Hello again! I don’t see a GP for another fortnight so I was wondering if anyone could offer any thoughts or experience? Mainly I just need to talk, I’m quite shaken up at the moment. My attacks usually come on with some warning. It starts with a subtle but unpleasant change in my head that’s hard to describe, but I know what’s coming. If it’s a bad attack, things slowly progress over the next 5 - 15 minutes into full blown vertigo and nausea. If it’s a milder attack things tend to stay the same and if I sit quietly and don’t move too much it eventually settles without needing to take any medication. Except for the attacks that start in my sleep - I just wake up with vertigo and nausea! Yesterday evening I was sat watching TV and suddenly experienced severe spinning vertigo with no warning whatsoever. I was actually hanging onto the sofa for dear life! It settled after somewhere between 15 - 30 seconds, leaving me with more bearable vertigo. After a few more minutes I was able to carefully walk upstairs as long as I didn’t move my head too much. I’ve had a pretty good day today - I’ve been feeling well and the ear fullness has been much better than yesterday. I’d just come home after going for a walk around the block and had just gone into the bathroom. Out of nowhere I experienced severe vertigo, causing me to fall to my hands and knees. I couldn’t get up and had to drag myself on my belly to unlock the bathroom door and shout for help. Less than a minute later it began to settle and I could get up, with just mild vertigo, which settled over 20-30 minutes. I don’t think it was a drop attack, my experience doesn’t match what I’ve read about them. I think my legs gave way from the vertigo. I’m quite shaken up by the experience and worried about it happening again and injuring myself. I’m also concerned about the sudden change.
I feel for you, my quality of life had gotten so bad from the vertigo attacks I was experiencing and from the recommended treatments from the ENT doctor that my social life had deteriorated. On 3/18/22 I started the JOH regime (you need to check the database) and I went from getting 2 to 3 vertigo episodes (the bad ones losing my balance and throwing up) to none. I also got off the doctor recommend diuretic and low salt diet. My quality of life has improved significantly. It will be interesting to see what your GP recommends. Check the database for the JOH regime it may help you.
Hi Lmaras, I’m so sorry to hear you’ve been having such frequent and severe attacks and poor quality of life. That’s amazing that you’ve improved so much with the JOH regimen - and quite quickly by the sounds of it, too! Long may it continue! You’ve given me hope - I’m on it too minus the Vinpocetine. It’s early days for me - I’m about a month in. I’m also taking Monolaurin, 16mg Betahistine 3 x a day (the max licensed dose in the UK - which isn’t working for me!), low salt/low sugar/no caffeine/no alcohol… I’m hoping my GP will refer me to ENT again, but a more helpful one than I saw last time around! All the best
Hello Emmy. You described your situation well. I identify with it, not as much now as years ago when the attacks were as you described them. I spent many an hour crawling inch by inch to the bathroom where I would be for several hours. It is horrible. You are not alone; you have company. Perhaps there is some small comfort in that. I no longer get vertiginous, but the nasty nausea is daily and so are disequilibrium, dizziness, and of course the ever present tinnitus and fatigue. Our poor brains cannot compensate any longer but they do their best. It might be that disequilibrium caused you to fall to the ground. That happens to me often and I have even got a black eye one time and a couple broken toes. We can offer what has worked for us and it requires experimenting with this and that. Physicians were not much help to be, but some people find a good doc. It all takes so much time, the search for viable treatment and for anything that will ease our suffering. I wish you well and hope you find answers. For me, after more than thirty years I experienced burnout. I want that for you.
Hello Emmy, My meniere's sounds similar to yours. I'm not sure how long you have had it for, but it's been 11 years for me. Early on, I could always tell when I was about to have a spin. I would start to feel weird and a little off, and then a few minutes later the room would start to spin. The vertigo would usually last a while. I think at least an hour most times. And then one day, I think maybe 5 or 6 years in, I was at work talking with a group of people. Suddenly, without any warning whatsoever, everything was spinning full speed and I went down. It stopped after a minute, but I was very dizzy for a couple hours after. From that point on, all of my vertigo episodes were spontaneous. They were not always the full speed, knock me on my arse kind, in fact that first spontaneous one was by far the most violent spin I have ever had. But ever since that one happened, every spin would now come on without any warning. Most of the them were not strong enough to throw me to the ground, but a few of them were close. Also, from that first spontaneous spin, every one since then has only lasted maybe a minute. It's been about 5 years since then and that's all I would get. Short, spontaneous vertigo. I am not sure why the change happened for me. I do see a neuro-otologist. He's not sure about the change in vertigo either. He has told me that everyone can be a little different. My mom for example came down with menieres a few years ago. She had terrible vertigo for a few months and then it just stopped. She's been fine ever since. I hope you're doing okay. There are a lot of treatment/options you can try. You never know what might work for you.
Hi Emmy. I have those quick no warning attacks also and thought it was drop attacks. The attacks only last about 10 to 15 seconds, just long enough to make a person fall or make it seem things are turning upside down. Once in the car it felt like the car was turning upside down. Luckily I was not driving. In fact I have not driven for a year since I fell and fractured my back.
