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Are you all actual migraine sufferers?

Hey guys

I have noticed that since being on this board a lot of people have ‘triggers’ & seem to have proper migraines. Have you had this since childhood?

I dont think I have ever had a migraine - I get a lot of headaches & feel like I constantly have the flu (heavy head, tired eyes, sore neck) & am of course dizzy with really ‘off’ un focused vision. I also feel like I’m moving inside when I sit down with some imbalance (but never fall over).

This is what has always confused me - apparently I have suddenly developed into a migraineur. I know you dont have to have migraines to have MAV, but I still find it strange that I devleoped this condition.

Thoughts welcome.

The Rascal (currently fighting a week of hellish symptoms)

My “migraine headaches” did not start til I was in my thirties. I had never had the condition prior to that time.

These additional symptoms did not show up until a year ago. But my headaches had become more frequent and more excruciating within the few years prior to that. I was put on an abortive medication about four years ago and it got to the point I was taking it anywhere from 4 to 5 times a week.

However, my father has suffered from this for as long as I can remember and one has to wonder if there is not a gene that makes us more prone to this condition.

None of my siblings have this condition.

1 Like

I’ve been a migraineur since my early 20’s and a huge family history of migraine and dizziness.

I think Joe has had no history of migraine with aura, although he was diagnosed with silent migraine by Baloh, am I right Joe?

Julie

Your right Julie…i’ve never in my life experienced an Aura or excruchiating migraine. I get the run of the mill head ache on occasion…but what i have 24/7 is motion…pultzing and with motion bobbing/swaying around in my head plus i can also feel tension …and again ALL felt mostly in the head. This is sopposingly a Silent Migraine with dizzy symptoms rather than painful symptoms per Dr. Robert Baloh. The motion swells to a point where if i am talking to my supervisor or co-workers anxiety can overwhelm me cause the motion is so bad and i feel like i’m going in a panic because it feel’s like i’m fishing on a boat in choppy seas. I try to keep a straight face…but sometimes i have to politely excuse myself.

Joe

Hey Rascal,

I’m like you. Never had a severe migraine as outlined by the IHS. They describe one-sided throbbing pain, extreme light sensitivity (hence the dark room) and vomiting. Never had anything close to that. Mine appears as tension-type headache (as does yours by the sounds of it). Neck pain, equal-sided head pain that does not throb. My headache is more about reffered pain from the neck. Do you find that?

Yesterday for example, I really fell off the food wagon because of Christmas stuff – had a chocolate brownie in the morning, some coffee, then a Thai dinner followed by one small glass of beer at a party. I went to bed late feeling pretty bad and woke today with a seriously stiff neck and circles under my eyes. I can’t turn my head to the right without it pulling right down to the shoulder blades. If I eat migraine-proof food today it will vanish tomorrow.

I now know I’ve had these food reactions but to a much lesser extent since highschool. Back then it might have left me with a slightly foggy head the next day but I had no idea why.

Scott 8)

Hi

I’ve never had a ‘traditional’ migraine as described by the IHS either. Also, I never suffered from any other MAV symptoms until I suddenly became ill a little over a year ago.

Becky

I had abdominal pain every time I was stressed as a child, probably abdominal migraine. I had car sickness a lot, then in my teens, I got th zig zag lights no headache, then in my thirties bad 3 day migraines, like Scott, coming from the neck up the back of the head, also temple pressure and neuralgia etc.
Christine

Never had a migraine in my life in the traditional sense. My mother started getting her migraines (“normal”) when she was 20-21 (im 21) and they could last up to three days for her. Other parts of the family on that side have had it worse. Neither my mom nor my aunt have migraines anymore.

However Im not sure I have mav, it could be mdds. But some things I experience seem more common among you guys than the mddsers. I dont seem to get “triggered” by foods, maybe a little if I eat crapfoods and too much sugar, but I feel more sensitive to loud/high-pitched sounds now. No photophobia.

Ive gotten a few really bad headaches since this started; heyre not always onesided, but present themselves as severe throbbing (which I ofen have anyways, but now acccompanied by pain) in the head.

