The NFC B-Day Chat Thread

[sourland]

Hi Sour, hope you are mid-way through an enjoyable Friday!

We had a great day. We went to the Jersey Shore - Island Beach State Park to be exact. We never went last year because we did not want to leave Maggie for long periods of time.

 

[DigMyChicks]

Well, this is an ENT so you’d think he’d know the difference. I agree as a patient we definitely have to be informed and ask the questions; I will definitely advocate for myself.

Doctors don’t like it when you advocate for yourself. It makes them look like idiots.

 

[Cynthia12]

I dunno yet Debby, I suppose it depends on what happens with the tests. For clarification I don’t have vertigo every day. What I do have is random moments when I feel unsteady like I’m a little tipsy, particularly when I’m tired. Mostly not knowing if/when vertigo will happen, especially in a public setting, is what’s unsettling. As far as I know the only guaranteed way to prevent vertigo is to cut a nerve and fix it permanently.

Thanks Cynthia, sending good mojo your way too! I asked about vestibular migraines today, but my symptoms are accompanied by longer bouts of vertigo than is typical with the VM. Also, I have frequent ear fullness. Supposedly vestibular migraines can be a part of Ménière’s, and I think Menieres has become a catch all for,“damn, I have no idea what’s wrong lady.” I disagree with the doctor that the diagnosis is cochlear hydrops though, it doesn’t involve vestibular symptoms like vertigo. I’m going to bring this up at our next appointment.

I do have chronic Vestibular Migraines.. meaning I'm woozy/dizzy, off balance, every single day. I have told them numerous times that my ears feel..full. Another example I give them is..like your driving uphill for a while and you feel like your ears need to pop. That was the best example I could give. . Plus the insane ringing. I've tried the Toporamate, couldn't do it. Amitriptyline is helping a lot, probably because the main cause for this is stress. I'm a worry wart.

 

[Cynthia12]

Well, this is an ENT so you’d think he’d know the difference. I agree as a patient we definitely have to be informed and ask the questions; I will definitely advocate for myself.

You have to. Like I said..been to many..I saw three ENT's before the one in SLC..from U of U.

 

[Cynthia12]

Have to add..that everyone experiences VM in different ways. Food isn't a trigger for me. But a lot of us have pretty similar symptoms. Here's one I'm finding a lot do. I cannot take my meds like I used to. I'm super super sensitive to medication. I now take my BP medication..get this...in tiny bites. Watch my BP to see if I need it again the next night. It works that well with just a tiny bit. That's just one. Have had to give up statins all together. Can't take pain medication..well..half of an Aleve which makes me feel awful. When trying to explain my illness to neurologists, I tell them I feel like I've taken 3 Lortab! I feel like that most of the day. Off balance. Had one chuckle and say, some like that!

 

[igorsMistress]

Doctors don’t like it when you advocate for yourself. It makes them look like idiots.

Yup, which is why I’ve left a few. My primary is great about that though, it’s one of the things I like most about her.

I do have chronic Vestibular Migraines.. meaning I'm woozy/dizzy, off balance, every single day. I have told them numerous times that my ears feel..full. Another example I give them is..like you’re driving uphill for a while and you feel like your ears need to pop. That was the best example I could give. . Plus the insane ringing. I've tried the Toporamate, couldn't do it. Amitriptyline is helping a lot, probably because the main cause for this is stress. I'm a worry wart.

I can definitely see how stress can exacerbate the problem. I’m so happy you’ve found something that helps you at least a little bit.

 

[ShrekDawg]

 

[igorsMistress]

Have to add..that everyone experiences VM in different ways. Food isn't a trigger for me. But a lot of us have pretty similar symptoms. Here's one I'm finding a lot do. I cannot take my meds like I used to. I'm super super sensitive to medication. I now take my BP medication..get this...in tiny bites. Watch my BP to see if I need it again the next night. It works that well with just a tiny bit. That's just one. Have had to give up statins all together. Can't take pain medication..well..half of an Aleve which makes me feel awful. When trying to explain my illness to neurologists, I tell them I feel like I've taken 3 Lortab! I feel like that most of the day. Off balance. Had one chuckle and say, some like that!

I haven’t ever had lortab, but I would describe my unsteadiness as being tipsy/somewhat drunk. It’s not dizzy, but how do you define the difference to someone who isn’t feeling what you are?

 

[igorsMistress]

 

[ShrekDawg]

How are you?