Hi twodogs, Thanks for getting in touch and your kind words. I am very glad I found this forum - the wealth of information and wonderful people on here have really made a difference during this difficult time. I am sorry to hear what you went through over those 30 years and that you still suffer with unpleasant symptoms on a daily basis. I haven’t had another out of the blue attack since I posted, all since have had warning again. It’s always niggling in the back of my mind, though. I keep having to tell myself that while it could happen again, it may also never happen again. Wishing you a good day today.
Hi Qntario, Thank you for your message and I’m sorry it’s taken me so long to reply. I’m not really sure how long I’ve had Ménière’s. I’ve had issues on and off with vertigo and ear fullness/tinnitus/distortion for 12 and 10 years, respectively. My symptoms initially didn’t tick the boxes for Meniere’s. I got a “likely” diagnosis in 2018 after my first classic attack and and a definite diagnosis 2 years ago. How frequently do you experience the sudden spins? I had an 8 week break without any more sudden spins. I was hopeful that might be it. I had some more mild-moderate attacks that had warning, and then 5 wonderful weeks without vertigo - even my hearing/tinnitus/fullness improved for about a week! Unfortunately my ear problems and vertigo returned, including two more sudden severe spins at the end of August. Things have definitely changed and at the moment are very similar to what you described, sudden episodes that last no more than a minute. I’ve been having them every day for the last week or so and multiple times a day in the last few days. Everything from mild to intense. I had my first drop attack last week and that really scared me. I’m waiting to see an ENT who was recommended to me by a member of this forum. I could probably be seen sooner if I opted for a local ENT but the last consultant I saw wasn’t very helpful! Hope you are doing ok.
Emmy, so sorry to hear things are not going well with Menieres. I've been dealing with this for more than 3 decades and it seems the only extended relief I get is on the antiviral treatments. Presently I take 2000mg of valacyclovir, 2000mg of L Lysine, 4000mg of Complex vitamin C, 5000mg of vitamin D, 2000mg of vitamin E. It's not an easy game. Making sure I take the meds at the right time every day, for me, is a challenge. But living the past 9 months symptom-free is a wonderful reward. By my calculation, you've been on JOH a little over 4 months. I would stick with it for at least 6 months. The fact that things are getting worse can be the disease fighting back against the treatment before being subdued. Wishing you good health.
Hi Dizzy T, Sorry it’s taken so long to reply. I’ve been away from the forum for a while. Thank you for the reassurance. My Meniere’s has changed considerably in the last few months. For the better in the respect that I had no full-blown, prolonged attacks from mid September until this weekend. However the trade-off has been nothing but sudden random spins that last no more than a minute, occurring nearly every day, usually multiple times a day. They range from mild to fall-inducing, including two drop attacks. I’m completely baffled by it!
Hi Weeba, Sorry it’s taken so long to reply, I’ve been away from the forum for a while. I had my first drop attack in September. Your description sounds very similar to my experience. It felt like the world violently flipped me over and my body involuntarily flipped around almost 180 degrees. Fortunately I was kneeling on the floor at the time. The vertigo probably only lasted about 10 seconds. It felt like a combination of free fall and moving sideways at very high speed. Apart from a proper prolonged attack at the weekend, I’ve only had random short-lived spins of varying intensity since September. Most have happened when I was already sitting down. I was hoping September’s drop attack might have been a one-off but I’ve just had my second one today while in the kitchen. It felt like a ghost forced me down to the ground. Did you fracture your back as a result of a vertigo episode? I’m really worried I’m going to injure myself one day!
Hi there! New to the forum but I’m 26 and have been living with MD for 8 years. My vertigos also recently had a big change. Use to be mild ones I commonly woke up with, but could function through. Now I’m getting some of these intense spin attacks that can be as short as seconds and as long as 4 hours so far, the longer ones tend to come with nausea and vomiting if I can’t get meds in my system quick enough. They were already flared up and I was on day 6 of on and off daily vertigo when I was in a car accident about 3-4 weeks ago (was not driving, unrelated to the vertigo). They go worse after that too My ENT said he’s at his limit of knowledge on MD and reffered me to a neurotologist but I’m still 2 months out from that appointment. Currently taking meclizine 3-4 times a day and Zofran for nausea as needed. I’m compiling a list of things to ask the specialist about, including JOH. But I was wondering if you’ve found anything else that has helped so far? I don’t want to start anything new med-wise until I talk to this new doctor.
Making this inquiry is prudent. But don't expect the medical professional to be aware of or know anything specific about my Meniere's treatment regimen. It uses over the counter products and appears in no medical textbook. For about 80 to 85% it provides relief from Meniere's symptoms; but it's not generally recognized yet by the medical profession. The best question to ask is if the physician sees anything in the regimen that is unsafe and should be avoided. If a yes answer is given, ask what the specific problem with the regimen component might be. Let us know what you learn. --John of Ohio