Hi there, Since early 2019, I've been getting dizzy spells and it's progressively getting worse as time goes on. In my left ear, it's like someone turns on a tap and all I can hear is a rush of water then I get extreme dizziness and vomiting. Only yesterday I had another episode where I ended up on the floor of my bathroom at 3.30pm and never managed to get up from the floor until nearer 9pm. The symptoms I get are, dizziness, vomiting, tiredness, ringing in the ear, lack of sleep, frustration and sometimes the odd headache. I've been to the doctors, had an MRI, went to ENT, prescribed histamines and anti sickness tablets but still it persists. I feel like it's starting to take over my life, I'm worried about going away for work,days out, holidays etc. I'm wondering if any of you who are going through something similar can give me advice for ways to handle these symptoms, especially the dizziness. Thanks B
Well, you are now part of an unfortunate group. The only other thing I can offer as advice is to cut back on Sodium intake if you haven't already. I honestly cannot say how many have been helped by this. I was given Meclizine and Valium for episodes, but I didnt like how they worked. maybe you'll fell differently.
Sorry to know you have this horrible disease. After seeing several ENT doctors, my adult son found one that knew the fluid in his ear needed draining and inserted a tube that remained in his ear for about a year. He had immediate relief and during that year he only had a few mild attacks. The tube came out and within 3 months he started having severe attacks. Had new tube inserted and again he is much better. Ask your doctor and maybe this will help you.
I've quite similar problems. Tinnitus in left ear with hearing loss. Chronic dizziness for 23 yrs. When attack came, I couldn't stand & walk. Very dull pain in head when I tried to stand or to walk & I vomited too. Went to Emergency 3 times. My last admission I had MRI on head, heart scan, chest xray, blood & urine tests. All turned out ok and I'm still having dizziness but it's not bad as before. I'm now taking Betahistine 24mg once a day & Vit E 400iu. I took Prednisolone only for a week and this medicine really worked very well on my dizziness. My dizziness is tolerable now & I can walk & drive. Driving used to be very challenging esp on expressway. To help myself getting better I need to have good sleep, take a nap whenever I'm tired & drink enough water. Going for a 30-min walk everyday & having some sunshine have also helped me. Btw I'm seeing a neuro-otologist for my issues. Hope this helps you. Do note the medicines that I've taken & am taking now may not work well for you although we may have quite similar issues. Please don't give up. See the right doctor. Pray you will be ok soon.
Hi Nancy,
I'll certainly ask about this, I feel that when I visit the ENT or doctors, they don't give you any advice apart from rest up or take these tablets. Luckily I have around 30 minutes or so before the dizzy spells get the better of me so I have time to get home.
I hope your son is feeling much better now.
Thanks
B
Hi Eric,
It's certainly a group I didn't want to join but will unfortunately have to accept it now.
If I had the choice of winning the lottery jackpot or no longer having these symptoms then I would certainly choose the latter.
I have reduced my caffeine intake to 1 coffee a day now (used to be 5 or 6 a day) lowered my salt intake but no one mentioned sodium so I'll look into that.
I definitely don't want to be given anymore medication as I've also got Crohn's and it's taken me years to get my body in a healthier state so that I no longer have to take medication for that however my doc did say that the histamines I take 3 times per day can be doubled to 16mg per dosage if it keeps getting worse.
I hope you're well and thanks for the advice.
