I've started a spreadsheet of what I'm eating, drinking, snacking on. It also includes the weather for the day, my stress level, my symptoms that day and a miscellaneous category. Although this diet is to mainly get rid of MSG in my diet, I have also cut out all aspartame which came for me in the form of diet cokes. I have switched to regular sodas which are too sugary for me and will probably soon lead me to drinking more water. Yay!! The aspartame withdrawal is causing me some headache problems already. Starting day one. Some of the reading I've done on it is pretty scary. I don't miss it and I'm not addicted but I am not enjoying the headache aspect of this at all.
When we went to the grocery store this past Sunday, we did try to read through some ingredient lists and avoid the main MSG culprits but MSG comes hidden under so many names! There's no way we got them all but at least we've gotten started. We will continue to fine tune it as we go along. My husband is being supportive.
My stress levels continue to be high and the weather has been either rainy or very windy most days which signifies a change in barometric pressure. I'm feeling it in terms of dizziness. I'm also still pretty weak and have noticed I don't have much stamina when I'm out trying to get things done. My Gyn told me a couple days ago that this was "deconditioning" and I guess the only way to beat it is to try to get out and do more. Hard to do when you're dizzy and it's so cold.
Anyway, that's the early report. Still don't have my appetite back fully from the last surgery and just being nauseous in general. Have lost a few pounds and don't need to lose anymore but I'm just not hungry most of the time. Since this last surgery, there's only been 2 days that I've managed to get 3 full meals in. Most days I skip a meal or only eat half of what's on my plate. That may play a role in all this as well. So many variables...
Wednesday, January 27, 2010
Sunday, January 24, 2010
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!
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!
Friday, January 22, 2010
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.
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.
Thursday, January 21, 2010
Monday, January 18, 2010
Meniere's Disease-an Attempt at an Explanation
I wrote this back in April, 2009 and posted it on my Facebook page so my friends could learn about it. Now I've realized I haven't really explained it anywhere on this blog and thought I should.
Some of you know I have this...others have no idea what I'm talking about. I decided for many reasons to gather some information so maybe I can call some attention to this crappy disorder. It's very rare, less than 1% of the population and it is so misunderstood. It's not just dizziness! It's much much worse than that. True vertigo is something you can't really understand unless you've had it. Imagine spinning round and round in an office chair for 30 seconds or so and then try to get up. Then multiply that feeling by at least 1000. It can last for hours and you can't make it stop and you can't get up from wherever you are, so you usually throw up all over yourself. And for many of us, we're always a little dizzy. Dizzy is my normal state. Sounds fun, right? The only good thing about it is that it's not terminal and I am so grateful that this is the battle I have to fight as it could be much worse.
from Wikipedia...
The symptoms of Ménière's are variable; not all sufferers experience the same symptoms. However, so-called "classic Ménière's" is considered to comprise the following four symptoms:[3]
* Periodic episodes of rotary vertigo or dizziness.
* Fluctuating, progressive, unilateral (in one ear) or bilateral (in both ears) hearing loss.
* Unilateral or bilateral tinnitus.
* A sensation of fullness or pressure in one or both ears.
Attacks of vertigo can be severe, incapacitating, and unpredictable (http://calear.com/ear-diso
Some sufferers experience what are informally known as "drop attacks" — a sudden, severe attack of dizziness or vertigo that causes the sufferer, if not seated, to fall. Patients may also experience the feeling of being pushed or pulled (Pulsion). Some patients may find it impossible to get up for some time, until the attack passes or medication takes effect.
In addition to hearing loss, sounds can seem tinny or distorted, and patients can experience unusual sensitivity to noises (hyperacusis). Some sufferers also experience nystagmus, or uncontrollable rhythmical and jerky eye movements, usually in the horizontal plane, reflecting the essential role of non-visual balance in coordinating eye movements.
Attacks often come in series of a few minutes to a few hours.
