Questions for azdizzy

Hi, I’m going over your questionaire below and I am confused by the paragraph in bold. Let me try to understand. Symptoms first appeared in 1986. I assume you sufered with these symptoms with no help and no medications until April 23rd, 2006 until you were finally diagnosed?? Then you claim that you began treatment immediately, going off and on medication for 1-2 years. That time frame right there is possible I suppose but it won’t be 2 years until the end of the month. Just making sure that this time frame is correct. Here is where I have a huge difficulty understanding. In your next sentence, you claim to have periodic attacks during the next 15-20 years, but the problem there, is that it has been less than 2 years since your diagnosis. Then you claim to have your big crash in Februrary 2006 with “total vertigo”. I’m assuming that you just listed your time frame partially out of order by accident. I’m assuming that you mean that between the time of 1986, and Feb 2006, you experienced periodic “attacks” until February where it incompacitated you. 2 months after this, you were finally diagnosed with the condition. Is that more correct? Even still, I need some clarification.

I want to ask you to clarify for me here, because what most people do, and it’s natural as we all do it, but we tend to give “emotion” to our symptoms rather than just tell exactly what the symptoms are. First, “vertigo” in and of itself, is an often very misused word. People get a little lightheaded standing up, and say they had vertigo. Or they get off a rollercoaster, and feel like they are rocking or swaying a bit with some slight nausea, and then also claim they are having “vertigo”. Just so that I know we are on the same page, true vertigo is the sensation that the world is in a full spin and you are unble to find your position in space. People experiencing true vertigo will be unable to stand up, and will often have nausea and vomiting with any kind of head motion. I had an episode of labrynthitis that caused this type of vertigo for 4 full days, 2 weeks of general imbalance, and another 2 months to get my entire balance back. So I have a better appreciation for this. For all I know, this is EXACTLY what you experienced. But there are also degrees. Describe your vertigo symptoms. Were you in a full fast spin, unable to get up?? Were you having slow spins or slow partial spins where the movement is VERY noticeable, but not enough to cause you to be completely unable to get out of bed?? Or were you just having horrible feelings of generalized “dizziness” (imbalance with some feelings of slight spin or motion) which extremely limited your activities to simply house and bed?? Or something in between??

I also need clarification on this “big crash”. That doesn’t actually describe anything that can be quantified. What did this “big crash” consist of?? What happened in your life just prior to this big event?? How long did this big crash last?? Your questionaire doesn’t say weather you were on any medication during this period or weather it just burned itself out. You claim you got results after 3-4 weeks of being on medication. I assume this was when you were finally diagnosed in April?? if that’s the case, your “crash” would have lasted somewhere in the range of 2 months?? Did time improve the big crash or did you suffer the same symptoms right up until diagnosis??

You also claim that during the period of 1986 until the “big crash”, you suffered periodic “attacks”. What does this mean?? Were you malled by a dog several times over the years lol?? No, just kidding. Just trying to put some perspective on using action words and emotions for symptoms, and how that can lead to confusion over what’s really happening. So, if you can, describe what your attacks consisted of. What symptoms?? how long did these symptoms last?? How often did they come about??

Thanks for taking the time to do this. I would just go back to your questionaire and edit it to include the updated info. Again, when you have time. I am very interested in what happened to you and what continues to happen to you. I can’t say for sure, but I think your “big crash” may be quite similar to mine. we’ll see once you quantify the symptoms. Thanks again!

ONSET = Sudden or Gradual
Sudden

SYMPTOMS FIRST APPEARED
1986

DATE YOU WERE DIAGNOSED WITH MAV
April 23, 2006

TIME ELAPSED BETWEEN ONSET OF SYMPTOMS AND DIAGNOSIS
20 years (unfortunately)

WERE YOU DIAGNOSED WITH ANY OTHER DISORDERS AT THE SAME TIME?
orginally diagnosed in 1986 with panic disorder (dizziness was not at that time true “vertigo”, just an “out of sorts” type feeling - feeling odd, like not really in my own body, my own voice and everyone elses sounding strange. Only lasting a few minutes.

ONCE DIAGNOSED, WHEN DID YOU START EXPERIMENTING WITH TREATMENTS?
Immediately. Started Inderal (propanolol, beta blocker) for the panic attacks which was blamed on mitral valve prolapse. Had great success, went off of it within a year or too, seemed to solve the “panic attacks”. Had periodic attacks during the next 15- 20 years, but not life-changing, didn’t affect my way of life. “Big Crash” , total vertigo in February 2006, 24/7, blood work, ct scans, mri’s, all the usual, all normal. Diagnosed with MAV, started Inderal again, strange coincidence its what I always said “saved” me with the panic attacks., and its a fairly common migraine preventative.

