful. But it still seems like your dizziness/vertigo needs to last at least a minute for it to be MAV?
Hey Dizzybreezy the second most common symptom for migraine after headache is in fact dizziness. Unfortunately you have had to go through the same ordeal of seeing useless doctors along the way like many of us on here. I was diagnosed with chronic migraine in July after suffering since March and some of your symptoms are similar to mine. I also used to experience a rocking type of dizziness or bobbing feeling like on a boat. I also used to get momentary vertigo before a headache where I would lose the whole room and become disorientated which didn’t last very long at all maybe a couple of seconds. Remember you are entitled to a second opinion, I would try and see a neurologist who specialised in migraine or a headache specilaist if I where you. Go armed with some information from other specialists to back up what your saying. There’s lots of info on the audio, video and presentations section as well as the science based research section on the dizzy side of migraine.
Vertigo lasting only seconds sounds awfully short to be migraine related, but I am no specialist. Have you been evaluated for any other causes of dizziness? For example, heart issues can cause dizziness too. What about an EEG for seizures? It sounds like you have ended up with some… “interesting” doctors and really need someone who will work with you to rule out some causes. http://www.dizziness-and-balance.com/resources/courses/barrow%202006/hain%201a%20history%201-2006.pdf is meant for practitioners, but is good for us patients in that it helps guide us to think through our symptoms and patterns. Do you keep a diary of your symptoms and the circumstances they happen in? If not, it might be something helpful for both you and the next doctor you see.
Julia and DizzyForLife gave you some great advice.
I would just add that BPPV can indeed come and go. I read a dizziness forum (actually a mailing list) for many years where a professional in vestibular testing always told us that BPPV can “hide”–that it often can’t be evoked in the doctor’s office, but that doesn’t mean you don’t have it.
That said, it doesn’t sound terribly suspicious for BPPV, since yours doesn’t seem to be closely associated with certain typical head motions such as turning over in bed, looking up, or tipping your head to one certain side.
People can have BPPV and migraine both, or BPPV and any other dizziness condition.
I agree you really need to see another specialist! Even if the one you saw was a neurotologist, it sounds like he was a real dud.
Also, be aware that it really doesn’t matter whether your symptoms are labeled “vertigo” or not. Vertigo is just a DESCRIPTION; it is NOT a diagnosis and it isn’t a scientifically defined term–people use the word to mean different things, just like “dizziness” can mean different things. So don’t worry about whether you have “vertigo” or not. You certainly have symptoms indicating something wrong with your inner ear or brain, so when you go to the doctor, don’t focus on whether it’s called “vertigo” or not–just describe how your symptoms feel, describe what happens. In fact, try to avoid using the words “vertigo” and “dizziness” at all when describing your symptoms to the doctor, because by themselves they really don’t mean anything.
Oh, and if you have dizziness (whatever that term means to you, or anyone!) AND you are a migraineur–even if you don’t get a headache at the same time as the dizziness, or even if you don’t get a headache at all–the chances that you have VM (or MAV, same thing) are no doubt much higher!
Thank you again. It seems like it might happen positionally. When I was walking to my car I was looking down at my phone. When I woke up I most likely did roll over and then woke up. And once when I got it (not as bad while driving)- I was working at my desk and tilted my head to start writing on an invoice. But I had my head tilted for a few seconds before it started. Also sometimes while working on my computer when I scroll the screen down I get dizzy (definitly looks like the screen starts dancing around). Plus when all this happens I either have, had, or get a headach. And I have weird sensations in my ears (popping, clicking, fullness, ringing, suddenly go muffled for a couple of minutes). Surely that’s not cardiac right?
I’m sorry I have such bad anxiety and I’m freaking out that the doctors aren’t looking in the right place. Of course the neurologist won’t call me back… I just called again.
Thank you again. It seems like it might happen positionally. When I was walking to my car I was looking down at my phone. When I woke up I most likely did roll over and then woke up. And once when I got it (not as bad while driving)- I was working at my desk and tilted my head to start writing on an invoice. But I had my head tilted for a few seconds before it started. Also sometimes while working on my computer when I scroll the screen down I get dizzy (definitly looks like the screen starts dancing around). Plus when all this happens I either have, had, or get a headach. And I have weird sensations in my ears (popping, clicking, fullness, ringing, suddenly go muffled for a couple of minutes). Surely that’s not cardiac right?
I’m sorry I have such bad anxiety and I’m freaking out that the doctors aren’t looking in the right place. Of course the neurologist won’t call me back… I just called again.
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If your doctor or an assistant is not returning your calls within a few days, that is just another reason to get someone else IMO. I don’t know how flexible your insurance carrier is, but usually there is more than one option for specialists. Get word of mouth referrals from someone you trust, if possible. That’s at least better than throwing darts at the phone book.
