Meniere's Disease and Weather

[Gin]

So my Meniere's has been pretty much in control for the last couple of weeks.

I stay on the Lipoflavonoids, which has helped with the T. I have noticed that when the weather changes, like a storm coming in, I seem to have more problems.

Yesterday it rained a little bit. But today there is a big storm moving in. I woke up this morning with my ears screaming, my neck hurting so bad I can barely turn it, heart palpitations, and very dizzy (vertigo).

I do take some valium at night when needed. I take promethazine at night to sleep (knock me out). It has worked pretty well.

However, last night I need the promethazine to keep me from being so nauseaous. I was talking to my bff and we realized my Meniere symptoms really flare up when the weather changes.

Has anyone else noticed that? Baromeric pressure effects it?

Tomorrow I go in for a 2 D Echo test on my heart. They think on top of the Meniere's disease I may have some heart problems that contribute to this. I have asked for a Lyme Disease test, due to the symptoms being so similar, but because I live in the Southeast, they refuse to do it.

Frustrated and little scared. Asking for prayers and maybe some advice.

 

[glynis]

Hi @Gin,
My Menieres did flair up with weather changes.
Last year after a spinal tap my Menieres went nuts and also very wobbly on my legs for weeks and tinnitus through the roof.
I think zolpidem 10mg also added to how I was feeling.
Im awaiting see My Menieres consultant and audiology.

My doctor took me off Zolpidem and put me on a low dose Nortryptaline and made a massive change on my tinnitus.
No more head tinnitus or brain fog.
No more drone tinnitus.
Took the edge off high pitch tinnitus
and getting spells of silence occasionally ....lots of love glynis

 

[Jkph75]

You and I share a lot of the same symptoms. I have some massive neck and shoulder problems. I really think it's worth a try for you to see a chiropractor who specializes in this. You might feel a lot better.

 

[Coyotesheaven]

POTS (postural orthostatic tachycardia syndrome)?

Meniere's disease does not cause your heart rate to rise as far as I am aware.

 

[Jkph75]

@Coyotesheaven
I think vertigo causes your heart rate to rise.

 

[Gin]

I usually have good BP. When I went the other day it was high (which is rare). He put me on BP meds, but I haven't gotten them filled yet. I took my BP yesterday 3 times. All perfect. So I don't think that is the problem. I go into the hospital this morning for the 2D Echo. I'm sure it will come back as normal too. What bothers me, is they say it is Meniere's, but then a lot of my symptoms don't relate to Meniere's. Some do, the ringing of the ears, the pressure of the ears, the hearing loss, the vertigo, etc. But then there's the heart thing, the thing with the eyes. The muscle spasms, etc. Just frustrating. Hard to treat what I can't diagnosis. And I feel like doctors are starting to give up and just giving me valium and sedatives. I am not a hypercondriatic. Those people don't complain about the same symptoms for 3 years.

 

[Gin]

You and I share a lot of the same symptoms. I have some massive neck and shoulder problems. I really think it's worth a try for you to see a chiropractor who specializes in this. You might feel a lot better.

I did go to physical therapy with my neck for several months. It did help some. However, with the heart thing my doctor said until we know what's going on, stay away from Chiropractors.

 

[Gin]

Hi @Gin,
My Menieres did flair up with weather changes.
Last year after a spinal tap my Menieres went nuts and also very wobbly on my legs for weeks and tinnitus through the roof.
I think zolpidem 10mg also added to how I was feeling.
Im awaiting see My Menieres consultant and audiology.

My doctor took me off Zolpidem and put me on a low dose Nortryptaline and made a massive change on my tinnitus.
No more head tinnitus or brain fog.
No more drone tinnitus.
Took the edge off high pitch tinnitus
and getting spells of silence occasionally ....lots of love glynis

I am glad you are feeling better My neurologist put me on Nortryptaline, mostly for the migraines. I found it did help. However, I know it is prone to cause you to gain weight. And well, I'm trying to lose weight, get back into shape and get ready to do the half marathon in April. He suggested taking Topamax. But with the reviews I read and scary things said about severe glaucoma side effects I decided against it. Therefore, I just have migraines now. ha

 

[Jkph75]

I usually have good BP. When I went the other day it was high (which is rare). He put me on BP meds, but I haven't gotten them filled yet. I took my BP yesterday 3 times. All perfect. So I don't think that is the problem. I go into the hospital this morning for the 2D Echo. I'm sure it will come back as normal too. What bothers me, is they say it is Meniere's, but then a lot of my symptoms don't relate to Meniere's. Some do, the ringing of the ears, the pressure of the ears, the hearing loss, the vertigo, etc. But then there's the heart thing, the thing with the eyes. The muscle spasms, etc. Just frustrating. Hard to treat what I can't diagnosis. And I feel like doctors are starting to give up and just giving me valium and sedatives. I am not a hypercondriatic. Those people don't complain about the same symptoms for 3 years.

