Came up with list of levels. Would be interested to know what level(s) you spend most of your time in. I go between 3 and 4 on a daily basis. The list is obviously somewhat subjective. Do you have your own? If so please post. Or I'd love to hear your suggestions on how to perfect my list. Certain phrases you'd add or remove. I'm sort of a freak with comparative differences. Small shades of meaning, or level changes, that actually mean a lot (to a freak). Most lists are up to 10. But why? Just because it sounds nice and whole. I feel 7 is the right number for lists. 7 makes each level more significant. Is there really a meaningful difference between 9 and 10, or 1 and 2? From a user-friendly, practical point of view? Not really. Though I'm often tempted to make an 8 point scale. Since the space between 3 and 4 troubles me. Often I feel my dizziness is a 3.5. Thoughts? Also it's hard to make a list that accounts for head-movement dizziness vs. spontaneous dizziness. This list only deals with the more classic spontaneous-episodic dizziness of Meniere's. (Not say, post VNS head-movement dizziness). Maybe we could all perfect a list so well that it would replace those crappy doctor's office questionnaires. I think I've done this before, but my memory is shot, so fun all over again. I really don't know the point of this. Levels of Dizziness 1. Zero: No dizziness. Like a Meniere’s-free person. 2. Slight: Slight discomfort. A mild annoyance. Easily forgotten. If no simple medical solutions found, you’d probably not bother seeking more serious treatment. Driving and sports could be enjoyable. 3. Moderate: Aware that you’re kind of dizzy, but you can put it out of mind for long durations. Good mood possible and helpful. Sports probably awkward and unpleasant. If no medical solution found, a contented life still may be possible. Once acceptance is reached, one can "tough it out". [There’s some gray area between 3 and 4, partly based on how mood can effect perception of dizziness.] 4. Distracting: Uneasy. Lying down or sitting is much preferable. Can continue normal activity, but not pleasant. A good or willfully-positive mood can lessen effect, but can be hard to attain. Places like supermarkets, offices, etc, and interacting with others, takes on a degree of difficulty here. If the rest of your life had to be lived at level 4, you’d continually seek medical solutions. A contented, ‘normal’ life would not be possible. 5. Serious: Strong need to cease activities and lie down. A positive mood or strong will is not helpful. Some physical impairment (making a sandwich takes focus). A distinctly bad feeling comes over you. Moments of visual movement/shifting. You feel like a vertigo episode may be coming. 6. Severe: “True” vertigo. Slow to moderate spinning. Lying down is a necessity. Walking is greatly impaired but possible with focused effort. State is comparable to being very drunk. Faintly observable nystagmus. 7. Extreme: Fast spinning. Remaining upright is not possible. No visual control. Obvious, rapid nystagmus. Nausea, vomiting, divorce.
In my 21 years of having Menieres I mostly experience number 1 on your list. The only other number would be 7. Usually once or twice a month I experience at least 12 long hours of #7. Then the chills, 8 hours of sleep, then back to #1 until #7 came along again. I don’t associate the word dizzy with Menieres. It’s either vertigo or nothing.
I was this way for years. Except I’d go 6 months to a year with no symptoms whatsoever save for mild hearing loss. But then last year in April everything changed. I haven’t had a real “number 7” since November, but several times a week I go to level 6. I’m always at least a 3 and have movement resulting 4/5’s from time to time throughout the day. Great write up as usual, Pup!
Vixen, I can't tell if you're talking about the distant past or present. You don't still get severe 12 hour vertigo attacks, #7, do you? I don't think you do, but you stated things in the present tense. I hope to god you don't go full attack still. I'm sure you're technically right about the term vertigo. But for general understanding and not to exclude the under-educated I like to use common words like dizziness or spinning, too. MBG, I tend to forget how crappy things are for you. What with your humor and all. I'd no idea you had severe episodes a few times a week. Dude, that sucks. And I'd forgotten about your heart issues until this week.
You’re right, Pupper. Horrifically bad use of tenses. I’ve been ok vertigo wise for a few years now. When it was bad it was very very bad. Now that the vertigo has slinked away, life is good. I still can’t use the word dizzy to describe my Menieres experience. I’ve been dizzy. It sucks but vertigo sucks exponentially. Don’t get me started on giving birth... twenty hours of labour, forceps, etc. Then they told me it was a boy! After all that ... a boy? Not once but twice? Dizzy is a walk in the park. Just kidding, sort of . Just trying to inject some perspective... that what doesn’t kil us? PS My sons hung the moon.
