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Old 08-06-2007, 05:56 PM   #1
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Thumbs up My Doc Appointment Today

well my dizzy friends - My long awaited specialist appointment has been completed! I saw Dr. Robert Baloh from UCLA today and he diagnosed me with MIGRAINE. No inner ear problem whatsoever. All of my symptoms are migraine related and until I get the migraines under control, the dizziness and ill-being will continue. I wasn't too shocked since I had read so many migraine stories from many of you out there (hbep, Scott, Howie, etc.), but I was a little surprised to hear that I don't have, nor did I ever have any inner ear problem. Basically he said, that doctors often diagnose us with "Labyrinthitis" when they don't know what else it is.

I am happy about this. I need to start on migraine meds - see which one works for me, and only take them for a short time to see what happens. Many people stop taking the medication after a few months and are "dizzy free". I will always have to deal with migraines - he made that clear. It is after all, a genetic disease. That is the only "bad" part so to speak. But at least KNOWING what I have has helped me cope tremendously. He told me that VRT's would not help me in any way, and in fact they could just make me worse.

He was very knowledgeable and helpful. I didn't feel rushed. He told me that he has many people WEEKLY come in to see him - all with the SAME symptoms as me (constant imbalance, fatigue, headache [or not], weird vision, etc.) and in 99% of the cases it is MIGRAINE.

 
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Old 08-06-2007, 06:24 PM   #2
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Re: My Doc Appointment Today

Hi Missy,

Good to hear you have a dx. What meds did he give u?
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Old 08-06-2007, 06:34 PM   #3
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Re: My Doc Appointment Today

He mentioned starting me off with "Diamox" - a very "benign" and soft drug, yet very successful with migraines. If that doesn't do the trick, we'll try something else.

I also told him I take Ativan on my bad dizzy days and he said it was okay to take those in moderation (no more than 3 a week if necessary). Hopefully I won't need those anymore!

 
Old 08-06-2007, 06:44 PM   #4
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Re: My Doc Appointment Today

Glad to hear it went well! Did he say how long that you have to take them to notice a difference? My ENT gave me some Immatrex on Friday and i've only taken one since it almost seemed to make my head hurt worse and then i still had a headache all that night. Have you always had migraines? I don't really know if that's what i'm having, but i've never had bad headaches really. I think mine may also be from taking xanax at night?? Hope you find a good one that works and you get all better!

Last edited by alexiwildchild; 08-06-2007 at 06:47 PM.

 
Old 08-06-2007, 06:47 PM   #5
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Re: My Doc Appointment Today

Good luck with the meds. Mine have not started to work yet.......It will be a week tomorrow......hopefully soon!!! I had very little coordination and balance this past weekend but am feeling better now....I have taken some acetaminophen today to help combat the symptoms. Seems to be working but not for long.
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Old 08-06-2007, 07:12 PM   #6
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Re: My Doc Appointment Today

Alexi - he didn't really say how long it would take to work. Good question though - I'll have to read about that online somewhere. I obviously want to find a good local migraine doctor now that I know that is what I have, so I will ask him or her as well.

Dr. Baloh said that I have ALWAYS had migraines. I never knew I did. He said that I have a family history, and that I basically woke up a sleeping monster by various triggers that may have all happened at once. He gave me a list (unlike any other "lists" I have read on the internet) of triggers and sure enough, almost all of them matched my lifestyle and what I have been doing in the past year to cause this "outbreak". I knew about some of the triggers but not all of them (like humidity).

I'm sorry to hear about your headaches. If you are taking xanax for help with sleeping maybe you can try Ativan instead? It doesn't give me headaches that I know of.

 
Old 08-06-2007, 07:36 PM   #7
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Re: My Doc Appointment Today

Quote:
Originally Posted by missy7777 View Post
Alexi - he didn't really say how long it would take to work. Good question though - I'll have to read about that online somewhere. I obviously want to find a good local migraine doctor now that I know that is what I have, so I will ask him or her as well.

