No headache?

I’m still new to the site and the idea that I might have MAV. The one thing that still confuses me is that I really never get a “migraine” headache. As far as pain goes, I have tightness and tension in my head all the time and some days I have a light, dull headache, also some pain and ache in my neck, but never the pounding, throbbing horrendous pain that I always thought migraines brought. I would gladly keep the discomfort I have if only this lightheaded, sea sick feeling would go away. Anyway, I was just wondering how many people here have this condition that rarely or never get true “migraine” headaches.
I have an appt on Monday afternoon with a second ENT, nervous because I am already expecting him to dismiss me and my symptoms as Menieres when I really don’t believe that is what I have. I’ve written up a whole synopsis of my problems, symptoms, what makes me feel better or worse, I just hope he has enough compassion and bedside manner to take a look at it. Also planning on bringing a couple of the articles I got off this site. I’m pretty sure he will want to run the battery of balance tests, I am fine with them all except the calorics, had them when I was younger and want to try to avoid them. I guess my next move would be to make an appt with a neurologist.
Hope everyone out there is doing good tonight! Keep the faith folks, better days are coming for us all!!

It’s possible. A few people here started having MAV symptoms even though they never had headache activity before that. Some of these people started having other types of migraine symptoms such as aura after their MAV started.

It sounds like you have a history of dizziness if you had a caloric test as a child?

What are the things you mention that makes your symptoms worse?

Hi Cartnurse,

You bring up a very good point that we all must deal with frequently, and this what exactly is a “migraine headache”. Most out there – some doctors included – think it is solely a horrendous headache of the sort that keeps a person locked in a room for days on end vomiting and screaming with pain. It’s as if migraine used in this sense is an adjective synonymous with extreme pain. But while the scenario I described is a migraine headache, there is a whole spectrum of pain that can occur and it’s not isolated to the head either. It can be “light” head pain, simply a sore neck (migraine neck), a sore stomach, sore back or even sore joints. It’s best to use the most current definition and that is that migraine is a “global disturbance of sensory signal processing”. Sensory information –- sensations –- are distorted and/or intensified. Not all sensations are involved at any given time. The migraine spectrum may include pain, numbness, or tingling on the skin, motion intolerance and dizziness or vertigo, intolerance of light, sound, taste, or smell. While most of the symptoms are in the head and neck, other parts of the body may be affected.

Tension and tightness in your head or just a dull headache with neck pain is very migrainous. That’s the way I get it. I have never had a headache that was of the pounding one sided version that laid me out flat.

Re the caloric test. It might be worth getting another one if they ask just to rule it out for good but here’s what you need to remember for this: the ENG and VEMP tests are very crude and not particularly sensitive. Clear damage from VN will generally show up in such tests. The caloric test is very crude with a 30% variance still being classed as normal. Nobody gets a perfect zero response on a caloric. Just about everyone falls into the 10–20% range.

Glad you’re armed with the papers I put up on the forum, particulary the latest one written for GPs. Let me know if you have that one.

Good luck … Scott 8)

I have had this for 4 plus years and rarely get headaches!

Pam

Put me down for 4 years of dizziness and just an occasional dull headache.

Scott, rather than the papers I wish I could bring you with me to the doctor!
You’ve all been so helpful, thank you to all of you!

HI Ichbin,
Things that make me feel better:
night time, darker interiors, quiet environments, when I try to concentrate on relaxing my facial/head muscles, when I am lying down and supporting my head with pillows (lying flat is rough), When I keep my mind occupied by watching tv or on the internet (however fast movement on tv or scrolling sets me off).
Things that make me feel worse:
bright lights, loud noises, a lot of visual activity around me, traveling by car particularly after the car ride, weather/temperature changes are very rough on me, the winters are the worse, sitting still is very rough
Symptoms:ear tenderness and occassional pain, sound and light sensitivity, very motion sensitive (someone sitting down on the bed next to me feels like someone is jumping on the bed), occassional high pitched tinnitus, neckache, tension in my head, particularly forehead, jaw and right side of face, tingling on the crown of my head, feeling as if the top of my head is not attached to my body, sensitivity to odor, eyes out of focus/blurry at times, feeling of post nasal drip, brain fog, and the worst symptom of all is the lightheaded/seasick feeling.
Looking at these symptoms, boy I am a hot mess!!! I’m able to function because I have to function (job, friends) but I am miserable most of the time and really have curtailed my social life a lot.
Thanks for listening everyone, Keep calm and carry on!

Wow that sounds like a textbook case of MAV! The sensitivity to smell, light, and sound especially sound like migraine.

I very rarely get headaches, which is why I didn’t believe my diagnosis at first!

Oh i know it’s that much more frustrating to get an accurate diagnosis without the “classic” migraine headache involved. In the past year, I have been diagnosed with BPPV, cervicogenic dizziness, anxiety, and most recently, MDDS (mal de debarquement syndrome). Oh yes, and my neuro even said “could be Meniere’s”…
Each physician/therapist had logical reasons for believing it was whatever the diagnosis of the day was, but after a while it’s like c’mon!
But good job on doing your homework and coming prepared with all the resources handy. Before I really started researching MAV, I just assumed it meant big headaches, getting the spins alot, nausea, vomiting. Apparently, that’s not always the case.

