I've been thinking lately how different things are with my MM symptoms than just a year or two ago. Lots of ups and downs (sadly, more of the latter than the former) but I can't say things have been on a constant downhill. I am wondering what others' experiences are -- have your symptoms stayed mostly the same over time or have things changed for you? My story in a (sort of) nutshell: -Sudden onset of symptoms in May 2011 at age 37. So, it's been exactly 4 years now I've been dealing with this. Woke one Monday morning with strange fullness in my right ear. Ignored it for about a week, thinking it'd go away on its own. The ENT husband had all sorts of explanations of what it could be but MM wasn't on his radar because, well, "that couldn't possibly happen to my wife." Had intermittent tinnitus start during that time too. Some ear pain but not debilitating. -Had my first of what would be 5 vertigo attacks that year about 2-3 weeks after the fullness started. Scared the living crap out of me. After the first one, I went into husband's department (he was a resident at the time) and after MRI etc got diagnosed with MM by his boss, the chairman of the dept. -Things were up and down those first few months. Symptoms would worsen and then get better, and I'd have days where I felt relatively normal inbetween. I got pregnant with our third child toward the end of that year, and although the pregnancy was the hardest of my three, my MM symptoms got remarkably better for the duration of the pregnancy. Not perfect, but definite improvement. As soon as I gave birth the symptoms returned with a vengeance. -For the next year or so, the intermittent fullness was the worst of my symptoms since the vertigo had mostly died down. It would get SO full to the point of pain. My whole head felt like it'd explode. Around Fall 2012, the tinnitus became a permanent fixture, never stopping (to this day). Back then it was still on the quiet side -- I definitely heard it when in a quiet room but for most of the day it was masked by regular noises in my surroundings. -Things have gotten much harder in the past 12-18 months. I've developed that constant vague dizziness, though Meclazine does help with it somewhat (I feel uneasy taking it daily though, so I try not to). About 6-9 months ago, I had several more "attacks" of vertigo but they were not as severe as the set I had in the first year. They didn't last as long (45-60 mins, compared to several hours originally), I could sort of make my way to where I needed to go (bathroom) without as much assistance, and the spinning wasn't as violent though still bad. I certainly couldn't drive or take care of my youngest or do much of anything but recovery was faster. KNOCK WOOD no vertigo attacks in the last 6ish months. However everything else has been harder/worse. The fullness is not as much intermittent as constant -- just a matter of HOW full. And the ear doesn't seem to get to the point of painful-full, but very uncomfortable with no real breaks. Tinnitus has really gotten bad. In the last 2 months, I've been stuck in this cycle of uncomfortable fullness, followed by slight release of pressure and a tinnitus so loud I can't hear conversations over it. It can last half a day like that. It wakes me from sleep at night. And my hearing has been slowly tanking during that time too -- up to 60 dB loss where it was not as bad just a few months ago. I'm on Verapimil, daily baby aspirin, Mg supplement for possible vestibular migraine (MAV). My kidneys are mysteriously showing signs of distress so where I had been on diuretics (prior to and just after pregnancy) I can't take full strength anymore, so am on 1/2 dose Diamox and being closely monitored by nephrologist. It's possible 2 years of strong diuretics did this to me -- we don't know. I'm 41 with the kidneys of a 70 year old. I tried JOH without much success for 2 years but still do take the lemon bios. Briefly tried AVs (though not quite at the rec doses) without any trace of help. Oh, and even though I'm in the U.S., I've been taking Serc (insurance doesn't cover of course) for about 7 months. Not sure if it's a coincidence or not, but the vertigo has been at bay since I started it. I keep thinking there's a link there (though on the flip side, also a link to when my tinnitus ramped up to crazy levels) but with a goal of avoiding vertigo from returning, I am afraid to go off of it. I'm not really sure what my point here is, other than thinking about how my symptoms have changed over 4 years and wondering if others have experienced the same.
I have cochlear hydrops, so I am fortunate to not have vertigo. When it first started in February 2013 I would have cycles of ear fullness and then a few days of clear ear and then fullness again. I found out I was pregnant in August 2013 and a few weeks later my ear started to feel much better. Like you, it came roaring back after pregnancy (well, actually during the last month). The difference is now my ear fullness/roaring is constant. It does not cycle except for I occasionaly have a day or two where its not "as" bad. I definitely think hormones play a huge role in my symptoms. The CH started just 3 weeks after I stopped taking birth control pills, so probably around the time the hormones from the pill were completely out of my system. I used to think it was a coincidence but based on the fact that I felt much better during pregnancy I am convinced hormones play a role. Now what to do with that information... I don't know. But my experience with pregnancy sounds similar to yours. Very interesting.
