Is this how it feels?

First, thank you all so much for this wonderful forum and for all the support and wisdom you provide. It’s one of the best forums I’ve seen.

After four major bouts of vertigo/disequilibrium over eight years, I’m still unsure of my MAV diagnosis. I didn’t trust the neurologist I saw five years ago (very green), and I don’t trust the neurologist I just saw (didn’t seem to care). Furthermore, neither of them seemed convinced about the MAV diagnosis – more like their best guess. I don’t have a family history of migraines, although I have a history of very bad headaches since adolescence (never officially diagnosed as migraines). MRI, CT, ear tests all fine.

This last vertigo bout has been the worst. Three weeks and completely decapitating. Just trying to find out if this is what it’s like for any of you:

– Precipitated by neck tension and throbbing ache in back of head on right side.
– First few episodes feel like ground is rocking beneath me, almost like an earthquake.
– Episodes progress to more subjective disequilibrium. I feel woozy, no ability to balance, sure I’m going to fall over.
– Only happens when I’m standing or walking – never sitting or lying down.
– Worse during daylight; symptoms tend to get better after sunset.
– Often triggered by what I call “bouncy light” or “bouncy sounds.” Shiny floors or counters, light bouncing off mirrors, echoey places – small bathrooms are the worst.
– Increased sensitivity to sound and ache behind my eyes.

Is this how it feels for any of you?

Also, if anyone knows of an MAV specialist in the Orange County, California area (or a neurologist who cares), please let me know,

Thank you for reading this!

Jen

Jen,

I have it all! And I just had a vertigo attack a couple weeks ago after a year without one although I’m dizzy and off balance all the time and have what I call vertigo "jolt’s that literally last a second. I haven’t recovered yet. My first 2 bouts of vertigo last year were 2 weeks apart and after the second one it took 6 weeks to recover and that’s when I went on a low dose of Verapamil that I thought was working but not really now. I’m going back to the Dr. for more testing. I’m not in Orange County I’m in Oregon and my Dr is awesome although he only does mostly research now (which shows he cares) but still sees patients twice a week. I’m gonna see if I should switch meds. The migraine diet is also helpful although they want you to completely give up coffee. Also I think I get really bad when the weather changes and here is Oregon as soon as the rain hits I hit the floor. Might be worth a trip to see this Doctor. He really is good. His name is Dr. Wackym and some of his patients are on this forum. Good luck to you and remember, just when you feel all alone with this problem, YOU ARE NOT ALONE!

Leslie

Dear Leslie,

Thanks so much for your reply! I get the same type of jolts, almost as if someone has hit me in the back of the head or between the shoulders.

This whole thing is so confusing to me. Somehow it’s still hard to understand that the disequilibrium is being caused by migraines. If my headaches had been classified as migraines when I was younger, I think it wouldn’t be so hard to accept. Instead, my parents and pediatrician said they were tension headaches, likely from stress and bad posture. Honestly, I’m still trying to understand what a migraine truly is.

I’m so happy you have a doctor you like. That’s huge! I’ve felt desperate and frustrated these past few weeks. The doctors who want to help (the doc at the walk-in clinic, my opthamologist, the ENT doc), told me I needed to see a neurologist. The neurologist I got into see appeared completely uninterested and slightly dismissive. “You’ve gone through this before and it resolved in a month, so this will resolve in a month.” I was beside myself – “But this is 20 times more severe than anything I’ve gone through before. It’s daily, constant, it’s getting worse. I CAN’T WALK!”

He did prescribe me Topamax, which seems to be making a small dent in the symptoms. However, I still would love to find a doctor I truly trust and who really knows about this stuff.

That’s why it means so much that you responded to me and that you have the same symptoms. I’m still trying to believe, own, and understand this “best guess” diagnosis.

I’ll look into the migraine diet and also see if I can swing a trip to Oregon (think I have free miles on Southwest). Thanks so much for the rec!!

All my best,

Jen

Jen,

I don’t get the headaches too much but when I do I know it is a migraine cause all the Tylenol and Advil in the world won’t stop it and I’ve never had that problem before. This all started after I had my second child. I think my neck has something to do with it too. I have severe degenerative Joint disease in my neck with bone spurs and the neurologist thought it caused vertigo but the other doc doesn’t think so. I also have the high fluid pressure in my ear and a CT show a possible Superior Canal Dehiscence in the semi circular canal of my ear which would require surgery to fix but they are pretty sure it’s MAV. Very frustrating. I was once so full of life and happiness and fun and loved rollercoasters. I can’t even turn in a circle without the room spinning! My doctor always says to me, “You will get better”. I hope he is right. I’ve been fighting the balance problem for 6 years and the vertigo and inner ear stuff for the last year. I also swear it’s perimenopause or something. I get horrible PMS and man am I out of it for 7-10 days before my period starts which doesn’t make for many good days. I’m in the “I wanna give up” stage again and hope to get out of it soon. If you ever wanna email me please feel free and hang in there. Lhurdstrom@hotmail.com

Leslie

— Begin quote from “JenniferK2a”

– First few episodes feel like ground is rocking beneath me, almost like an earthquake.
– Episodes progress to more subjective disequilibrium. I feel woozy, no ability to balance, sure I’m going to fall over.
– Only happens when I’m standing or walking – never sitting or lying down.

Is this how it feels for any of you?

— End quote

Hi Jen,

I can certainly empathise with the above symptoms mentioned. Ive had these exact symptoms now for 7 months, its just unreal! The doctors here have tried me on a few preventative migraine medications which havent really helped too much.

I am still unsure whether I have MDDS or MAV but either way I think they are closely linked. i hope yours resolves sooner than mine has,

Cheers
Rich