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.
Hi
Although I a man currently going through a bad spell of Menieres I've had mine about 5 years now, touch wood I've never had a drop attack and I've been put on 32mg of Betahistine 3 times a day since Friday, although this seems to have had little affect.
How often to do you generally get attacks of vertigo and did the OTO trail have any benefits as I was supposed to be on this but couldn't attend the appointment
Thank you in advance
David, I can't tell from your post where you live. I had thse episodes when I was first diagnoised 10 years ago. The Betahistine, (SERC) stopped that completely. I continue to have what I call wonkeness along with all the other symptoms. I do drive and can actually drive well even when feel dizzy. Please look up Dr Michael Burcon on Facebook and/or utube and watch his videos. I see an Upper Cervical Chiropractor on a regular basis and am convined I wll have this care for the rest of my life! Good luck these symptoms do suck!!
Is this what a drop attack is? My first attack like this was sitting on the sofa, laptop on the right arm of said sofa when the room turned upside down and I hugged the sofa to stop it moving. I thought a drop attack would be falling down from standing.
Full attacks which I would describe as room spinning and feeling nauseous have been rare since the trial. I hadn't had a lot before the trial, but was hoping for some improvement in the tinnitus and hearing loss in my left ear.
The problem with the trial was that they would not let you know if you'd had four injections of the drug or two as some people on the trial were getting a placebo. I was offered a further two injections that were the drug, so I either had four or six doses.
The last of the injections were at the beginning of the year and until the drop attack a couple of weeks back I had not had any full on vertigo this year. I had had some mild spells of dizziness but not like a full on attack. My hearing and tinnitus have got worse if anything. I was told others on the trial had felt much better after, this might of been because they were having more attacks before. My lack of attacks this year might of been down to the trial, I don't know.
I'm currently not taking any medication and waiting to see what comes next.
I'm in Gloucestershire. I have driven while a dizzy spell was starting because I was stuck in traffic and not able to pull over. The drop attack was a totally different thing as it was a sudden rush as if I had been shoved. I think had I been on a busy road I would of suddenly swerved to a halt possibly causing an accident.
I've printed off the dvla form and it asks if you would have sufficient time to stop your vehicle safely - I would have to enter no and I'm sure this would mean they would take my license away.
My hope is that this was a one off attack and I can prove that over time.
What benefits are there from seeing the Chiropractor and what's the link to Menieres?
That sounds like what happened to me. I'm assuming that if I had been standing I would of fallen over. I think we were lucky to be seated.
Another question. Are you in the U.K.?
As long as you have uncontrolled and unpredictable vertigo from MD or any other cause, it is illegal to drive in the USA....probably also in UK. Once your vertigo is controlled via diet, medication or surgery and has not recurred for months then the resumption of driving is permitted in USA. If you are unsure if your vertigo attacks are eliminated and you want to drive, a more aggressive approach to MD managment is called for. If the betahistine you are taking does not eliminate the vertigo after 3 months (increasing dosage each month or so) then you need to consider other options. In the USA ENT almost always prescribe diuretics as first course of treatment....apparently this is not so in UK....not sure why. Diuretics starting at 25mg/day and moving up to 75mg a day usually are effective in controlling the vertigo and the ear fullness (aura) and can diminish the level of tinnitus. But being on diuretics means that you MUST control salt intake (1000 mg/day) and avoid liquer, caffein and stress. You also will need to have your kidney function monitored via blood test every 6 months or so. For those who still find no relief from taking betahistine and diuretics the next step is usually steroid injections to the inner ear. If after that you still have vertigo then gentamicin injection (destroys the balance nerve in affected ear that sends bad signals to the brain resulting in vertigo) very likely will eliminate your vertigo. Gentamicin has some negative side effects in some folks (not all) such as additional hearing loss and some balance problems. I had gentamicin injections 35 years ago that completely eliminated vertigo. I had no side effects at all from the proceedure. I now drive anywhere....
Unfortunately, I have had numerous drop attacks, from being outside/waiting for the bus and collapsing on the seat, and having to ask strangers to ring for a cab, to being at home cooking and having to grab the chair, then I begin to sweat profusely. It is very, very scary, hence why I had to give up driving.
That is one of the most informative posts that I have seen on all of the websites I've searched looking for answers.
At least there are options and although a terrible condition to live with, there is possibilities to improve things
Thank you
I have never sweated like that in my life. I went to the front door for fresh air thinking it would help and the street & cars were moving up sideways . I crawled upstairs....
Ps Sharon, if it's hot we have takeaway or microwave as a hot kitchen makes me ill.
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.
Dear Sharon17905,
So appreciate the fact there are others who deal with these horrid symptoms. The profuse sweating is my clue I had better take my Antivert and Ativan tablets ASAP, a head to bed. This crazy disease rules my life. I can actually control the vertigo and drop attacks by staring at an object, not closing my eyes. It is hard as my eyes want to keep moving. If I let my eyes move a full blow attack will take over. So I hold onto that object with my eyes. This technique helps to stabilize my brain and calm things down. It works! Try it sometimes to see if it helps you. Unless you have experienced these crazy symptoms, no one can really grasp what you go through. Hang in there. You are not alone.
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.
Thanks for the information. I've had the steroid injections and am nervous about going any further with the destruction of the balance function, but am desperate to drive again.
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.
Thats why I suggested you see DR Burcons indormation. After treating hundreds od Meneir's patients he and other Upper cervical chiropractors have concluded Meniers is the result of an whip-lash injury...something that probable happed to up many years ago and maybe you have even forgot about.The head now does not sit on its Axis correctly and after years with the body while trying despartely to over compensate thes symptoms emerge.Just watch and listen to what he says. People are coming from around the world to seek treatment. He statement is "Every parient I have seen has had some kindof an injury, probably 20,30, or even 40 years ago and then Menier's symptoms happen." Not everyon with an injury develops Menier's but every patient I have treated has had an injury." I encourage everyone to at least read his studies they are all online and he has traveled all over in an attemp to educated not only ENTs but other practioners who remain so ignorant. Please read its free and convenient!!!
Good morning,
I have had Menieres off and on since I was 18 but in the last 5 years attacks have got a lot more regular and intense with significant hearing loss and tinnitus. I am now 63 and have been on betahistine for 2 years. I have sort of resigned myself to having this disabling disease.
However your post has given me hope! I had a bad car accident when I was 18 resulting in 6 weeks physio for severe whiplash. The same happened in 2006 and in 2013. The last accident was the worst and despite the physio, I have had neck pain almost continuously since. This does seem to relate to my menieres activity so I am going to seek out a chiropractor locally. I will let you know how I get on.