Stupid Question of the day :o)

Ok, here goes: Deep down, the cynical part of me has a hard time believing that a migraine could cause all of this. Again, it has been “locked” in for close to 4 years (with different severity levels though) I will be giving this same list to Dr. Baloh in a few weeks per my visit down to UCLA.

Is there anything on this list that makes you believe/not believe that I am dealing with MAV? Sorry for my cynicism :?

  1. 3-5 seconds when I first wake up where I feel normal, then the fogginess appears and it is with me for the rest of the day.

  2. Low grade humming / tinnitus which ALWAYS gets louder when I feel worse!

  3. Changing in tinnitus tone several times during the day.

  4. Focusing in a meeting is extremely difficult or when talking to someone one-on-one while standing up is extremely unpleasant.

  5. Sometimes I get pressure behind my eyes when very symptomatic.

  6.  Extremely sensitive to light when feeling symptomatic	.						
    
  7. Extreme motion sensitivity, especially with driving (post driving).

  8.  Feel faint quite often in meetings and/or church, etc. Close to passing out, but it has never happened.												
    
  9. Sometimes see lights or “something”, but this does not happen often.

  10. When I close my eyes for nap or sleep, my head gets extremely “busy” and noisy. I have extreme difficulty falling asleep when the fogginess is ramped up.

  11. The severity of symptoms changes by the second sometimes!

  12. Crisp cool air makes me feel better??? Hot tubs make me feel worse ??? (have no idea why :o ) 13) Extreme visual sensitivity in shopping centers, malls, fluorecent lighting, etc.

  13. Noise sensitivity when my symptoms are ramped up.

  14. Extreme fatigue	.					
    
  15. Numbing sensation in mouth area (lips and chin) when symptomatic.							
    
  16. Pulsating sound in left ear which pulsates louder when feeling worse.							
    
  17. Exercise / exerting energy aggravates symptoms for an hour or so.

  18. Occasional burning sensations in feet/hands.

  19. The ground sometimes feels like I am walking on a sponge when my symptoms are ramped up.

sorry to say that a lot of this sounds like my MAV esp 2, 3, 4, 9, 10,11, 13, 14, 15 and 20

probably not what you wanted to hear eh? :?

I also have a lot of these symptoms, in fact most of them, apart from ones related to tinnitus. Even the obscurer ones like feeling better in cool air, but bad in a hot tub!
But I also share your feeling of slight disbelief about MAV, and I know exactly what you mean…

Todd,

Apart from burning sensations and tinnitus, I experience or have experienced everything you have written. I definitely relate to the coolness versus heat as well. I always feel better in cool air. It’s textbook stuff I’m afraid and Baloh will see it from 500 yards, I can almost guarantee it.

Make sure you not only dot point your symptoms as you have here but dot point your history too. He’ll need this in putting together a differential diagnosis and confirming MAV.

Best … Scott 8)

Thanks for the replies.

Scott…I have already put together the sheet you are talking about:

  1. Chronological timeline of dizzyness (ie. one major verigo event that ultimately “locked in” by current state of blah
  2. List of dizzy symptoms which I already highlighted

It is reassuring to hear that some of you have experienced some/all of what I have listed (Not good that you have it also…but good that I can relate to someone :slight_smile: )

I hope Dr. Baloh can give me a diagnosis and frankly, I would welcome a diagnosis of MAV. It would, at least, give me something to aim for to finally get some control and normalcy back in my life.

By the way, giving up beer and chocolate is the real pits…my wife is seeing a side of me she did not know existed :smiley:

Hey Todd,

Are you noticing any changes yet on Celexa and since dropping potential triggers? Probably too early to tell. S

No changes…believe me, you and the rest of the group will be the first to know !

This has been locked in for so long that my expectations are realistic. I am not expecting to see any changes for quite some time as I do not want to get my hopes dashed once again.

Also, I will review my MAV diet with Dr. Baloh in a couple of weeks and he may ultimately do some tweeking to it.

One important piece of anecdotal data…sadly enough, I had gentamiacin shots about 2 years ago. My left ear showed minor to moderate caloric deficiences and we (collectively) decided to try and kill the suspected bad ear and let my good one take over.

Obviously, that has not happened. :frowning:

I know that throws a monkey wrench in everything…but it is what it is. The damage is done and I must move forward with the best possible plan in light of the circumstances.

Todd

I have MAV, and have had many of the same symptoms.

