Meniere's Disease - First drop attack
Posted , 16 users are following.
I've been diagnosed Meniere's for about 3 years, the usual hearing loss, tinnitus and dizzy spells but recently experienced what I think was my first 'drop attack'.
I was lucky to be sitting down watching TV when it felt like the room had been turned upside down. I yelped and grabbed at the sofa for support. Very quickly I felt OK, but then slowly went into a dizzy spell and vomited.
The dizzy spells I'm used to, but the sudden rush of movement was terrifying. I think I've previously been lucky as my spells of vertigo have been infrequent.
My initial treatment for Menieres was to be prescribed serc-16 betahistine dihydrochloride tablets and then later I entered a medical trial for a new drug called OTO-104 containing dexamethasone.
My main concern is driving. I haven't driven since the attack and am concerned that I will never be able to drive again. I have read that drop attacks come in bouts in later stages of Meniere' disease so I'm waiting to see what happens next. I have not always been careful about salt intake and prior to the attack had eaten salty pork and drunk quiet a lot of red wine, probably a big mistake. I'm now being more careful about my diet and hoping for the best.
I am waiting for an appointment with my ENT consultant to discuss the drop attack, but having found this forum wondered what other Meniere's sufferers experiences of drop attacks had been like.
1 like, 30 replies
catherine_8 david24820
Posted
Dear david 24820,
I don't normally post on this forum, but your post really hit home for me. A light bulb went off in my head as I read it!!! Oh my gosh......
I was diagnosed with Menieres 15 years ago. It has been a roller coaster ride all the way. The vertigo attacks, hearing loss, nausea , vomiting, fatigue and everything that goes with it, I have experienced. My symptoms keep changing and evolving and I actually learned how to control vertigo attacks to some degree. Then when I thought I had experienced it all......one day I was driving home from a short errand. Bam!!!! It was like and unseen hand took my truck and was flipping it upside down forwards, head over heels!!!! I was on a highway and luckily I pulled into a drive I saw. I was then able to stare at an object without closing or moving my eyes till it passed. My world had changed forever. Since that day, I have had many of the flipping forward attacks. I can control them with the staring technique the same as I did with regular vertigo attacks. So this must be drop attacks!!!!!! To say the least, I no longer drive!!!! I could have killed someone!!!! I have read about drop attacks but really had no clue.......now I know! I have learned that movement around me or my own eye movements plus stress are responsible for the majority of the severe drop attacks. My ENT wants me to have gentamicin injections into my inner ear. Fearful of maybe losing what balance control I have left and being totally dependent on others. Do you have this treatment where you are? Have you considered any type of other treatment? Thank you, thank you for your post. Wishing you the best. Take care.
david24820 catherine_8
Posted
I've got an appointment with my ENT coming up soon so will be discussing my options. Staying away from driving until I get a better idea of what's going on.
tanney catherine_8
Posted
To Catherine & David and anyone else contemplating having gentamicin injections but fearful of losing balance.....
Based on my personal experience of having this proceedure done 35 years ago when it was relatively unknown your concerns are unnecessary. Here is what I know about the proceedure:
1. the proceedure is done in the doctor's office and is almost exactly like the tympanic dexamethosone steroid injection proceedure you may have had. It takes about 2 minutes and then a 20 minute recovery. You are in/out in half an hour or so.
2. you usually require two injections about a week or two apart.
3. gentamicin is an antibiotic that works by destroying the balance nerve only in the affected ear. As I stated earlier in this thread the affected ear's balance nerve in MD sufferers is disfunctioning and sends "bad" signals to the brain which results in the vertigo you experience. Once the nerve is destroyed no bad signals are sent to brain any more and the vertigo is eliminate in the vast majority of MD patients.
4. Everyone has TWO balance nerves....one in each ear. So once the balance nerve is destroyed in the affected ear, the nerve in the good ear takes over and will compensate for the loss in other ear. You very likely will not even miss the nerve in the affected ear. THIS IS IMPORTANT TO KNOW SO THAT YOU DO NOT FEEL FEARFUL OF THIS PROCEEDURE.