Dr. Baloh said that I have ALWAYS had migraines. I never knew I did. He said that I have a family history, and that I basically woke up a sleeping monster by various triggers that may have all happened at once. He gave me a list (unlike any other "lists" I have read on the internet) of triggers and sure enough, almost all of them matched my lifestyle and what I have been doing in the past year to cause this "outbreak". I knew about some of the triggers but not all of them (like humidity).

I'm sorry to hear about your headaches. If you are taking xanax for help with sleeping maybe you can try Ativan instead? It doesn't give me headaches that I know of.

Hey! thanks for the reply, I hope you find a good local dr as well. I am supposed to have a neurologists appt on the 21st now, would they have that sort of list of triggers i wonder? Was Dr. Baloh a neuroto or a neurologist or ENT? I am trying to find the right dr for me, and yet no luck so far. I tried to have my ENT prescribe the Ativan for dizzies and anxiety, but he thinks since I'm already taking a small amount of the xanax that it wouldn't be a good idea...? I just want something to help!

What kind of "headaches" or migraines do you have? i've read all this about they are characterized by being one-sided, my headaches are all around my temples and above my eyebrows usually, not just one side. i seem to wake up with one. sometimes i will have a sharp pain up the front of my forehead, but it's not a headache. i dunno, i have no clue about this stuff. i've tried to research it, and it doesn't seem like i'm having a "migraine". Has your dizziness been 24/7? Just seems weird that it would be associated with a migraine (in my case my vision problems/dizziness/unsteadiness is all 24/7).

i hope the Diamox works wonderfully for you, seems like the research says alot about it
Thanks again! Best of luck

 
Old 08-06-2007, 07:50 PM   #8
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Re: My Doc Appointment Today

I know - believe me, I too find it weird that stupid "migraines" can cause all of the grief I have been going through. My dizziness isn't exactly 24/7, but it sure is MOST of the time. I rarely feel well enough to do any working out or physical activity so it is present most of the time. My headaches do tend to be on the right side, but they move around too and can also be all over.

Dr. Baloh I think is both a neurologist/neurotologist. I know they are different, but he is an expert on dizziness and if you do an internet search on his name, you will find he has been doing research for a very long time and has written a ton of articles and has done lots of studies. So I am taking his word for it - that in fact I do have migraines that are causing all of my health woes. It doesn't make sense to me at all, I know. But I am certainly eager to try out some migraine meds to see if my dizziness subsides.

I am still amazed that he said that most people who come in to see him, thinking they have some sort of "inner ear" problem mostly all the time have migraines and they don't even know it. So alot of people on this board are probably in the same boat I'm afraid, and perhaps barking up the wrong tree. It's just a very mysterious disease/disorder (migraines).

 
Old 08-06-2007, 08:05 PM   #9
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Re: My Doc Appointment Today

Hi Missy,

Great post and very reassuring coming from the migraine guru himself. Also fab to hear that it is seemingly quite easy to clean up the vestibular side of this but not necessarily the headache part. I'll take the odd headache any day over constant vestibular garbage. Hearing your dx and what Baloh said makes me feel a lot better about my situ too. The more you start understanding migraine and getting "in touch" with how you are reacting to things around you, the more you will wonder how you never saw this before. This has been my feeling on it.

Again thanks for posting this. I'm going to have a look into this drug he told you to start on later today. Please keep me (us) updated on the drug outcomes as I still haven't arrived at a place where I feel this thing is under control.

Just getting over a chest and sinus infection now and it has pushed my vestib sysmptoms through the stratosphere today. I can't even read a book without spinning out. Did you discuss anything about potential triggers? Food or viral illnesses for example? I'd love to hear more about the whole trigger thing from onset to triggers that aid in keeping it alive.

What dose of Diamox did he tell you to start on? Is it something you are supposed to increase over time?

Best to you ... Scott

Last edited by studyin; 08-07-2007 at 12:59 AM.