Vixen, yes, there's dizzy. And then there's spinning or vertigo. It's just semantics. My mom used to tell me how disappointed she was that I came out a boy. Always hurt my feelings, though I've never let her know. You assume your mother was overjoyed at seeing you. Then she tells you she was disappointed. Just because of your gender. My cousin whose an NBA referee, has tried 5 times for a boy. Had fiver girls instead. Life is funny. Bees make honey. Love your new name by the way. I'm even sweeter on you now.
Pupper, I was joking about the gender of my kids. I never cared about that as long as they were healthy. Sorry my joke fell flat. I’ll argue with you about dizzy vs vertigo in regard to Menieres another time. No semantics. Dizzy is not vertigo! Love you, Pupper!
Pupper, I have dealt with 1-7. There is nothing worse than number 7. Nothing. But dizzy (#4) is no walk in the park. Not even close. Because dizzy doesn't go away. Vertigo does. Being dizzy all day every day... You start to lose your mind. I've been there. Good post. I think that is a pretty accurate description of the different levels.
I've made some revisions. And I'd forgotten the main reason I've made lists like this is to numerically track my daily dizziness over time, to tell if medical treatments/lifestyle changes are working. I've pretty much stayed at 3 and 4 since my VNS (with some level 6 days). I add up all the 4's per month, to compare months over time. Level 4's are what I consider being unacceptably dizzy. I suppose they may be called "dizzy spells". I divide each day into 7 periods. Early morning, late morning, lunch, early afternoon, late afternoon, dinner, evening. And assign a number to each period. A typical day will chart like this: 3,3,3,4,4,4,3. (With help from Xanax). I hope those who are in the midsts of Meniere's use charting. It's helpful as memory is unreliable, and charting allows you to be confident and accurate with what you tell your doctor. Levels of Dizziness 1. Zero: No dizziness. Like a Meniere’s-free person. 2. Slight: Slight dizziness when moving head to fast. A mild annoyance. Easily forgotten. If no simple medical solutions found, you’d probably not bother seeking more serious treatment. Driving and sports may be enjoyable. 3. Moderate: Aware that you’re kind of dizzy, but can put it out of mind for long durations, especially if you’re used to it after years. Good mood possible and helpful. Sports probably awkward and unpleasant. If no medical solution found, a contented life may be possible once acceptance is reached. [There’s some gray area between 3 and 4, partly based on how mood can effect perception or tolerance of dizziness.] 4. Distracting: Unease. Lying down or sitting is preferred. Moving around is possible but unpleasant. A tough minded attitude is needed to get things done. Activities like shopping, being at work, or interacting with people, make you feel even worse. Driving is possible, but unpleasant and unwise. If the rest of your life had to be lived at level 4, you’d continually seek medical solutions. A contented, ‘normal’ life would not be possible. 5. Serious: Strong need to stop activities and lie down. A positive mood or strong will is not helpful here. Eye-hand coordination is affected and actions can appear jerky. (Making a sandwich is unsmooth and takes focus.) May feel like you’re floating. A distinctly bad feeling comes over you. You feel like a vertigo episode may be coming, as this is often an escalating phase. If you’re lucky, or quickly take the right pills, or your Meniere’s has weakened after many years, you may rest here without tumbling into the dreaded 6 & 7. 6. Severe: “True” vertigo. Slow to moderate spinning. Lying down is a necessity. Walking is greatly impaired but possible with focused effort. State is like being distressingly drunk. Faintly observable nystagmus. Sensitivity to light and movement. Possible nausea. 7. Extreme: Fast spinning. Remaining upright is not possible. No visual control. Obvious rapid nystagmus. Violently ill.
Eh as the saying goes “it is what it is”. The heart stuff is easy although I’m pretty miffed that I was able to make it through 5 or so years of gradually increasing heart failure only to get another great organ....and then now I can’t do much physical activity at all with the MM. My kids are getting to that age where they want to be outside playing with me and most days that’s just a nope. I’d like to see a breakdown on tinnitus is well. Last night my wife was complaining of some ringing in the ear, likely from the Tamiflu. I asked her if it sounded like an old tube TV and she said yeah kind of. I said, “I’ve been hearing that non stop since 2009”. It’s rare moments like that when others can relate to what this disease is all about.
