Newbie with Meniere's and Tinnitus

[Riya]

I am so glad there is a support because my friends and family don't seem to understand me. It all started 2 months ago and after a night of heavy drinking for a friends graduation, I woke up the next day to find my ears completely blocked.

Slowly I started experiencing sounds and noises and then vertigo. I went to 4 different ENTs and all they said was " there is nothing serious". Then my 5th ENT finally diagnosed me with Meniere's.

I have now a constant pitched sound in my left ear and pulsating sound in my right which comes and goes.

Is that common?

I am now on betaserc tablets 12 mg three times daily but with improvement only with my vertigo. Tinnitus is not going away.

Any word of advise for this? Sleeping and working has become very hard for the past few days and I am doing my PhD so it's very hard to concentrate in the lab. I have researched all about apple cider vinegar to ginkgo to cope with T. Please help I am going insane.

 

[Gman]

Hi Riya

Not sure about the apple cider vinegar. I sometimes drink it for general health, but does nothing for my T. Same with Gingko. But everyone is different and so is their T. Do you get hearing loss at the same time as the vertigo? If not, as far as I know, it may not be Menieres. I was told it is a group of symptoms that happen around the same time – T + hearing loss + vertigo. I was on Betaserc for extreme vertigo that was brought on a couple of days after an MRI. No hearing loss accompanied my T and vertigo, therefore no Menieres. After a few weeks my vertigo was mostly fixed except for occasional wobbles still now. Still have my T, but I am slowly learning to deal with it.

It could be an ear infection, or sinus issues?? I've had no luck with getting help from ENTs, but apparently there are some good ones out there. Was it a noisy graduation celebration?

Only thing that helped me a lot was xanax but as I'm sure you've read on this forum, it can be bad and end up causing T if not used correctly. I took a little bit each day over a couple of weeks. There are better ones out there, but I don't know about them.

Magnesium amino acid chelate helps me feel calmer and sleep better (glycinate is good too apparently).

 

[glynis]

Hi @Riya,
I have Menieres and had it over 12 years.
I take Betahistine 16mg three times a day and take Cinnarazine 15mg tablets when need extra meds.
They are for Menieres and reducing tinnitus.
Love glynis x

 

[Riya]

@Gman: thanks for ur support... I do have hearing loss in one ear but it keeps varying over time... but tablets have subsided my vertigo and nausea but there is constant ringing in the ear without any hearing loss and a here and there pulsating thump present on the ear that was primarily affected with hearing loss... my ent has ruled out sinus and ear infections... so the biggest problem I have is T. Fortunately I was never near any loud sound during the party and that's why I was surprised to get T eventually. I don't know how to deal with it since I am not able to sleep or work properly. All I can here Is the constant low pitched eeeee sound. I thought to give the white noise machine a shot... hopefully that helps?

 

[Carlyi]

Hi Riya, I'm sorry to hear that you have T. First of all Betaserc will not help with the T. at all unfortunatly.
I was also prescribed Betaserc for a couple of weeks and it does'nt have any influence on T.

Ginkgo can possible help but you would have to take it for a couple of weeks to notice any effect.
I know sleeping is hard with T. I use masking sounds like rain or crickets to help me sleep, and sometimes when i'm having a spike i take oxazepam.

I heard that melatonin helps alot for sleep aswell.

All the best!

 

[MattL]

I am so glad there is a support because my friends and family don't seem to understand me. It all started 2 months ago and after a night of heavy drinking for a friends graduation, I woke up the next day to find my ears completely blocked.

Slowly I started experiencing sounds and noises and then vertigo. I went to 4 different ENTs and all they said was " there is nothing serious". Then my 5th ENT finally diagnosed me with Meniere's.

I have now a constant pitched sound in my left ear and pulsating sound in my right which comes and goes.

Is that common?

I am now on betaserc tablets 12 mg three times daily but with improvement only with my vertigo. Tinnitus is not going away.

Any word of advise for this? Sleeping and working has become very hard for the past few days and I am doing my PhD so it's very hard to concentrate in the lab. I have researched all about apple cider vinegar to ginkgo to cope with T. Please help I am going insane.

I can only assume you have skipped a lot of detail here because your diagnosis doesn't make any sense. Nobody can possibly diagnose Meniere's based on symptoms that have lasted 2 months. Your t could be caused by any number of things, and Meniere's is probably the last thing on that list. I'm inclined to agree with the first 4 ENTs you went to. Incidentally why would you keep changing your ENTs? It's almost as if you were seeking a Meniere's diagnosis.

In terms of advice for you; unfortunately if it really is Meniere's (which may take several years to properly diagnose), you are stuck with the T, but you will find that you can adapt to it eventually. And you'll have bigger problems than T to be concerned about if it is Meniere's anyway.

 

[GregCA]

Incidentally why would you keep changing your ENTs?

To get multiple opinions: it took 4 of them to get to the proper diagnosis for me. The first 3 were adamant that the 4th one was wrong, but he was right.
The more data, the better.
Doctors make mistakes. Restricting your data set doesn't seem to be a good idea if you are trying to optimize for the best outcome.

