Multiple Sclerosis is within earshot
I don’t mean to open my blog with an annoying reminder of a Verizon commercial that will stay with you for days and have you, my dear readers, walking around and constantly asking people, “Can you hear me now? Can you hear me now?”
Truly, I don’t.
I love and treasure my readers and want to keep them around for as long as possible.
It’s just that when a blog idea hits, sometimes an obnoxious line comes with it and the only way to get rid of it is to share it with all of you. After all, we’re all in the MS cluster together aren’t we?
And so this week’s blog is about weird ear stuff.
I have mentioned my weird ear noises before and have even tried to come up with causes for them.
In my book I talk about them existing due to alien experiments and on a former blog I attributed them to a ghost train, (All Aboard.)
But like with many things MS, the weird ear sounds have gone away, come back, changed, gotten worse, gotten better and overall, bug the heck out of me.
I have even blamed them on bugs.
Earlier this summer my ear noises came back and they sounded like fireworks. Since it happened to be the weekend of the Fourth of July, it’s possible that they actually were fireworks. Since I live in a tourist area, the popping sounds my ear randomly hears could be visitors setting off more fireworks.
(It would be nice if I was hearing fireworks that I might actually see some fireworks- add some excitement to my mostly boring evenings.)
Then the noises changed again. Now they sound like microwave popcorn popping in my ear, which would be great if I got popcorn out of the deal.
The most frequent time these sounds occur is on one of my many nocturnal shuffles to the bathroom. When I am done and lie back down in my bed, all I hear is pop, long pause, pop, short pause, pop, pop, shorter pause, pop, pop, pop, etc.
This just makes me want to eat popcorn. Before I know it, all I’m thinking about is my buddy Orville Redenbacher and it’s all I can do not to get up, pee again, get dressed, and grab my car keys in search of a 24 hour convenience store.
Luckily, the MS fatigue symptom is greater than any old regular or weird MS symptom, and I am fast asleep before I’m turning on my computer to Google which 7/11 in a 20 mile radius may actually be open past 11.
These ear noises are more fascinating than disturbing and I tend to forget about them until the next time they occur and I start considering going out in the middle of the night for popcorn. Maybe I should just buy some to have on hand, except I’m trying to eat healthy. Is microwave popcorn healthy? It’s made from corn…
But when the ear noises started combining with a sporadic tiny ear ache, I thought I should get them checked out. I did the responsible thing. I hit Google. I could find no description of my particular ear sounds.
What I did find out was that I’m special. If my ear noises are MS related, I am in a small category (4.35% of the MS population according to About.com,) that has this particular symptom.
No regular old multiple sclerosis for me- give me even more unusual stuff in this unusual illness.
And according to the web, none of the other 4.35% of MS’ers are hearing microwave popcorn in their ears.
The web said I should talk to my doctor to rule out other issues before I blame MS. Those issues are wax in ears (gross but have had that checked and am proud to state that I am wax free,) or another, new illness. The web mentioned Meniere’s Disease, (many ears disease?)
So what does responsible me do with that information? I look up Meniere’s Disease which I am now convinced I have. How could I not have it? It consists of two the symptoms related to my MS– vertigo (fuzzy brains which is very different from foggy brains because it makes my brains fuzzy, not foggy,) and balance problems (klutziness to the extreme.) It also consists of two other symptoms I get from time to time; a feeling of fullness in the ear,(ie, minor ear ache,) and minor hearing difficulties, (ie. Can you ear me now?)
It’s taken me almost four years to learn how to spell the sclerosis in multiple sclerosis and now I may need to learn to spell Meniere’s Disease?
Oh I know what you’re worried about dear readers. You’re worried that I may try to diagnosis myself after a quick web check of this latest medical issue. I would never do that.
I spent two hours on the web before I came up with my diagnosis.
And, yes, I suppose I will bring it up to my doctor at my next appointment in three weeks. I just have to remember to add it to the list of other things I need to tell her.
