Got an MRI with dye injection this afternoon… really not looking forward to it… feel anxious enough about my surroundings without being shoved in a claustrophobic noisy tube…
How did you all find it?
I had an MRI with contrast a few months ago. I was nervous about the test because of all that I had read about it. I can honestly say it went very well. The machine does do a lot of banging, but it isn’t as bad as people make it out to be. Being in the MRI unit was a bit weird, but if you close your eyes then it isn’t bad at all. If you are able to get an MRI in an open one rather than a closed it is much better. The test is over before you know it. Try not to stress about it. I did take an Ativan before I had the MRI. I actually laughed after I came out of the unit becaus I got so anxious about it before I went in and it ended up being a piece of cake. Good luck and really don’t worry 
If lying down is when you feel better than the MRI should be a piece of cake for you. Just close your eyes before you even go into the machine and keep them closed the whole time. If you can’t see, how can you get claustraphobic, right? If you are worried about the noise, bring earplugs. I think I picked some up from a home improvement store.
I’ve had a few MRI’s done over the years (2 on my head). They aren’t fun, but they are pretty easy. You just lie there for a while. Try not to get too worked up about it. The more you can relax the faster it will seem to go.
Thanks for the replies both.
The MRI turned out to be better then I had expected 
its amazing what you can still do with this dizziness when you have to.
As for the results… The doctor said that my brain looked absolutely fine… The only noticeable factor being that my semi circular canal in my left ear was slightly narrower than normal.
She did point out that this may not be anything to do with my dizziness as she sees many patients with this who have no vestibular issues at all.
Will have to wait and see what the neuro otologist makes of it now but would be interested to hear your thoughts
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Glad it went well Richy
I know almost nothing about ear canals so I’ll have to leave that to the ear doc. My best guess is that it would take something pretty significant to cause the continual issues you are having, so given no problem with your brain I suspect it is more likely to be migraine than a minor problem with your ear, but that is just a guess.
BTW, my doc told me this week that he gives me an 80% chance of being off medication within the next year or so. I know that is one of your concerns–being stuck on medication long term. He told me it was really up to me how long I stayed on the Topamax since it is working so well for me. He said I could stay on it from 6 months to 2 years, but at some point in that period of time I should try to pull off of it and see if I could move on without it. He thought It was about 80/20 that I would be able to, with the caveot that I might need it again down the road if I had another flare up.
— Begin quote from “JamieH”
I know almost nothing about ear canals so I’ll have to leave that to the ear doc. My best guess is that it would take something pretty significant to cause the continual issues you are having, so given no problem with your brain I suspect it is more likely to be migraine than a minor problem with your ear, but that is just a guess.
BTW, my doc told me this week that he gives me an 80% chance of being off medication within the next year or so. I know that is one of your concerns–being stuck on medication long term. He told me it was really up to me how long I stayed on the Topamax since it is working so well for me. He said I could stay on it from 6 months to 2 years, but at some point in that period of time I should try to pull off of it and see if I could move on without it. He thought It was about 80/20 that I would be able to, with the caveot that I might need it again down the road if I had another flare up.
— End quote
Thats really great to hear Jamie. Does the medication stop you from doing many things, i mean can you still drink and go out and have fun?
Well, I am not SUPPOSED to drink alcohol on it. I don’t know how strong that warning is. Is it a “don’t drink alcohol because it makes you super tired” warning, or a “don’t drink alcohol because something bad will happen” warning? I’m not sure so I haven’t been drinking. I suspect the warning is more for epileptic patients than migrainers as if you are taking the medication to prevent seizures then anything you do to affect the medication could cause a seizure which would be terrible. But i stay away from alcohol just to be safe and I’m not a huge drinker anyway. About the only place I would miss it is Vegas, where I like to get blasted, but I have a 1-year old now so Vegas probably isn’t in the cards for a while anyway.
Other than that, the only real issue I’ve had is that carbonated stuff tastes like crap, so I have to drink lemonaide instead of Coke. What a weird side-effect huh? But other people do sometimes have more issues.
