Vertigo

[Al]

I, also, have a 'bad' Eustachian tube...but it is enlarged producing a 'wind tunnel' effect. Doc is going to try a new procedure she learned elsewhere for the tube. She will inject collagen into it, making it smaller in diameter thus reducing the 'windy' effect in my head! Hope it works, a little different than others I guess from what I've read. Very interesting. Best of luck Rose...be persistent, keep at it!

That's a new one on me, Don. Most sufferers go in the opposite direction. What drummer do you march to, anyway...?

Al

[Rose]

UPDATE.

It has been a month since my first post on this subject and over 2 weeks since starting treatment. I am much improved though not 100% Most of the day I feel clear headed but the woolly headedness pops in at times as does the slight fullness in my ears but not to the same extent as before. I am left with some tinnitus which is new so we'll see what happens there. No further vertigo epidodes. The ulcer in my nasal cavity has almost healed according to the ENT after he scoped my nose. I have started to reduce pred and hoping to get back to 5mg in about 2 weeks. Is this too quick? I went up to 40mg for about 2 weeks.

This was a flare and looking back at my posts, fairly classic. Just wondering what might have happened had I listened to my rheumy and believed my symptoms were not related to WG and done nothing to reduce the inflammation. The situation would have got worse, II am sure. Would it then have gone on to my already compromised kidneys and lungs?

[Sangye]

It might be too fast to jump down to 5 mg so quickly. I went through the same thing last year and tapering too fast messed up my adrenals and forced me to taper over the course of 5 months. Miserable!

Mine wasn't due to a flare, just viral labryinthitis. It's even more important for you to take your time on that taper.

[Al]

UPDATE.

It has been a month since my first post on this subject and over 2 weeks since starting treatment. I am much improved though not 100% Most of the day I feel clear headed but the woolly headedness pops in at times as does the slight fullness in my ears but not to the same extent as before. I am left with some tinnitus which is new so we'll see what happens there. No further vertigo epidodes. The ulcer in my nasal cavity has almost healed according to the ENT after he scoped my nose. I have started to reduce pred and hoping to get back to 5mg in about 2 weeks. Is this too quick? I went up to 40mg for about 2 weeks.

This was a flare and looking back at my posts, fairly classic. Just wondering what might have happened had I listened to my rheumy and believed my symptoms were not related to WG and done nothing to reduce the inflammation. The situation would have got worse, II am sure. Would it then have gone on to my already compromised kidneys and lungs?

Rose, you really do sound much better--and, at lest as importantly, on top of the situation! Well done!

It cannot be known what your progression would have been without the prednisone, but, at least as triage, pred is often a life saver, or at least organ saver. But I agree with Sangye: Down to 5 mg from 40 in two weeks is dangerously fast. The reason for slower tapers is that it takes a while for the adrenals to "wake up" and go back to work after the steroids took over their duties. A sharp drop can be really hard on the body.

Flares are hard to predict, but you do sound much better!

Al

[drz]

Last time in the hospital for a flare they jumped me back up to 60 mg from 20 mg only for the five days in the hospital but after my discharged they moved me back to the 20 mg in about two weeks. I guess it depends upon how long you were at the higher dosage and what dosage were you at before the bump back.

[Al]

Last time in the hospital for a flare they jumped me back up to 60 mg from 20 mg only for the five days in the hospital but after my discharged they moved me back to the 20 mg in about two weeks. I guess it depends upon how long you were at the higher dosage and what dosage were you at before the bump back.

As far as the adrenals are concerned, 20 mg, regardless of the absolute size of the jump, is easier to take than 5 mg, coming from a high dosage.

Al

[Rose Cozzette]

Rose, just catching up on the blog, after moving. I have had vertigo since my diagnosis and tho it less now, over 2 yrs pst, it still happens. I figure it is due to some damage from WG. no doc could give me a definitive answer. My PT had me do some balancing exercises when it was bad and it helped. Hve you ever had problems wiht pleurisy? I have had it twice and had to increase the preds and just cant seem to get off it. feeling poorly now. oh and I dont drive much or long distances since I dont know when I will get dizzy. hope this is helpful. another Rose

[Dirty Don]

As far as the Eustachian tube, it's a characteristic of sudden weight loss, lost 45 lbs in 3 weeks in coma & ICU. Duh! Anyway, ENTs have noticed sudden weight loss as in lap band surgery & severe cancer reactions to weight loss tends to create an expansion in the Eustachian tubes...weight loss equals less tissue balance in sinuses. Toss in a little Weggies and I have an interesting salad up my nose! So, doc is going to inject collagen (a relatively new procedure...my Mayo ENT is all exciited as she's never done this procedure for Mayo...she studied under the guy who created it not long ago - gotta love being 'special' or a guinea pig!), as the tube is not responding to weight gain, to reform the Eustachian tube, cut down the 'wind tunnel' effect, and get rid of some of this vertiginous behavior in my sinuses. It's actually pretty minor, just something else to be aware of...and, no, I didn't know about this kind of effect either...then again, I never ever heard of WG until 3 months ago!! LOL

[Rose]

Hi Rose,

No. I've never had pleurisy. I never had vertigo before these recent episodes so I am hoping it will not return and become my new BFF. Is there any medication you take to help?

Sangye, Al, Drz, Thanks for your input on the pred reduction. I am down to 20mgs from 40mgs in about 8 days. From here on in I will slow it down and reduce to 5mgs over a period of about 3 weeks listen to my body and hope all goes well.

[Sangye]

Best of luck, Rose. You've been on pred for awhile so you know what to look for.