More Than ONE Condition?

Specific Illnesses & Conditions VM/MAV
1

Hi Everyone,

Anyone here believe they could very well be suffering from more than just a Migraine related illness? Do you believe another condition… like an underlying Vestibular problem or an Anxiety condition could be in the Mix with your Migraine? Dr. Baloh from UCLA diagnosed me with “Migraine Equivalent” back in late 2006 and it appears i have the Silent Migraine Type. But i honestly believe a complex inner ear problem is somewhere in the mix… although all the Ent’s i have been too could never find anything substantial. As far as Anxiety… I do have my anxious moments (and who doesn’t)…but i would not call it an Anxiety disorder.

So anyone here believe that you most probably have more than one condition going on?

Joe

2

Joe, that is a question that I have been struggling with also, especially as I haven’t yet found a med that has given me any relief. I think it is quite posisble and the only real way to know is by vestibular type testing and then finding a med that helps some of the MAV symptoms but doesn’t give you full relief. Good luck. Ben

3

benh…i already went thru the vestibular testing back in 1998 and completed all the tests and nearly all tests turned out fine. The only test that i was not able to complete is called the ENG…where they put water in your ears and it brings on lots of vertigo. I had to have that test stopped ater 30 seconds because i began to feel extremely nautious and i ended up vommiting. I just have this hunch i have a very sensitive inner-ear and possibly a certain part of it does not function that well. Although…i have always had problems with Motion Sickness…and have never outgrown it. When i was a kid my family would drive into the Yosemite mountains and i would always get extremely nauseated and throwup. Can’t handle being on a boat (deep sea fishing) or even ride certain carnival rides. This has always been very difficult. If i should drive into the curvey mountains i make sure i am the driver…and even then i’m uncomfortable.

Thanks for your response.

Joe

4

Hi Joe,

I have more than one condition and I think they overlap. So many tests and specialists I cant remember them all. Had the nasty ENT tests done more than once and at two hospitals. One hospital said I had menieres, another said not, but an inner ear lesion. The calorics (two letters sent from hospital, one saying a problem, the other saying, not!) Said they wanted to repeat, I said, no thanks. Then they said it was vestibular migraine (I do get definite flashing light migraines) and daily headaches along with dizziness.

Other symptoms, fatigue, sweating, exhaustion, dizziness, after exercise going into migraine etc. diagnosed chronic fatigue syndrome. Past tests showed B12 deficiency, antibodies to the thyroid, odd bits and pieces abnormal. I do know that when I do too much physically, it brings on vertigo and migraine.

They say, migraine can damage the inner ear, so the two I am sure go together.
The cfs, who knows, if it is connected, as I said, I get dizzier and more vertigo, when exhausted, but I also get achy and fluey like, as some on this board do and some dont.

Christine

5

I definitely have vestibular issues as well as MAV. I am also deaf.

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Christine,

Dr. Baloh at UCLA diagnosd with with “Migraine Eqivalent”…or atleast that is how he put it. In some ways i wish i had the more common symptoms of migraine like an Aura for example but it does not appear i don’t. Did you have any difficulties with the ENG? For me personally, that was the most frightening test i have ever been thru and puking my guts up did not help matters. When you describe one of your symptoms as Flashing Light Migraines…i’m not clear what you mean? I don’t have any of that stuff…ever morning the symptoms start all over again like a rerun of a movie. I wake up feeling relatively ok…as long as i have gotten some good sleep and did not eat or drink anything that could trigger more symptoms…+ keep my stress to a minimum. So i wake up…get on the computer for a bit…make a little breakfast…and as all this is going on i begin to feel my Head TENSING UP inside and then the MOTION FOLLOWS and before you know it my head is very uncomfortable and not very Relaxed. It’s like my brain or some are inside my head becomes very tense. These symptoms described increase to where i become very irritable and anxious and then i take my medication and within 15 minutes i’m feeling better. Far from 100%…but atleast well enough to do things…drive, work, etc. It’s ironic that i suffered from Motion Sickness all of my life (carnvial rides, very curvey roads in mountains, boat rides)…and i ended up with this Nightmare. Makes you wonder…

Joe

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Joe, I strongly believe I suffer from more than one inner ear disorder. To date no doctor has been able to diagnosis me with any certainty because 1) I refuse to take the ENG and 2) my symptoms don’t fit any one disorder.

Like you I suffer from motion sickness, I am very sensitive to any kind of movement. My chair at work is very “loose.” Any movement from me makes the chair move which in turns makes me move unexpectedly which in turn gives me a very sick feeling. And I’m not talking major big moves, I’m talking 1/4" moves.

I have always felt my extreme motion sick problem is different than my vertigo problem. The motion sick feeling is always there in the background and easily provoked by any kind of movement. However, it doesn’t lead to vertigo no matter how bad it gets (so far that is, knock on wood). My vertigo problem, however, is very sporadic, very severe and comes on suddenly. While I feel very motion sick when having a vertigo attack, I dont’ thinkthe m.s. causes the vertigo.

My problem in taking the ENG is not so much the fear I will get vertigo but moreso that I will get motion sick which will probably be worse than the vertigo because from what I understand the vertigo is only temporary, maybe 60 seconds. But when I get motion sick it is a long lasting feeling, hours. I think I am more worried about the blinking lights they will make me follow, something like that is sure to make me motion sick. Geesh, it even makes me sick to think about it.

