This Stupid Disease

I've had a setback this weekend.  Starting Saturday, that feeling of unsteadiness where I feel better holding on to something when I walk is back.  My right ear which is my good ear has been hurting.  The funny thing about it hurting though is it seems to coincide with weather.  I've had dizziness and a  mini-spin and I just can't stay awake.  My hearing has been off as well.  Last night, it all culminated in a migraine.  This morning I have woken up to that all too familiar pain at the base of my skull/upper neck.  Thinking I should just call my chiropractor and see if that'll help. 

Looking back at my food log, there's nothing glaring that points to this which either means there's either no connection or I haven't found the right trigger.  I go back to my ENT next week.  Wish I could get in sooner.  It's easier to remember how bad this feeling can be while you're in it.  When you're feeling better, you are so grateful and on such a "high" that you can almost overlook a couple days of misery.  Still have a lingering headache today too.  Bleh!!!!!

New "diet"-one week in

So I'm horrible at sticking to a diet.  For this to truly to be an elimination diet, I have failed miserably.  Alas, I knew that going in so I tried to make a goal for myself that I could attain-to eliminate aspartame and to avoid msg.  We have done well with grocery store trips not to buy anything with msg in it but I've been out to eat twice now and that's really a no-no unless you purposely order stuff that's msg-free.  At least I didn't eat Chinese.  I have done well with the no aspartame though.  As of now, I can't tell any difference really.  It almost makes me wonder if I have a "sugar" trigger.  Ha! 

I've been keeping all this stuff on a spreadsheet.  My meals, snacks, beverages, weather for the day, stress level, symptoms for the day, and a place for anything else I feel I should note.  Based on one week, I would have to say weather seems to be having the most effect.  We've had a snowstorm and today it's raining.  Yesterday, I had 2 vertigo spells that required valium.  Luckily, the valium did the trick. 

The only other thing I should probably add is some kind of column for my level of activity for the day.  Since I've just come off of 2 surgeries since November, I'm way out of shape.  Over the past week, I've done more than I have since last October.  Could be that it caught up with me yesterday.

I've lost more weight and am still struggling with my lack of appetite.  My Gyn says my appetite should be back to normal in another week or so.  I still have a hard time getting 3 full meals in a day.  Now, I'm down to about 113.  That's okay for now as I'm only 5'3" but if I lose much more, I'm going to start looking rough. 

Is My Diet Affecting My Meniere's?

Over the past few days, I've been wondering if there was a link between MSG and my dizziness.  I had gone a good while without problem when I consumed a meal with MSG in it and within 24 hours, I had some vertigo problems.  However, at the same time, we were experiencing a lot of rain and I know weather can be a factor too.  I've been dizzier today as well and it's been raining all day.  But I've also been thinking back to what I ate yesterday and wondering if there was a connection.

So just out of curiousity and after doing some reading on www.menieres.org/forum, I've decided to cut out all aspartame drinks for a while and to make an effort not to eat anything with MSG in it.  The problem with MSG is that it is hidden under other so many other names like hydrolyzed vegetable protein or yeast extract.  I am already a vegetarian and have been for 18 years now so giving up preserved meats is no big deal at all.  Don't like Chinese food either so no loss there.  We just went grocery shopping and did our best to read labels and avoid anything that had those ingredients.  Overall, I think we did pretty well.  Of course, stress is a major factor and I definitely have a ton of that right now.  Tomorrow especially guarantees to filled with stress-have to argue with supplemental disability insurance company, go to work and grade papers, go to follow-up with my Gyn, and all of this with my kids in tow.  Yikes.

The smart thing for me to do would be to prepare some kind of spreadsheet of my diet, the weather, stress levels, and my symptoms so that I could perhaps determine some kind of correlation.   I am partially inspired to do this by some of the stories I've read of people who cut out gluten or dairy, etc and had a massive reduction in their symptoms.  Some even had a decrease in tinnitus and a dramatic improvement in their hearing.  Many of these people have MAV but not all of them so I figure it's worth a few weeks or so of avoiding certain foods to see what happens.  This will not be a pure elimination diet but it's a good place to start!