Mikael

Surprisingly, I never had a true migraine until I started the preventatives. I have had both silent and painful migraines, only once or twice have I had an actual ‘classic’ migraine. Before the meds, I had some nasty headaches that were near migraine strength, but lacking the other symptoms of migraines. I even had a few as a child where I hid from the light because it added to the pain. Now light adds to the pain and shimmers. The one thing that the docs (except for the ENT’s :lol: ) always jump at is the fact that I can say that I have always had headaches and that there have been periods where they were frequent. Two different nuerologists told me this was enough to classify as migraine even though they weren’t as strong as migraine or had all the symptoms.

Yes I’ve had migraine since I was 15 , but only ever a couple of timesa a year.
the migraine could last for days.

jen

I have had what may or may not be migraines since second grade. Very severe headaches that limit what I can do, lasting 4-5 days. They do not fit the classic definition of migraine though, as they aren’t throbbing and aren’t one sided. However they are distinct in that they are totally different feeling than my other routine day to day headaches or my carsick headaches. One doctor (PCP) said they aren’t migraines and another(neurologist) said they are, in fact the one I went to him for he said it was a status migrainosis (probably spelled wrong) because of the length of time I had it. Probably Dr. Heal Your Headache would classify mine as a migraine since it definitely limits what I can do when I have one. I’ve never had an aura. They do not happen often, maybe one every 3-4 years at the most, and my last was about 5 or 6 years ago except I did get one during one of my vertigo spells earlier this year, it wasn’t as bad as the ones I used to get but it had the same feeling to it.

I used to get a normal run-of-the-mill headache now and again like any other person, but nothing crazy growing up. NEVER a migraine. Then, I crashed in January 08. No headaches for the first 3 months, then suddently I would have generalized headaches every day, but again, no migraines. Then they started to change, where they could be classified as such, with the one-sided pain and all, but not at the level of a true migraine sufferer. The topamax killed all of that 100%. But it makes me wonder what i really have sometimes even though I know this is migraine. I feel fortunate not to have all the pain along with this dizzy junk, but the dizzies are no great pleasure either as you know. Thankfully the topamax has me at a decent level but I could use that extra 10% :slight_smile:

Rich

Rascal said:

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I dont think I have ever had a migraine - I get a lot of headaches & feel like I constantly have the flu (heavy head, tired eyes, sore neck) & am of course dizzy with really ‘off’ un focused vision. I also feel like I’m moving inside when I sit down with some imbalance (but never fall over).

— End quote

The vision problem that you are having, is it like double vision, do objects bounce up and down or left to right at times, how would you describe it? Also, your imbalance, is it as if you are walking like a drunk sometimes?

I went though exactly what you are describing, in addition to vertigo spins, head fog, and a rocking sensation from time to time. When I was finally tested at The Cleveland Clinic Research Hospital, they discovered I had toxic poisoning (ototoxicity). This causes damage to your balance system, usually it destroys all of it, I was one of the lucky few who had 19% remaining. But, if you are going through what I went through it is extremely debilitating and very frightening. An ENT usually determines if you have a vestibular problem. I also have migraines and vertigo, and vertigo is NOT part of ototoxicity, so if you do not have vertigo, that is more typical for vestibular or balance system loss. I am simply a rare case - not lucky for me. From what I have been reading from other postings on this site, many people with migraines have similar symptoms, so you may want to see both a neurologist and an ENT :slight_smile:

If this continues, get help as soon as you can, because the right medication can really help you - there is hope for relief!

Karen

Hi Karen -

How is Ototoxicity diagnosed? What kind of testing did Cleveland run on you to come to that diagnosis?? Do you have any idea what caused it?
Sorry for so many questions, I don’t know much about it, but I’m curious about that condition overlapping MAV - I don’t think I’ve ever heard anyone mention it.

Thanks-
Kim

if youve had ototoxity, would an ent with dizziness as an interest recognize that? Ive done various of manual tests by different gps and 1 ent, and not even all of them seemed to think my problems were even real…

  • Mikael

My limited knowledge on the subject of ototoxicity: usually bilateral (both ears), I think, and shows up on tests like ENGs and rotary chairs, if it’s severe enough to be outside the margin of error that is.
I really, really doubt it would produce any migraine-like symptoms, though, like pounding (in which I include hearing your heart beating etc).
Ototoxicity can also cause hearing loss, and hearing loss only (no dizziness, that is).

