Who actually gets migraine headache?

I would be interested to know the percentage of people with MAV that get the actual migraine headaches, aura etc… And those who do not with this dizziness. ( is there any way to do polls on this site ? )

Since the onset of this mav I have not had a migraine headache, although I have had stabbing ear pain ( which I believe is a migraine ) and a kind of pressure all over my head

Hi Richy,
I have constant vertigo, 24/7. It can vary in degree but it’s always, always there. Before all my vertigo started I began having migraine headaches for about a year. I don’t get aura, nor have I ever. I rarely ever got headaches until the birth of my second child. After that the migraines started then the vertigo. Now I get TONS of headaches. At least a slight one everyday and some major ones about 7 times a month. I have an unbelievable family history of migraine on both sides of my family. I had some migraines as a child then again a few in my 20’s but nothing like now (I’m 32).
I find is so interesting that some of us get headaches and some of us don’t. I wish I was one that did not as they are just as debilitating for me as the vertigo bc I get them so often.
I’m sorry, I have not read your most recent posts as I’ve been battling so many headaches lately, are you taking any meds now?

Oh, I also get ear pain (I call them ear migraines), popping of the ears, ringing of the ears and pressure. It’s mainly my right ear.

I have headaches every day. Some days I have to be in a dark room and my head hurts so badly, I don’t want to move it. I have for years and thought they were sinus headaches and found out that they were migraine from Dr. Baloh. I kind of figured they were migraine when I started reading the information on this site. I just started having the dizziness about a year ago and just got officially diagnosed with MAV this week by Dr. Baloh at UCLA.

Donna

So far I don’t think I’ve ever had what i would deem a migraine “headache” in terms of pain, but I’ve clearly had migraines, in that I feel like my brain is numb and almost like there is a tight band being pulled around my head. But I have almost no pain. When I do have pain, it is usually very mild–what I would classify as a typical headache for most people.

I suspect I’ve had these silent migraines for decades and the vertigo aspect just came on a year ago. My mother also had thses so called “silent” migraines and had predominantly visual triggers just like I do, so the genetic component matches up. She never suffered vertigo from them though, but maybe she never entered the chrnoic migrane state like I somehow did.

I was a migraine headache sufferer for years prior to getting MAV. I do not get any aura before the migraine. They are under good control now with meds, but I do still tend to get one a month.

It’s interesting that the majority of you still suffer with migraine headaches… Whereas I have not since this started… Very strange

Well, I think the majority of people with migraine present with pain. Something like 20-30% don’t have the pain part, but tend to feel the pressure you describe or some sort of head/brain numbness or have some sort of visual aura/distrubance. I don’t remember the actual numbers.

— Begin quote from “JamieH”

Well, I think the majority of people with migraine present with pain. Something like 20-30% don’t have the pain part, but tend to feel the pressure you describe or some sort of head/brain numbness or have some sort of visual aura/distrubance. I don’t remember the actual numbers.

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So each time I have the numbness or pressure that’s a migraine ?

I used to get full blown painful migraine that lasted for 3 days, have two days off, then another 3 day painful migraine (back of the head). Now I get almost daily mild headaches and occasionally a bad migraine. The bad vertigo attacks are usually before or after a bad migraine (no head pain with those at all). Some days, I just feel dizzy (no head pain). I had motion sickness as a child and what I now know is abdominal migraine (lots of low down stomach pain). I started getting zig zag aura in my teens. Dont remember any bad migraine following those then but later and now, they are always the warning that I will get a really bad painful migraine that lasts for days.

Christine

— Begin quote from “RichyF”

So each time I have the numbness or pressure that’s a migraine ?

— End quote

I’m not 100% clear on this. For me there seems to be two levels. There is one level of brain numbness/pressure that I can alleviate pretty easily by just getting away from the source of light that is bugging me. I don’t if know if that is an actual migraine or just the residual effects/sensitivity from previous chronic migraines. But there is another level where I can tell everthing is much worse than usual, where everything is bothering me more than it does on a normal day, where the head numbness and pressure is just worse. I’m pretty positive I’m having a migraine attack when that is happening.

So I can’t tell you for sure what you’re experiencing, but it wouldn’t surprise me if the numbness/pressure you feel is happening during migraine attacks. It has been shown that symptoms such as vertigo and light-sensitivity can be present even in-between the migraine attacks of chronic migrainers, so that could explain why you experience more or less constant symptoms.

What you would probably do if you were to medicate this as a migraine problem is to see if you the medication would give you a reduction in the number of times you felt the head numbness and pressure, and then see if that in turn led to a lessening in your dizziness/instability. Now, what I’m finding with the Topamax is that I’m still getting symptoms of head pressure reasonably often when I expose myself to my trigger of artificial light, but it isn’t being accompanied by the rocking sensation that I used to get and I don’t seem to be getting much brain fog with it. So I don’t’ know if that just means i’m less sensitive now or what, but it is a billion times more tolerable now than it was before.