I have about four lists already and the reason why there isn’t just one master list is because my foggy brain (not fuzzy- I can’t even think when I am dealing with fuzzy brains) can never remember where I put my old lists.
So, to prepare for my appointment I have made a new list-
- Tell doctor about my new self proclaimed diagnosis
- Find old lists
- Learn how to spell many ears disease…..
LOL do like I do place lined paper on your fridge, you go in it several times a day so when you make your tea or coffee it is right there.. I also use Bright highlighters to make it catch my eye…. And I have a huge calendar over my computer where I highlight important dates like Dr’s Appts and friends birthdays and each night when I am on computer I cross off the day… You can also set yourself a reminder on your phone with message to grab list from fridge.
Good idea friend- I’ll try to remember them. I am writing on my list to remember to tape list to fridge…
I’m glad you mention hearing issues, Yvonne. MS affects sight, speech, movement, sensation, and so many other bodily functions. Why do people rarely talk about hearing? My understanding is that one of Annette Funicello’s initial symptoms was in her hearing. I have bad tinnitus and significant hearing loss. Is that the MS? Who knows? I’ve asked doctors and never gotten an adequate response.
It just goes to show that we have far more questions than answers about this beast.
I didn’t know that about Annette Funicello- thank you for sharing that. It is true about how much we still don’t know. We know of course of optic neuritis in regards to MS, but why isn’t there more info on hearing? I’ve had this checked before but they can never find anything. Like I said, it is more interesting than concerning, at least until I started poking around on the web. I will definitely be discussing it with my doctor again but will probably be just as confused afterwards. In the meantime, I’m buying popcorn!
LOL, Yvonne…not that you’re having ear craziness…your blog entries are so entertaining. I, like Rick, have had hearing loss to some degree since I was in Jr. high school. I had to get hearing aides when I was 33. My issue is more clarity rather than volume. I have had ringing in my ears and every noise imaginable for several years. I also have vertigo…my first serious episode when I was 21. There have been about 5 episodes that put me flat on my back for a week or more over the past 23 years. I hope you get some answers. Another piece of RN knowledge for ya- too much aspirin causes ototoxicity…there’s ya another word to learn to spell…it’s easy though! 😉
Learn to spell it Susan, I had to look it up to see what it meant! Now I am confused if I have the many ears disease or this octomom thing… Since we are finding out that this ear thing is happening with people with MS, how come the MS community isn’t aware of it? Is it likely that the 4.35% of MS’ers with ear problems happen to be the same MS’ers who read my blog? If so, then I am in awesome company! Thank you for your fantastic insight.
I hear voices and music that isn’t there. Very, very faintly. I strain to make out words or tune but give up and assume it’s my imagination. I also smell things that aren’t there. Them I crave those things. MS is a hoot and a half!
Thank you so much Joyce for reading my blog and weighing in! I hope the music that you hear is good music- my personal favorites are the Stones and Pink. You said it on the hoot and a half thing- couldn’t have said it better myself!
Yvonne,
It may be neuropathy related in general. I have a nice set of weird ear symptoms that have no diagnosis except that I a have a neurological disease.
They include itchiness, humming, popping , and the ever present ringing 🙂 They have been present since the feet burning started in about 2008……. I find it interesting sometimes how much I can relate to some of the symptoms you deal with MS, and I have SFN
Keep the blogs coming!
Hi Leann-how are you? You are the first person to tell me that they get the popping sound too. I thought I was really off the wall with that one! It’s so bizarre to me that the medical community has not made this connection. Thank you for your comments. So sorry though that you go through so much of the same stuff. I would do a sad face here but I can never remember how to make them!
