If you're going through hell, keep going.
Tuesday, June 21, 2011
Monday, June 20, 2011
Saturday, June 18, 2011
Gotta Love Steven Wright
There's a fine line between fishing and just standing on the shore like an idiot.
Back on Diuretics and Continuing Antivirals
I stopped taking diuretics about a month ago. I had been on hydrochlorothiazide 25 mg once or twice a day for the past two years. At my last appointment about six weeks ago with Dr. Harris, he suggested I discontinue the HCTZ and try 20 mg of Lasix twice a day instead to see if any of my symptoms improved.
I tried the Lasix for about three or four days, then I decided to just go off of the diuretics altogether for awhile and see what happens. It didn't help that the Lasix distinctly tastes like burned rubber. Yuck!
It's been a month and, honestly, the only difference I have really noticed is that I gained at least five pounds in the first few days and I feel all puffy. I have continued to try to eat a low sodium diet as always which is probably in the ballpark of 2,000 mg per day, plus I have increased my water intake significantly to about 1-1/2 to 2 liters a day.
In the past few days, though, my right ear has been feeling a little sloshy and my left -good- ear has been feeling a little full, too. This all happened on the diuretics in the past, too, so I can't say it is something new. But it is disconcerting. So I decided to hop back on the diuretic bandwagon. I will give the Lasix a fair trial.
In the meantime, I continue on the Famvir 250 mg twice a day. I am on Day #5. Nothing new to report yet. I have been feeling well overall this week with the exception of a couple of days of worse than usual balance and some mini-spins similar to those I had shortly after the last round of gent. Since I had a pretty good attack last weekend and ended up with mild vertigo, how I am feeling this week is pretty typical of how I feel post-attack.
I go back up to House Ear Clinic on July 5th to see Dr. Wilkinson, the doctor I saw for my second opinion back in December and who kindly prescribed the antiviral therapy for me this week. His colleague, Dr. Lorenz, returned my call to Dr. W on Tuesday and, in the course of discussing my history, he strongly encouraged me to go through with ENG (vestibular) testing. Sigh. I have to admit he gave very valid reasons for having the testing done, so I suppose I will agree to it. I go back up to House on July 5th for a follow-up, so maybe I will call before then and see if they want to do the testing then.
So I continue on guinea pig status...
I tried the Lasix for about three or four days, then I decided to just go off of the diuretics altogether for awhile and see what happens. It didn't help that the Lasix distinctly tastes like burned rubber. Yuck!
It's been a month and, honestly, the only difference I have really noticed is that I gained at least five pounds in the first few days and I feel all puffy. I have continued to try to eat a low sodium diet as always which is probably in the ballpark of 2,000 mg per day, plus I have increased my water intake significantly to about 1-1/2 to 2 liters a day.
In the past few days, though, my right ear has been feeling a little sloshy and my left -good- ear has been feeling a little full, too. This all happened on the diuretics in the past, too, so I can't say it is something new. But it is disconcerting. So I decided to hop back on the diuretic bandwagon. I will give the Lasix a fair trial.
In the meantime, I continue on the Famvir 250 mg twice a day. I am on Day #5. Nothing new to report yet. I have been feeling well overall this week with the exception of a couple of days of worse than usual balance and some mini-spins similar to those I had shortly after the last round of gent. Since I had a pretty good attack last weekend and ended up with mild vertigo, how I am feeling this week is pretty typical of how I feel post-attack.
I go back up to House Ear Clinic on July 5th to see Dr. Wilkinson, the doctor I saw for my second opinion back in December and who kindly prescribed the antiviral therapy for me this week. His colleague, Dr. Lorenz, returned my call to Dr. W on Tuesday and, in the course of discussing my history, he strongly encouraged me to go through with ENG (vestibular) testing. Sigh. I have to admit he gave very valid reasons for having the testing done, so I suppose I will agree to it. I go back up to House on July 5th for a follow-up, so maybe I will call before then and see if they want to do the testing then.
So I continue on guinea pig status...
Tuesday, June 14, 2011
Day # 1 (6/14/11)
This may bore some people, but at least one purpose of this blog is selfish so I am going to keep a running diary of this experimentation with famciclovir (Famvir).
I picked up my prescription this afternoon and I am to take 250 mg twice a day for 30 days. I do have 2 refills, but I am supposed to make an appointment to see Dr. Wilkinson in 3-4 weeks.
I took the first pill this evening with dinner.
As a reminder, I am coming down off of four days of an attack building (significant brain fog, buzzing and gurgling in my ear, and exhaustion) that culminated in a mild vertigo attack last night. I started feeling really off-balance about 8pm yesterday, so I took 4 mg of diazepam (Valium) and within 30 minutes felt much better.
Today the buzzing in the ear is gone, though I have my baseline high-pitched ringing - not too loud. A little pressure is still there. And this evening I am feeling the typical imbalance that I experience after vertigo.
I also have a dull headache now, about 2 hours since taking the famciclovir. Nothing major, but I do see now that the label on the pill bottle says, "may cause headache." Coincidence? Probably.
