hi folks, for the last two wednesdays, i have had steroid shots to my MM ear. I seem to be worse, not better. I am having many more dizzy spells than usual. almost every day. sometimes it's just dizzy and imbalance (no rotation), other times it's vertigo. my hearing does not seem to be any better, but the distortion is down slightly. I was under the impression that these shots were either going to help me or do nothing, not make me worse. Has anyone ever heard of them making it worse? I'm scheduled for a possible third and final shot on wednesday and i'm wondering if i should cut my losses.
Hi UC, So I have been using dex injections to control my Meniere’s for about 1 year and a half. The answer to your question is kind of long, but here’s my experience (and theories).... When my Meniere’s is escalating (as gauged by hearing) I tend not to have much in the way of dizziness until it is very inflamed...at which point I’m just kind of “off-balance”. Then, one of two things happens... 1. I get a full vertigo attack (spinning, world splitting into different directions, airplane roller coaster, ETC.) after which my Meniere’s symptoms are always low (hearing returns, tinnitus reduces, balance is improved, no sensation of dizziness). Presumably this is the result of the hydrops pressure reducing. 2. My symptoms reduce without a rupture (vertigo attack) in which case I get disequilibrium. I distinguish between the two as; no spinning vertigo and no sensation of dizziness at all as long as I keep my head still...BUT, if I turn my head, the sensation is over-exaggerated (I.e. I turn my head an inch, but it feels like I turned it around three times fast) and I can’t walk straight for the same reason (everything is over-exaggerated so it’s like I’m drunk). My theory (as a biologist but not a Dr.) is that; as the hydrops increases the pressure on the hair cells, it causes them to “mis-sense” movement slightly. The analogy would be your arm going to sleep when you lie on it wrong. It becomes numb, and when you try to move it – it’s like a floppy rag because the nerves and muscles are all confused. Your inner ear hair cells get the same way BUT, your brain compensates for this – which is why I only get a slight sensation of being off balance as the symptoms increase. Your brain realizes that (normally) a movement of an inch creates “this much” of a nerve fire (summed action potential) – but right now an inch is only creating half as much of a SAP, so it “resets” to say “1/2 as much SAP” = one inch. THEN, if the pressure continues to increase, maybe the nerve only fires ¼ as much, and then only 1/8 as much, ETC. The brain continues to compensate. HOWEVER, should the symptoms SUDDENLY reduce – your brain thinks 1/8 as much SAP is an inch but suddenly your hair cell is firing normally...so, one inch of head movement translates to the brain as 8 INCHES of head movement. The analogy here is the pins and needles you feel as your arm begins to wake back up. Your endolymphatic pressure has to stabilize AND your brain has to re-adjust before your balance will be sensed correctly. ANSWER: So, to make a short story long – yes, sometimes if my symptoms have been high, a dex shot will actually cause dizziness as the fluid pressure RAPIDLY decreases (rapidly defined as 12-24 hours). The more slowly my ear responds to the dex, the less dizziness I get. The lower my symptoms when I get the shot, the less dizzy I get. Sometimes I get no dizziness, sometimes I can’t walk all day. I have been using dex regularly (1-4 times a month) to PREVENT the symptoms from getting high, but this last month they’ve been fighting me so hard that I get dizzy for some period of time after each dex use. After the dizzies pass, my hearing, balance and everything are better. My advice...do the final shot and see how you react. Use the HEARING as your gauge of success. If the hearing improves...the hydrops has decreased. The dizzies may last different times for you, but if you can find your balance to keep the HEARING good – the balance should follow. OR...if the hearing does not improve assuming traditional low tone loss) then you are not responding to the dex and it is likely just aggravating things (the dex is a bit of an irritant to the ear – even though it does good things in the long run. Hope this big long email helps
thanks BK - your description of your two different reactions to a buildup are very similar to mine. your theory of how the brain is interpreting the signals is intriguing too. my situation is complicated by the fact that in 2005 i had gent treatments (titration), which killed my symptoms for about 1.5 years. then the tinnitus and fullness came back, then the vertigo the next year (2007). since it's come back it's been a combination of the off balance/swimmy/dizzies (like you said, don't move the head and life is good), and slow vertigo attacks (the rotation is slow enough to see the world around me and doesn't cause nausea, i'd say it takes about 4 seconds for a full rotation). all my balance testing including my new eng show no response in that ear. tests all show the ear is dead, i ask the doc why am i dizzy (and it is obviously the same ear, i can feel it) and he says don't know, guess there is something residual still alive. so that's the state on which i'm doing these steroid shots. i'm wondering if i'm awakening a sleeping giant. i wanted to try this to retrieve some of my hearing (it varies from 70% in my good season (summer) to 30% during the rest of the year and i do have low tone loss ), plus the ent says he's seen some people's vertigo get better with it. perhaps i'm not getting any hearing improvement because of the gent. i too feel like i should get the last shot i just hope i don't do any damage that lasts. thanks again for your thoughts.