— Begin quote from “JamieH”

— Begin quote from “RichyF”

So each time I have the numbness or pressure that’s a migraine ?

— End quote

What you would probably do if you were to medicate this as a migraine problem is to see if you the medication would give you a reduction in the number of times you felt the head numbness and pressure, and then see if that in turn led to a lessening in your dizziness/instability. Now, what I’m finding with the Topamax is that I’m still getting symptoms of head pressure reasonably often when I expose myself to my trigger of artificial light, but it isn’t being accompanied by the rocking sensation that I used to get and I don’t seem to be getting much brain fog with it. So I don’t’ know if that just means i’m less sensitive now or what, but it is a billion times more tolerable now than it was before.

— End quote

Is topamax a triptic or whatever they call it? Do you expect to stay on this for the rest of your life or is it a temporary measure?

Are you talking about the tricyclics? No, topamax is an anticonvulsant. It was originally developed as an epilepsy medication but was approved for use in migraines by the FDA after studies showed it was effective.

The trycyclics are anti-depressions medications like nortriptyline that have also shown to be effective at supressing migraines. I’m actually on nortriptyline now too, but I am going to try to get off of it soon. I don’t think it is having a major effect, though I do believe it was reducing my light sensitivity by a little bit before I added the topamax in. There is a possibility that they are working together, but it is more likely that the topamax is doing the majority of the work and the nortiptyline has just been along for the ride, since I didnt really notice much change from about 60mg to 150mg of Nortriptyline.

The trycyclics were the big anti-depressant drugs of their day, but they have been almost completely replaced by SSRI’s now. I suspect they probably get more off-label use in things like migraine prevention than they do in actually being used for depression.

I don’t know about temporary vs permanent on any of these things. Obviously I hope any treatment can be temporary, but at this point I just want to be able to live a normal life. If that means I have to swallow a few tiny pills a day to do so, so be it.

I had classic sick, one sided migraines from age 13 to 45. I was never dizzy with them. From age 19 I had vertigo attacks, once or twice a year that would put me in bed for 24 hours. After those episodes I would have what I always called a sinus headache for one week plus general dizziness particularly upon turning my head. At 45 the pattern changed after a bout of labrynthitis (that started exactly as every other vertigo attack had) when the dizziness became 24/7.

Since starting the migraine diet I have only had one classic migraine, and that was the night before a major operation, so no doubt was down to stress. I do still have a constant heavy head though - can’t remember what a normal head feels like. I get a lot of face ache too, which I always used to put down to sinus issues but I now think that’s migraine related also. I’m always aware that I have a head, if you know, what I mean - not bad enough to use the term headache as we know it but I guess really that’s really what it is, like a low grade headache.

I’ve only had an aura once, many years ago, quite out of the blue, lasted for about half an hour but I’ve never had another. I too have stabbing ear pain, like ice pick pain, which I call a migraine in my ear! I only get that occasionally.

Brenda

I am always dizzy and sometimes have migraines. I know what triggers the actual migraine tho. For me it is mostly food and hormones.
Sarah

I have had migraines most of my life (although I didn’t really realize that the ones I thought were sinus were actually migraine). I would get an aura of dizziness and ringing in the ear and then the headache. After being diagnosed with the MAV a year ago my headaches increased to chronic status and aren’t as bad since I’ve been on the diet and lifestyle changes. Family history of migraine also.

— Begin quote from “teddypan”

I have had migraines most of my life (although I didn’t really realize that the ones I thought were sinus were actually migraine). I would get an aura of dizziness and ringing in the ear and then the headache. After being diagnosed with the MAV a year ago my headaches increased to chronic status and aren’t as bad since I’ve been on the diet and lifestyle changes. Family history of migraine also.

— End quote

Has your mav also died down since the diet and lifestyle changes?

Yes, the dizziness has improved but still is present unfortunately. I’m also dealing with some heart arrhythmia issues that the neuro-otologist believes is complicating things. I still have ear pressure and fullness at times with the dizziness but it is not nearly as bad as it was. I have weather and hormonal triggers that I can’t do anything about. I have tried two meds but couldn’t get up to a really good dose. Don’t really want to do that until the heart stuff is cleared up/diagnosed as I may be able to use one medication to kill two things with one stone :smiley:

Hi,
I’ve only ever had the constant 24/7 dizziness, and no actual headaches (at least, no bad migraine headaches), during the 3 3/4 years that I’ve had this. The consultant I’m with says that he’s never had a patient whom he cannot get to feel better, and then come off the meds and remain feeling better!! We’ll see…
Best wishes,
Tony.

I have 24/7 dizziness, but rarely the headaches. If I do get one, it’s usually due to the weather, or having a lot of triggers at once (for instance, the sun’s shining in my eyes,I’ve hardly eaten that day, and I’m really stressed out).