Ready for a good night's sleep now.
I picked up my prescription this afternoon and I am to take 250 mg twice a day for 30 days. I do have 2 refills, but I am supposed to make an appointment to see Dr. Wilkinson in 3-4 weeks.
I took the first pill this evening with dinner.
As a reminder, I am coming down off of four days of an attack building (significant brain fog, buzzing and gurgling in my ear, and exhaustion) that culminated in a mild vertigo attack last night. I started feeling really off-balance about 8pm yesterday, so I took 4 mg of diazepam (Valium) and within 30 minutes felt much better.
Today the buzzing in the ear is gone, though I have my baseline high-pitched ringing - not too loud. A little pressure is still there. And this evening I am feeling the typical imbalance that I experience after vertigo.
I also have a dull headache now, about 2 hours since taking the famciclovir. Nothing major, but I do see now that the label on the pill bottle says, "may cause headache." Coincidence? Probably.
Ready for a good night's sleep now.
Embarking on a New Experiment (Kind of)
After nearly a week of feeling like crap and then having a mild vertigo attack last night, I broke down and called The House Ear Clinic this morning. I went to their Orange County clinic in December for a second opinion as I struggled with whether or not to continue with gent treatments. Ultimately, I did continue with gent and have had good control of my vertigo since the end of January, though I have had a couple of mild episodes since that time - this week's being the worst.
About two years ago, shortly after I was diagnosed and failed to improve on diuretics and a low sodium diet, I brought a couple of studies in to my OTO appointment to see what he thought. That day, he happened to be out of town, so I saw one of his fellows. The fellow was visibly impressed with the conclusions of these studies and willingly prescribed a course of acyclovir for me which was consistent with that in the studies. Within a week of starting the drugs, I noticed a significant change in the pattern of my attacks. During weeks two and three of the therapy, I had no vertigo. This was the first time since my first vertigo attack that I had gone that long without the spins.
According to the study protocol, by the 4th week I began tapering down my dose of acyclovir very gradually. Unfortunately, within 48 hours, the vertigo returned in force. I called my doctor's nurse and the fellow agreed to extend the high-dose therapy for 3 more weeks and lo and behold I experienced the same pattern: no vertigo on the high dose but, within 48 hours of tapering, the vertigo returned.
When I followed up with my regular OTO after my little experiment, he poo-pooed what I had observed. He said he was familiar with the literature, but that it was not conclusive and he believed what I had experienced was simply a placebo effect. I disagreed, but he was not willing to prescribe anymore antivirals for me.
Still being new to MM at the time and having confidence in him based on his bio and the high praise I had heard from several other local ENTs, I proceeded with dex injections and ultimately gentamicin injections, the latter finally offering me semi-permanent relief from the vertigo. During this time, I pursued the second opinion at House and it was during that consultation that this new OTO suggested a trial of Famvir, a newer class of antiviral medication that is supposed to be superior to acyclovir. Because I was mid-gent treatment, I opted to see the gent through first.
Yet, through it all, I still feel like there is something systemic to my MM and I often feel like my body is somehow in overdrive trying to fight something off. Just this week, I went through the usual host of feeling like shit, ear buzzing, terrible brain fog, and complete exhaustion. As usual in the old days, last night it culminated in a vertigo attack, albeit a mild one.
So I got on the horn this morning to House. I spoke with one of the nurses and asked if the doctor I saw six months ago would be willing to prescribe a course of Famvir for me. I explained I want to transfer my care up there and that I would make an appointment whenever he suggested. Within an hour, I got a call back from one of his colleagues, as he was in another clinic today, saying he would gladly call in a 3-month course of the drug for me. He recommended I make an appointment with the other OTO in 3-4 weeks as, by then, I should know if it is helping me or not.
Wow. So nice to be heard and validated. As much as I respect my usual OTO here, I often feel as if I have to do my own research to understand what my options are and then advocate for them.
I am excited to try the antiviral approach again. At least if I don't notice any improvement, I can be sure I gave it the best college try possible. Will keep you all posted!
About two years ago, shortly after I was diagnosed and failed to improve on diuretics and a low sodium diet, I brought a couple of studies in to my OTO appointment to see what he thought. That day, he happened to be out of town, so I saw one of his fellows. The fellow was visibly impressed with the conclusions of these studies and willingly prescribed a course of acyclovir for me which was consistent with that in the studies. Within a week of starting the drugs, I noticed a significant change in the pattern of my attacks. During weeks two and three of the therapy, I had no vertigo. This was the first time since my first vertigo attack that I had gone that long without the spins.
According to the study protocol, by the 4th week I began tapering down my dose of acyclovir very gradually. Unfortunately, within 48 hours, the vertigo returned in force. I called my doctor's nurse and the fellow agreed to extend the high-dose therapy for 3 more weeks and lo and behold I experienced the same pattern: no vertigo on the high dose but, within 48 hours of tapering, the vertigo returned.
