Vertigo

[Rose]

2 weeks ago I experienced my first ever episode of vertigo. Next day I got sinus symptoms with sinus pressure and ear pain. Tthis gradually developed into ear popping and hearing loss and my voice became hoarse on and off. The sinus symptoms continued but seemed to improve after a week or so. During this time I also developed stomach cramps and to cap it all a UTI. This sent me to my GP who treated the UTI

On Monday i decided to contact my Rheumy as I began to have roving muscle pain and pain in the balls of my feet. Blood test were ordered and all was OK with the exception of a bit of a deterioration in my kidney function. He wants another test in a weeks time. He thinks that the problem maybe the body's response to the UTI and sinus infection/allergy or perhaps the generic cellcept is not performing as well as the brand though I sort of doubt this as these symptoms appeared only 1 week after changing to the generic. I was on generic cellcept for 3 months earlier this year and I did have a deterioration in kidney function (no sinus problems) but I am pretty sure that was because of simvastatin

Tonight I have just experienced another episode of vertigo. Like the last one it started with light headedness and then the room was spinning. I was staggering ehen I was walking and had to lay down. I also became very nauseous. It lasted a couple of hours and has left me with a slight headache.

I am now wondering if the vertigo is related to sinus as these symptoms have much improved. Any one experienced anything similar or got any ideas or suggestions.

[Al]

Hi Rose--

I would worry a tad about the kidney functions. You don't mention what kinds of lab work you've had done, and there are many possible explanations. Nevertheless, it is fair to say that kidneys are pretty important organs and deserve serious attention.

It is true that MMF (Cellcept) is a complicated drug to manufacture, and generic versions don't work for everyone. but its effects are usually more long term, so I would be suspicious of its culpability, considering the immediate change.

Your vertigo is an interesting clue as well, though again there are many possibilities what it might be a clue to. It may even that the two are connected, especially if vasculitis is involved. Do get a professional opinion, and quickly. Be sure you tell your doctor all your symptoms. If there is any evidence of inflammation (usually measured by sedimentation rate, C-Reactive Protein, and, when kidneys are involved, creatinine clearance.), you need to get real feisty real fast.

Al

[elephant]

Hi Rose, the vertigo is a concern. You need to rule it out. I had several episodes where I passed, the docs did not have a clue. I really think it was a WG flare. It is wise to rule out other etiology.

[Sangye]

Rose, I had severe vertigo last year that lasted a week and left me with low-grade chronic vertigo. I also had sudden, severe hearing loss with it. It took a couple of excellent JHU specialists to track it all down and treat it properly. Most of my hearing was restored. We don't think it was due to Wegs in my case, but to viral labryinthitis.

I agree with Elephant that your case does sound like active Wegs. It sounds like they need to up your pred to get the inflammation under control quickly while figuring out what else to do. I had to go on high dose pred to save my hearing.

[Rose]

Thanks Al, Elephant, Sange for your quick responses.

MY CRP, although slightly elevated (7) shows no change from 10 weeks ago and the ESR is normal, just. My blood creatinine went from 82 yo 100 and protein 8.3 to 9.8. This has concerned my doctor and he is checking my kidney function again on Tuesday. If it has improved without treatment then his thinking is that it was my body's reaction to infection as apparently inn autoimmune diseases an infection can "awake the dog". If worse he says it was probably from the change to generic. I wont settle for that assumption as, it was only for a week and I was off cellcept at one point for 2 weeks with no effects.

This morning I feel slightly nauseous and light headed and my ears feel a bit full. Just my luck it is Saturday and my doctor is not available. I was toying with the idea of upping the pred (I take 5mgs) until I can talk to him but think it might interfere with Tuesdays blood results.

[Al]

Rose--the creatinine is not high, yet. But the sudden rise is a concern, particularly along with the protein spike. Does the doc know about the vertigo? Not sure I'd buy the Cellcept hypothesis, at least not without better a better theory.

Al

[Rose]

UPDATE.

AL....my creatinine and protein levels have begun to drop without change in medication and all other markers were fine. The muscle pain etc has almost gone. I did mention the vertigo to both my GP and Rheumy, Neither seemed concerned and I think, they think it is a mild sinus problem which will rectify itself. I had another very bad attack the other day which lasted around 2 hours. this time was worse than ever as I vomited and was sweating profusely. I have made an appointment with my ENT whom I will see tomorrow. I am stuck at home afraid to drive and go out in case I have another attack. It happens without warning. It is scary!!

[Chris G]

My understanding is that vertigo is caused by the inner ear (this is where our balance is controlled). This would mean that the inflammation (fullness) you feel in your ear(s) is the cause of the vertigo. I experienced similar symptoms of vertigo when my eustachian tube was closed for 6 months last year, prior to diagnosis, and treatment. Although my vertigo symptoms were fleeting - only lasting a few minutes. I TRULY truly feel for you, because I know how debilitating it can be. I had the spins, and only FELT nauseous, but never did vomit.

It sounds to me like your wg is flaring in many areas, even if your labs do not show it. I sincerely hope you can get that miserable vertigo under contol quickly.

[ScreaminMeanie]

Rose, I've experienced severe vertigo fairly regularly for the last 10 years, and sporadically since about 30 years ago - doesn't seem to be related to the WG. I've never been formally diagnosed, but I believe I have Meniere's disease. After the really bad vertigo (can't see, can't walk, horrible nausea) started happening regularly, my mother-in-law turned me on to meclizine (found in some over-the-counter anti-motion-sickness drugs). I asked my rheumy about taking it, and she said there's no reason not to. I now always have some in my purse, and in my nightstand. If I feel an attack coming on (usually starts with double vision for me), I pop 2 25-mg pills with plenty of water (just chewing them doesn't get it into my system fast enough). It still takes half an hour or so before I can open my eyes, sit up, or do anything, but at least the worst symptoms go away relatively quickly. I'll still be foggy and light-sensitive for about 24-36 hours, but at least I'm not in agony and/or throwing up. It could just be bad migraines, but I never get the headache part until after the vertigo is gone, and the headaches aren't much worse than a garden variety headache. In any case, the meclizine is a lifesaver for me, and you can get it at any drugstore. Just ask the pharmacist - they usually keep it behind the counter, but it doesn't require a prescription.

[Rose]

Thanks for the info ScreaminMeanie. I will certainly look into that.

I saw my ENT yesterday and he sent me for hearing and balance test both of which were fine though I did struggle to balance with my eyes closed but did mange it without falling to either side. Also my hearing which has not been tested since before diagnosis is well within normal limits with just a bit of a problem in just the very high pitches. I was sort of surprised about as I had bad ear problems before diagnosis - even going totally deaf at one point - and was sure there would be problems there.

He wnts me to have an MRI of my brain which is booked for Monday. Is he over reacting? I think he is doing this because of WG history. Not too happy about that but I guess better sure than sorry. Meanwhile he has incrersed prednisone to 40mg daily for 5 days. Because of the accompanying symptoms I am pretty sure now that this has been a flare. I am upset with my rheumy as because my bloods were ok I think he did not take me seriously.