Who should I see?

Greetings all and Happy New Year!

The background information regarding MAV and fellow sufferers is so eerily similar to my story it is amazing.

I have been suffering for years, seen multiple doctors who have no clue, tried a myriad of medications…but learned more about this ailment with fellow MAV posts than I have during the past 4 years!

I live in Spokane, Washington (the state)…and I am finally ready to get some control back on my life.

**Who is the premier MAV physician on the West Coast? **

I will travel to other states if there is no real consensus on a hospital/clinic that I should be visiting…but certainly, it would be easier if I could stay somewhat more local (ie. west coast)

Any feedback would be greatly appreciated!

Your dizzy friend in Spokane,

Todd

Welcome to mvertigo Todd.

The top gun on the west coast and probably the entire US of A is Dr Robert Baloh at UCLA. He has been in the migraine game for a very long time and is involved in cutting research in the genetics of migraine. He knows all about MAV, you can be certain of that. He will not bullshit you and will tell you exactly what is going on. Have a read of some points I took from an appt with Baloh (not my own appt) here:

http://mvertigo.cloudapp.net/t/faqs-answered-by-neurologists/1223

Scroll down to the 5th entry.

You can find Baloh here:

http://www.uclahealth.org/body.cfm?id=479&action=detail&ref=2937

Scott 8)

Scott,

Your help and willingness to assist is greatly appreciated.

I have been on this website all day today (while watching bowl games :smiley: )…I am finally ready to whole heartedly get my life back.

It has been 4 LONG years!

Every post on here…you could just insert my name and their symptoms and it would be a match made in heaven (or hell :shock: )

I will be making an appointment with Dr. Baloh @ UCLA on Monday a.m.

I have been dealing with:

  1. 24/7 fogginess, light-headed feeling, disequilbrium for 4 years…though the severity level does change. I never have a “great” day…just days that are better than others. (if that makes sense)
  2. Motion intolerance
  3. Much foggier and louder tinnuitis after activity (ie. catching a baseball with daughter)
  4. Grocery stores…not pretty
  5. Sleepy…check. Heavy head and eyes…check. Yada , Yada , Yada…same as everyone else.

Thanks again…any idea on how soon people can get into seeing Dr. Baloh?

I am the manager of a heart and kidney transplant program in Washington State…if this works, I will credit you on our books for a free transplant at your choosing…ha :smiley: Happy New Year…You are a good man to oversee this site. I will repay you with regaining my health.
Kind regards and your dizzy friend in Spokane, Washington…Todd

Hey Todd,

LOL, look forward to the transplant. How about a new head instead? Can you arrange some new wiring at least? I’d prefer some fibre optics and not these crappy nerves that rely on broken down genetically fried calcium channels – or whatever is going on in there.

Great that you are getting lots out of the fourm. Everything you listed is par for the course. It’s like reading the menu for Christmas dinner: turkey, cranberries, gravy, plum pudding … and asking, “does this sound like Christmas dinner?” Too bad MAV isn’t enjoyable like the dinner is :lol:

Let us know how you get on with Baloh and make sure you try and pin down (and remove) any potential triggers first.

Scott

If I could pick your brain (no pun intended) regarding a few questions I have with my MAV, I would greatly appreciate it.

We will throw in our newest FDA approved device…a total artificial heart that is a “mag-lev” pump. By that , I mean that it is magnetically levitated with all of the bearings, gaskets, titanium, etc hemodynamically suspended in mid air in blood.

Alas, I digress :smiley:

If you get time some time, would love to email you a couple of questions prior to my UCLA visit, which I will schedule on Monday.

tseiger@hotmail.com

Todd in Spokane, Washington (very cold (-6) and very snowy 17" yesterday…ugghhh)

tcs

Hey Todd,

No probs doing email but it might be of more value to chat about it on here for the input of others and for other newbies to read too in case they’re in the same boat. Is that cool with you?

Cheers … Scott (in Christchurch where it’s summer and only 16C)

ps. that new heart sounds like the bomb. :smiley:

Hi Todd, know of you from the other site.

Scott is right. If you don’t mind keeping your questions on the forum here it is a great help to the rest of us.

Have a good day. :smiley:

Sounds good to me…I will keep my questions on the site. If it helps one person, that would be great!

Which leads to two (2) more questions related to my MAV diagnosis :smiley:

  1. Why are mornings so rotten? Waking up is an absolute nightmare. Things eventually normalize to my baseline “normal yucky”

  2. Are pressure changes in BOTH ears “normal” for MAV? ie. feeling like one of the ears is going to pop…then it disipates and may (or may not) migrate to the other side. When symptomatic, the pressure is very bad.

When I feel ok, the pressure is non-existent.

Any ideas?

Thanks guys and Happy New Year. Time to get this s### figured out!!!

Wow you sound just like me - i hate getting up in the morning. It’s been wonderful being off work for the holidays but still feel crappy.

I often wonder why mornings are so awful too and why i have pressure so much of the time and my ears ring off and on but mostly when pressure is at its worst.

What i would like to know is why sometimes i feel totally normal - not very often!!!

another question i have is why when i had a cold for a few days over Christmas i wasn’t dizzy - i wasn’t all anxious - i drove for hours and now i’m afraid all over again!!!

chris

Scott will kill me for saying this :wink: but I have one cup of coffee each morning when I wake to clear up the morning symptoms.

I think it works by dilating blood vessels.

Of course coffee is not good for us MAVers’s but it gets me going in the morning.

Todd,
I have the exact same symptoms as you! THe brain fog, lightheadedness 24/7 which gets a lot worse after any exertion. I can’t wait to hear what Baloh says!! Please keep us posted!