It is difficult to deal with all the symptoms of MD. I have had ongoing, constant tinnitus since 2012. First severe episode was oct 2013 with probably 5 anywhere from 3-6 months thereafter. In between was moderate spells with no vomiting of horrible spinning. 6 months is the longest I've gone with no vertigo. The hearing loss fluctuates. I wear a hearing aid. I have a history of migraine with aura (but never dizziness or vertigo with those) and suddenly they have arisen which is strange. Since early May I've had about 6 days when I've had mini-migraines with aura---they're not horrible, but painful and incredibly annoying. So yes, I think our symptoms and progression of MD can change. I just read on the Vestibular Migraine facebook page a paper that says both diseases can have implications for the other, primarily blood flow issues. Good luck---I don't know how I would have managed with this when I was a young mother. I believe exercise, yoga and reducing stress helps a lot.
Redbird - I actually went back on BCP when I was done breastfeeding #3. I had no need for the control part -- tubes got tied during c-section -- but went on for two reasons (after not being on the pill for many years): 1. I had noticed my MM symptoms always got waaaay worse during certain times of the cycle and 2. was having heavy bleeding issues and irregularity (tmi) that had never been an issue for me before. So for regulation on all fronts. With the recommendation of a neuro-oto and the blessing of the OB, I actually take the pill constantly to even out the hormone levels and don't take the "dead week" off. Now, in general during that time I've gotten worse overall (MM) however I don't have the week where things are absolutely terrible every month either. Netti - I have no migraine history but with several neuro-ENTs bringing up vestibular migraine I did a lot of reading on it last year. Then wouldn't you know it, I had 4 separate aura episodes. No headache, just the visual part. I'd hope it wasn't power of suggestion I would have had no idea what was going on, and probably would have thought I was having a stroke if I hadn't read up on it last year! Two episodes occured after a minor surgical procedure related to my kidneys (biopsy) so I chalked that up to anestheisa weirdness but then I had a few unrelated to that. It hasn't happened in a while. And yeah, it's hard to be a mom and deal with this MM crap. I've been raising an infant/toddler who is about to turn 3, and you know how physically tiring (and loud!) that can be. He's very hands-on and needy. And then I have two older kids who rely on me to chauffer them around, take them to their various activities, be there for school band concerts and dance recitals and the like. I feel like I am constantly gambling when I make committments to have them somewhere and pick them up, not knowing when the next attack might happen.
PleaseNoDizzy - sorry to hear about your symptoms. One question: when you say your ear feels full, do you also have hearing loss? I am trying to understand whether ear fullness always means hearing loss (which is my case) or not. I also very much sympathize with the difficulty of having MM and being a mum. I have two young children and this definitely adds on to the challenge.. best vaita
My symptoms started in October 2013 after a sneeze. I had lots of fullness and a couple of episodes of feeling sea sick. Then in December of 2013 I took a flight to Arizona and all hell broke loose. I came home and had bad motion sickness, an episode of vertigo, some episodes of loud, deep ringing. I could not drive over 50 mph in my car without getting dizzy. I got dizzy in malls and stores. I'm a teacher and every time I sat in the cafeteria for lunch, I got dizzy. I was just wiped out, too- tired all the time. Now I have sporadic vertigo, constant pulsatile tinnitus, and ear fullness. There's also hearing loss. I don't have the classic four symptoms of mm all at once though. My ear has never rung louder when I have a vertigo spell, and my hearing doesn't seem to diminish either. The tinnitus is a constant.
And, PleaseNoDizzy, I'm also a mom of two busy kids who need rides everywhere and who are involved in everything, so I can completely relate about making plans and worrying about whether or not I'll be upright for them. It sure has added an extra twist to our lives.
Vaita - For the first couple years, when my ear would get super-super full, I still didn't notice much in the way of hearing loss. Although it was really uncomfortable, I didn't have any noticeable hearing deficit. I showed low tone loss on audiogram when I was initially diagnosed but I actually regained a lot of that (and it wasn't a huge loss to begin with). Over the past year and most definitely the last 6 months, my ear at its fullest FEELS less full than back then (if that makes sense) however, when it's full, there's a very noticeable hearing deficit. To the extent that, if I lie down on my side in bed with my good ear into the pillow, I don't hear most of what's going on around me. Which sure, can be a good thing when you're trying to go to sleep, but I've had to drag out the old baby monitor to use with the toddler who is still known to have random night wakings. I simply don't hear him without the monitor. The other night, we had a huge downpour storm and even though we're on the second floor of the house, right under the roof, I wasn't aware of it until there was a huge flash of lightening and I picked my head up off the pillow and then heard the ROAR of the rain on the roof with my good ear.