Progression
Progression of Ménière's is unpredictable: symptoms may worsen, disappear altogether, or remain the same.[citation needed]
Sufferers whose Ménière's began with one or two of the classic symptoms may develop others with time. Attacks of vertigo can become worse and more frequent over time, resulting in loss of employment, loss of the ability to drive, and inability to travel.[citation needed] Some patients become largely housebound. Hearing loss can become more profound and may become permanent. Some patients become deaf in the affected ear. Tinnitus can also worsen over time. Some patients with unilateral symptoms, as many as fifty percent by some estimates, will develop symptoms in both ears.[citation needed] Some of these will become totally deaf.
Interesting side note: Some famous sufferers include...
Alan Shephard (This is why he was scrubbed from the Apollo 13 mission. However, he returned to space later in his life-a true bada$$), Vincent van Gogh (may be why he cut off his ear), Charles Darwin, Steve Francis (NBA player), Ryan Adams, Kristin Chenoweth, Les Paul, Emily Dickinson, Martin Luther
This is not meant to be a downer. Compared to many people, I do very well with this disease. Some sufferers are often accused of faking this illness, or accused of being rude, or accused of being an alcoholic or drug abuser (because we stumble and fall a lot!). In a lot of ways, that's the worst part about this whole thing. Anyway, hopefully with research, a cure will eventually be found!
from Wikipedia...
The symptoms of Ménière's are variable; not all sufferers experience the same symptoms. However, so-called "classic Ménière's" is considered to comprise the following four symptoms:[3]
* Periodic episodes of rotary vertigo or dizziness.
* Fluctuating, progressive, unilateral (in one ear) or bilateral (in both ears) hearing loss.
* Unilateral or bilateral tinnitus.
* A sensation of fullness or pressure in one or both ears.
Attacks of vertigo can be severe, incapacitating, and unpredictable (http://calear.com/ear-diso
Some sufferers experience what are informally known as "drop attacks" — a sudden, severe attack of dizziness or vertigo that causes the sufferer, if not seated, to fall. Patients may also experience the feeling of being pushed or pulled (Pulsion). Some patients may find it impossible to get up for some time, until the attack passes or medication takes effect.
In addition to hearing loss, sounds can seem tinny or distorted, and patients can experience unusual sensitivity to noises (hyperacusis). Some sufferers also experience nystagmus, or uncontrollable rhythmical and jerky eye movements, usually in the horizontal plane, reflecting the essential role of non-visual balance in coordinating eye movements.
Attacks often come in series of a few minutes to a few hours.
Progression
Progression of Ménière's is unpredictable: symptoms may worsen, disappear altogether, or remain the same.[citation needed]
Sufferers whose Ménière's began with one or two of the classic symptoms may develop others with time. Attacks of vertigo can become worse and more frequent over time, resulting in loss of employment, loss of the ability to drive, and inability to travel.[citation needed] Some patients become largely housebound. Hearing loss can become more profound and may become permanent. Some patients become deaf in the affected ear. Tinnitus can also worsen over time. Some patients with unilateral symptoms, as many as fifty percent by some estimates, will develop symptoms in both ears.[citation needed] Some of these will become totally deaf.
Interesting side note: Some famous sufferers include...
Alan Shephard (This is why he was scrubbed from the Apollo 13 mission. However, he returned to space later in his life-a true bada$$), Vincent van Gogh (may be why he cut off his ear), Charles Darwin, Steve Francis (NBA player), Ryan Adams, Kristin Chenoweth, Les Paul, Emily Dickinson, Martin Luther
This is not meant to be a downer. Compared to many people, I do very well with this disease. Some sufferers are often accused of faking this illness, or accused of being rude, or accused of being an alcoholic or drug abuser (because we stumble and fall a lot!). In a lot of ways, that's the worst part about this whole thing. Anyway, hopefully with research, a cure will eventually be found!
Sunday, January 17, 2010
Really should give a health update...
As far as the hysterectomy goes, I'm slowly but surely getting there. Seemed to have developed a bladder infection over the past couple of days. Guess I'll call the doc in the morning and get it checked out.