I had one shot that sent me down into a very bad spiral. I chose not to have more. Good luck. Lisa I am wondering if more gent would work..........I had the same tests as you, showed my ear was dead, but boy was I sick. My doc said the tests are good but don't show everything. I had a laby and that gave me my life back. Lisa
What was the dosage for the gent? You may want to check out Dr. Tim Hain’s site (Northwestern U, Chicago) as he has a lot of experience with Gent. My understanding is; “high” dose gent (10mg/ml+) is designed to do a complete chemical labyrinthectomy (kill the balance organ) but the low dose regime (1-4 shots of less than 4mg/ml each) does not usually do a complete chemical laby and often the balance organs recover after a number of years. The theory behind the lose dose regime is that only the dark cells of the inner ear are damaged. These cells are part of the production of endolymph and, as such, damaging them slows the endo production and reduces the cause of the symptoms. They also recover after a number of years and the endo hydrops can then return. One thing to be aware of is; balance is based on communication BETWEEN both ears. When you turn your head to the right (for example) BOTH ears respond (one excites nerve firing rates, and the other inhibits nerve firing rates) and they use those signals together to get the correct motion sensation. If your gent ear was regaining some motion sensitivity (even if it’s not enough to register on an ENG – I’m assuming you’ve based the determination that the ear is dead by ENG) this would cause dizziness as sensitivity increased in much the same way as described in the earlier post. Your brain has, for years, been used to receiving no signal from that side. Now, suddenly, it’s receiving signals again and it’s not yet sure what to do with them. I would check out Dr. Hain’s site and maybe even have your ent consult with Dr. Hain. Hope this helps
The shots also made me worse.I'll never do them again.It wasn't a coincidence because I tried it on 3 seperate occasions.
My original gent was titration in march 2005; when the vertigo returned winter 2007-2008, i had one gent shot in january 2008. i felt lousy afterwards and chickened out of more shots. i lost more hearing from it and didn't want to lose anymore. i am now afraid to do anything more to kill that ear (gent or surgery) because (and i hate admitting this) i have been hearing ringing in my "good" ear for about a year. no fullness or hearing loss, just ringing, and not terribly loud. but i'm afraid i'm developing MM in that ear so i'm trying to avoid doing any more damage to the bad ear, although the damage is pretty bad already. i don't know the dosage on the original gent but it was titration with the wick so i'm guessing that's the low dose version. the jan 2008 shot mentioned above - i'm not sure either because the script was for 10mg, but i don't know if that was 10mg for the whole bottle, or 10mg for each portion for three shots, and i only did one shot. yes it was an ENG in august that showed no response in my gent ear. my gent ear is definitely alive still/again, because i can *feel* it. it actually feels like a small water balloon when it's bad, and when i have an attack i actually feel the little water balloon move like it's flopping to one side. despite the ringing in my good ear (which scares me to death), all the action during the attacks is definitely coming from my bad ear. I believe dr. hain is the chicago doctor? i am in eastern PA, 1.5 hrs. north of philly and about the same west of NYC. i've been to dr. bigelow at UPENN but i notice nobody else seems to see him so i'm not sure whether i should go elsewhere. when i last saw him he just offered me the usually litany of options (diet, meds, gent, steroids, shunt, nerve section, laby), nothing innovative. i can't imagine my family supporting me making a trip to chicago or LA, but maybe NYC or down to Johns Hopkins. right now i am going to have the last steroid shot tomorrow, see the allergist next week and see how it goes. i am going to as my ent about the anti-virals tomorrow too, if i remember (i have terrible brain fog lately). i appreciate everyone's help. if sometimes it takes me awhile to respond to my own threads, it's because i'm trying to absorb all you tell me and gather my thoughts. it's alot to comprehend in my current state.