ON A SCALE FROM 1-10, RATE YOUR PRE-SYMPTOMS PRIOR TO TREATMENT.
10
Completely bed-ridden and home bound after the “big crash” in 2006

WHEN DID YOU START TO GET RESULTS?
Within 3-4 weeks, but also did the Headache diet at the very same time (still do)

ARE YOU STILL DEALING WITH SYMPTOMS NOW? IF SO, RATE THEM FROM 1-10 WITH 1 BEING 90-95% FUNCTIONAL AND 10 BEING COMPLETELY BEDRIDDEN. 5 IS CONSIDERED THE END POINT OF WHICH SYMPTOMS ARE TOLERABLE FOR LIFE IF NEED BE. ANYTHING BEYOND 5 IS CONSIDERED A DISABILITY
2 -3
Some days are better than others. I’m happy with the progress I’ve made, never stop looking for better answers, and of course the absolute “cure”.

TOTAL TIME WITH MAV?? (this could vary if onset was very gradual. But I would start when symptoms began to intefere with life)
20 years, but many good (symptom-free years) in between

Hi Rich-

Sorry about the confusion. I actually got a little confused reading your post, but I’ll see if I can sort it out a little better for you. :smiley:
As far as dates go, I can only be very general. You start in the beginning saying "I’ve been sick for THIS many days, and then it becomes THIS many WEEKS, then MONTHS, and then YEARS. AT that point, dates become a blur, and it really doesn’t matter.

I think the main thing I didn’t clarify was back in 1986 I was “mis-diagnosed” with panic attacks. I never was comfortable with that diagnosis, I always knew there was something neurological happening, whatever I was experiencing was CAUSING major panic and fear, not the other way around. My episodes consisted of “depersonalization” and “derealization”. Back then, it was extremely difficult explaining to Doctors my symptoms. (I have since come to discover there are names for what I was experiencing). The only way I knew to explain it back then was to say that during these episodes I was having , “my own voice would sound weird to me, I felt like I was in a bubble, it felt like I couldn’t tell up from down, as if I was floating, like my own limbs weren’t attached to me. etc.” . Anyway, it was then that I was prescribed Inderal . I was told I was having panic attacks caused from mitral valve prolapse (heart murmur). I took the Inderal for 1-1/2 to 2 years, and finally weaned off of it. I did very well during the time I was on Inderal. My panic attacks basically disappeared.

Please read my story (from March 23, 2006) in the “Post Your Story Here”. (Page 1, about half-way down the page). It may help to fill you in on a few more blanks. It was my original post here, and it was approximately a month before I was officially diagnosed with MAV.

From about 1988 to early 2006, I was on no medication. It was during this time that I had “periodic” episodes, but nothing life-altering. (Panic -type episodes). Dizziness doesn’t enter the picture until early 2006.

February 7, 2006, was my “big Crash”. Big Crash is basically my way of saying when my whole world fell apart because of MAV. “Whole World falling apart” is when I couldn’t work anymore, being a single parent of a small child I think that qualifies. Literally overnight, my world fell apart. Dizziness and Vertigo.

As far as describing the Dizziness and Vertigo: I believe at one time or another I have experienced ALL of the types of vertigo / dizziness you described, with the exception of being light-headed upon standing up, and crawling to the bathroom to vomit because I CAN"T stand up. I’ve always been able to stand, even when the room is spinning. I’ve had extremely FAST Room spins that last 3-4 seconds, but worse than that is the slow spinning room that just doesn’t want to stop. (If you’ve never experienced that type of spin, you may not understand how one may become bedridden. You are physically able to stand up and walk around, but doing so is extremely untolerable. At least for me.

I realize I haven’t answered anywhere even close to all of your questions, and I apologize that I’m out of time right now.

By the way, when you were describing your definitions of Vertigo, you mentioned having Labrynthitis. Are you certain it was Labrynthitus and not MAV???

For now, Take Care -
Kim

Thanks for that clarrification Kim. MUCH better picture of things. Your big crash was virtually the same as mine when this hit me abruptly. I understand the 'slow spin" that you talk about. You can walk, but you really don’t want to. But laying down doesn’t really make it go away either. You just want to sleep it off. I understand EXACTLY what you mean. I still deal with some of that now even, but I have had no treatment yet so this is to be expected I guess.