  1. 3-5 seconds when I first wake up where I feel normal, then the fogginess appears and it is with me for the rest of the day.
  2. Low grade humming / tinnitus which ALWAYS gets louder when I feel worse!
  3. Focusing in a meeting is extremely difficult or when talking to someone one-on-one while standing up is extremely unpleasant.
  4. Sometimes I get pressure behind my eyes when very symptomatic.
  5. Extreme motion sensitivity, especially with driving (post driving).
  6. Feel faint quite often in meetings and/or church, etc. Close to passing out, but it has never happened.
  7. Extreme fatigue .
  8. Exercise / exerting energy aggravates symptoms for an hour or so.
  9. The ground sometimes feels like I am walking on a sponge when my symptoms are ramped up.

I hear you Gonzaga, it took me a while to believe this was all migraine as well. It seems very odd at first. Even after I had read everything here and was diagnosed I went off the diet…for about a week. After sausages and red wine, let me tell you, I had all my symptoms come walloping back. Took about 2 or three weeks to get back to baseline.

I have shared all of those symptoms at some point, by the way, at varying degrees of severity.

Sorry Todd, I almost laughed out loud as I progressed through the list - there’s NOTHING there that’s not migraine related and only about two that I personally haven’t experienced - tinnitus (although I do get a muffled sensation sometimes) and the hot/cold thing.

Vic

Have you bugged my house???
Tapped my phones?? :lol:
sounds just like me.

jen
xxx

Your replies are appreciated.

The did not scare me…in fact, they encouraged me some.

After having this “locked” in for so long, I truly cannot picture anything different anymore. I had come to resign myself to the fact that “this is your life now”…make the best of it.

I know I will never be “normal” again (or 100%), but to have some days where I did not feel blah would be very exciting :slight_smile:

I have seen so many doctors and heard so much rhetoric that I am still hesitant about believing I can actually break this spell. Let’s say…I am cautiously optimisitc!

It will be an expensive flight and trip for a simple one (1) hour clinic visit with Dr. Baloh in 2 weeks…hope it is worth it!!!

Todd,
Not to be a downer, but I had read this site thoroughly, and Dr. Hain’s site THOROUGHLY before embarking on a journey to Chicago to meet him. I have to say, I already knew everything he told me…including my prescription for Effexor, which didn’t work for me. I am very interested to hear What Baloh says, and it’s good to make the connection. But I have to say, I’ve learned more here than anywhere else. Now i have doctors who are willing to let me call the shots on what to try, providing it makes sense.
I hope it’s good news, an official diagnoses, and that the Celexa, which he will probably say it what he would prescribe, kicks in soon.
Best,
Kelley

My local neuro-otologist has agreed to let Dr. Baloh call the shots in terms of tweeking my medications. I am hoping the Dr. Baloh will medically manage me via L.A. and my physician up here will write the scripts.

Maybe being sick so long is a blessing…I have very low expectations and look at this as a marathon, not a sprint.

At this point, that is all I can do: Try and eat a concerted MAV diet, tweek medications, get sleep, and PRAY, PRAY, PRAY :smiley:

From what I can gather, my symptoms seem to jive with many of you, so that is encouraging in of itself. And, I have read success stories on here, so I realize it is possible. (Just hard to fathom right now :? )

Hi Todd,

I have or have had all of the symptoms you describe except for two. I don’t have burning in my hands and feet, just tingling and numbness. Also, cold air sends me spinning, especially if the wind in blowing into my ears. And, soaking my head under a hot shower or in a hot bath helps me; however, this is a trigger for at least several members of the forum.

Let’s meet up this week to compare notes. Afternoons are usually good for me.

Marci :slight_smile:

Hi Go Gonzaga,
Good to see you. :slight_smile:
Yes, migraine can do those things, I have experienced most of them and read about the things I haven’t, except for the burning sensations in the hands and feet.

Hi Terry,

Nice to see you again as well.

I have finally heeded your very wise advice and I am exploring MAV with a vengeance.

I have finally started the MAV diet (a couple of slip ups but pretty damn good) for 9 days now…started Celexa at 20 mg 6 days ago.

Quite a few people on here have read my symptoms and have given their affirmative “yes”, these are absolutely MAV symptoms.

I will keep you posted re. my upcoming Dr. Baloh visit as well. Take care in Oregon…we are in the middle of yet another snowstorm in Spokane…ughhh :shock:

I have almost all of the symptoms you have especially (Focusing in a meeting is extremely difficult or when talking to someone one-on-one while standing up is extremely unpleasant) If I have to concentrate on speaking to someone I get very dizzy!