Vertigo sneaks back

I've been under a tremendous amount of stress lately from health to financial to family to losing a pet.  It seems that you name it, I'm dealing with it.  I guess it should be no surprise then that I got hit yesterday by a vertigo attack.  I had just pulled in the garage after picking up my kids.  I don't know why but for some reason that's always the point where I get dizzy or queasy.  I'm fine while I'm driving but when I come to a stop, it's like my body doesn't.  Anyway, at that exact moment, my husband called to give me more stressful financial news and I could feel it all getting worse.  I popped half a valium then and there and got myself and the kids inside.  Thankfully I was still not in a full-fledged attack.  I sat for a minute or two and then got back up to help the kids and the vertigo came back.  This was the falling down, getting ready to spin out of control kind.  I popped another valium, laid down, used my Meniett and amazingly within a few minutes felt better.  I was able to get back up and make dinner and feel as close to normal as I usually feel.  Although that little attack was enough to make me sleep 11 hours last night. 

It's disturbing that it came back like that but my doctor repeatedly tells me stress is the worst thing for me.  I know he's right but how do you avoid it?  The answer must lie in how you deal with it.  Writing about it seems to help me a little.  I think being able to get out the house more would help too.

Back in bed for the day...

Heh...the title makes me laugh.  Such a middle schooler at heart.

Alas for me, back in bed is not where I want to be.  I woke up after sleeping another 11-hours last night to pain and fullness in my good ear.  The mysterious pain.  I am definitely off-balance and walking slowly and lightly holding on to things here and there to assure myself I'm upright and okay.  I'm dizzy even when I'm lying down.  Definitely overdid it for Christmas.  Trying to remind myself, it could be worse.  I've been through some of the worst this disease has to offer.  While what I am currently experiencing is frustrating, at least it is not the hell that is a full-blown vertigo attack.  Also, I am always mindful that I could be dealing with a much worse condition.  Meniere's is debilitating but at least it isn't terminal.  It may temporarily disable me, but it won't paralyze me.

I am sad though because I am here at home alone missing out on time with my kids again.  We finally have a sunny day and they are off to try out their new scooters outside for the first time and I'm missing it.  I can't be upright that long and I'll have the kids all week this week since school is out.  I have to take it easy while I can.  I'm also going to miss out on lunch with some old friends I haven't seen in years. 

I wish I knew what this ear pain was.  I'm thinking referred pain from a possible migraine.  I have met a friend online who has the same symptoms and her ear pain is from her migraines and she has MAV.  The paranoid side of me is still worried that I am going bilateral.  The fullness today is what worries me most about that.  The fullness coinciding with an increase in dizziness realllly makes me paranoid.  However, I should not worry about things I cannot control.  Easier said than done.  My ENT won't do another hearing test until I have healed more from my surgery.  I am a little anxious to get that done because it may give me some clue what my right ear may be doing.  I need to get in touch with his office next week and set up our next appointment.  Once again, I wait and see...

To better days ahead!!!

Whew...holiday marathon over...let the dizzies begin :-(

Knew it was coming but didn't expect it to hit quite this hard.  My ENT always says the holidays are the worst on people with Meniere's.  I don't know if tired would even describe it.  We have had something going on for days now.  I just now finished my last family gathering for Christmas.  Now don't get me wrong, I am soooo grateful to spend the holidays with such wonderful people and to be surrounded by such love but it has taken it's toll.  Yesterday, after the kids got up at 7:15 full of wonder and awe that Santa came, we played and had a great time for hours.  Then I felt myself crashing and went to take a nap and slept for 2 hours.  Then I ended up with a migraine, not a bad one, but still a migraine.  I was really hoping that quitting the birth control pills would've helped that by now.  I guess it could be they need more time to get out of my system.  Slept for about 11 hours last night.  Woke up still exhausted but drug myself out for our last family get together.  It was loud, noisy, but good to see everyone.  Now, I'm home and my kids are riding their new scooters back and forth in the house (I know...I'm insane, but it's been raining and they can't go outside) and the noise and motion may send me over the edge.  I'm reaching the point where I have to decide how much do I let my disease affect them.  Do I make them quit because I'm miserable?  Doesn't seem exactly fair.  It's another one of the subtle nuances of this damned disease that people don't get.  My children shouldn't have to suffer because of it.  I already have to tell them enough to "keep it down" or "that hurts mommy's ears."  Most likely what will end up happening is I'll end up back in my bedroom away from all the noise and chatter because my ears feel like they just cannot process anymore information.  How can I go back to work if I can only get through 3 days of activity at a time before I collapse and need days to recuperate?  The bright side is at least I'm getting through 3 days.  Hopefully, my strength is slowly building back up.