Bookworm

8

Hi Joe,

I seem to have two different things going on myself, however, one is not really an ongoing illness but more the leftovers of VN. I still have decompensation issues that are unresolved. For example, I cannot play a guitar without kicking off dizziness and disorientation of the sort I had during VN. And I cannot listen to an ipod with my eyes shut lying down. It kicks off all sorst of weird horrible feelings of moving etc and sometimes losing my stomach. I suspect if I tried to do things requiring a high degree of mulit-tasking it would also kick off some serious decomp. I used to fly a Cessna years ago when I was working on a private pilot’s license but haven’t tried to fly a plane now in over 15 years. If I got behind the stick now it would no doubt be very difficult and I’d walk out of the plane wiped out. Not sure how I would ever compensate for that again.

Scott :slight_smile:

9

Hi Joe,

I had the ENG, calorics etc. done 3 times over the years. All were not pleasant at all.
The calorics (water in the ears) sent me into severe vertigo each time, in fact, I couldnt complete the last one. This was supposed to be a good sign! The vertigo lasted nearly an hour, I remember sitting outside the hospital in London, saying to my husband, how was I going to get home. When I went in for it the nurse said to me “I can assure you, you will go out feeling just the same as when you came in”, what a b… lie!

My first set of ENT tests done when I was 20, said I had menieres that had burnt itself out. I had 54 per cent ear parasis, not sure what that means. All my tests have not been totally conclusive. On one set of tests I showed right beating nystagmus on all of them. My ECOG (hole in the ear test) showed 60 per cent (over 35 is supposed to be endolymphatic hydrops (fluid, same as menieres really). I showed slight loss of hearing in the high tones. After all these tests, the general letter to the GP, said I probably had the beginning of hydrops, probably an inner ear lesion but nothing really to account for my symptoms, they decided it was vestibular migraine.

Flashing lights are the zig zag pattern you get as an aura before the migraine, I have had this many times. Also suffered bad motion sickness as a child, my mother comes from Austria and we had many long trips from Germany into Austria in the car and I was laid in the back, with a pkt of dry biscuits and sea legs tablets.

Joe, I start the day much as you do. I usually wake feeling a little drugged, cant wake properly, then then the dizziness starts up. The tense feeling you describe, I think is the same as when I feel like there is a polker stuck up my neck into my head, stiff headache, tense. I am sure this is because of trying to control the dizziness.

Scott, I relate to the guitar playing too, I think this is because the head is bent down and to the side (well it is in my case, I have a weird way of holding my fingers when I am playing. I also gave up on fair rides years ago, when someone persuaded me to go on the waltzers and not wanting to be a killjoy I did. Felt sick of an hour after, never again. This illness does take away a lot of the things we enjoy, or should enjoy. When I was in my 20s I just used to get severe vertigo attacks, in between I was fine. Not anymore.

Today, I have no headache just waves of dizziness, it is very humid here. We are going to attempt an art gallery and then the pub by the river. Dont know how long I will last, wish me luck!

Christine

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Scott

Have you still got a pilots licence? Thats pretty awesome man. I would love to get one of those if my dizziness lets up. Nice little hobby!

Luke

11

Bookwarm,

As far as Motion Sickness goes i have always been Motion Sensitive as a kid and adult…even before this dizzy mess. But the motion issues would build up while sitting in a back seat of a car while my dad drove us to the Yosemite mountains…or any type of narrow curvey environment in the mountains. Also…going fishing on a boat with my dad as a kid…that would make me feel nauseated and also carnival rides that go in circles. Other than that i would be fine. Now since this dizzy mess has begun i’m even more sensitive to motion. If i move my head up and down too much or side to side while talking too someone i get get very dizzy or if i’m with someone in a car (as a passenger)…and the driver puts on the Brakes alot…that can really mess me up for a few days. Staying on the computer for too long sometimes bothers me too.

Also…if don’t watch my diet and did not take medication regularly i am almost certain the Vertigo would return. But i try and be careful what i eat/drink and take my medication on a daily basis and if i follow that schedule…there are no vertigo episodes. Once in awhile i will have a half spin real quickly and then it’s over and that usually happens when getting out of bed. But it’s a reminder that vertigo can return if i don’t take care of myself.

Scott…sounds like your VN has left your inner ear with some injury?? I’m like you in that i cannot deal with too much multi-tasking (not that i was ever good at it anyway…LOL)…but if i do more than 2 things …stress and dizzyness increases and then i may end up calling in sick from work the next day. This Migraine like condition makes me feel so fragile. So atleast prior to your condition you were able to fly a Cesna plane…i would never go on one of those prior to my illness or afterwards. I would most likely puke my guts up because of the up and down motion. Same goes for going to a Cruise Ship…it’s never going to happen in my life-time. Again…even before this condition i was always very wary of going on a cruise…especially suffereing from Motion Sickness all my life. With Motion Sickness…i don’t just feel a little nauseated and light-headed…i get so sick…i end up with the dry heaves…it gets that bad!

I really do appreciate everyones input on this subject matter.

Joe