Day to Day Changes

Hi Jimmy. I have been reading your posts for a while now and I often think that you have some commonality with my symptoms. I was diagnosed with Meniere's by two ENT, one of Penn network and the other from John Hopkins. It wasn't until I had some additional symptoms that I don't see in Meniere's that really made me question what was going on. I sought a third ENT that greatly questions the ability to diagnose me with MM. I, also, came across information that made me consider Lyme Disease. I am, currently, exploring that probability and had a complete bloodwork for all the related diseases to Lymes. I hope that you eliminate Lymes. It can manifest itself as many diseases. Anyhow, I still don't know what is going on with me but food never made a difference,....maybe weather, but never food. I've journaled everything. If you document food, drugs, weather and symptoms, it helps clarify if there can be connections with any of them. Good luck. I'm praying for you, and all the MM sufferers that I'm reading about.

 

Yes, there are good days and there are bad days. Sometimes I can attributed a bad day from consuming too much sodium the day before, but often there is no explanation as to why some days my ear is pretty good and other days I wake up and it is roaring. I have noticed that my ear tends to be worse though when I am not getting enough sleep.

 

Jimmy Alvin - I'm with you - I cannot find any rhyme or reason as to why some days are good and others aren't. I do notice if I don't get enough sleep, that's never good, but other times I get plenty of sleep and have a terrible day! It's SO frustrating! I will say that I think stress plays such a major part in all of this. Even if I don't think I'm stressed, it comes out in my MM symptoms. As my therapist pointed out, stress doesn't even have to necessarily be bad stress. Going on a trip, starting a new job, going to an event, etc. They can be positive fun things, but still stressful and wreak havoc on our ears. I've yet to figure out how to combat this, but if you figure it out, let me know

 

Jimmy,
Not knowing what each day will bring in regards to Menieres symptoms can really mess with you. I've had Menieres for 20 years. The first ten were hell. I was still working and raising 2 sons. I tried every remedy/ restriction short of surgery or gentamicin injections that was known at the time. This was pre any knowledge of anti vitals. Nothing helped . I can't tell you how many times I had to be driven home from work due to vertigo. It got so that I wanted to quit my job. That wasn't a good option so I had to struggle on.

I gave up salt, dairy, alcohol, caffeine, gluten. Nothing seemed to make a difference. The vertigo episodes were fast, furious, long lasting. The other symptoms paled in comparison to the debilitating vertigo so my focus was on trying to eliminate the vertigo. The more I worried about it, the less relief I got.

After a very humiliating public vertigo attack that left me debilitated and suffering for six hours until I could get a hold of myself enough to call a cab and get home I discovered that that was the worse that could happen and I survived it.

I had an epiphany after that experience. We only get one life and sometimes it comes at us hard. I was going to try to enjoy my life in spite of the Menieres. I quit wondering if I was going to have a crappy day. I got some Ativan to take at the onset of vertigo. I started back on the things I had been depriving myself like coffee, the occasional drink. I accepted that the vertigo would come at will and that I would likely never know why.

I know how hard this is, because I lived it for 10 years. My last 10 years with this has been better. I still have crappy days. I have 24/7/365 screaming tinnitus. The fullness rarely goes away and I am deaf in the affected ear. It's not fun, some days require extra effort to not get down, but life is good again. I pretty much do what I want when I want.

I tell you all this because I want you to know that it can get better. We can't go back to the way we were before this frigging disease hit us. We can take steps to live our life as best we can. I hope you can get a hold of some Ativan as it stops he vertigo within a half to an hour for me. It takes away the stress and fear of maybe an attack coming because you know you can stop it. The other symptoms, while they are annoying, are not debilitating so I grin and bear it and lots of time am able to forget about it.

Life is short, Jimmy. I hope you can find a way to enjoy yours.

 

Hi Jimmy,

Your not alone when it comes to each day being different and not expecting it!
You've almost described the same symptoms I had.
Yesterday both ears ringing full blast, usually its my right ear louder than left but nope they both rang the same tune all day / night. slight headache . Then while at work in the evening went to the bathroom just starting to stand up barely from the toilet seat and wow dizziness hit and started going forward and almost hit the ground head first..caught myself and tilted myself backward leaned toward the wall. ( boy would this be a difficult one to explain to my co workers if I had hit the floor injured! ) This happening was defiantly unexpected for me! Then during the rest of my work night the loss of balance kicked in which has been on the increase for me now the past week. Vertigo less, loss of balance more and harder to hear the customers more. Can be so very frustrating ! Made it thru my work night and got home safe.