hi all - just got back from the ENT. I had my third (and last in the series) steroid shot. My hearing test today before the third shot showed improvement, both in decibel level and speech recognition. i don't really notice the difference in everyday life but i do notice that my hyperacusis is not as bad; the audiologist even discussed the results with me through the headphones into my bad ear and it hurt a little, but it wasn't horrible like it would have been in the past. so at least that's something. so i did the last shot and we'll see how that goes. next week it's on to the allergist, followed by the ENT visit to discuss results and recheck hearing. i also talked to him about the anti-virals and he seems open to trying them! first i want to deal with my allergies, and see how that goes. one thing at a time so i know what works and what doesn't. thanks again for all the help...
I had a follow up appointment today also. My hearing test results were even better than the last. For me, the steroid injection was a success. I will follow up at 4 months and then at 8. My last 2 attacks have come in September so by having these tests perhaps we can avert another attack or at least see it coming and start treatment earlier.
hi amberini - glad to hear the good news! Did you have just the one shot in October? If so, that means now two months later your hearing is even better than right after the shot? If so, that is wonderful. And it sounds like you haven't had any attacks since the shot either? My ENT says that happens for some people. I am still having attacks but they are at a different pace. My last one with vertigo was on Sunday, the one before that was last Wednesday. But I've been known to get them every 2-3 days so that's a little better. In between i get the swimmy/dizzies without the vertigo, the last one like that was on Monday. So we'll see if i do any better in the coming days. Wish I had a more dramatic response, but I figure this was worth a try either way. I hope you continue to be well.
Hi Uben: Yes, I had just one shot in late October. Right this minute, my hearing is only 5% different between ears and the levels are better than they have been in 2 years. I still have a scab on my eardrum. He says that's from the topical numbing agent, not the injection. As a sidebar, I asked the doctor if this meant I really had MM since I don't "fit" and have been called Atypical. He says everyone is "atypical" meaning that this affects each of us differently in some ways and the same in others. Nothing that "WE" don't know already. I even brought up that some people think there really isn't such a thing as MM, it's all in our heads. I mean, I KNOW I am crazy, just didn't think I had advanced to a higher level of craziness. Anyway, he just shook his head, there is so much that is NOT known about the disease as well as so much conflicting information about how we got it, how to treat it, how not to treat it, blah, blah, blah! It's enough to give one a screaming MIGRAINE! My attacks are of fullness, increase in Tinnitus, decrease in hearing, but not vertigo. I know there has been many posts here about whether or not "burn out" occurs with vertigo and I have no idea if this is true or not BUT I haven't had a true vertigo attack in more than 10 years. ( double cross fingers, knock on wood, oh wait, that was my head!) I do have dizziness and I do have BPPV but after living with and through vertigo, I will take this any day. Suffice to say, I am atypical in many regards and that doesn't mean its a darn bit easier to live with any of it! I left thinking I had escaped, dodged another bullet but still was/am very shaky about the continuing pain issues. For me, that is so much worse than whatever MM threw my way. It's weird how information just finds us, exactly when we need it. Not really, I know from experience, this is the way it's all suppose to work out. In the course of my visit, my doctor shared with me that he too suffers from a rotten back and has had 3 surgeries. When I told him I couldn't have surgery because I can't take pain meds and why I can't take them he took the time to explain something no one has ever been able to do. I react to medications with hives and itching, sounds like an allergy, at least to me. But not so says the doctor. Instead, its a histamine release and all I might need to do is take a dose or double dose of an antihistamine. Can you see the light bulb??? How many years have I lived in pain and all I needed was a zyrtec? OMG!! So, this morning I had to have blood drawn for something else and my regular doctor was floating by. I quickly snagged him and shared this nugget of information with him. He quickly whipped out his Rx pad and we are going to test this theory. But just in case, I will still see the orthopedist to see if he concurs with my self diagnosis of bi-lateral hip bursitis. Hey, good news, it can be managed with ....are you ready.....a injection of steroid, YES!!! More updates as they become available, we now return to regularly scheduled ...............whatever life brings your way today, programing. Janine