Happy to meet you today at the Booksmith/Musicsmith books store. I love your blog. Humor is sometimes hard to create but you’ve done it with elan, or eclair, or whatever. Good luck with the ice bucket challenge
The fellow I mentioned is Dr. Humor. This is his website: http://www.drhumor.com/
Roger
Hi Roger So nice to meet you too! How did it go today? Thank you so much for checking out my blog- so glad you like it. I will definitely check out Dr. Humor’s as well and am glad you shared it. As for the Ice Bucket Challenge- it went. Tried to put my own spin on it. If you are on Facebook you can see it on my regular FB page or on my FB web page- yvonne desousa.com Friend me so we can keep chatting and share info about the book marketing world.
Hope you have a great weekend!
As Artie Johnson said…”Veeery interesting.”
Have never heard of that symptom.
Chalk it up to just another crazy thing linked to MS.
Funny story (for us–not you!).
No, it’s actually pretty funny to me too. I can’t tell you how many times I’ve dreamed that I was eating popcorn only to wake up and find half the stuffing in my pillow gone! Kidding, old joke. But I still find it funny. Once again. thank you My Odd Sock friend! Leave it to MS to find me a dear friend who happens to be a sock!
Well I am with Rick! I have had ear problems over the past several years but only at certain decibel levels so I know it is nerve damage. Darn it all even a hearing aide won’t help with that. Thank you MS! I, too, also have chronic sinus drainage (VA allergies and the lovely Copaxone) and this makes it seem like I am hearing through water glasses, if you can understand that. My only phone is a cell phone and the reception here is odd at best because of the huge military presence and all the other towers which interfere so basically I just smile or say yes on the phone, watch TV and try to surmise what they are saying as it appears when it comes to music my husband can crank it up so the whole world can hear but when watching a TV show it is always too loud for him so he can’t hear it as it is TOO loud so down we go and if my eyesight was better I’d try to read lips. Face it my only real good sense is my sense of smell and oftentimes that is NOT a good thing to have. Never ask a doc about hearing loss as a part of MS as they will send you to an ENT who will then send you to an audiologist who will then send you back to the PCP or neuro as no one knows what is going on in there so no lists, no doctors, just me and my ever failing list of symptoms with no rhyme or reason and worst of all no cure. Good luck to you with the orville pop corn but not to worry this too shall change sooner rather than later as it always does.
Hey Judy- I’ve missed you! When we last spoke on FB you siad I had your email. But you forgot that I am total space shot so if I had it, I totally lost it. Pun intended-I’m losing it in all ways!!! But it is good to be in contact again. I’m sorry you can relate to this. And I totally agree with on on the “this too shall change sooner rather than later as it always does.” It has gotten to the point where it seems pointless to bring stuff up as by the time I go through all the referrals to find out what’s going on, it’s gone. And something totally different has taken its place. What can we do? About the only thing I can think to do is to whine about it in my blog- haha! My best to you friend..
One of my first symptoms was issues with my hearing! First it would sound like I was under water… but there wasn’t water in my ears! Then I would get the “popping” or “buzzing”. After several visits to an ENT specialist and several tests, he decided to run a MRI. Glowing lesions!!! Change in gray matter!!! HOLY MS!!! He referred me back to my general doctor, who referred me to a neurologist who specialized in MS to get my diagnosis on …. APRIL FOOLS DAY 2009!!!! NO JOKE!!!!
Dear Stacy- I believe you about April Fool’s Day- you just can’t make that irony up. I am in the same boat as you having received my news one week before Christmas, 2009. Merry Christmas to me!! This is the first that I have heard of weird ear noises leading to a diagnosis, yet neurologists don’t talk about weird ear noises in regard to MS-just crazy!! My very best to you and to all the insane stuff you are probably listening to right now…Thank you for checking out and commenting on my blog.
I have a very high pitch tone in my ears 24/7. It never goes away but does get louder and softer at times. When it’s loud I end up getting a headache. MS is just full of unknowns. Anymore anything new that come upon me is blamed on MS.
Me too Kathy, me too!!!!! Thank you for checking out and commenting on my blog. Please visit again soon. And my very best to you. PS- what do you take for the headache? Does anything help? Aleve is the wonder drug for me. But it causes wicked heartburn. So now I take a pill for that!