Am I sure that 2007 was labrynthitis and not MAV?? I guess I can’t be 100% sure. Let me ask you this. When that happens, and it’s related to MAV, do you lose hearing as a result?? I would think “no”. Iost 30% of the hearing in my right ear, and I’m left with some ringing as well. Definitely nerve damage to the inner ear. But I recovered perfectly from it otherwise. It’s interesting, when this happened to me, I had a horrible head cold, and my ears were clogged (like they always are every time I get a cold). I tried to adjust my ears by pinching my nose and blowing, and that clogged my right ear even worse. At that point, I figured there was really nothing else I could do. At that point in my life, I didn’t realize that there was something called a “decongestant” that I could have taken to prevent a lot of that. Oddly enough that’s true lol. Anyway, I sat on the toilet to do my business and when I was having a bit of trouble, and I was straining a little, WHAM!!! The whole room started to spin. Slowly at first, and then violently. It didn’t stop for 4 days straight. I was bed-ridden in the hosptial for that full 4 days. It took 2 weeks for the balance to slowly start coming back to where I wasn’t “dizzy” anymore, and an additional 2-3 months to get all my balance ability 100%. But I was left with no residual symptoms other than the hearing loss. This dizziness is COMPLETELY different. First off, I was getting better every single day with that event. With THIS, I can be at 80% one day, then 40% the next. You never know where you are going to be. Very different from the labrynthitis episode. I also didn’t have the feeling that the world was rocking and swaying in all directions (visually, as well as inside my own head). the differences between that and this are vast and far. That’s why initially, I persued inner ear as the cause of these symptoms…because of my history. Turns out I was wrong.

I have been having anxiety and panic my whole life. so I am not surprised this finally happened. I just wish someone told me just how dangerous anxiety can be. I always thought it could never harm me. Unbelievably wrong!! Anxiety HAS to be controlled in order to balance brain chemistry. I wish I knew that a year ago :frowning:

Rich

Rich,
One point. You talk about inner ear dizziness (peripheral) and MAV as if they don’t overlap.

I know that if you read the literature MAV is usually classified as central vertigo. However a lot or recent research runs contrary to this. In one study they tested a group of patients with confirmed MAV who were also experiencing nystagmus. About half the group displayed nystagmus consistent with central vertigo and the other half peripheral vertigo. Current theory is that migraine can cause central dizziness via brain stem inflamation or peripheral dizziness via inflamation in the inner ear. If you’ll pick up the book “Heal your head ache” the author - a John’s Hopkins neuro guy - gets into the specifics of exactly what migraine can do to the inner ear - its impressive. Some of us (including myself) experience so many inner ear sympotms in addition to dizziness that its hard to believe thats not the source of the problem. In my case I’ve developed high frequency tinnitus, popping, fullness at night, a weird low frequency rumble when I wink - the list goes on. Most of these symptoms seem to be common with the people on this forum. On the other hand some people say they have none of this and I suspect these folks may be the ones with MAV via central mechanisms.

I only emphaszie this point because one of the reasons I was so reluctant to accept this diagnosis was because I was certain the problem was in my ear and I kept running into statements that indicated that MAV was “central” dizziness. Maybe there is some rational for classifying it this way because the SOURCE of the problem (migraine) is thought to within the hypothalimus. However, by failing to mention that the actual mechanism of the MAV dizziness is often in the inner ear they potentially stear some patients away from a correct diagnosis.

chaz

Hi Chaz,

I saw the top ENT Dr. at Johns Hopkins and he is the one who diagnosed this as some sort of migraine variant. He said all my inner ear tests and funcationality is perfect. He said that migraine can cause inner ear symptoms, but that there is nothing actually WRONG with the functioning of the inner ear. They are setting me up with their top Migraine guy so I’m sure he’ll be able to make heads or tails of this. But from what he said to me, the inner ear has nothing to do with migraine. Some people suffer from inner ear problems AND migraine, which could explain the nystamgus. I do not have nystamus, as evidence from the testing they did. My dizziness is entirely central. So now comes the tough part…how to treat it. In the meantime, my neuro-otologist here wants me to try Elavil. So, I’ll give that a try. But I’d much prefer to get int to see the top neurologist at Johns Hopkins to get on a more specific path. I can’t keep doing this. My life is a living hell!!

Rich