5:00 update. After xrays and meeting with the ortho. it's not bursitis but the continuing degeneratiom of my spine along with the aging effects of scoliosis. Drats, I was so hoping for a hip replacement. I did have him in stitches tho...LOL. Always good to leave them laughing! Oh well. So, I will have some acupunture and some PT but I don't hope for much, having hoped for something only to be disappointed. Maybe this time I will have better luck with some meds to manage pain.
are you kidding me - you have scoliosis? me too! fused t5-s1. has yours needed treatment? i'm glad there seems to be a way around the pain meds problem. i guess that's why we keep telling anyone who'll listen what's going on with our health - you never know who has some useful info. next week when i go to the allergist she'll be hearing more than just my allergy history, she'll hear a synopsis of all my MM history, just in case something makes her lightbulb shine. today i had the weirdest attack of my life, i think. it wasn't just the dizzy/swimmys, it was what should have been an attack, but it only had me feeling "ungrounded" for about 20 minutes and i didn't spin either. i just grabbed my cup of tea, sat on the chaise, and relaxed. usually my inner ear feels a certain way during the attack too, and that was different too. i could hear my pulse in my tinnitus and i felt pressure in my head (the pressure's not unusual) and after 20 minutes, the pulsing stopped and my head cleared at the same time. then i felt grounded but sat there for another 45 minutes just to make sure i was steady. i don't know if it's related to the steroids, but i sure wish they all could be that easy! my doc says i am particularly "atypical", but i think he says that because i think i may be the toughest MM case he's dealt with in his 30 year practice (he's a regular ENT). i think he's just been lucky up till now. what is the bppv like? is it true that you only get dizzy for very short periods of time with it? I ask because sometimes my dizzies start with a movement of my head, but not always. hope the acupuncture and pt helps you... good luck with your pain med experiment! Robin
Hi Robin, The world just gets smaller. I don't have anything fused and my scoliosis is side to side and front to back. It's a mess and it doesn't seem there is any answer. That's a major fusion you have, how long have you had it and can you move at all? I agree with you in that one never knows who might be able to connect our dots. All of our attacks don't have to be the same. Something about your symptoms did strike the migraine chord though. I thought until recently that migraine meant a really bad headache and that mine never qualified for that label. Probably because of the confusion on my part over what an "aura" really was. Now I am pretty sure I have had migraine since being a teen. Anyway, BPPV for me: sometimes it catches me as I sleep. It's a heck of a way to wake up. Now I know to keep my eyes open and focus intently on something, before I closed my eyes tightly, it just makes it worse. My back prevents me from any sudden movements thus partially controlling the incidence of have many episodes. "They" the folks at the balance center tell me that I have adapted to this by controlling the movements of my head and eyes. In general, I do tend to keep the speed of head and eye movement at a controlled pace. There are times when I cannot walk without keeping my gaze to the front, if I look to the side or up, I will stumble or stagger or both. There are other times when lights give me fits, especially with night driving. For this I call it being visually overstimulated. I also at the same time had other visual abnormalities, like wavy lines, halos, lights too bright and tension over the roof of my mouth, but no headache. Now I know, that fits the migraine profile. One doesn't need head pain to have a migraine, as if the whole thing wasn't confusing enough! I have also had ocular migraines, really weird! I thought it could be a stroke, but after 30 