 
Old 08-06-2007, 08:55 PM   #10
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Re: My Doc Appointment Today

Very interesting! Being that our symptoms were identical I am wondering if migraines are what I am experiencing as well and not so much tension headaches. Although my headaches seem to fit a more of a tension headache (meaning not so much one sided) More like pressure and fullness all over my head, Which I always attruibuted to myTMJ problem as we spoke about several times.
Anyway I am so happy to hear you "finally" have some answers and are (fingers crossed) one the road to a full recovery.
Keep me updated as I am interested to hear the results from the new medication. My best to you! Boxerlover

 
Old 08-07-2007, 12:33 AM   #11
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Re: My Doc Appointment Today

Baloh really is brilliant.. he's on top of it.

He's a neurotologist, neurologist and geneticist. He seems to have dedicated his long career to finding the causes (and treatments) for all sorts of ataxia, vertigo and migraine syndromes.

You only need to take one look at the articles he's written on pubmed to see that he really is at the top of his game.

I probably don't make it any secret that I think almost everyone with these symptoms consisting of some (not necessarily all) of headaches, vertigo, dizziness, numbness, tingling, brain fog, visual issues all have the same condition.

Obviously BPPV and VN are quite common, Menieres is very very rare (and overdiagnosed and that) and may prove to be a migraine syndrome with hearing loss anyway.

People spend their lives looking for bigger and better conditions to blame.. chiari malformations, tumours, devastating autoimmune diseases.. and it all comes down to one thing.. migraine. So many still refuse to accept that migraine causes everything that makes them feel so dreadful. One roadblock really getting in the way is the IHS criteria for migraine.. which people like Baloh are eventually going to assist in relegating to the garbage bin where it belongs.. can't be soon enough.

Then there are always those that try and explain the symptoms with combinations of conditions.. when added together add to an extremely remote chance of being correct. Is it more likely you have two rare conditions, or one really common condition? The answer seems obvious.

Last edited by amww; 08-07-2007 at 12:35 AM.

 
Old 08-07-2007, 08:09 AM   #12
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Re: My Doc Appointment Today

I believe, that, up to some edtent, most of the long term undiagnosed cases involve a migraine factor.

Migraine is a well known condition, specially on it's headaching form, but, few people is aware, even lots of doctors, that it can "evolve" to MAV, without the headache, giving all sorts of trouble.

I even believe that slight cases of VN are quite more common than they seem, but without the MAV or any other tampering factor, this cases do recover in weeks or a few monthes, and the people affected rarely get any other vestibular trouble through their life.

And this is why most doctors are surprised(even some neurotologyst like mine) that showing a practically complete compensation after some vestibular injury(like in my case), the dizzies are not gone in a few months time span.

Why they all(most of them anyway) leave MAV to the end of their list, scaring people with Meniere's, MS, brain tumors, or something in that rank?

Maybe because they have to justify for their salaries...

In the end I truly beleive that, if you have experienced this vestibular issues for a long time more than a year, without much improvement, and without a clear degenerative condition like Menieres, Auto Inmune Disease, or even some of the other scary stuff, chances are that some Migraine factor is involved, more so if you've experienced any kind of Migraine attacks during your life.

So, even as I'm against making this a migraine pills marathon, I'd suggest that, at least on an entry level, no caffeine B-12 vitamins, good sleep, most long time vestibular patients should give it a try to the MAV approach.

 
Old 08-07-2007, 10:03 AM   #13
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Re: My Doc Appointment Today

Here is the list that Baloh gave me on triggers. I was surprised that I didn't see some of the well known ones (caffiene), but of course just because it is not on his list, doesn't mean it won't be a trigger to some. I even asked him, "why can't I drink even ONE beer anymore without feeling dizzy?!" and he basically said/implied that he didn't think it was the beer that was causing the dizziness. He sort of poo-pooed that. He basically said that because I am not well (have migraine and am currently NOT treating it), that is what is making me dizzy from drinking beer. It's like drinking when you have the flu. You're body just says NO - wait until I'm well!! So that was kinda good news because I do like to have a beer or two sometimes and to know it's not such a bad thing was kinda cool.

