Been a while since I’ve participated consistently on this board. Hope everyone is having a good summer…relatively speaking with this kind of ailment.
After 3 1/2 years, I’ve found the right doc for me. Had an appointment last week, and I’m more confident than ever that we’ve put this puzzle together, and will drill down to the right treatment plan. Here’s a quick synoposis of my diagnoses:
MAV - No doubt. It’s there…it’s real…it’s a nasty challenge…but I’m confident I’ll find a way to win this battle.
Cervical Vertigo - Too much evidence based on too many factors. Physical therapy will be the main treatment method.
Palatal Myoclonus - and a big one. The ear clicking can be heard from 10 feet away when it’s firing away at peak level. Lots of throat activity in conjunction with the clicking. This is most likely due to head trauma back in 2005. Hard to treat.
Possible superior canal dehiscence. We’ll be testing for this next week. We’ll to the VEMP first. If there’s evidence based on the VEMP, we’ll do the CT scan of the temporal bone to confirm
Based on the fact that my hearing only fades at the high frequencies, and has stayed virtually the same since 2005, we’re ruling out Meniere’s for now.
Regarding MAV, I’ll admit it, sometimes I get a little cocky. It’s not often…maybe 2 or 3 times per month. When I’m feeling good, I’ll have what many consider to be a “normal” meal in our contemporary society, but for us, it’s laden with all that is wrong. I’ve found that the big issue for me is the dreaded “natural flavors”, and it can be hidden in all sorts of things. Interestingly enough, one item that was doing a number on me—which many consider to be very healthy—was a hybrid, off the shelf cranberry/grape juice drink I was drinking at times as part of my breakfast. About 2 hours later, I’d be hurting. Couldn’t figure it out. My wife and I talked about it. We arrived at the conclusion that natural flavors----right in front of my face on the label----was the culprit.
A month ago, I stopped drinking it. Instead, I mixed up a drink in the blender consisting of spinach, and all sort of fruits and vegetables with filtered water. I’d drink two full 12 oz. glasses of it as part of my breakfast. Lo and behold…no MAV or migraine-type of hit.
I guess those vegan types know what they’re doing in a whole bunch of different ways.
Hope all is well with everyone. Keep trying new things…and never give up.
And I’m so glad you hit on a doc who may be able to diagnosis you and come up with a treatment plan for you.
I’m going to have to look up some of these diagnoses, i’m not familiar with them.
thanks for the idea on the spinach based drink. i used to love my breakfast drink but had to give it up because it was yogurt/banana based with a protein powder that, when looking at the small print had soy in it (allergic). i can’t imagine what this spinach concoction must taste like, but i’m chomping at the bit to give it a try.
Best of luck with your upcoming testing.
Julie
P.S. What kind of spinach do you use? Baby, frozen?
And I’m so glad you hit on a doc who may be able to diagnosis you and come up with a treatment plan for you.
I’m going to have to look up some of these diagnoses, i’m not familiar with them.
thanks for the idea on the spinach based drink. i used to love my breakfast drink but had to give it up because it was yogurt/banana based with a protein powder that, when looking at the small print had soy in it (allergic). i can’t imagine what this spinach concoction must taste like, but i’m chomping at the bit to give it a try.
Best of luck with your upcoming testing.
Julie
P.S. What kind of spinach do you use? Baby, frozen?
— End quote
You hit the nail on the head about soy. Soy is a tough opponent. I couldn’t win that battle. Gave up soy about a year ago.
The spinach I use is in a bag. It’s called “Fresh Express” spinach. No preservatives. Total net weight is 9 oz./255 grams. I mix it in with cucumbers, berries, honeydews, and some frozen peaches. I’ll have a large bowel of oatmeal along with it (oatmeal has never bothered me). I’ll take a multi-vitamin and the daily dose of verapamil at the same time.
Food is real, real tricky with this ailment. I experimented on myself after Dr. Hain diagnosed me with MAV about a year ago. A lot of the usual suspects that trigger MAV definitely hit me hard. Some didn’t.
Thanks MS, that gives me a platform. 24 oz of this stuff PLUS a big bowl of oatmeal (i’m crazy about oatmeal (Irish steel cut) i eat it twice a day. You are starting to sound like a big guy
This is going to be fun to play with. I would NEVER have thought of cucumbers!
Glad you are feeling Confident about your diagnosis. That is…in some respects half the battle. Atleast you know and have a name for it. It took me 14 years to get a correct diagnosis.
Thanks MS, that gives me a platform. 24 oz of this stuff PLUS a big bowl of oatmeal (i’m crazy about oatmeal (Irish steel cut) i eat it twice a day. You are starting to sound like a big guy
This is going to be fun to play with. I would NEVER have thought of cucumbers!
Julie
— End quote
As you know, people react differently. It’s working well for me right now.
No…not that big of a person. I’m only a shade over 6’ and currently weigh about 190. I drink quite a bit of that because I’m working out in the morning. It’s been a good summer thus far for the stationary bike, running, and sit-ups. Running is much, much better this year than last year. Couldn’t run in 2005 and 2006. Ran about 3 1/2 miles this morning, and did about 250 crunches afterwards. It’s a relief after struggling for so long being very limited in what I could do.
Glad you are feeling Confident about your diagnosis. That is…in some respects half the battle. Atleast you know and have a name for it. It took me 14 years to get a correct diagnosis.
