Anyone have type1 and Meniere's Disease?


(FreeHappyHolly) #1

I was recently diagnosed with Meniere's.  I can't stand it.  Wanted to see what other's do to keep the dizziness at bay.  I take a diuretic, an anti-dizzy and anti-nausea pill.  They knock me out cold.  Sometimes I feel like my body is falling apart and I'm only 37! 


(Lavonda) #2

What is Meniere's disease?


(AuDAlly) #3

FreeHappyHolly,

I'm a first year Doctor of Audiology student at the Univ. of Maryland and when I saw your post, I was instantly interested. I'm so sorry that on top of Diabetes, that you have to now deal with Meniere's! Have you had any success with the treatment thus far? Does the dizziness worsen when (and if) your blood sugar is elevated? 

If you are desperate for relief, I would recommend looking into clinical trials in your area. For example, research universities may offer clinical trials for treatment or at least be able to point you in the direction of research and/or clinical specialists. 

Please let me know if I can help in any way. Best of luck!

Allu


(Kateski) #4

Holly,

I also have Menieres!!! You can get off of the diuretics, which really don't help anyway...   Ask your doctor about compounded Betahistine Dihyrochloride.   I have found that stress is the biggest factor with this disease and stress management has really helped me.  For me the best stress relief comes in the form of exercise and yoga/meditation.  Self talk etc.  Like when you feel that you are carrying the weight of the world on your shoulders and you want to make everything perfect, give yourself permission to say, "I can't worry about this" and "This isn't my problem".  This has taken years for me to figure out and combat.  Please feel free to contact me... I have been so desperate in the past I had days where I was incapacitated for over 7 hours, vomiting from dizziness for 5 hours and I have even gotten black eyes from bursting blood vessels around my eyes from vomiting so hard.  I have been on Meclazine, diuretics, and a gamut of other evil drugs including suppositories.    I have not had an attack in about 5 years now :)   Sometimes I get a little dizzy around that time of the month because of stress and fluid retention... However I take my betahistine, and do a few other things that I know help and it keeps me from having attacks.  Also how much processed food do you eat?  Sodium and MSG are major triggers for Menieres.  Stop eating foods that come in a wrapper of any kind and you will be amazed at how much it helps.  I know a lot more about this disease than most doctors, because I have lived with it, done a ton of research and come out on the other side and they still think diuretics are the answer.  If you need any help, I can probably answer any questions that you might have.  Menieres is one of the most debilitating diseases ever, before my diagnosis, I was positive that I was dying.  Those were very dark years!  I would love to help you.

Take Care, 

                    Kate


(FreeHappyHolly) #5

interesting idea....correlation between blood sugars and Menieres....I'll have to watch to see if I notice anything.


(FreeHappyHolly) #6

OMG.  You are my savior!!!!!!!  I don't like doctors because they think the solution to medical problems is only found in their text books.  I'm going to ask about the med you mentioned.  He gave me these diuretics and said "oh yeah, you have diabetes too....better watch the blood sugars because these pills raise blood sugar".  I've worked like crazy trying to get my bg's under control BEFORE getting this new disease and now I feel like I'm back to square one with out of whack bg's.  I have so many questions for you!!!  I'm so tired of not being able to hear clearly out of my right ear anymore.  There is a constant wind-tunnel noise.  I do notice that stress makes it louder.  Sometimes I can even hear my heart beating/pulse mixed in with the roaring noise.  I notice it's bad in the morning.  Don't know if it's because I lay on that side or what (fluid pools in my ear??).  I totally know what you mean about the being perfect part.  I have a high stress job, just got through a divorce, have a daughter with type 1 too, and trying to be Mom/Woman of the Year on top of all that.  I get angry with myself that I'm making myself sick from all the stress.  What do you eat??  They say low-sodium diet but I'm like what the heck is that?  Everything seems to have sodium in it.  I have to watch my diet with diabetes and now I'm supposed to watch my sodium too?  I'm an emotional eater too so that makes it worse trying to deal with it.  I'm encouraged to hear you haven't had an attack for 5 years.  There is hope!!!  When I had an attach I ended up the hospital.  I thought I was going to die, just like you.  I couldn't find anything to provide comfort...I was so dizzy and throwing up foam because I didn't have anything left in my bed to throw up.  My throat was so sore from the throwing up.  I actually thought that dying was only thing that would offer any relief.  I am now terrified of having another attach.  Right now I can function but I'm so tired of feeling like I just got off a crazy fair ride.....I'm mildly dizzy all the time.  Have you ever been pregnant while having this disease?  Does it make things worse/better?  I'm not pregnant but would like to have another child.  I retain so much water during my pregnancies so I'm nervous that it's going to be a living hell.  I am so glad that I found you!  What about pop?  I heard diet pop is high in sodium too.  What is your diet like?   


(Kateski) #7

[quote user="FreeHappyHolly"]

interesting idea....correlation between blood sugars and Menieres....I'll have to watch to see if I notice anything.

[/quote]

The correlation that I have experienced has not been with the numbers themselves so much as rapid and extreme BG changes.