Woke up this morning with a nice low pitch ringing in my ears much lower than yesterday and now afternoon still same pitch which I hope it stays that way during my work night. Still having loss of balance today and will have to be very careful at work as I am on my feet the whole shift and deal with customers. So I never know what each day is going to be like for me, scares me often especially at work around other people.

 

Aww, dammit, Jimmy. My heart goes out to you. This disease is trying to get you, but it won't. You'll beat it. Hugs!

 

Jimmy I am so sorry to hear you are struggling with this horrible disease. I don't know much about your story but have you tried any invasive treatments/ surgeries? I know there are many people against them but at the he end of the day you need something that will help you get your life back. I had EDB surgery done 9 months ago and since then I have had zero attacks. I got my life back and I appreciate it like never before. If for any reason the great results disappear one day I will not hesitate to ask for Laby. Just remember,there is your remedy out there. You just have to find it. Stay strong. Big hugs

 

The book Heal Your Headache by Buchholz has an excellent explanation of triggers and how they work.

No two days are exactly the same because ultimately there are just too many variables at work simultaneously. I very much doubt whether anyone can honestly say that their diet, sleep, stress, sensory stimuli (visual, hearing, smell etc.), environment, the weather, physical activity, medication etc are exactly the same from one day to the next, either in terms of quantity, quality, timing etc. Life would be pretty boring if you could.

If you subscribe to the viral theory then there will be periods of greater and lesser activity. If you subscribe to the NUCCA theory then your physical movements are unlikely to be exactly the same from day to day.

Random and episodic is just that. It is irrational and deeply frustrating. Keep the faith, and keep plugging away with the self-experimentation until you can isolate what works for you as an individual.

 

One of the four class symptoms of Menieres is fluctuating hearing loss. For some people things are more episodic, a flareup then reversion to normal although often each flareup results in a little more hearing loss. For me, i had the hearing symptoms of cochlear hidrops 24/7/365 but even so, they changed from minute to minute. Doctors who do not see a lot of Menieres often do not realize there is such variation from patient to patient and from day to day. My case did respond to antivirals. Over time, the symptoms went away entirely and stayed away for years now, without continuous antiviral treatment. There is however, some residual damage that eill never go away as there is from many diseases.

 

Jimmy, I feel frustrated also. Having been diagnosed with migrains in the past I had Zomig on hand on Monday when I had a severe headache and vomiting. I wish I could tell you that it was effective this time but I vomited up the medicine.
Hope this is a good day for you. June was pretty good to me. I'm so thankful for the days I get out but I haven't totally adjusted to not knowing how I'll feel and not being able to follow thru with commitments. God willing people will continue to understand that I don't want to cancel.

 

I completely relate Jimmy Alvin. I think I'm one of the few people who have not had great luck with Antivirals. I started last fall and did awesome until April then my symptoms came back fast and furious. Per Dr. Gacek suggestion, I switched from Acyclovir to Famvir three weeks ago. I did pretty good for the first two weeks (no vertigo or dizziness after 4 episodes in a little over a week), but now the dizziness is creeping back and I've been dizzy and off balance three of the past four days. The weather here in Cincinnati has been a lot more humid and rainy, but not knowing how you are going to feel on an hourly basis is terrifying. I have to go to Chicago for work next week and I'm petrified of flying up there by myself. I wish I had an answer for both you and me!!! I had a pity party on the 4th of July because I feel like I have no friends left and am essentially a different person than I was a mere 16 month ago having lost everything I once enjoyed. I'll keep plugging away and hope one of the things I try will eventually work!!

 

Jimmy, I completely understand the frustration. I also ask my self what the heck is causing this... Something has to trigger this. It cant just happen!!! There has to be something. Ive cut out caffeine , alcohol, smoking, and keeping to a strict low salt diet. To the point where I eat the same exact portion and meals daily, to keep it constant as It can get. And still have issues. I'm to the point where I don't feel a quality of life anymore. I don't care that I'm 35 years old. This is not the life I thought I would be having 4 years ago. And with no help from drs I'm pretty much stuck. I really am getting to that point of no return zone... I pray that you have good days soon buddy,, Everyone needs a win every once in a while.. and if its not my turn bud I hope its yours.


p.s. thank you for the site for having a spell check on here.. with out you I would sound like a 2nd grader.. never knew how bad my spelling was...