I honestly dont even know anymore.

I'm sorry that you're going through this, but know that you are not alone and you will be fine! I've gone through bouts like this that have lasted several months, but I have always gotten back to my old self again. After initially being diagnosed with labyrinthitis, BPV and Meniere's, I was finally diagnosed with migraine (migraine associated vertigo, or MAV), actually "status migraine" as it could go on for months.  I remember saying to the doctor "but my head doesn't hurt, so that can't be it". Well, in the attacks I've had over the past few years, I have started getting distinctive pain in the left side of my head, and the vertigo and pain go in cycles. I also get problems with my vision, weird breathing patterns and bouts of powerful anxiety - these things are part of my aura. I am quite relaxed about my symptoms now because I know that I'm ok. What's so tricky about dizziness/vertigo is that it feels so scary, but in fact it is a very common experience, and it is very, very seldom that it's caused by anything serious. I'm an audiology student, and we have huge numbers of patients that experience vertigo. If the cause is "peripheral" - e.g. involving the ears, it might take months, but your brain will compensate for the deficit over time. If the cause is "central" - eg brain, it is most likely MAV, and you can be treated for this (but make sure you get your hormones checked and definitely a full thryoid panel before just taking migraine meds! Sometimes there's an underlying cause like hypothyroid that's easy to fix.). If they haven't found any neurological signs during your trips to the ER, and if you already have a clean cat scan, you really shouldn't worry about that MRI. You will be ok, I'm sure of it. Warmest wishes!

Hi

I have just been through your experience also please don't panic you need to take some more time out! It will pass over time you will feel your body getting back to normal it just takes time.

Hi, Ben again.

I received this post after the other one, so I did not realize you were from Arizona.  Most of the posts on this site are from the UK.  I am amazed that you were able to get such creative care from your doctors, and I only--wish--that I could have had it.  The idea of taking both products at the same time is a very keen in my mind.  I have had a lot of interaction with a large body of doctors and never even once got an opportunity to try anything special, even when I asked for it.   After many many hours of studying this thing and living through the year and a half struggling with the effects, I will tell you that you are certainly lucky that you have such good medical help.

 

I have made considerable posts on this site and ask you to follow them to the beginning, sometime around mid year last year, and read as I progressed through the trials and tribulations of my malady.  I tell what I was feeling and how I progressed through it all the way up to just a few weeks ago.  You could learn much if you take a look.

In this, your 2nd post, (the one I got second anyway) you sound like you are struggling with the symptoms.  Please try to believe that the whole problem is coming from the misinformation that one of your inner ears is sending to your brain.  The information about equilibrium is so important that it affects everything you do it even affects your feeling of well being.

  

In my case, if I get busy trying to do things, I get more and more anxious as I go along.  The longer I stay at something the worse it gets.  Finally, I become overwhelmed by the dizziness and inability to focus and concentrate, that I have to stop and find somewhere to lie down.  In my case I just become so fatigued that I start tripping, knocking things over and dropping things and I can only put up with that for just so long, because I used to be an analytically person, very methodical and careful.  I am trying to increase the "quality" time that I can spend doing things by staying at it until I become overwhelmed.  I place a chair where I can stop and sit for a few minutes, that seems to help me get farther in time, but finally I have to give up and stop altogether.  If I lie down for an hour or so I get calmed down and the dizziness dies down and then I go and push for another round, each time increasing the time I spend in action.

In my quest to get a proper diagnosis I went for a 2nd opinion.  I went to the University of Michigan School of Medicine in Ann Arbor because I LIVE in Michigan and the U of M is only about 25 miles from my house.    The first opinion was formulated using input from my GP, a Neurologist, an Otolaryngologist (ENT), a Physical Therapy unit and a Polysomnoist  (sleep doctor) .  I had a sleep study done where I was of course diagnosed with sleep Apnea (90 % of Americans can be diagnosed with sleep Apnea, but hey, I was willing to try anything, what's another $1500 or $2000?)  Those were all just money making propositions, remember the practice of medicine is a business with bills to pay and a profit to be made.  I just kept falling though the cracks and actually only after extensive research done by myself have I had enough information to ask intelligent questions and get factual answers.  I was actually told not to ask any more question by the ENT at the U of M clinic I believe because I was beginning to shoot holes in their diagnosis, not to mention their prognosis.

So, as you can see this is tricky business, trying to get an accurate diagnosis of an inner ear problem.

 

Lockerby, I would like to say that you have gotten treatment that I have not heard anyone else having in my year and half of living with this nemesis.  I applaud your doctors and you for pursuing  the issue to the point of getting such innovative care.  Stay the course and try to understand that the feelings should subside as you become "immune" to the false signals and relearn your world again.  Take heart in the fact that not many have this thing plague them for their whole life.  ( some do,but it is a reoccurring attack, usually BPPV, and they get back to normal quite quickly and Antivert works pretty well for the ones that I have encountered)

 

Good luck and have patience with it, it will get better.

Ben

 

Hi Lockerby

Ive had this now for two and a half years and I agree with the others, you need to take the meds.  They have given them to you for a reason to get better.  You have to try it.  The more you worry and get anxious, the worse the dizziness will get.  I have found during this time, that the best thing to do is try and just carry on.  I have managed to extend my weekend days from half an hour to a whole day now by just working at it.  Dont worry youve had all the tests so nothing worse will happen, this thing is very common.  I found by continuing to go to work my work days were much better than when I gave in to it and went to bed all day at the weekends, so I started to get up early at weekend and filling my day as if it was the working week and my head improved.  Ive been diagnosed with silent migraine but it took a year and Im not convinced its correct.  I have it 24/7 with no let up, which to me is weird and doesnt fit in with the diagnosis.  Im asking to see someone at the dizziness clinic as Im fed up with my two neurologists.  No one has checked in my ears properly so who knows whats going on in there.  If the meds dont agree with you or help, then go back but you have to help yourself and give them a try.  Best of luck.