5. Some folks will experience additional hearing loss in affected ear with this proceedure. But since you already have hearing loss (low decible range) caused by MD a little more hearing loss is a mild concern for most of us and a great tradeoff for eliminating vertigo. In my case I had NO additional hearing loss....and in fact my hearing over the past 35 years has IMPROVED!!
Again...in summary: please do not fear this proceedure. It has been done successfully with very limited side effects thousands of times over the years and now is quite profected. My advice is to make sure the doctor that does the proceedure has a lot of experience doing it.... and then go ahead with it.
Don't live with the debilitating effects physically and psychologically of vertigo....there are good options. If conservative treatment (diet, betahistine, diuretics, steriod injections) doen'st work for you please don't fear gentamicin....it can litterally "save your life" Be brave....you can do this!
If you want to talk with me more about this I'll be glad to try to calm your concerns. You can send a private message to me with your phone number or email address if you wish and I'll be glad to followup with you.
catherine_8 tanney
Posted
I will seriously consider the gentamicin treatment. My ENT has been encouraging me to go for it as I am an excellent candidate for the procedure. He tells me that tinnitus is usually not affected.......this is a symptom that I wish upon no one. But, I have read where the injection can help in some people. So, I am softening on this procedure......will revisit my ENT and give this a whirl. I may have to wait till November, as I have too much going on to chance the recovery time till then. He said it could take a couple of weeks recovery plus there is an outside chance that I may need a second injection.
Thank you again for the encouragement and generosity to speak with me personally. I will keep you posted on my progress.
david24820 tanney
Posted
Thank you for the information. I'm seeing my ENT guy next week and will be discussing what to do next. It's been over a month since the drop/vertigo attack and all has been OK. My Vertigo spells seem quite rare which is good. It's the tinnitus that drives me nuts. It seems everyone has a different variation of MD and it's a case of finding the right way forward for your own symptoms.
anthony22722 tanney
Posted
I'm so glad I found this support group. I've had Meniere's for only seven months. I had about 30 attacks during that time and had one sudden drop attack. The sudden drop occurred on a tile floor as I dropped backward like a fallen tree. Somehow I threw my elbow out and braced the fall as my head hit a cabinet. Dodged a big one. I've gotten the gentamicin injection in the affected ear and although it's only been three weeks, I feel confident the vertigo has left. My doctor, the vertigo authority at Penn Medicine, feels that one shot did the trick. I'm currently concerned with my balance which is totally gone from my right ear.
I've made good progress over the last two weeks and am undergoing vestibular balance training. Not much is written about the loss of balance or what to expect or for how long. I hope I can fully function soon. I can drive now and walk a straight line. Tennis may be out for good. Any advice on balance restoration would be helpful to me. I must say the trade off for taking the gentamicin shot (eradicating vertigo)and sacrificing some loss of balance was well worth it. Good luck to everyone. Vertigo is a monster to be exorcised.
clairebear40 anthony22722
Posted
anthony ,
Im also so glad i found this support group after years of suffering vertigo not knowing what it was i've finally been diagnosed with menieres not that it helps with knowing what it is but finally have people who i can relate too and you dont feel so alone , sounds like you too have suffered? its a awful disease " scary" anixety provoking disease , im forever walking round holding onto things or i look drunk trying to walk normal whilst trying to hold myself steady with the off balance issues , please can you let me know what works for you etc any advice at this point would be a blessing
clairebear x
linda25412 tanney
Posted
i wouldnt have gentamicin as i read it destroyed your hearing. ive had stetoids injection but that didnt last long plus a sac decompression. Again that sorted bad attacks. But now its changed and I'm having drop attacks daily. Im on steroids orally but no improvement. ive trained with a PT ive had accupunture and chiropractic sessions. At first training and accupunture worked now nothing i do is making a difference. Im careful most times with diet and am about to embark on a strict diet for the next 2 weeks to try and stabilise myself. There is a new procedure out that cuts the circular canals but im not sure if that will stop drop attacks. No one seems to say how long drop attacks continue for thats what im trying to find out. Ive had MD for 9 years.
