So there I was, minding my own business back in March, when "Blam" out of the blue I got hit by several back to back severe episodes of Menieres. If you don't know what Menieres is, I will try to explain it. Frist let me say, the Doctors all state the following: "Don't know what causes it", "Don't know how to cure it", "Just know it is progressive." The progressive part is that a person with Menieres eventually goes DEAF in the affected ear. You can be affected in either your left ear (me so far) or your right ear (my 2nd Brother); or if you are really fortunate BOTH ears at the same time. Menieres was discovered in 1868 by a French doctor named Prospers Meneries, hence the name of the condition. He was pretty much laughed out of the medical community UNTIL the middle 20th Century based on his claim of discovery. To be diagnosed with this condition takes BOTH a Neurologist and an ENT Doctor to confirm the diagnosis as they do not know if it is Neurological based or ENT based. I was diagnosed in 2002, my brother in 1997. He had the condition for FIVE years before they finally put a finger on it. He pretty much thought he was going crazy during that 5 year span. When I told my ENT doctor who I was seeing for an entirely unrelated issue; he said that they were going to focus on seeing if I had Menieres. It only took them 2 1/2 months to confirm me. By the way, IT IS NOT considered a genetic condition based on siblings, as we are in only a WORLDWIDE sibling population of 5%. Very, Very Small grouping. Yet, strangely, my youngest Sister has now also been confirmed with Menieres. So we are doing more research about that. I have also read that there is consideration being given that Menieres is a minor form of MS; but again no-one knows anything for sure.
So what is Menieres and what does it do to you? When it attacks you, it can/will cause Super Severe bouts of Vertigo, Nausea and Throwing up. It can last from seconds to several weeks (my current bout). It WILL drop you to the floor/ground or whereever you might be standing at the moment. It actually makes you feel like you have a 10. or higher earthquake going on around you; yet it is ALL IN YOUR HEAD. This does have the "added plus" that when the doctors say your medical issue is all in your head, in this instance they are 100% correct. :) My brother claims it is like being on your own "Cruise ship" which is still tied to the dock, yet rocking. Symptoms can range from the super severe to very light, mild dizziness. You also have permanent tinnitus in your affected ear, as it kills the inner ear area (the progressive part). The tinnitus ranges from buzzing to a rushing of air, like you hear in a plane, to ringing, to varying tone sounds.
I have found, that I can tell changes in the weather before it happens, because my tinnitus will get louder and my "off kilter" feelings go from "good" to very poor or bad as in this last month and a 1/2. One reason I moved out to Kentucky was because there is more High Pressure around here (which helps me maintain) than the West Coast of WA State (lots more low pressure there).I went out there last Oct to visit family and friends and wound up spending three days in bed, because I could not function. So I told all, well this pretty much seals the deal about moving home -- NOT! Sadly, these past two months, for me at least, the storms that generally sail right on through here, decided to STOP and STAY and that low pressure they had in them really pounded me. When a major attack(s) hit, all I can do is be in bed, sometimes for 18-24+ hours trying to get my body to get back into some form of normalacy. It is also most similar to what you might see with a person who has undergone a Grand Mal Seizure and after they have had it, all they want to do is sleep. The only medicine I know of and use for Menieres is actually a Nausea med called Promethazine, which is the highest Prescription form of Dramamine used for motion sickness.
I seem to be, finally, coming back to what I now-a-days consider normal for me; altho my whole family says I was never normal to start with (aren't families such fun?) So I wanted to let you all know what had happened to me, as I had not been entering comments and the like as I try to do for each story that I read. I am really trying to play catch up with the stories also. I also want to wish each and every one a Happy Easter. PEACE to ALL. Janice Lynn
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An idea
Hi, Janice!
What I am about to say may sound like pure quackery. However, I've had good luck with it, as have many others.
A part of Menier's disease (I have identical symptoms, but have not had the actual diagnosis yet) is a tendency for the fluid in the inner ear to thicken, due to infection.
One result of that thickening is the potential for small pieces, or 'pebbles', of inner ear wax to loosen and drift around inside the structure inside the ear that contains cilia.
I forget the name of the ear part right now, but this inner part of the ear, and specifically the cilia (tiny hairs) inside of it, are what control balance; if these cilia are in any way affected, your balance goes off and you experiene vertigo, nausea, etc.
Another doctor who was laughed at, like Menier, in the 80's was one who developed a 'fix' for this problem, if it happens to be the type caused by these tiny, rolling balls of wax.
This doctor, who's ideas are becoming much more accepted now, came up with a VERY good system to relieve your problem (again, if it's caused by this particular part of Meniers disease).
Here is what you do. When you are experiencing an attack, get yourself lying down on your back with your head hanging off the ledge; that is, lay on your back on your bed and let your head hang, backwards, down towards the floor).
Now, either have a friend 'roll' your head to the left, then shake the head a bit, then a slow roll to the right, and a gentle shake again, or do this yourself.
What you are doing is 'rolling' those little balls of wax away from the worst area of cilia, to a less affecting area.
When I get a bad attack, if I'm lucky and do the above head-rolling maneouver right, the vertigo suddenly and completely disappears.
It's at least worth a few attempts; it's non-invasive, non-medicine, totally risk-free; if it doesn't work, no harm is done, and if it does... voila!
Of course, it's not a cure, but for me, it sure takes care of "The Dizzies" right quick! ("The Dizzies" is thanks to Liza Minelli's character on Arrested Development, a hilarious roll she had in which she, too, suffers from Meniers).
Good Luck,
Jamieboy
Hi, Jamieboy, I also know of
Hi, Jamieboy,
I also know of what you are explaining, it is called positional vertigo, when the "grains of sand" as my doctor called them get out of whack in the inner ear.
