Investigated for Menieres Disease
Posted , 16 users are following.
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
0 likes, 28 replies
arax19947 barry1979
Edited
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
barry1979 arax19947
Edited
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
arax19947 barry1979
Posted
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
yolanda29073 barry1979
Posted
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
barry1979 yolanda29073
Posted
Hi Yolanda,
I have also had migraines in the past but never to the extremity of what you're describing.
It's the dizziness that bothers me the most but I'm hoping the betahistine kicks in but I'm also supplementing it with Ginko Biloba after someone else commented on that. From reading up on it, it helps with vertigo.
It's easy for me to cut out salt but I'm a big coffee drinker however I'm trying decaf coffee which I'm not a fan of however sacrifice must be made as this is a horrible thing to have.
A few people have mentioned acupuncture so I'm going to give that a try along with massage.
I hope your symptoms are under control.
Thanks
B
JGaitan501 barry1979
Posted
Hi again. Yes, take the gingko biloba. i forgot to mention that ive been taking that for over a year and have not had a vertigo attack. And you dont have to give up coffee. 😃 ive had 1-2 cups per day and still no vertigo!!
Gurung barry1979
Posted
Hi Barry I am sorry to hear that you are suffering from exactly the same disease like mine. I also had the first attack in August of 2019 and I suffer from 1 more or else every week. I end up hours in the toilet throwing up. I live in England and the waiting time to see the ENT is a struggle itself. I am currently on 96mg of betahistine and 30mg of propranolol but it had not done much to me. I also had steroids injection in my right ear but again it didn't help at all. My consultant want to insert a tube in the ear and has provided other options like gentamicin and sac operation later if they don't work. Did you not get any of these treatments? Right now I am also looking for a solution to our greatest challenge the vertigo and vomiting. I hope I come up with an answer very soon. Take care.
JGaitan501 Gurung
Posted
For me, reducing my sodium and taking 1 diuretic pill (called Dyazide here in the US) every other day has gotten rid of my vertigo. I can sometimes get foot cramps from taking too much diuretic pill, but have not had vertigo in 19 months now. It is a terrible disease. 😦
barry1979 Gurung
Posted
Hi Garung,
I'm in Scotland and it took quite a few weeks to also get an appointment for the ENT. The first time they tested my hearing and reflexes and sent me on my way.
I then got booked in for an MRI and another ENT appointment but the later came first. It was another hearing test then I was told to take Betahistine. It was finally last week I had my MRI but waiting on the results but I was told that they won't likely pick anything up from it.
In the meantime I'm cutting out as much salt as possible, cutting out caffeine altogether (which is difficult) but I'm supplementing betahistine with Genka Biloba which helps reduce vertigo so it's worth looking into that.
I wish you all the best.
Thanks
B
sammye38102 JGaitan501
Posted
im having cramps in my feet and across my back due to the hydrochlorothizide (diuretic) as well what can you do to alleviate? all electrolytes pickle juice liquid iv etc has high salt im adding potassium supplement but still getting them
michael86929 barry1979
Posted
Barry I know how you're feeling, last year I went through the same symptoms as what you have described. I would wake up on a morning not feeling to bad, within an hour I would get a feeling of dizziness then I would be on the floor not able to move my head without vomating. I would find myself on the floor for up to 6 hours. I had the same tests mri, hearing test balance assessment and was diagnosed with miniers disease. The Hospital gave ne serc8 tables and motion sickness tablets, the motion sickness tablets worked really well for me when i had an episode. I have been lucky as it's settled down a little bit lately, I only take 1 serc8 tablet at the minute and seems to help manage my symptoms. I have lost my hearing and wear hearing aids in both ears, not sure if you have any hearing loss with your symptoms. I get involuntary eye movements sometimes where I cant stop my eyes from moving from left to right. Hopefully your symptoms will settle soon and you can carry on as normal as possible, have you been given some excersices to help with daily life? you can get some excersices to help a vit like when you calibrate a white board thats the vest way i can describe it. I hope you get sorted soon, take care.
1william barry1979
Posted
My little brain thinks the problem is my eyes and my brain have come disconnected during an attack. The brain is trying to keep up with what my eyes are seeing, thus the dizziness. During my full blown attack my eyes are rapidly moving back and forth.. and my brain is trying to keep up with what my eyes are seeing, and it can't... thus the nausea. If you remember as a kid doing the bat spin, where you put your nose on a baseball bat and spun around it. When you stopped you felt dizzy and you eyes were rapidly moving back and forth. I surmised that the dizziness came from my brain trying to keep up with my eyes.. and it couldn't.
1st off, to me vertigo attacks are bad when you fight them. I was mostly sick when trying to move, go to the bathroom, sit up, or anything). I have found when I feel a vertigo attack coming on, to prepare for it. I take a valium, anti-vertigo pill, anti nausea pill, lay down and put a sleep mask on that completely covers eyes (concaved so it doesn't rest on eyes). Lay down and remain completely still and wait it out. I don't even know I'm having an attack. But if I make the slightest move I feel the wave of nausea coming over me. It sucks just sitting there, but better than puking. The attack seems to last less doing this. And I do take some THC (wink wink) on top of everything.