B
Hello Barry, I was sad to see your post , I know what you are going through. I am 61 years old, and I have had the dizziness eleven years now. I take 23 different meds for the all the illnesses, that I have. I have tried many different meds to combat the dizzies I have not been able to conquer the dizziness. I even tried stopping the meds to see if they were causing dizziness. I have had to learn to live with the foggy head and dizziness, After a couple of years, I found myself conditioned to the dizziness The symptoms were worse at first, as time progressed, the vertigo and nausea dissipated, and only the dizziness remained. I am hoping you can find a coping place, somewhere in all the madness. God Bless
Hi Barry. You mention that you take histamines.....is it betahistine (serc) that you are taking? If it is please do not give up on it. Most folks on betahistine will find success in controlling the MD symptoms once they reach the correct dosage for them. In my case I take 64mg/day (16mg 4 times/day) but many folks require even higher dosage. I have not had a vertigo episode in years. And the ear fullness is gone and tinnitus is milder. It's important that you gradually increase the dosage over several weeks and give it time to work. The vast majority of folks also do not suffer any stomach side effects which in your case is important. Please give Betahistine the opportunity to work for you. If after several months of titrating up on the dosage you still have problems, there are surgical procedures that have proven quite successful in eliminating vertigo....such as intratympanic gentamicin injections. I had this done for my left ear and it completely eliminated the vertigo from that ear. I later developed bilateral MD and the betahistine completely relieved my symptoms from the right ear. Be patient....there is a solution for you. Good luck!
Barry Sorry you are going through this. It sounds like the way mine started. I was diagnosed with MD over twenty years ago. I've been prescribed diuretics, prednisone and now finally betahistine 16mg 3x day which seems to be working. I could not tolerate the side effects of oral prednisone, but some people can. When I felt an attack coming on or a change in my hearing the doctor then started a direct injection of predinsone into my eardrum. I believe it helps a bit, but it is not a long term solution. I've been to accupuncture as well as upper cervical chiropractor which worked great for over a year. I've basically tried just about everything. I would suggest going to an otolaryngologist as they specifically focus on the ear. As the years have gone by my hearing has gotten worse in both ears and I now wear hearing aids. MD is a weird condition as it affects hearing in as not just loss of sound, but sound distortion, tinnitus and vertigo, the worse trifecta. I wish you the best and let's hope the medical community can figure out a cure. DizzyDaddy
Hi Barry...you are about the same age as me (if you were born in 1979 like your name says). I am 38 and have been diagnosed with meniere's disease since age 34. The best thing to do is lower your sodium intake. Decrease your fast food and frozen dinners, frozen pizza, etc. Try to increase your water intake so that you flush sodium out. I also learned from my ENT doctor that menieres disease gets worse before it gets better. :( and he was right. The first 3 years i would get the vertigo attacks every 2-3 months and i would have to lie down and sleep to make it stop. Finally on year 4 it got better and i havent had an attack in 19 months.
Dear Barry1979, I am sorry you are diagnosed with this debilitating condition but it's not cancer or worse so there are ways you can control and even beat this thing. I noticed some people suggesting lowering your salt intake. I would suggest lowering your salt and caffeine intake along with cutting out sugars, grains (specially glutenous grains), and adding some massage and/or pressure point therapy to your life. I am 62 y.o. and was diagnosed with menieres and tinnitus since I was about 16 years old. I have lost complete hearing in my right ear but have that same loud sound in that ear- I describe it as a freight train going by 24/7. My left ear has lost most of its hearing so I wear a hearing device, which does not give me clarity of speech but at least I can hear on a one-on-one basis, not in a crowd, not on the phone, not in movie theater, or any other gatherings Please take care and good luck
Hi Jack,
Wow 23 years is such a long time. I don't know how you've coped but well done, it must've been a difficult journey. I'm cutting out as much salt as possible and playing football twice a week and walking to work instead of getting the bus. Unfortunately in Scotland we don't get as much sunshine though.
I'll keep going as I unfortunately have no choice but I've never experienced anything like the dizziness, I've had a broken leg, numerous cuts and bruises over the years and burnt myself (through cooking) on a few occasions and I would rather go through all that again than the dizziness.
Hopefully over time it will get better.
I hope you get on well with the neurologist.
Thanks
B
Hi there,
23 different meds is unbelievable, it's good to know others are going through the same thing however it's horrible to know that you are all or have experienced what I'm going through.
