How Long Is the List I'm On?

[Joanne Philps]

Hi all I've just joined, can't seem to find anyone with my symptoms, which all started after a plane journey, my tinnitus is constant screeching in both ears, louder than I thought possible and then especially when I'm tired so most of the time a drum kit type noise in my right ear but under the drum if that makes sense.

The mobility issues are horrendous I stagger like an old drunk and feel like I'm on a bouncy castle, so far I've been told it was labyrinthitis, then Ménière's now vestibular migraine (I don't have hearing loss or headaches) each time I'm given a new prescription , just been given propranolol and yet they are beta blockers and it says they can make tinnitus worse?

Am I just on a list of things as the ENT doesn't care to investigate, so just give different medication and a different 'diagnosis' every time, this has been constant since 5th October 2016 with no relief from any of the pills, the only sleep I get is through alcohol, am I alone or does anyone have the same?

 

[GregCA]

Well what kind of diagnostic tests have you done? What were the results?

Also what's a drum kit type noise? I have a drum kit at home and it can make a variety of noises...

 

[glynis]

Welcome to Tinnitus Talk.
It can be hard to diagnose Menieres etc with out tests and a waiting game to see what other problems develop.

Betahistine
Buccastem
Proclorperazine
Diuretics
Cinnarazine 15mg tabs

All help with hydrops,labyrinthitus or Menieres .
I take Betahistine and add Cinnarazine with attacks.
Keep pushing for tests and answers..
Lots of love glynis

 

[Ed209]

Hi all I've just joined, can't seem to find anyone with my symptoms, which all started after a plane journey, my tinnitus is constant screeching in both ears, louder than I thought possible and then especially when I'm tired so most of the time a drum kit type noise in my right ear but under the drum if that makes sense.

The mobility issues are horrendous I stagger like an old drunk and feel like I'm on a bouncy castle, so far I've been told it was labyrinthitis, then Ménière's now vestibular migraine (I don't have hearing loss or headaches) each time I'm given a new prescription , just been given propranolol and yet they are beta blockers and it says they can make tinnitus worse?

Am I just on a list of things as the ENT doesn't care to investigate, so just give different medication and a different 'diagnosis' every time, this has been constant since 5th October 2016 with no relief from any of the pills, the only sleep I get is through alcohol, am I alone or does anyone have the same?

It's likely to be menieres, but if it's not and you're getting no further, ask a dr to rule out the very rare condition, Superior Semicircular Canal Dehiscence (SSCD).

Symptoms can be improved with this condition with a bone graft procedure.

http://vestibular.org/superior-canal-dehiscence-scd

 

[Joanne Philps]

Greg CA and the other replies, thank you, all I've had done is one nurse and one doctor look in my ears ( they were dry) one hearing test ( exceptional hearing for my age 56) and an mri scan 9/3/17 told to see ENT in 6 weeks, it is the same doctor I've seen three times, who said firstly labyrinthitis , use a nasal spray and take cinnarizine , second time Ménière's , take beta histamine and last week as my symptoms had got worse , I cannot leave my home most days for staggering and he said vestibular migraine and gave me propanodol , no change symptoms getting worse I think anxiety now as having palpitations , the tinnitus is 24/7 very very loud like a gas kettle just before you turn it off and the drumming feels like it's under my ear drum in right ear only and all I can describe it as is drumming or boom boom boom, it's not a heartbeat or a pulse as I've read some people have, I just think the dr has a list and is ticking things off!

 

[Joanne Philps]

Ed209 thank you I've looked that up and I don't think it's that, my hearing is apparently exceptional and there's certainly no loss , back in October when it started a gp looked at my eyes and said its not Ménière's , I also have to spend most of the day blowing my nose as I have tonnes of mucus.

 

[Ed209]

Ed209 thank you I've looked that up and I don't think it's that, my hearing is apparently exceptional and there's certainly no loss , back in October when it started a gp looked at my eyes and said its not Ménière's , I also have to spend most of the day blowing my nose as I have tonnes of mucus.

I didn't understand the drumming reference before, but that brings TTTS into possibility. You really need to see an ENT who's interested and can get to the bottom of your symptoms.

 

[Ed209]

Also, try a sinus rinse for the excess mucus. If it's brought on by allergies than a steroid spray like dymista would help.

Breathing in steam is also good for clearing your sinuses and Eustachian tubes. Try adding some menthol as well.

 

[Alue]

Does the drumming have a rhythm?