So...on Friday, I went for an appointment with my ENT. He was very happy to hear that I got to keep my ovaries and is cautiously optimistic that by removing the birth control pill from the equation that I may finally get some relief. He isn't sending me back to work yet but is open to possibly sending me back in mid-February. It's a little hard to gauge how the Meniere's is doing when you've been in bed for the majority of the past 2 weeks. I do feel more stable when I'm up and I'm not dizzy all the time. Is it from the bed rest? Does it mean I'm getting better? Did the surgery finally work? If so, which one? I don't know the answer. I'll be testing myself out a good bit over the next couple of days. I have to get a bunch of papers graded and go over to the school to do a few things. That'll be a better indication of how I'm progressing. I'm still on the Klonopin, amitriptyline, and using my Meniett. I've taken Valium only a few times. If I'm not better in February, I plan to pursue the MAV route and see what happens.
Getting back to work will be hard and stressful, but I think getting back into the routine will be good for me and for my kids. I think they are starting to get concerned that I've been gone from work for so long. They're young but observant little boogers.
So...on Friday, I went for an appointment with my ENT. He was very happy to hear that I got to keep my ovaries and is cautiously optimistic that by removing the birth control pill from the equation that I may finally get some relief. He isn't sending me back to work yet but is open to possibly sending me back in mid-February. It's a little hard to gauge how the Meniere's is doing when you've been in bed for the majority of the past 2 weeks. I do feel more stable when I'm up and I'm not dizzy all the time. Is it from the bed rest? Does it mean I'm getting better? Did the surgery finally work? If so, which one? I don't know the answer. I'll be testing myself out a good bit over the next couple of days. I have to get a bunch of papers graded and go over to the school to do a few things. That'll be a better indication of how I'm progressing. I'm still on the Klonopin, amitriptyline, and using my Meniett. I've taken Valium only a few times. If I'm not better in February, I plan to pursue the MAV route and see what happens.
Getting back to work will be hard and stressful, but I think getting back into the routine will be good for me and for my kids. I think they are starting to get concerned that I've been gone from work for so long. They're young but observant little boogers.
Lucy
I had to put my almost 15-year old dog, Lucy, to sleep Friday. My heart is broken. I keep looking for her black form lying somewhere near me. She always had to be near. Even as her ears, one eye, and her legs began to fail her, she would still hop up and do her best to find me. Content to just be close. To be near my scent. I miss her terribly even though I've known this day was coming for a while now. Her last couple days were filled with pain and confusion. She lost the ability to walk and yet, all the wanted was to be near. We drove her to the vet Friday afternoon and stayed with her until the end and stayed with her broken body after her soul had left. She licked my hand, I buried my face in her neck while she passed. Hearing the vet say, "she's gone" will ring in my head for a long time to come. Seeing her lifeless body on that table will stay with me forever. Oh please please I hope I did the right thing. Her ashes will be returned to us and I'll continue to keep her near. I tell myself she's free of her suffering now. That she's romping back in the mountains, exploring the woods, barking and herding her friends along...like she loved to do in her youth. Now I feel a different pain and for me, it is relentless. I know from losing pets as a child that it'll get easier as time moves forward. In the meantime, I just go through the motions.
Love you Lucy. Thanks for all your unwavering love and devotion. 'Til we meet again...
Love you Lucy. Thanks for all your unwavering love and devotion. 'Til we meet again...
Sunday, January 10, 2010
When Do I Get to Be Me Again
The past couple of days have been hard. Still in a lot of pain and still very nauseous. I think I slept my way through all of yesterday. As a result, I missed spending time with my kids. I hate that. I'm ready to be me again. Ready to be the boring suburban mother of two who lives in a little house in a little town and has an average job that's just enough to pay the bills.
How much longer will it be until I can be that person again?
How much longer will it be until I can be that person again?
Wednesday, January 6, 2010
Hysterectomy done-will it help my meniere's?