Hi Karen,

I also have migraines and vertigo, and vertigo is NOT part of ototoxicity

Why were you told that vertigo was not part of ototoxicity? I’ve had a brief search around about this in some medical journals and they do report that it can indeed produce vertigo which would make sense if it were unilateral.

Did they pinpoint a medication you took that was responsible? I would just want to be really certain that this is really the problem they dx’d and not just MAV. Have you tried any migraine preventatives? Sorry if I missed that already.

Best … Scott 8)

Kim

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How is Ototoxicity diagnosed? What kind of testing did Cleveland run on you to come to that diagnosis?? Do you have any idea what caused it?

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As one of our highly knowledgeable members suggested, ototoxicity is diagnosed by testing the patient with various ENG, VEMP, hearing and caloric tests. The major difference in being tested at a facility like Cleveland Clinic and a local ENT’s office is the use of the Rotary chair. I had a “regular” ENG test locally which showed borderline results, then one month later when I was tested at Clevelant Clinic They used the more extensive testing and discovered I had lost 80% of my balance system. So, quite often the local ENT’s do not have adequate equipment when determining serious vestibular disorders, and many individuals go on with chronic dizziness and imbalance without proper treatment. My ENT would have let me continue to suffer without help if I had not made arrangements to go to Cleveland Clinic. He knew I had vertigo because he could see nystagmus in my eyes, but his office had been prescribing (over prescribing) lots of gentamicin, neomicin and tobramycin for frequent ear infections for me to use over the years, and he did not want to admit that I was in trouble - Ototoxicity = toxic poisoning of the ear! Well, that is a story in itself. That is the possible cause, but no one will come out and admit it.

Karen

Mikael:

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if youve had ototoxity, would an ent with dizziness as an interest recognize that? Ive done various of manual tests by different gps and 1 ent, and not even all of them seemed to think my problems were even real…
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Yes, an ENT is the person who specializes in the vestibular system. You need to see a good one. Talk to your GP or someone in your area who can suggest the best ENT in the area. They are not all equal. Some simply manage colds and ear infections. Others are very good at recognizing people with vestibular problems. Visit www.vestibular.org that website has a list of references in many areas and may be of some help. It also has literature that you can send for. Quite often people with migraines, especially MAV, end up with vestibular problems later in life or acquire them, also. Do not let any doctor tell you it is something you are imagining. We all know that these symptoms are very real, you need to find a doctor who will listen to you. Sometimes I think those doctors simply do not know how to deal with these disorders and do not want to admit it. Keep a diary of when you have a symptom and what you did that day or ate, and try do your own investigating in the meantime.

Good luck!

Karen

Tranquility:

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My limited knowledge on the subject of ototoxicity: usually bilateral (both ears), I think, and shows up on tests like ENGs and rotary chairs, if it’s severe enough to be outside the margin of error that is.
I really, really doubt it would produce any migraine-like symptoms, though, like pounding (in which I include hearing your heart beating etc).
Ototoxicity can also cause hearing loss, and hearing loss only (no dizziness, that is).
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Very good! You are correct because I do have bilateral hypofunction, but there is a unilateral version also. If I had lost 100% in both ears, I would not have had any chance of having vertigo, because the imbalance of the fluxuation or unevenness in the two ears, especially while it is being lost causes vertigo spins. People with 100% loss never have any vertigo spins because there is no friction between the two ears. And yes, quite often with 100% there is hearing loss. But, we do experience dizziness and imbalance, of course. I did have the hearing your heart beating and the rocking on a boat sensation during the period of time when I was losing my vestibular system. I also - we also, get headaches with the loss. They are different from migraines. They are not the sensitive to light, sick to your stomach type, but they do come on quickly and they are very painful. They are also much shorter in duration than a migraine and not flu like.

My dilemma was often, am I dizzy due to my imbalance, oscillopsia, or MAV? Very confusing. I have been told that if I do lose my hearing since I have a history of migraines and vertigo that I may have Meniere’s Disease.

Karen