Anyway, Baloh's Migraine Triggers (notice that stress is number ONE). AHA!!

1. Emotional Stress
2. Menstruation
3. Foods (chocolate, certain fermented cheeses, red wines [particularly fortified wines], alcohol, fried or fatty foods, MSG)
4. Hunger
5. Sleep Deprivation
6. Certain medications (ntirates [nitroglycerin, isosorbide dinitrate], reserpine, histamine, nicotonic acid, oral contraceptives [sometimes they help however])
7. Climate - changes in weather, particularly hot humid weather
8. Bright lights - particularly with prolonged exposure

Seeing these things made me totally say, "AHA!!" I mean, I knew about migraine triggers, but it is sort of like a puzzle coming together.

I'll put more info on a different post, but one more thing that he mentioned that totally floored me was that for those people who have always been sensitive to motion (car sickness ever since childhood, seasickness, etc.), most likely, most PROBABLY, that person is a migraineur. That is ME. I have always been motion sensitive. Also of course, another BIG factor, is if you have anyone in your family with migraines - bingo - you're probably gonna have them too. My brother has had migraines all of his life and I was never bothered with them....until now

Last edited by missy7777; 08-07-2007 at 10:04 AM.

 
Old 08-07-2007, 10:27 AM   #14
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Re: My Doc Appointment Today

Scott – I will DEFINITELY keep you all posted on what migraine meds are working (and not). I am really interested in seeing if this “Diamox” med (a form of diuretic) is going to work. Wouldn’t that just be wonderful? I’m trying not to get my hopes up too high though – I have to keep remembering that controlling migraine is trial and error. He did say that he didn't want to start me off on a triptan? Was that the word? He wanted to start soft, and if need be, gradually increase it to the "harder stuff".

About sinus infections and such (I too have tons of them, plus allergies). Baloh actually kinda poo-pooed that notion as well. He kind of looked down on the whole inner ear dilemma. I think he has WAY too many people coming in thinking they has some sort of ear thing and it’s not at all. I asked him, “If I don’t have an inner ear condition, why do my ears feel so full and pop all of the time?” He said, first of all, allergies and such cause MIDDLE ear problems, not INNER EAR problems, and middle ear problems don't cause dizziness (which I thought was interesting too for some reason). And he basically said they are not related at all to my dizziness. WOW….I know. I was scratching my head on that one. I just bought a whole bunch of dust mite allergy crap (carpet powder, spray, a/c filters, etc.) thinking that my allergies were contributing to my dizziness. But Baloh says NO. Go figure. He also said that a lot of people diagnosed with Meniere's are mis-diagnosed. They don't have Meniere's at all - they have MIGRAINE.

He did not give me a dosage. In fact, he didn’t give me anything. He said he would have his “report” sent to my ENT doc in a week. So I didn’t really get any goodies yet, and yes, I am still not feeling so great (although better mentally because I know something now). He didn’t mention increasing the dosage over time. In fact, he was more of the mind set that after a few months you stop taking it while the monster is dormant and under control. I even asked him, can I stop taking this medication and have the migraines stop too? And he said, “Yes, yes, that is the goal! The goal is not to be on migraines for your life. It is to put the monster to sleep again (those are my words – the monster bit). We basically have too much acid on our brains and we need to neutralize it and make it dormant again.

Last edited by missy7777; 08-07-2007 at 11:10 AM.

 
Old 08-07-2007, 10:32 AM   #15
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Re: My Doc Appointment Today

Boxerlover - I also asked him about TMJ and guess what. Yep - he poo pooed that as well! Ha ha ha! He said he was amazed about how many people think their dizziness and other problems can be caused by TMJ and it's not. And he also didn't like the "sinus headache" or "tension headache" words either. He said alot of people get those confused with migraines. Those are actually migraines, not sinus/tension headaches.

 
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