minutes and my sight returning, I chucked it up to more weird events. I understand "ungrounded". I had it 3 years ago and convinced myself that I was dying. I actually told the doctors just that, I felt disconnected to earth, as if I could just float away. Did they have a clue, NO! My husband had gone to bed earlier, so I went in and gently woke him up and told him to quietly get dressed so to not disturb the dogs and that I wanted to go to the hospital, which we did. I think it had something to do with having bacterial pneumonia and just having completed a colonoscopy ( high salt, very dehydrated, no food ). How was the weather when you had the pressure and pulsing? I have sometimes reacted strongly to a low pressure system moving by, like last weekend's cold front. I started the pain med. experiment. So far, no itching, no hives, but sleepy. I am hoping for the best and NOT prepared for it not to work. I need relief and I need it now! Okay, a reduction would greatly be appreciated. TTFN, Janine
Hi Janine - I was fused T5-L3 at the age of 11 in 1971 (okay everybody let's do the math!). I had problems afterwards and they went back in and fused L3-S1 at the age of 15 in 1975. While they were in there, they took out my harrington rod from the first surgery since my fusions were solid. Obviously there is no movement withing the fused vertebrae but from t4 up i'm free so at least i can twist my shoulder some and i can turn my head. I do have some wear and tear on the free vertebrae since it takes all the torque when i turn and such. My neck gets stiff and i still wonder if it makes my ear worse. My back so far is in very good shape for a 37 year old fusion job, and i think that is partly because i'm fused all the way down (most of the long term problems occur in the lumbar when it is not fused). When i was a teen my family would reassure me that i was getting all my illness out of the way early and i would be such a healthy adult. so much for that idea. I was wondering about the MAV myself because these days i get the pressure in the head and my eyes have trouble tracking etc. but i would think if it was MAV i would not be able to feel that it is just my one ear. i do feel sensitivity to light sometimes but not like with a classic migraine (i had one classic migraine while i was pregnant years ago). my mom got migraines when she was my age (the hurting kind, no vertigo), so who knows. i tried to read through the material on MAV in the database, but all this med stuff just confuses me with the brain fog. i need to be talked to in pure lay terms or i don't seem to get it. I've woken up with the spins its fun isn't it? i sleep with water and meds next to my bed now. how long do the bppv attacks? i heard they are shorter than meniere's vertigo, is that true? what's an ocular migraine? i've had very short, sharp pains behind my eyes, but they only last a couple seconds, but i don't lose my vision. yay! someone knows what i mean by ungrounded! last night i had the dizzy thing without the vertigo and the ungrounded sensation, and my eyes were so confused about what they were seeing even though it was all right in front of me and staying put like it should. I just felt pressure behind my eyes and disorientation, lightheadedness, and almost like a vibration in my whole head, but not really. it's hard to explain. i actually got scared that i might be having a stroke or something too, but then it faded away, probably in about 20 minutes. that was the second episode of the evening. we did have a rainy day yesterday but i've been known to have problems in all kinds of weather. So so so glad to hear the pain med experiment seems to be working. Antihistamines will make you sleepy but often you adjust. When you get a chance update me on how you are doing.
Hi Robin, Well, as far as migraine and MAV, let's be clear, I am learning, too. As you will see here on .org many recommend a book called "Heal your Headache 1, 2, 3. by Buckhotz I ordered it from amazon. Helps make sense of the craziness. I would say the first order of business is to look at your food and drink. There are many triggers and food is full of MSG. Which means alot of cooking from scratch. Gluten is also a culprit for many people. As Thornapple told me, nothing that comes out of a box, thus eliminating many choices and sometimes many pounds. http://www.mvertigo.org/ Here is a link to the Migraine site. Ocular migraine for me was losing vision in one eye, no pain. Sort of freaked me out, but 1/2 hour and it returned. That's all for now, we will talk again. Janine
