Meniere's Diagnosis and Treatment over the last year
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I was diagnosed with Meniere’s disease 5 years ago after one vertigo attack but it subsided and didn't rear it's ugly head again until last June, 2017 when I had two bad 12 hour vertigo attacks with uncontrollable nausea in one week. At that time, I received a steroid shot, dexamethasone and went on a strong diuretic. When the Dr perforated the ear drum, I was considering going back to vertigo and nausea. The symptoms were temporarily relieved but returned in a few weeks. I did not try it again and did not try the Gentamycin either. Instead I went to a different Dr and they recommended surgery to remove some of the mastoid bone or place a shunt in the sac. The Dr removed some of the bone allowing more room for the sac to expand but did not do a shunt. He said it wouldn’t necessarily be any better to do both, as either one would work the same. I made it 6 weeks before I had pressure build up, but I didn’t watch my diet as closely during that time. I went back on a lighter diuretic prescription but went back off of it after about 60 days. I did not like the brain fog that goes with it. It has now been 6 months and although I haven’t had a bout of vertigo and nausea since, I didn’t get any additional hearing back. I still have only 15 or 20 percent remaining in the right ear and it is distorted and very susceptible to recruitment, so all loud noises are amplified when pressure builds up. I follow a low sodium diet but occasionally I get a fullness in the affected ear and my hearing aid is not reliable. I have been back on my diuretic (Triamterene 37.5mg and HCTZ 25mg) for 5 days and have seen some relief from the fullness and hearing clears up a little so I can use a hearing aid but the dreaded brain fog has started to return. I do have something that has helped me a lot and that is at the first sign or light headedness or fullness in the ear, I take 4 drops of 150mg CBD oil under the tongue and it goes right away and lasts about 6-8 hours. I use the CBD with no THC in it so it is legal in most states or online. I'm not trying to push CBD by any means, but it has made my life a lot easier with this affliction and don't go any where without it. I have done a lot of research on CBD and it has many benefits. The only drawback I have is that my, being on blood pressure meds it can bring it down a little but not dangerously low. I am resigned to my low sodium diet and try to keep it under 1,500mg/day. I get feeling sorry for myself having to take the diuretic and trade brain fog for ear fullness and a sensitivity to loudness. All of this being said, I have one question for the group: Since my one ear is only 10%-20% and I have multiple bothersome symptoms, is it worth killing the nerves and relying on only my good ear for hearing and balance if the other symptoms go away?
0 likes, 17 replies
maria77273 glennmorr
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glennmorr maria77273
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julie05708 glennmorr
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I have a 21 year old son, who was diagnosed eventually at 16 with Menieres Disease and I have seen what this horrible illness is doing to my son. At first he only had it in his right ear and after many experiments with high dose Betahistine, 96mg x 3 times a day ( as advised by the Consultant) and Cinnarizine when the attacks start, he had a little relief from it. About 18 months ago he went bilateral and the Consultant recommended direutics but they lowered his blood pressure too much and he’s kept feeling faint, the last thing he wanted on top of all the symptoms! He also wanted him to go back on Migraine medication but he had already gone down that route right at the beginning without much joy. About 6 weeks he picked up a chest/sinus infection and has had a terrible few weeks with vertigo and sickness lasting for hours, brain fog, unsteady on his feet and his hearing is very poor.
We are waiting to get back to the Consultant and I think the next treatment may be the injections in his ears!
As a parent, it is awful seeing your child go through something like this so I really feel for anyone who has this awful, life changing illness.
Anyway, good luck glennmorr with your journey and the answer to your question is we would probably say no, however we are not medical professionals so maybe be guided by your doctor. We were told when my son was finally diagnosed it would probably be just the one ear, however that has not been the case unfortunately. I hope you get some relief soon and whatever your decision is, I hope it goes well for you.
glennmorr julie05708
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Thanks Julie, best of luck to your son. Before I found the CBD drops, I took ginger capsules to help with nausea and dizziness. I got some relief if I wasn't in a full blown attack.