Well, maybe not complete. I did get to keep my ovaries which relieves me for numerous reasons. For one, I'm only 37 and I'm not ready for menopause and Hormone Replacement Therapy. God only knows what that would do my Meniere's. Which leads me to my second reason for doing it, I have to be on birth control due to severe cramping (think migraine level pain in your lower pelvis.) For the past 18 months or so, I've been through countless pills trying to find one that doesn't cause migraines. No luck. I think that part of the reason I've had it so rough lately is due to this constant change in hormones. I stopped taking the pill about 10 days ago and had one headache right after I quit them and haven't had one since. My last reason is that at this point, I have met all my out-of-pocket expenses and this surgery is more or less free. I'm out of work until the end of this month at least, so I figured why not get it over with.
I was still considerably nervous about this surgery. I've never had a body part removed before! I wanted a sign that I was doing the right thing. I am okay with not having more children. As my husband said, we struck gold with the two we have. Financially we can't afford another child either and with my Meniere's being so bad lately, it would be extremely difficult to take care of a newborn. I just can't go through the sleepless nights and breastfeeding again. I was able to keep my ovaries so hopefully now my body will go back to it's normal hormonal pattern. I've been on birth control more or less since I was 18. Obviously didn't take them so I could get pregnant and didn't take them while I breastfed each child which was about a year. I was more concerned about the procedure itself and the risks involved. I asked for a "sign" from whatever higher power is around us and I got it! At 3:30 in the morning before my surgery, I woke up with severe cramping and nausea. I was practically in tears before I was able to get the pain and nausea under control.
The recovery from this surgery was rough. Worse than the ear surgery and way worse than the ovarian cyst removal. I had two shots of demerol, two percocets and still couldn't get my pain down to a 4 on the pain scale. I was also really nauseous. Despite being given Zofran and a Scopolomine patch. I had to have my husband pull over as soon as we got out of the parking lot so I could throw up. Now I'm dealing with bladder spasms and referred pain to my shoulder. (common in pelvic/abdominal surgeries,) I was in recovery for 3 hours and probably should've stayed longer.
I return to my ENT on the 15th. I'm hoping against hope that after having this hysterectomy, it'll settle my dizziness. Probably not, but a girl can hope. Ok, so I'm doped up on painkillers and should stop and go back to sleep...
I was still considerably nervous about this surgery. I've never had a body part removed before! I wanted a sign that I was doing the right thing. I am okay with not having more children. As my husband said, we struck gold with the two we have. Financially we can't afford another child either and with my Meniere's being so bad lately, it would be extremely difficult to take care of a newborn. I just can't go through the sleepless nights and breastfeeding again. I was able to keep my ovaries so hopefully now my body will go back to it's normal hormonal pattern. I've been on birth control more or less since I was 18. Obviously didn't take them so I could get pregnant and didn't take them while I breastfed each child which was about a year. I was more concerned about the procedure itself and the risks involved. I asked for a "sign" from whatever higher power is around us and I got it! At 3:30 in the morning before my surgery, I woke up with severe cramping and nausea. I was practically in tears before I was able to get the pain and nausea under control.
The recovery from this surgery was rough. Worse than the ear surgery and way worse than the ovarian cyst removal. I had two shots of demerol, two percocets and still couldn't get my pain down to a 4 on the pain scale. I was also really nauseous. Despite being given Zofran and a Scopolomine patch. I had to have my husband pull over as soon as we got out of the parking lot so I could throw up. Now I'm dealing with bladder spasms and referred pain to my shoulder. (common in pelvic/abdominal surgeries,) I was in recovery for 3 hours and probably should've stayed longer.
I return to my ENT on the 15th. I'm hoping against hope that after having this hysterectomy, it'll settle my dizziness. Probably not, but a girl can hope. Ok, so I'm doped up on painkillers and should stop and go back to sleep...
Saturday, January 2, 2010
A kind of resolution...
~Ralph Waldo Emerson"What is success? To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived; that is to have succeeded."
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