Makembill david24820
Posted
David, et al.
I have had a Meniere's diagnosis for about 17 years but have likely been symptomatic for a lot longer, but undiagnosed. I gave been on betahistine dihydrochloride (Serc) for most of that time, and currently take 24mg three times daily. For the last two years I've had six to eight weekly injections of dexamethasone.
I have had two drop attacks. The first, about 5 years ago, was almost a carbon copy of yours. Sitting on sofa watching TV and without warning, the world tips upside down, clinging on for dear life. This was followed by a four hour porcelain hug-in, and the best sleep ever. The second attack came about three years ago while travelling home from work. Fortunately I use the bus for work. I was sitting, caught a glimpse of a speed sign go by the window, then found myself clinging on for dear life as the world went mad. Fortunately it was short lived, I didn't progress to vomiting and was able to leave the bus at the right place and make my drunken way home.
I am under an ENT Consultant in th North East.
For about out two years I have had very few episodes and then only very mild dizziness. I thought the dexamethasone had sorted me. Until two months ago. Since the I've been in full Meniere's mode. Full blown night and day episodes, the vicious vomiting accompanying some and multiple daily vertigo of an hour or so at a time.
I have been off work for two weeks, but hope to return next week.
DVLA, after consultations with the Consultant agreed to allow me to drive so long as I have warnings. Drop attacks are obviously rare enough to be an acceptable risk, but I never drive far alone. I bus most places and never consider driving while symptomatic.
I am due to discuss the potential for Gentamicin treatment in early November. I hope it's a goer and successful too.
david24820 Makembill
Posted
Thanks for your info. I think I've had two drop attacks while sleeping since posting, but in a three week clear spell at the moment. Staying away from the car until things settle further. My ENT guy suggested Gentamicin as possible next move, but the permanence of it worries me as I still have some hearing in that ear.
All the best
linda25412 david24820
Posted
ive been having drop attacks for 6 months but recently having them every day. Most times im sitting but when standing i drop to the floor. Cant drive or ride my bike. Am on steroids at the moment but they're not helping. I'm trying to find out how long they last.
UnsteadyVegas david24820
Posted
I,ve had many drop attacks, some very severe, others i can just close my eyes and be still and it passes... when they are severe, my world flips sideways and i throw up until i dry heave... one attack so severe, I ruptured blood vessels in my face... after a severe attack, I eventually sleep and 99% of the time upon waking, it has passed but my throat is raw and my stomach feels like ive done 1000 crunches
melissa80119 david24820
Posted
Hi Gentlemen,
My name is Melissa. I live in the US, I was diagnosed in with Meniere's 2017. My dad also has it in both ears. I take a prescriptions, water pill, 2 carbinoxamines, 2 antiviral a day for preventative treatment. Have dissolvable Hyoscyamine or ondansetron for nausea and diazepam for dizziness.
diet 800 mg of sodium or less daily, no alcohol, no caffeine, no chocolate, UGH!
I just went through a really bad phase from April until this month including drop attacks.
no you should not drive if you are having these.
I fell about 6 times and also had 3 more sitting down and yes they scared the crap out of me.
the bad one was on sidewalk, ouch! when my vertigo spells became almost daily and numerous daily in April my doctor start giving me the dexamethasone injections in my inner ear , (yes they hurt) which did help the length of attacks and amount of nausea, but they did not stop. Then I started having drop attacks, only way I can explain is regular vertigo your world is spinning but I could always crawl to restroom, but drop attack with vertigo you are spinning but you go down like a tone of bricks that were hit from one side of your body.
I am sorry you are experiencing this. it is horrible.
Had to go through the hours of testing including the chair again, vng, nerve test, etc. then couple of test after each gentamicin injections to see if levels were in better range. So the doctor had 2 options for me as I was in bad shape and scared to death to hit my head. Surgery or gentamicin inner ear injections. Well I chose the injections. 1st one put me in constant state of being unbalanced, had to use a walker, but 2nd higher dose worked almost immediately. I was on short term disability for over a month. Today is my 1st day back to work. I wish you both well. Take care.