 

[Joanne Philps]

All I can say is that it's a drumming sound and if I push my ear really hard or move my head suddenly it might stop for a second, this morning it woke me up along with the screeching tinnitus and out of frustration I hit my ear hard and oh my god the screeching turned up the volume as did the drumming, I won't do that again, but it's very loud and a deep throbbing drumming and the tinnitus is a screeching high volume noise 24/7

 

[Alue]

All I can say is that it's a drumming sound and if I push my ear really hard or move my head suddenly it might stop for a second, this morning it woke me up along with the screeching tinnitus and out of frustration I hit my ear hard and oh my god the screeching turned up the volume as did the drumming, I won't do that again, but it's very loud and a deep throbbing drumming and the tinnitus is a screeching high volume noise 24/7

But does the drumming follow the rhythm of your heartbeat?

 

[GregCA]

But does the drumming follow the rhythm of your heartbeat?

See:

it's not a heartbeat or a pulse as I've read some people have

 

[Jkph75]

I have very similar symptoms. I am 99% sure it's Hydrops. Steroids help. Try a low salt diet, no caffeine, no alcohol. Sleep on a wedge so you are on an incline.

 

[Joanne Philps]

jkph75, selfishly it's nice to know I'm not the only one like this! I cut the salt when they said it was Ménière's and don't really have caffeine , trying hard with the alcohol , but prior to this had a very active social life and alcohol was part of it, unable to go out now due to looking like a drunk and sleep sometimes only comes with alcohol , as in I go to bed and toss and turn with these dreadful noises and end up at 3 in the morning having a drink just so I can get an hour or two of sleep, I have 3 pillows so am almost upright, still nothing gets rid of it though!

 

[Jkph75]

jkph75, selfishly it's nice to know I'm not the only one like this! I cut the salt when they said it was Ménière's and don't really have caffeine , trying hard with the alcohol , but prior to this had a very active social life and alcohol was part of it, unable to go out now due to looking like a drunk and sleep sometimes only comes with alcohol , as in I go to bed and toss and turn with these dreadful noises and end up at 3 in the morning having a drink just so I can get an hour or two of sleep, I have 3 pillows so am almost upright, still nothing gets rid of it though!

I thought some of those things might help with the drumming sound, but nothing seems to touch the rest of it. I was dizzy all the time just like you until I started Prednisone. It did nothing for the rest of my symptoms but it stopped the dizziness so I could function. Maybe you could get yourself a short course to see if they make a difference. If they get rid of your dizziness, then I am almost positive that we have the same thing. I take Flexeril to sleep. It's not a sleep aid but it works without any nasty side effects.

 

[Jkph75]

@Joanne Philps

Did this all begin right after you got off the plane?

 

[Joanne Philps]

No, after I arrived I went out with friends and we had a drink or two, next day we went on a boat trip, so on the Friday( the next day) when I started feeling lightheaded I put it down to too much partying and lack of sleep, but Friday evening when I was out ( no alcohol ) I kept feeling that I was going to fall over and that was the start of it the tinnitus began very quietly so much so that I was more worried about falling over.

 

[Ed209]

Joanne, have you ruled out BPPV? Have you tryed doing the half somersault or Epley manoeuvres? If not look at the videos below:





http://www.webmd.com/brain/home-remedies-vertigo

 

[Joanne Philps]

Yes I've done all those, more than once, even bought the baloon that you blow up with your nose!
I spoke to a new doctor this morning she's going to write to the hospital to see if she can speed up my appointment to see them again as I had my mri on 9 th March and they said go back in 6 weeks!

 

[Jkph75]

No, after I arrived I went out with friends and we had a drink or two, next day we went on a boat trip, so on the Friday( the next day) when I started feeling lightheaded I put it down to too much partying and lack of sleep, but Friday evening when I was out ( no alcohol ) I kept feeling that I was going to fall over and that was the start of it the tinnitus began very quietly so much so that I was more worried about falling over.

Did they consider Mal de debarquement syndrome for you? They said that they would have thought that I had it if I had been on a boat. I woke up with tinnitus that was nothing compared to what I have now a year later. That drumming noise developed and turned into a full blown generator. Sometimes it sounds like a washing machine or foghorn. Sometimes, it goes away but all of the other noises are still there. I keep getting bounced from ENTs to neurologists. ENTs say migraine associated vertigo, because the dizziness isn't spinning and it is more or less just continuous. Neurologist says that my ear us causing the headaches, because the tinnitus is continuous. Personally, I think I have Hydrops and migraine associated vertigo. I have never heard of a headache causing this level of tinnitus, plus this low rumbling sound is indicative of Hydrops. I have never heard of this sound being associated with a migraine. How long have you been on the beta blocker? Is it helping? They wanted to give me that but I didn't think it would do anything for me. Maybe I would reconsider if it helped you.