Oh also, I’d like to suggest a couple descriptives to level 7. 1. Tingling in the hands and feet 2. Intense shaking/shivering 3. Heavy sweating 4. Alternations between feeling overwhelmingly hot and cold 5. Inability to form sentences 6. Muscle weakness 7. Irrational thoughts and or behaviors 8. Distinct change, increase or disappearance of tinnitus Also for me, the period immediately following a long number 7 is distinctly different than the other feelings. Of course physical and mental exhaustion have a big part in that as well as a likely high level of anti emetics and benzodiazepines in the blood. So maybe a level 7.1? Level 7 beta?
#4 is where I am most of the time. I was at # 6 and 7 until I had the shunt surgery--now I don't have 'vertigo' but #4 is my life most days. I've learned I have to 'go and do' or become anti-social--and that's not me. But, sometimes I'm just not able to and if not, I sit back in my recliner--try to relax and often fall asleep. Getting out and being social (most of the time) helps. Planning for those getting out times causes alot of stress--because as we know, each day can be different and we're constantly dealing with 'what if' this or that is going on. But--we hang in there--keep on keeping on and as #4 says--keep searching for help by asking questions here and at the doctor's visits.
MBG, thanks. I'll keep those suggestions for an overall Meniere's symptom level list. I tried to keep the current levels/list focused dizziness itself. Yanks, definitely. 4 is where the dizzy becomes a real issue. The first few years 3/Moderate really pissed me off and got me down. But after all I've been through...and having reached the psychological acceptance stage of my MM, I'm humbled enough to be OK living as 3 for the rest of my life. I'd seek no more surgery if I could stay at 3. But 4 is not ok with me.
Cheers to the, “love,” and the fact that I just couldn’t resist a chance to rib you both. Remember, I’m a sweet, innocent angel...with a lopsided halo. https://youtu.be/OjvjhE5Oh9U
I live somewhere in the 3-4 range on your scale any given day, with the constant threat of immediate bumps to the 5-6 range and the always present possibility of that dreaded 7 (shhhhh, if we don't mention it, it may not come back) Seriously though, I have a more simplified scale that I use for describing mine as follows: 1 - No vertigo, mild dizziness, general fogginess, and an off balance feeling. Most times I can shake it off, although taking a valium helps a lot depending upon level of dizziness/fogginess. Other symptoms present and at various ranges of intensity. (this is daily life for me) 2 - Mild vertigo. I can function, but must take valium. I can work in this space but prefer to remain motionless and not moving my head at all. This hits me quite often and I just ride it out as best I can depending on where I'm at. it can last anywhere from minutes to hours. 3 - Medium vertigo. I can walk, but very slowly and with much concentration, like I'm really drunk. Can't really do anything other than sit or lay down, must have valium. I really just want to lay down and close my eyes at this point. This level will usually last several hours. 4 - Severe vertigo. Impossible to remain upright, anything other than fetal position on the floor is not going to happen (except when puking into the toilet) Forget about taking anything because it will all be coming back up quickly due to severe nausea, hot and cold flashes, dripping sweat and the desire to die often accompany this particular level. Thankfully, it doesn't happen to me often. When it does, I'm in for anywhere from 4-8 hours of hell followed by exhaustion and, God willing, sleep for 5-8 hours (perhaps longer.)
I like it. But I also like the small variations in Pupper’s chart as a can legitimately say I experience all of those levels quite often. For example, Friday and Saturday I spent about 36 hours somewhere between your 3 and 4. The worst I’ve ever had without actually having a vomiting attack. I was almost to the point of chewing up 5 or 20 Valium just to make it stop. But, simple is good. Thanks for the input and may be never max the chart again!
My dizziness has been about 6 for the last 5 days. I cannot work or drive. Does anyone else feel unsafe driving? I can't tell up from down when I am spinning. Also my stomach gets sick so it is almost impossible to work. This is my 4th episode in 1 year and now it seems to have camped. Also the noise in my hears is way loud. Has anyone tried having tubes put in ears?
Lark, you sound like me in my first year. I'm really sorry. Not sure what you mean by tubes. I've had a VNS (vestibular nerve section surgery). Be sure to ask your doctor about it. Message me if you want to know more about it. Can't tell much about your history, but it sounds like you're in the early-worst phase of Meniere's. It won't be as bad as it is now for much longer. Stay strong and actively pursue a solution ASAP.
Most of us have all been where you are right now. As Pupper said it does sound like early stages, although I've had MM for over 10 years and my worst year was this past one. I'm taking antivirals for my issues and I've had mixed results so far with them. If you are referring to middle ear tubes, they won't do a thing for Meniere's unfortunately. MM is all in the inner ear. Take a look around here, there's much to learn and above all...you are not alone.