 

[Riya]

@MattL hi thanks for your comments but I don't think anybody browses through ENTs to get diagnosed with MD. Since none of th doctors were helping me with the vertigo, ear fullness and T I had to keep changing till somebody had an idea what I had. I think it was weird to say I am perfectly alright when I have all these symptoms and I don't feel fine. The beta histine did help me with vertigo but not with T and ear fullness. If you have another diagnosis for me happy to listen! But I hope you understand that I was new to these symptoms and fear and anxiety took advantage. Now I am more calm but I still have trouble with the sounds in my ear and blocked feeling!

 

[Riya]

@GregCA yeah I agree and many doctors don't spend enough time to understand what you are going through. Making assumptions is then a common mistake. I am still not very happy that I have few symptoms but I am not sure what else I can do about it!

 

[MattL]

@MattL hi thanks for your comments but I don't think anybody browses through ENTs to get diagnosed with MD. Since none of th doctors were helping me with the vertigo, ear fullness and T I had to keep changing till somebody had an idea what I had. I think it was weird to say I am perfectly alright when I have all these symptoms and I don't feel fine. The beta histine did help me with vertigo but not with T and ear fullness. If you have another diagnosis for me happy to listen! But I hope you understand that I was new to these symptoms and fear and anxiety took advantage. Now I am more calm but I still have trouble with the sounds in my ear and blocked feeling!

Fair enough, but what makes you think this particular ENT got it right? Why not get a sixth or seventh opinion if that is your line of thinking? As I mentioned I believe it is almost impossible to accurately diagnose Meniere's after 2 months of symptoms, so that's why I would be more inclined to reject the fifth opinion as opposed to the other 4.

 

[Riya]

@MattL because the beta histine he prescribed at least alleviated some symptoms of mine such as vertigo and nausea. So pyschologically I assumed he maybe right since I was feeling better for a few days at least. Nevertheless, I am still checking with an audiologist and will go back to this doctor since my medications are over and check again why my symptoms are re occurring. Maybe ur right I'll check with the 6 th and 7th doctor if they help. I got to do what it takes to carry on with my life right.

 

[MattL]

@MattL because the beta histine he prescribed at least alleviated some symptoms of mine such as vertigo and nausea. So pyschologically I assumed he maybe right since I was feeling better for a few days at least. Nevertheless, I am still checking with an audiologist and will go back to this doctor since my medications are over and check again why my symptoms are re occurring. Maybe ur right I'll check with the 6 th and 7th doctor if they help. I got to do what it takes to carry on with my life right.

Ok well good luck with it whatever happens. I hope you find some relief from your condition. And if you do, be sure to let us know about it.

 

[Gin]

I am so glad there is a support because my friends and family don't seem to understand me. It all started 2 months ago and after a night of heavy drinking for a friends graduation, I woke up the next day to find my ears completely blocked.

Slowly I started experiencing sounds and noises and then vertigo. I went to 4 different ENTs and all they said was " there is nothing serious". Then my 5th ENT finally diagnosed me with Meniere's.

I have now a constant pitched sound in my left ear and pulsating sound in my right which comes and goes.

Is that common?

I am now on betaserc tablets 12 mg three times daily but with improvement only with my vertigo. Tinnitus is not going away.

Any word of advise for this? Sleeping and working has become very hard for the past few days and I am doing my PhD so it's very hard to concentrate in the lab. I have researched all about apple cider vinegar to ginkgo to cope with T. Please help I am going insane.

Trying Lipoflavonoids may be worth giving a shot. They have a tendency to work for those who have Meniere's disease. I was diagnosed a year ago and was ready to throw in the towel with anxiety over T. And I tried them and it worked. i take 2 in the morning, 2 in the evening, and 2 at lunch. Once it gets quieter, a few weeks in I go down to maybe 2 to 3 a day. It really decreased the sound. Also, you could talk to your ENT about possibly taking valium or xanax for episodes. I take xanax and promethazine when I have an attack and it helps.

 

[Gin]

Hi @Riya,
I have Menieres and had it over 12 years.
I take Betahistine 16mg three times a day and take Cinnarazine 15mg tablets when need extra meds.
They are for Menieres and reducing tinnitus.
Love glynis x

I called my primary today to call in Betahistine for me today. She called it in. I was pretty excited to get on it to help with the vertigo. I called the pharmacy to see it is ready. Not avaliable in the US

 

[glynis]

Try see if you can get Proclorperazine or Cinnarazine 15mg for Menieres .
Sorry to hear you can not get Betahistine.
Keep pushing for help as I know just how debilitating it can be and tinnitus on top .
Love glynis xxx

 

[Riya]

Trying Lipoflavonoids may be worth giving a shot. They have a tendency to work for those who have Meniere's disease. I was diagnosed a year ago and was ready to throw in the towel with anxiety over T. And I tried them and it worked. i take 2 in the morning, 2 in the evening, and 2 at lunch. Once it gets quieter, a few weeks in I go down to maybe 2 to 3 a day. It really decreased the sound. Also, you could talk to your ENT about possibly taking valium or xanax for episodes. I take xanax and promethazine when I have an attack and it helps.

Hi @Gin i do take lipoflavinoids and also other supplements since I have PT on the other ear. But the noise level has never changed and I am 4 months into my T... with no change despite various treatments... some days are bad and some are good... can't figure out what causes the bad days... so hoping I would get used it in the near future... thanks for you suggestions