julie05708 glennmorr
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maria77273 glennmorr
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glennmorr maria77273
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Hi Maria,
CBD is short for cannabidiol, a derivitive of hemp. They also make it from the marijuana plant bit it would have THC and I don't want that in my system at all. The hemp oil does what I need to calm the nerve sensors that cause my vertigo and nausea. There is a lot of information online. I prefer the dropper bottle for my MD use but also use a lotion or balm for joint pain and muscle aches. I found a good information site when I googled CBD for Meneire's Disease. I think it is better than a dieurtic or steroid pills. The drops are calming and can reduce blood pressure a little so you should monitor before and after use.
maria77273 glennmorr
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jcharnock glennmorr
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Hi glennmorr,
Ive asked myself the same question as my Dr has suggested the next step might be surgery for me. At the minute my thoughts on it are, if they can garentee the symptoms will go away i.e no dizziness, no nausea etc, bit there is a chance of hearing loss, I'd be tempted to go down that route. For me, my hearing and tinnitus is bad in my left ear and i dont rely on being able to hear with it anyway. The only thing ive thought about and i dont know if you may have, is that if you lose your hearing in one ear and the symptoms go away, what if the MD comes back in your other ear. Thats my only concern with it all. My hearing in my left is at around 40% compared to my right, so im sure your option for surgery is much more tempting.
Can i ask, are you glad you had the first lot of surgery? Has it definitely made a difference to the vertigo?
Hope that helps in any way, thanks
glennmorr jcharnock
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jcharnock,
The mastoid bone removal surgery I had did reduce the severity of the attacks but I haven't got any of my hearing back after 6 months and still get fullness at times and have sensitivity to sound. I'm not sure if taking the CBD oil at the first sign of light headedness keeps the attacks at bay or not but I haven't given it a chance to find out. My Dr. originally told me the surgery was only 70% successful so I guess I'm somewhere in between. If I ever get any more hearing back or get additiional relief from the distortion I would say it was a success but for now I'm on the fence.
phil21842 glennmorr
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I live in South Carolina and was diagnosed in 2010. I am 67 years old this month. Both ears affected but my left ear came back. Word recognition in the left was at and still at 55%. The right ear has gone from 40% back then to 0% with always the constant loud ringing.
Attacks were steady at one every 5 weeks for 12 hours and then good until 5 weeks later. I got with an Otologist in Augusta Georgia. I went through what he called the ‘steriod blitz’ and I’ve been on the low sodium diet (fall off every once in a while) and take a 12.5mg diuretic and have gotten by with one 4 hour attack during each year until 2018. In February 2018 I had an attack on a Monday for 4 hours. For the next 6 days I had an attack for 1 to 2 hours and then they subsided. This past Monday, April 9th I had probably the worst one ever that lasted for 12 hours.
I too have thought about killing the right ear but not sure because the left ear rings with the loudness covered up by the right ear. Just not sure it will help or hurt.
I have not had any of the procedures you describe but mirror all your symptoms. The CBD oil is something I will look into and I thank you for sharing.
lillian44812 phil21842
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Oh my gosh Phil. I'm so sorry to hear what you are going through. This forum has been so helpful to me. I hope everyone will continue to share things that have worked for them.
lillian44812 glennmorr
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erin39096 glennmorr
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I don't know how to do this. I don't mean to be rude...I don't know how to just say type something here without responding to you personally. I cannot get in to see a doctor, but I have all the symptoms of this disease. The ringing is so loud. It's been two solid weeks now....24 hours a day. There is fullness in my ears. I just got over my second bout of vertigo a month ago, although the symptoms never went away completely. I am a professional musician and am terrified of losing my hearing. I'm scared and sad.
glennmorr erin39096
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Erin,
I fully understand your anxiety and fear. Although I never had ringing, I had fullness and and first didn't realize that sodium was the enemy. The CBD drops I take at the first sign of light headedness may help your tinitis. I cut out all processed meats and just about anything in a can. There is a lot of info on the web about low sodium diets and CBD (Hemp) oil. Hopefully you can slow down any hearing loss. Please reach out again if you have more questions.
lillian44812 erin39096
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Hi Erin. I've had dexamethasone injections, diazepam pills, and meclizine all of which have helped but not alleviated the dizzy spells and constant rushing in my left ear. From previous responses I'm just starting betahistine next week (had to have it compounded because no pharmacies here carry the pills). I also may test out the CBD oil. Meclizine is over the counter. If you can possibly get into a ENT doctor and have a thorough checkup they may be able to find treatments that will help prevent full hearing loss in one or both ears.