Well I am in the same boat as you. I was diagnosed with Meniere’s disease in October. Then was told there was no cure for it the only thing I could do was to drastically reduce my sodium and significantly increase my water intake. My symptoms started with what I thought was an ear infection fullness in the ear, hearing coming and going in one ear. Sometimes it would ring and sometimes it sounded like I was under water. I also had experienced bad bouts of vertigo and loss of balance. I was put on antibiotic drops and then a Zpak. months later I ended up seeing an ear specialist and found out I had some permanent hearing loss and that I have stupid Menieres
So very sorry to hear that Stacey. I’m hoping the hearing loss isn’t significant? I know reducing sodium and drinking more water is good for overall health but have they said what it has to do with ear issues? For me, it gets even more confusing as vertigo and balance issues can be symptoms of MS too. Plus, I have been clumsy forever so who knows what is going on when??? I’m wishing you are the best and thank you for your comment. We have all got to help each other cause I’m not sure the docs totally get it!
You are hilarious! First time I’ve read something you have written. I love it! I, too, have had the “pleasure” of putting up with the MonSter since 1985. I’m going to do my best to find more of your writings. You have a new fan!
Thank you so much Melanie!!! I swear, the only way I have stayed sane within the insanity that is MS is by making fun of that insanity. I feel like when I can giggle at some of the crazy then I am fighting back. So happy to share some of those giggles with you! I post a blog each Friday before noon and hope you will visit often!!! I have a book out too if you are interested called MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis that is also designed to share my MS story in a way that will help people giggle. So glad you found my blog!!!
Really smiling reading your blog, found today via @YogiJennie. I’ve had tinnitus for as long as I can remember (suddenly ‘needle blast’), but ignoring it is possible for me, /usually/. With my SPecialMS, (DX2013), dizziness/balance is a problem, particularly when DIYing in awkward positions (no traction as an excuse for not doing it).
You have another new fan!
Thank you so much Robin and thank you to @YogiJennie too! I’m so glad you came here and my blog made you smile! There is so much to relate to in our MS journey’s yet no journey is the same…. My very best to you in your journey and I hope you keep visiting and keep smiling!!! 🙂
Hi! I have MS too…I had for years, but it was mild and before MRI’s…then things changed….one of my first symptoms was severe tinnitus. It was in both ears. A tone…and each ear was a different tone…it was so bad it would blast me out of bed…I am an RN and even I didn’t know about all things MS….it’s actually 6%, or so I have read, that show a hearing loss and or tinnitus…thankfully, with MS treatment it is at a very low level, but the hearing loss is permanent….it has it’s positives as I don’t hear all the road noise…
Love your humor…I’m always up for a laugh!
Thank you so much Stephanie! I think it is so weird that this isn’t a more common, identified symptom. Especially since i have received so many comments in response to this blog. I’m so glad you enjoyed it and hope you visit again soon! I post a new blog by noon each Friday. If not for my sense of humor I think I would have gone insane on this insane MS journey!!
You have a great outlook to this yucky thing we have called MS. I too have had ringing in my ears for.years and years along with real bad knock me on the floor Nd don’t move vertigo. I Can honestly say I never was dx’d with anything after some serious testing even. Hmmm. That’s something I should write down for my next drs. Appt.. yeah right like I’ll remember to bring it. Anyway, I still have ringing in my ears and sadly enough I have just learned to ignore it. I have enough issues to deal with without that one to worry about too. I too hear popcorn popping all the time. I only know that it truly is popcorn when my very sensitive nose can smell it. My daughter has popcorn at least 1-2 times a day. So chances are I hear real popcorn popping at least twice anyway……so that’s something. Anyway, I hope you are doing well!
Thank you so much June!! I hope you are doing well too. Love how you talk about remembering your list at the doctors! I have list upon list and never remember them!!! Have a great day. I’m off to pop some popcorn…