The worst thing is my daughter seeing me at my worst however she's been a massive help (not all teenagers are bad) and my wife has been my rock.
I just hope this passes in time.
Look after yourself and I'll do my best too.
Thanks
B
Hi Tanney,
That's the ones, I've not been taking them that long, I suppose when I go through an episode, I just want the world to swallow me up.
I will keep trying as the doctor said to up my dosage from 8mg to 16mg in the next couple of weeks if things don't get better.
I get frustrated and expect instant results however I know I'm being unrealistic, it's just horrible when the dizziness comes on.
I hope it does get better however the injections (which I knew nothing about) could be something that I talk over with the doctor.
Thanks
B
Hi there,
My wife has actually mentioned acupuncture but I was sceptical about this so it could be worth a try.
I've not long started the medication however unrealistically I expected instant results.
I hadn't even heard of Menieres Disease until only a few months ago, I have Crohn's as well and I'm no longer on medication for that but this feels 100 times worse.
I do truly hope they find a cure and I'll be more than happy to donate to the cause to help everyone who goes through this.
I'm sorry that your hearing got worse over the years but I hope the symptoms have got better for you during that time.
Thanks
B
Hi there,
Yes I turned 40 last year, I've cut back on a lot of salt and caffeine. Luckily we cook most foods from scratch and hardly ever have a takeaway however I know I could always improve I.e. low salt in sauces etc.
I try to drink as much water as possible but again this is something I can do.much better at.
I really hope it doesn't get any worse than it already has but in s way I'm preparing myself mentally for it.
It's fantastic that you haven't had an attack in 19 months, I hope that continues to be the case.
Thanks
B
Hi there,
I really appreciate the advice on offer, I have tried to reduce salt and caffeine intake but no one mentioned sugar, this is something I'll look into.
It's funny you mentioned massage as I actually bought a massage gun which I have started using and it's great however my wife has said to get it done professionally to get out all of the knots.
For you to live with this for 46 years is truly astounding, you must be very resilient and I tip my hat off to you.
I'll certainly listen to you and the other posters knowing that you have all went through the same thing and I hope to do the same one day to other sufferers.
Thanks
B
hi BARRY am so sorry you're feeling this sick. i have been diagnosed with vestibular migraines(3 years), not exactly MD but shares similar symptoms (as do most vestibular disorders) I too have the vertigo and tinnitus, nausea and dizziness. i am on 16mg Betahistine 3x a day and AMYTRIPTALIN 1-5 at night. the difference with VM is that i am not loosing any hearing. my advice would be to try and figure out what your triggers are, and avoid them as much as possible. Mine happen to be, sugar, salt, excess stress, some environmental (smells, light) and I am to avoid all types of chocolate. Although the medication works (it takes a few weeks) I still have the vertigo (not enough to stop me living my life, but it does leave me feeling down and sometimes anxious). I decided to try some new treatment (chinese medicine: acupunture and some herbal) and see whether it completely removes the vertigo. Keep researching this illness and get acquainted with everything about it, which for me it helps and takes away some of the anxiety, I also looked into the inner ear and learned how it all works. Good luck
The spinning dizziness is truly the most awful thing in the world to me! I get sweaty and vomit and then i just have to lie down. Sometimes it has been so bad that I couldnt even make it to my bed and had to just sleep for hours on the floor.It causes me a lot of stress because I'm scared it will happen in public. :(
Dear Barry1979,
Your wife is correct in that massage therapy is good done with a deep tissue massage to get into the nerves/meridians to allow energy flow to the ears and head. I sure hope that you find what works for you to curb the onsets of the vertigo. I know that one of my triggers was alcohol, hence the existence of sugar. Cutting out all glutenous grains and definitely the refined sugars might just give you some relief. One isolated thing is not the simple cure but combination of things, diet, exercise, massage and maybe medication might be close to a cure. Wishing you much relief and happiness