You have to remember that Meniere's is an idiopathic diagnosis, meaning it has no known cause. If you took 12 people with Meniere's, you might find 12 different causes. In order to effectively treat a disease, you need to identify a cause and treat it. When they do studies on different treatments and Meniere's, most of them never help enough people to reach statistical significance. This doesn't mean that they didn't help anyone. They just didn't help enough people for drs to justify giving that treatment to people with Meniere's. Drs don't want to be liable so they're not going to give out meds or treatments unless they can prove that they work. All they have to offer you are meds to mask your symptoms. Unfortunately, you either get really lucky and somehow this goes away or you get sicker and sicker, meaning that you lose more hearing and more balance function. No ear Dr is going to help you figure out why you have Meniere's. If you get really lucky a GP might.

I know exactly how you feel. All of my drs have given up. It's so frustrating.

 

[Gin]

You have to remember that Meniere's is an idiopathic diagnosis, meaning it has no known cause. If you took 12 people with Meniere's, you might find 12 different causes. In order to effectively treat a disease, you need to identify a cause and treat it. When they do studies on different treatments and Meniere's, most of them never help enough people to reach statistical significance. This doesn't mean that they didn't help anyone. They just didn't help enough people for drs to justify giving that treatment to people with Meniere's. Drs don't want to be liable so they're not going to give out meds or treatments unless they can prove that they work. All they have to offer you are meds to mask your symptoms. Unfortunately, you either get really lucky and somehow this goes away or you get sicker and sicker, meaning that you lose more hearing and more balance function. No ear Dr is going to help you figure out why you have Meniere's. If you get really lucky a GP might.

I know exactly how you feel. All of my drs have given up. It's so frustrating.

Yep. All mine have given up too. Daily painful, not just bothersome, but painful migraines. One neurologist said have you tried drinking coffee in the morning? Really? I wanted to kill him. ha. So according to my Ultrasound guy today, my heart is healthy no problems. I know I should be happy but that doesn't magically make me better. It just makes me look crazy, like Im making things up. I am in physical and mental pain, everyday. And the only thing I have to help me cope is Valium and muscle relaxers. I have to work 40 hours a week to survive. I do accounting, which is highly stressful. I look completely healthy so unless I mention it everyone thinks I'm wonderful. If I mention it, I'm just ungrateful for good health and a bitch. I can't even be happy anymore, it controls my life and I am 100% miserable. But I guess I'll pop a pill that makes me a zombie and shut up.

 

[KeyLime]

@Gin I'm glad your heart doesn't have any problems, but so sad and frustrated for you that you didn't get any answers.

 

[Gin]

@Gin I'm glad your heart doesn't have any problems, but so sad and frustrated for you that you didn't get any answers.

Thanks. It will be ok. I'll live. ha

 

[Paulie87]

I have the same hum/drone that Gin describes. So low frequency and really debilitating. It often pulsates, although not in rythm with my heartbeat. I get weird distortions to some sounds and feel woozy often at the moment (but no vertigo thankfully)

I have 2 well renowned otologists I see, One says atypical menieres, the other believes that not to be the case. It's so frustrating. I had a whole month up until a week ago where it went away or was very low and then it slowly came back this week when I was feeling a bit depressed.

I have an almost 3 month old baby who I adore and i love my wife and family, but I am so done. I feel so pathetic, a 29 year old living this nightmare. It's all I focus on.

I really don't want to leave my family behind and the upset it will cause them is what is keeping me here, but I know I am right at my limit. I can't take this anymore.

 

[Jkph75]

@Paulie87

I understand. This low noise is super annoying. It scares me having no idea what it is. Be thankful that is your only noise. I think I have a million other ones.

Have you been able to stick with the low salt diet at all? As bad as the noises are, after a while you get used to them to some extent.

 

[VRZ78]

If by eyes problems you mean nystagmus it is pretty commun in people with Meniere / Hydrops

 

[VRZ78]

I have the same hum/drone that Gin describes. So low frequency and really debilitating. It often pulsates, although not in rythm with my heartbeat. I get weird distortions to some sounds and feel woozy often at the moment (but no vertigo thankfully)

I have 2 well renowned otologists I see, One says atypical menieres, the other believes that not to be the case. It's so frustrating. I had a whole month up until a week ago where it went away or was very low and then it slowly came back this week when I was feeling a bit depressed.

I have an almost 3 month old baby who I adore and i love my wife and family, but I am so done. I feel so pathetic, a 29 year old living this nightmare. It's all I focus on.

I really don't want to leave my family behind and the upset it will cause them is what is keeping me here, but I know I am right at my limit. I can't take this anymore.

What you describe to me sounds like endolymphatic hydrops. It is a less advanced form of Meniere. Endolymphatic hydrops can evolved to Meniere but that's not always the case. It is mostly cause by viral infection to the inner ear.

Low pitched T, wooshing sound that follow the heartbeat especially when laid down, distortions, hearing another tones with a different pitch on top of the normal pitch, and balance problems with dizziness are the main symptoms...

You can try antivirals for several months see if it helps or this regimen that seems to help :
http://www.menieresresources.org/Re...nieresDisease-TheJohnOfOhioRegimenJan2010.pdf

It aims at unceasing the blood flow in the inner ear and lowering the pressure inside it.

More info on endolymphatic hydrops see it seems to correspond (they don't mention distortions though but I know it's commun) :

https://en.m.wikipedia.org/wiki/Endolymphatic_hydrops