View Full Version : Vertigo
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.
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
10-15-2011, 02:57 PM
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
10-15-2011, 03:29 PM
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.
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.
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
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
10-27-2011, 03:40 AM
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
10-28-2011, 01:36 PM
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.
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.
Rose, vertigo can have a number of causes. Sometimes there are mechanical impediments in the inner ear, but vascular anomalies are also possible (those of the brain are definitely worth knowing about; come to think about it, vasculitis anywhere is worth knowing about). The latter is presumably why the MRI is in order. The intermittent aspects in your case suggest this is worth looking into. Still, one rap on Wegener's is its association with things like ear blockages. I would say that this possibility shouldn't be ruled out. Vertigo may be mild, fleeting, and not easily explainable. Yet it may also be revelatory and important. Keep on top of it!
Al
ScreaminMeanie
10-30-2011, 07:29 AM
Al is so right. I did have an MRI after the first few attacks. It showed nothing, which is what led me to the diagnosis of Meniere's disease. Two things that have helped me are: 1. lower sodium diet, and 2. avoid aspartame like the plague.
UPDATE
I have just received the result of my MRI scan which I had done on Monday. Seems I have matsoiditis on both sides as well as an ulcer about the 15mm diameter in my nasal cavity. MY ENT doctor thinks it is probably vasculitis as an infection would have affected my hearing and that seems OK but he is covering me with antibiotics just to be safe. I have also to stay on 40mg of pred daily, commenced nose drops and cortisone nasal irrigations twice daily as well as bactroban to my nostrils.
I am still very "wooly headed", still have balance problems, still have sinus fullness and fleeting ear pain though since upping the pred I have not had another episode of vertigo....so far at least.
This is my first flare since diagnosis and treatment. I told my Rheumy I thought I might be flaring after suffering symptoms for about 10 days. He checked by blood which came normal as did the ANCA test which was done last week. Both rheumy and nephrologist told me I was not flaring and did nothing! There are no vasculitis centers and so no WG experts here in SA. Luckily I am fairly well informed thanks to all on this site!!!
UPDATE
I have just received the result of my MRI scan which I had done on Monday. Seems I have matsoiditis on both sides as well as an ulcer about the 15mm diameter in my nasal cavity. MY ENT doctor thinks it is probably vasculitis as an infection would have affected my hearing and that seems OK but he is covering me with antibiotics just to be safe.... Both rheumy and nephrologist told me I was not flaring and did nothing! There are no vasculitis centers and so no WG experts here in SA. Luckily I am fairly well informed thanks to all on this site!!!
Good you got this dealt with, Rose. Mastoiditis is nothing to sneeze at, regardless of the cause. Hearing is a very useful sense to keep around! Did they take a culture? This can determine bacterial content. As you consult with those doctors who should know better, it is valuable to remember that flares come in many forms, not all of them identifiable from ANCA tests. In fact, a bacterial infection can sometimes trigger ANCA proliferation, so it is advisable to stay on top of the situation!
elephant
11-04-2011, 11:21 AM
Your ENT seems to be on the ball, can he recommend another doctor who is knowledgeable about WG. My CT scan of my head demonstrated mastoiditis, and I too was given antibiotics but I know WG was behind it all. I wish you the best tring to find a decent Doctor who is knowledgable.
Did they take a culture? This can determine bacterial content.!
No...where would they get a specimen from? Dont have any ear discharge infact have had only fleeting ear pain and no hearing loss and this is why he thinks the inflammation is vascular...and the fact that it is in both mastoid bones. Just a lot of weird facial, sinus sensations, woolly headedness, unsteadiness on my feet and the vertigo...not for a while. Treatment started about 28 hours ago and I am feeling and looking so much better.
:thumbsup:
Your ENT seems to be on the ball, can he recommend another doctor who is knowledgeable.
