Vestibular Disorder Association (VEDA) Resource page on Menieres
Vestibular Disorder Association (VEDA) Resource page on Menieres click here
The link I have shared is on Menieres Disease from VEDA`s website. This association was life-saving to me pre-diagnosis. It was the first place I was ever referred to by a physical therapist to inform my self on vestibular disorder. Resourceful and informative!
Knowledge is power!
~Trish
Anxiety Girl! My Super Power
Another Day Held Hostage By Menieres!
Another Day cancelled due to fucking Menieres Disease! I accept that this disease calls the shots most days! I accept that it ain’t going nowhere and I should be grateful that it’s not a disease that’s going to kill me!! But, I am sad, disappointed, agitated and just pissed off that I have to cancel plans again today!
It’s amazing after all these years of my cancelling on people that I am invited anywhere again! I am thankful for loving supportive friends and family for understanding!
I am beginning to think I would totally be ok being a “shut-in”! This is a scary thought! LOL so I will scroll down my blog page and remind myself…A good day is on the horizon “this too shall pass!”
My son is off work today and when he came out of his bedroom (woke up) I said I have to cancel…he said, looking out of our blinds…”is it raining yet?” Then. “Mom, you will be ok!” I am blessed! He knows what Menieres looks like on me and its affect and he accepts it too!
I am going to get off my pity pot before I end up with big giant ring around my ass!
~Trish
Menieres celebrity – click here to read
When I read about other people’s experience with Menieres especially when they can find the gratitude and humor I am Validated
I should be a weatherman!
I have been journaling my symptoms for over 3 years. Including changes in tinnitus, ear pressure, mood, anxiety increasing, balance changes and that brain fog….heavy head feeling. The reason I journal is in an attempt to find a pattern or a trigger for Menieres Attacks. I list the food I eat, and the weather daily. May sound OCD but the unpredictability of this disease and lack of any help — and I have tried ALL known treatments except surgery — I journal for relief.
What journaling for 3 years has shown me…
Barometric weather changes specifically the low pressure system type of weather changes – seem to send me into a horrific Menieres attack, and patterns preceding attack are noted.
My first sign is I have zero tolerance for noise, T.V., crying babies, restaurant chit chat,even humming drives me crazy. I get a short fuse, somewhat agitatednd I want to be in a dark room left alone. I notice my tinnitus gets really loud before it rains as well.
What journaling for 3 years hasn’t shown me…
Even knowing and observing documented patterns of my symptoms preceding attacks — I have not learned how to remember this knowledge to help reduce my suffering? On days with increased symptoms, I forget that all the above could be warnings of attack is coming. Maybe it’s just my nature to NOT feel like it’s onset of an attack or learned behavior to just be bitchy and annoyed by sounds, to feel like a flake because I constantly cancel any plans and isolate! Usually by the morning after increased tinnitus and sensitivity to eyes, ears and anxiety, when I wake up and get out of bed is when I GET IT…I recognize its back, it is Menieres. I am in vertigo, nauseated, very little balance and I struggle to the bathroom, still hopeful that it’s my “normal waking up the vestibular system” sucks feelings…but it isn’t passing…I’m suffering! I go back to bed, lie down and try to breath slowly and reduce my fear/anxieties! If I remember to do this attack is not as severe! If I don’t do this and anxiety kicks in, attack is harder, longer and I get worse.
At some point in the few hours of an attack I will look outside or on my phone weather channel and see chance of rain or some weather system and I think Ohhhhhh That’s IT! This will pass…RAIN please hurry! Once it does rain I feel amazing…not a drizzle rain… but a full downpour of rain…it’s relief!
One day I will pick up on the symptoms I journaled preceding an attack…and forecast an attack is in the horizon. Not that it matters, nothing will stop the attack…it will simply help me from being so hard on myself for wondering why I can’t stand noise and light and people including my favorite people! AND maybe stop feeling bad for feeling bad about feeling bad!
Hindsight has provided perspective but not predictions or forecasting for future…so I guess Weatherman career hmmmm not so much!
waiting…
A Good Day is Magic
The first day of Spring. Universal Day of Happiness (or is it National Day), 78 degrees, no wind, no low pressure system, no stress! Wait….I feel good, I am good, Wait, yes, I think it’s a Good Day! Oh that’s like magic!
What is A Good Day: Clarity of Mind, Energy flowing
For me: A good day is a day where I wake up with a clear mind, no brain fog or spinning, my mind is clear, I feel energy, I feel Happy and I want to open the curtains and let the sunshine in…it’s not painful to my brain to see Sun Rays!
When I wake up like this I want to do everything I was unable to do for the past month- due to symptoms of Menieres and lack of balance or that heavy head-y feeling, or anxiety ridden mega worry day of I better stay still as I don’t want “it”to happen!
What is a good day – aware of my spirit-staying connected and in the moment
On a good day, I want to rush, catch up, be everywhere do everything, but today was a good day and I practiced good self-care….I did 30 minute meditation/quiet time, I read from a book on a daily spiritual “reading”. I acknowledged to the Universe my gratitude for feeling balance. I took my day slow and steady. Pausing often to relax and be in this moment of good!
A good day – able to care for my body and wellness
I took a shower and shampooed my hair, without laying down for an hour after. That is huge! I walked my dog, Coco, not on that huge hike I thought would be excellent on a good day, but just around our pond, on the complex grounds and back home, about 10 minutes. Making sure to use my cane, not thinking oh it’s a good day, I won’t need it!
I made my bed!!!!! That means I am not in it! I phoned a few friends to thank them for understanding Why I didn’t accept invitations to events! I stayed connected to my network of friends but didn’t fill my day up with events. .Instead I paced myself so I could feel my good day! I watched T.V. and social networked for an hour on Facebook! I unpacked 1 box! Not 5! I napped for 30 minutes and I had a healthy lunch.
A good day feels like “I Love You” – self-esteem, soul healing – mind body and spirit
It felt so good to be here for my son, Nick, to have a conversation with him about him, and how his day at work was….it was not about what I needed him to do for me! I had prepared dinner for us, Salmon, Rice Pilaf and Peas…I rarely cook and if I do its on high..cook quick…here eat quick…or crock pot mess…standing and cooking anything can be horrible if your balance is shitty…so I took it slow…prepared for cooking about 5, rest, stovetop rice, actually able to manage 15 minutes and didn’t burn it on high!!!! Nick cooked the Salmon and we ate together! I took time to thank him for his patience with Menieres and my bad days….and I said…I love you. Yes, it was a good day — I haven’t had one this good in two months….it was quite a treat just to feel good and do good!
Great Resource – my diagnosis: Menieres and MAV
Sunday Funday!
2 of my 3 grandsons spent the night! My youngest son bought a WiiU to entertain them…Mario and Zelda. I used to play video games for hours and hours when my children were young! Today, with Menieres and visual overload Even watching the kids play I get nauseated and feel like I am falling. I am not sure if its HD or light sensitivity but SHIT I want my brain back! Menieres Sucks
Extraordinary Spin-ster! 