Obviously every med is different and there is no way to know that Topamax is what would work for you or even if your doc would want you to take it. I just though you might like to hear that my doc thought there was a decent chance that I could get off of the medication in the next 9-24 months and wouldn’t have to be on it the rest of my life. Obviously there is a chance that I will try to come off of it and it won’t work and I’ll have to stay on it, but he said his experience is that if you can find a medication that makes the symptoms go almost completely away like I have, that usually if you stay on that medication for a long period you can then back off of it and the symptoms stay away. So I hope he is right, even though I really don’t mind being on the Topamax. Outside of it ruining the meal-deal at McDonalds it really doesn’t affect me much.
that is great to hear, very positive.
On top of my symptoms lately I have had a lot of anxiety, like I am always sitting on the edge of a panic attack and I am somehow not in control… I guess 4 months of this without letup is starting to take its toll on my psyche…
Its a really weird feeling for your world to not be solid for so long… a morning of tests tomorrow and on friday, then final diagnosis by neuro oto…
I suspect, just as the MRI the tests will not show any vestibular issues.
I really feel for me that it is my somatosensory system which is somehow messed up… if i move my skin on my head, or my stomach, or chest, the motion intensity feelings really do increase… that can happen while I am lieing down aswell. its so weird
I suspect you are right that your vestibular system is fine. Logic says you wouldn’t be able to do long bike rides with a faulty vestibular system.
The anxiety could easily be a byproduct of the vertigo. I was getting intense anxiety as a side effect of the entire thing. Once I got the vertigo under control the anxiety went away as well. Have you had anxiety issues in the past? If not, then I suspect your anxiety, like mine, is a byproduct of the vertigo.
Once you have the vertigo, the natural reaction is to look for a million things that might be affecting it. I was finding all kinds of things that might make it better or worse–like I would find that massaging my head would lessen my symptoms etc. All of that stuff was just tangential to the real problem though, which was that the vertigo was happening at all. I think once the vertigo is triggered there are are tons of little things that might make it slightly worse or better, but all of that might just be a smoke screen. If you can get rid of the source of the vertigo (which in my case was the migraines), then all of the other stuff is irrelevant.
Hi Jamie,
I have had anxiety in the past but only really naturaly anxiety… in the lead up to public speaking, big events, interviews etc etc… This is a whole new type of anxiety but I agree with you, that once the source is located it should go away
I have had a few more tests this morning at the Zurich balance center. I had a sacculus test where they place an electrode (not sure thats the correct name, its the things they stick on different points of your body) on the left side of my neck, right side of neck, and at the top of my chest. I then had to listen to a thumping type sound at different decibel levels whilst firstly turning my head fully to the right and then to the left.
After this I had to lie on my back and some new electrodes were stuck directly on my lower eye lid of each eye and also on my chest. They then held a hammer type device on my forehead which pulsated and measured things whilst i looked fully back with my eyes.
After this I had a few visual tests, Wearing these goggles which had a camera constantly watching my eye as i looked at different points on the wall.
And lastly I had to look far away at a computer screen which showed a circle with a gap that would change position from top to left to right etc… and I would have to press the corresponding button to confirm what I had seen as the doctor should my head from left to right and right to left.
All tests were fine… I have a few more tests on Friday and then final diagnosis.
If every conceivable test they do turns out ok does this mean the only possible cause is Migraine?
— Begin quote from “RichyF”
Hi Jamie,
I have had anxiety in the past but only really naturaly anxiety… in the lead up to public speaking, big events, interviews etc etc… This is a whole new type of anxiety but I agree with you, that once the source is located it should go away
If every conceivable test they do turns out ok does this mean the only possible cause is Migraine?
— End quote
Yes, those types of anxiety are normal and actually it is a concern if they AREN’T there because if they aren’t it probably means you are a sociopath.
If every test turns out normal it doesn’t mean for sure it is MAV, but what it does mean is that the doctors don’t know what it is. When the docs don’t know, if there is a history of migriane with the patient, or the patient’s family, then MAV becomes a legitimate diagnosis of exclusion, since there is just no other explanation for what is going on.
At that point, really the only way to prove/disprove migraine is to start treating for migraine with migraine preventatives and see if you start getting any improvments. And as I found out, sometimes it takes several different medications to find one that works (took me till the 3rd one).
So it’s a messy diagnosis that requires a lot of patience and a lot of work from the patient since the only information the doc is getting is your feedback. So all the decisions on whether to up or lower dosages or change meds will come from the patient feedback. But if that is what the docs think is going on, it’s way better than having them tell you there is nothing to try at all. At least you feel like you are tryinig to get better even though it can take a long time and be very frustrating at times.