— Begin quote from "alternaace"

Oh i know it’s that much more frustrating to get an accurate diagnosis without the “classic” migraine headache involved. In the past year, I have been diagnosed with BPPV, cervicogenic dizziness, anxiety, and most recently, MDDS (mal de debarquement syndrome). Oh yes, and my neuro even said “could be Meniere’s”…
Each physician/therapist had logical reasons for believing it was whatever the diagnosis of the day was, but after a while it’s like c’mon!
But good job on doing your homework and coming prepared with all the resources handy. Before I really started researching MAV, I just assumed it meant big headaches, getting the spins alot, nausea, vomiting. Apparently, that’s not always the case.

— End quote

Yup. Many of us (self included) have been on the misdiagnosis merry go round (all that spinning around is not fun either!). I reeeeeeeeealllly wish migraine and all its wacky symtoms were given more focus in medical schools, particularly for GPs. It affects over 10% of the population for heaven’s sake!

I’ve had my MAV for 5 years now and I very rarely get any headaches and when I do they are more like a tension headache.

— Begin quote from "Victoria"

Many of us (self included) have been on the misdiagnosis merry go round (all that spinning around is not fun either!). I reeeeeeeeealllly wish migraine and all its wacky symtoms were given more focus in medical schools, particularly for GPs.

— End quote

I wonder how many MAVers have been labeled as suffering from some sort of psychiatric disorder by doctors who were looking in the wrong direction and inevitably didn’t find a cause for the symptoms.

Ironically, once you get such a label then any attempts to educate the doctors get interpreted as evidence of an attitude problem arising from the specious psychiatric condition!

-Wexan

rarely headache here
count me in the group who confused migraine with headache till I read “Heal your Heacache”

I consider myself very fortunate for only being tested for the wrong stuff for a couple of months - I developed an increased awareness of my heartbeat, and along with tunnel vision (NOW I know that was aura) during a couple of severe dizzy spells, which made me think I was going to pass out - doc thought cardiac. So I had EKG, stress test, even holter moniter. Heart was fine, and of course I didn’t have a dizzy spell during any of the tests.

My first dizzy spell happened 3 years ago this month. Happy Dizzyversary to me.

By the time I went to urgent care after another tunnel vision + dizziness episode, followed by an extremely wiped out, tired spell the next day so bad that I couldn’t go to work (I actually stayed at work right after the dizziness and tunnel vision aura the day before), I luckily got referred to one of the neurotologists who co-wrote the e-medicine article on MAV. I got my diagnosis relatively quickly. He sent me to a neurologist for treatment. Then I found out that the sinus headaches I thought I’d been having most of my life weren’t sinus headaches after all.

Well, the new ENT is leaning towards a Perilymph Fistula, kind of poo poo’d the whole MAV, said it was the “flavor of the week”. I’m not so convinced. He wants me to have a “Lasix Test” done which I will do no problems. Any ideas or suggestions?

You got some great replies here and great info from Scott. Also a good point from Wexan about being labeled as a difficult patient if you try to really talk to your doctor in an educated way about something the doctor doesn’t know or care about.

Count me as another migraineur with negligible headaches. I VERY rarely get a real headache, and even then it’s never really severe.

Your symptoms sound like textbook MAV, as Darren pointed out!

I have never found a doctor who thought my dizziness was really related to migraines, but every single other one of their theories were disproved and I was NEVER given a diagnosis of anything. After they ruled out acoustic neuroma, perilymph fistula, MS, and AIED, they shrugged their shoulders. They all seem to think that if you don’t have severe headaches, you don’t have MAV. Get with the program, docs!! I have self-diagnosed myself, finally, after 12 years! :slight_smile:

Those classic horrible headaches have been used to define migraine erroneously because they are only one symptom that can occur and really those that do are a minority. Most experience these kinds of symptoms instead…

"Not only is the term “migraine” misleading when it’s used to designate one specific type of headache, but even the term “headache” is inadequate to cover the full spectrum of discomfort generated by the migraine mechanism. Discomfort may be felt anywhere in or around the face or neck as well as the head. Words such as “ache” and “pain” may not even begin to capture the discomfort you feel as a result of migraine.

Instead, in or around your head you may experience pressure, fullness, tightness, heaviness, thickness, numbness or soreness, or you may have swelling, burning, buzzing, vibrating, boring, piercing, drawing, expanding, tingling, trickling, bubbling, crawling, shifting, or rushing sensations. These sensations may be aggravated by bending over, straining, sneezing, coughing or exertion, or if you shake or jar your head.

You may have feelings suggestive more of lack of clarity than discomfort, such as cloudiness, dullness, fogginess, or fuzzy-headedness. Discomfort may be excrutiating, trivial, or anything inbetween…The severe headaches conventionally labeled “migraines” occupy a relatively narrow band at the far end of the spectrum."

“Neurological symptoms of migraine, including visual disturbances, dizziness, and many more, form a broad spectrum…symptoms vary extensively in degree and duration. Minutes-long is typical, but they may last split seconds, hours, or even longer - or even be constant for months or years…”

Heal Your Headache, by Dr. David Buchholz

Thanks Burd! Really good info from that book. I haven’t looked at it in a very long time. :slight_smile:

I had my first clanging nauseating three-four migraine headache about 16 months after first getting MAV. I sometimes get flashes of migranous head pain, but mostly I experience classic ‘sinus’ pain, though i have no actual sinus problems. At the moment, in this latest bout of MAV i’m having headache but it’s not constant, not debilitating and I don’t take anything. Now aura, well that’s something else again. Always the aura, the right-eye cross-eyed feeling and brainfog. Always wonderful to forget the name of a colleague i’ve worked alongside for five years, or even better use a name beginning with the same letter or having a similar sound, yet being oh so wrong. Still, it’s better than a headache.