We actually touched on this. His response was there are no WG experts here in SA because of the set-up of the health system. it is either private doctors running their business or the state hospitals service run by the government for those who do not have insurance and this is very underfunded. The doctors there are from the private sector working for less for a few hours per week. I did go to a rheumatology clinic at one time (was having problems with insurance paying for me medication...another story!) and I was the first WG patient there in over 3 years! I waited over 5 hours to see a doctor. It was a very rushed appointment and had instructions to come for a follow up in 2 months? What was I do do should a problem arise. My husband says he would rather go bankrupt and we never went back!
The insurance is now paying but we are almost bankrupt in the meantime. I had to laugh when the ENt then suggested that I go and visit my daughter in the USA and pop into one of the vasculitis centers and see one of the experts there. We are living in different worlds!!
We actually touched on this. His response was there are no WG experts here in SA because of the set-up of the health system. it is either private doctors running their business or the state hospitals service run by the government for those who do not have insurance and this is very underfunded. The doctors there are from the private sector working for less for a few hours per week. I did go to a rheumatology clinic at one time (was having problems with insurance paying for me medication...another story!) and I was the first WG patient there in over 3 years! I waited over 5 hours to see a doctor. It was a very rushed appointment and had instructions to come for a follow up in 2 months? What was I do do should a problem arise. My husband says he would rather go bankrupt and we never went back!
The insurance is now paying but we are almost bankrupt in the meantime. I had to laugh when the ENt then suggested that I go and visit my daughter in the USA and pop into one of the vasculitis centers and see one of the experts there. We are living in different worlds!!
Rose, I am quoting your entire post in my reply, as you touch on an important issue for all of us: The vastly different experiences in medical care among us in different parts of the world, and how, even with insurance (and many here have no, or very inadequate coverage), many of us face financial hardship. I realize that political realities make whatever we say here unlikely to have a major impact; still, I hope that this becomes more widely discussed.
Al
HopeinTN
11-09-2011, 03:43 PM
Wow. Good info to have. I was just diagnosed last month. After reading these posts, my Wegs may have started far before I realized. I had a crushed Eustacian tube in my ear for around 5 months back in 2008 and no clue as to what caused it. Hmmm, something to share with my doc. Thanks all and good luck Rose! Vertigo is horrible and I also found that the Meclizine saved me.
Dirty Don
11-09-2011, 05:19 PM
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!
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
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
11-12-2011, 12:23 PM
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.
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
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.
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
11-16-2011, 04:46 AM
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
11-16-2011, 06:05 AM
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
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
11-18-2011, 03:25 AM
Best of luck, Rose. You've been on pred for awhile so you know what to look for.
Do well, Rose, and prosper! Let us know how it goes....
Al
Just re-reading this thread. That was almost 3 years ago and I have had no further episodes of vertigo. So for me that was certainly a flare. The MRI showed inflammation which could have been caused by infection but taking in all the other symptoms going on at the time, definitely a flare. ( I was treated for both at the time) Obvious in the retrospect.
Rose
annekat
08-08-2014, 02:11 AM
Just re-reading this thread. That was almost 3 years ago and I have had no further episodes of vertigo. So for me that was certainly a flare. The MRI showed inflammation which could have been caused by infection but taking in all the other symptoms going on at the time, definitely a flare. ( I was treated for both at the time) Obvious in the retrospect.
Rose That's interesting, Rose. I recently got over a tendency to have dizziness and vertigo. I was having a bit of a flare, which is subsiding and I'm almost back to normal. I had an MRI about a month ago which showed no visible inflammation but showed that my middle ears and mastoids are opaque, full of something. I have no pain but still need to sort out with my ENT what is going on here. I attributed the vertigo partly to seasonal allergies and their affect on my ears. The reason for the MRI was double vision, and things appear to be OK in my brain. But I have extensive bone erosion in the sinuses which could be affecting the orbits and causing it. So a lot of stuff going on and left to sort out. Vertigo is very unpleasant and I'm glad you got over it and the flare and are currently experiencing neither. My docs so far seem reluctant to attribute my vertigo to any one thing, and since I no longer have it, they don't seem too concerned about it.
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