I was sent to a physical therapist for this and their treatment lasted right up to the time I left the table and got to their office door. I am checked constantly by my current doctor for ear wax
build up to help alleviate the issue, but never seem to have any that he has found. One type of doctor I do use and have been to four since being "introduced" to them, are Atlas Chiropractors.
They are Chiropractors who can do the general stuff that kind of doctor is known for, but also have specialized in issues concerning the ATLAS bone which is the large bone at the base of the skull and at the top of the spine. As I was told by the first two that I went to, "we can't cure you, but we can help to alleviate some of the symptoms; which they actually do. When checked, I am usually found to be "out of alignment" with the bone, and it is put back into place by use of what I call a "sonic hammer". It is a metal rod, the size of or just a little larger than a #2 pencil. It is placed on the bone and ultrasound waves are shot through it and the waves generated can actually move the bone; (a solid object), yet they do not harm the skin or underlying tissue. What is suspected by them, is that a distinct possiblity exists that blood flow to the brain is slowed by the Atlas bone being out of place.
They DO KNOW that the Atlas Bone can pretty much handle migrain headache issues by repositioning it. In fact, that is how my first Atlas DC got into that speciality, because he had migraines for over 7 years and was talked into seeing an Atlas DC. Claimed he did not have another afterwards. He also knew of my condition, as he said his own Mother had Meneires, so he was always willing to work with said patients, as long as they acknowledged "No cure known".
My brother, whom I mentioned previously is the one who told me about these Atlas DC's; as he was sent to one by a Menieres RESEARCH Doctor that he is a study patient of at the Univ of California, Davis Campus outside of Sacramento. I do thank everyone for their kind words, thoughts and suggestions. It shows that we maight not ever meet each other, but we are a "family" indeed. Happy Easter to all, Jan
Oh Crap!
Thats really nasty! Seriously, I experienced that symptom though I doubt the disease you have. It always struck me in the morning before I woke up so when you go to get out of bed you think its going to be a great day till LEFT=DOWN and you run into the door jamb face first before you meet the floor where the wall should have been but you got to pee really bad and getting across the hall is like an episode of Voyage To See The Bottom where the crew is getting throw all about. And it is so badly disorienting that by the time you finally manage to get to the pot you don't know which end to put in it because you will surely hurl and pee at the same time. You poor girl I only had it a few days at a time. It is worse than wide awake stumbling drunk. I feel bad for you and pray they find something that gives you some relief.
severe
If only one ear is affected I wonder if killing off the nerves to that ear might not be better
Hi, I know of what you are
Hi, I know of what you are saying and sadly it doesn't work for Menieres. It will simply make you deaf, but strangely, does not end the tinnitus issues. I had a close friend who had the procedure done, he is a musician, and felt that it would help him. He told later, worst thing he ever did.
I Hope You Can Find Relief
Hugs,
Jen
Hi Jengrl, You are
Hi Jengrl, You are certainly right about the weather, between where you and I live, it has really been as you said "the pits". It seems like the last few days have been steady warning sirens and/or my weathernet radio alarm sounding. Last night, I happened to go out to dinner with most of my family, and the wait staff were all standing looking out the windows at the tremendously black and threatening clouds. Called home to see if my son-in-law had come back from work and he answered and said, "you won't believe this, but I am standing here watching a small funnel cloud forming over the large A-Frame house about a mile away in the next subdivision". Thankfully, it did not form totally and did not set down any where. Ahh, the "joys" of spring weather in Kentucky. Eh??
Interesting information!
I have tinnitus, as a side affect of some medication I had to take. I had never thought about it before, but you're right, the ringing is much worse with this weather! I'll talk to my Doctor, maybe there is something she can do for it.
I know about the "uncurable/untreatable" stuff. Sometimes they won't even believe there is really something wrong! Grrrr...
I hope you can accept my prayers that you get some relief from this, and I hope you feel better soon!
Wren
Tinnitus
I also have tinnitus. Strangely enough it's in my good ear, the other one has had 60-70% reception since forever. The tinnitus has a number of components, a low mains-level hum, a higher, modulated hum about 250 Hz, a 1KHz whistle, two separate whistles about 20Khz and there's also white noise which sounds like I'm standing right next to a steam railway engine with the safety valve lifted :( And yes, I can actually distinguish all these different tones as well as use the ear for it's intended purpose!
Most of the above comes from driving round in a White Van for four years: 250,000 miles (not a misprint!) in a large, usually empty, tin box.
Now, I have noticed that my ear wax goes crazy every March and September, have absolutely no reason why, but when the wax is worse the tinnitus gets louder. I put the usual over-the-counter remedies in and eventually things get better - the tinnitus gets quieter.
You might find a similar relationship. I haven't noticed a connection with the weather, but then in the UK our weather patterns are somewhat different to yours! Hope this helps.
Penny
Lucky I guess
No, that was not the best of subject titles. As I read the comments above I think of all the abuse that I have subjected my ears to over six decades. As a kid my parents would treat ear infections by poring hot olive oil in my ears. About thirty years ago an ENT specialist asked me if I had any idea why I had so much scarring with in my ears. From the age of nineteen to forty three I served in shipboard engineering plants, on flight lines with jet aircraft and worse, under flight decks both in the areas of arresting gear, and catapult water breaks. Imagine the sound of a steel telephone pole stopping within a distance of one foot from speeds of 200mph. I also worked maintaining locomotives and have spent almost a decade in machinery construction. Least I forget, back in the days of non digital long distance telephone service I was employed in the line conditioning of trans oceanic lines and even today thirty years later I hear the 2600 hz tone. Yes some times my ears ring, but it's not common, Sometimes my ear will fill with wax, to the point I need a doctor, but that has only been three times in the last thirty. Yeah, lucky I guess, I should have major problems.