I really am becoming more and more suspicious that I have Migraine Associated Vertigo.  I'm starting to think that the Shunt Revision surgery did help the Meniere's.  I'm not nearly as off-balance as I was and the spins are better.  It's the constant motion sickness, dizziness, nausea, and headaches that are really aggravating me right now.  I'm just not sure what to do about it at this point.  My first step was to quit the b.c. pills.  I guess I'll go through with the hysterectomy.  I also think I'm going to pursue some more chiropractic treatment.  My headaches start in my upper neck at the base of my skull and then sometimes move to above one of my eyes and most of the time it continues on to include pain all through my neck and upper back.  I can feel it getting worse now.  When I've seen the chiropractor before for this, it does help.  The headaches/neck ache/muscle pain disappears with one or two treatments.  Problem is they keep returning.  I can't afford to keep going back as much as I need to.  I need to find the trigger for all this, get back on my feet (literally) and get back to life. 

Shunt update

I haven't updated in a while about my surgery and in a way that's a good thing because it means I've been able to get out and do more.  I've actually been having some good days now and then whereas before I was mostly bedridden or holding on to things to get around.  I've been pretty dizzy the past couple days but I think it's from overdoing it...again.  But how can you resist a good romp in the snow with your kids?  especially when it's their first real snow!!  Today I finished some shopping and had lunch with my kids and did a little house cleaning.  Now I have that heavy headed feeling and my eyes are tired. 

I went back to the doctor on December 15th and he is still not releasing me to go back to work.  It looks like it'll be February now before I get the green light.  As much as I hate to admit it, he was right all along.  I needed to stay home and give myself time to heal and time to let this latest spell settle some.  My bank account is going to suffer majorly though.  I HAVE to get back to work as soon as possible. 

Oddly enough, it seems as if my constant struggle over the last year and a half to find a birth control pill that works for me may have contributed to my current state.  Most of the pills have caused migraines.  The one that didn't cause headaches caused severe cramps that were on the same level of intensity as migraines.  One day at work they hit so bad, I got nauseous and had to leave.  I was in tears driving home.  So yesterday I met with my Gynecologist and it looks as if I'll be getting a hysterectomy and hopefully ending this roller coaster ride of hormones as well as ending the other issues that come with it.  I'm not excited about yet another surgery but who knows, may be that this what will help me all the way around. 

I'm particulary curious to see if it works because I think I've developed a condition called Migraine Associated Vertigo which is very similar to Meniere's.  MAV also includes constant dizziness, imbalance and extreme sensitvity to motion sickness.  All of which I have.  This condition usually has a trigger or triggers just like some people with regular migraines.  I think my trigger may be birth control pills.  If I don't take them anymore, maybe I'll get a little relief??  Who knows.  This darned disease is such a mystery that I have no idea anymore and in reality, I'm grasping at straws. 

But as far as the hysterectomy goes, this is the perfect time for me to do it.  I'm already off work.  I'm not having more children and I can't handle the cramping anymore.  So even if it doesn't help the Meniere's, I'll have one other monkey off my back.  I'm currently off all birth control so that may give me some idea between now and surgery if they're affecting me.  Surgery may be as early as January 5th. 

The next few days are going to be hectic with lots of Christmas activities.  By saturday night, I'll be worthless.  Then for the week after that, I have the kids by myself.  That ought to be a good indication of how ready I am to go back.  I've had them for the past 3 days because of the snow and that has affected me too.  Can't nap a lot with a 4-year old and 6-year old around.  They are great kids though and do let me rest some.  They've got a lot more patience than I do. 

Happy Holidays to all!