When I followed up with my regular OTO after my little experiment, he poo-pooed what I had observed. He said he was familiar with the literature, but that it was not conclusive and he believed what I had experienced was simply a placebo effect. I disagreed, but he was not willing to prescribe anymore antivirals for me.
Still being new to MM at the time and having confidence in him based on his bio and the high praise I had heard from several other local ENTs, I proceeded with dex injections and ultimately gentamicin injections, the latter finally offering me semi-permanent relief from the vertigo. During this time, I pursued the second opinion at House and it was during that consultation that this new OTO suggested a trial of Famvir, a newer class of antiviral medication that is supposed to be superior to acyclovir. Because I was mid-gent treatment, I opted to see the gent through first.
Yet, through it all, I still feel like there is something systemic to my MM and I often feel like my body is somehow in overdrive trying to fight something off. Just this week, I went through the usual host of feeling like shit, ear buzzing, terrible brain fog, and complete exhaustion. As usual in the old days, last night it culminated in a vertigo attack, albeit a mild one.
So I got on the horn this morning to House. I spoke with one of the nurses and asked if the doctor I saw six months ago would be willing to prescribe a course of Famvir for me. I explained I want to transfer my care up there and that I would make an appointment whenever he suggested. Within an hour, I got a call back from one of his colleagues, as he was in another clinic today, saying he would gladly call in a 3-month course of the drug for me. He recommended I make an appointment with the other OTO in 3-4 weeks as, by then, I should know if it is helping me or not.
Wow. So nice to be heard and validated. As much as I respect my usual OTO here, I often feel as if I have to do my own research to understand what my options are and then advocate for them.
I am excited to try the antiviral approach again. At least if I don't notice any improvement, I can be sure I gave it the best college try possible. Will keep you all posted!
Thursday, June 9, 2011
Did I Do Too Much or Is It Just Coincidence?
One of the conundrums of Meniere's disease is that symptoms seem to come and go willy-nilly. As we all know, people post all kinds of things on the internet (duh) and people with MM, or who claim to know something about MM, are no different. A cursory on-line search will turn up a long list of potential triggers purported to set off an attack. In my own personal experience, I have not for the life of me been able to identify any single potential trigger that consistently brings on my set of most annoying symptoms.
As I previously posted, today was the last day of school for my kids. As per my usual M.O., I signed up to man one of the annual Olympic Field Day events. I spent little over an hour repeatedly yelling instructions at, and rooting on, group after group of kiddos racing broomstick horses. The next hour and a half, I ran back and forth, following my own kids from one event to the next, yelling and rooting. Then, after returning home briefly for a quick lunch, I realized I was feeling terrible. Exhausted, ear buzzing, and - sigh- more off-balance than usual. This would normally culminate in vertigo, but I am crossing my fingers and toes that the gent is continuing to hold and it will just pass without incident.
I managed to pull myself together, pick the kids up from school and take them out as promised for ice cream and to buy a new video game. I made it. Whew! But sure feel icky now.
So was it all the yelling? I don't know. But it is on my mind and, as usual when I get to feeling terrible, I start mentally running through all the possible "triggers" and how to avoid them. Anything just to stop this cycle. But it is mentally exhausting and I continue to work on acceptance.
As I previously posted, today was the last day of school for my kids. As per my usual M.O., I signed up to man one of the annual Olympic Field Day events. I spent little over an hour repeatedly yelling instructions at, and rooting on, group after group of kiddos racing broomstick horses. The next hour and a half, I ran back and forth, following my own kids from one event to the next, yelling and rooting. Then, after returning home briefly for a quick lunch, I realized I was feeling terrible. Exhausted, ear buzzing, and - sigh- more off-balance than usual. This would normally culminate in vertigo, but I am crossing my fingers and toes that the gent is continuing to hold and it will just pass without incident.
I managed to pull myself together, pick the kids up from school and take them out as promised for ice cream and to buy a new video game. I made it. Whew! But sure feel icky now.
So was it all the yelling? I don't know. But it is on my mind and, as usual when I get to feeling terrible, I start mentally running through all the possible "triggers" and how to avoid them. Anything just to stop this cycle. But it is mentally exhausting and I continue to work on acceptance.
Tuesday, June 7, 2011
Summer's About to Begin
I know the summer solstice is still two weeks away, but the last day of school is only two days away.
Typically, I sort of dread the end of school. Yes, it's great not to have to pack lunches, do homework, and race around after school for practices and lessons. But it also means we have to find ways to keep the kids entertained seven days a week. How does the saying go? "Idle minds are the devil's playground?" Whoever said that had children!
But this year, I am feeling better than I have felt in two years. In the past, the relentless attacks alternating with hyperacusis pretty much made every level of noise excruciating. The echo of constant loud voices filling the house either made me a raving lunatic or forced me to retreat to my bedroom with the doors closed. Not a fun mom.
However, currently my vertigo and most of my Meniere's symptoms are pretty well-controlled. While the kids will be with the babysitter three days a week, I plan to keep them engaged with their friends and out-of-doors the other four. I am looking forward to spending days at the pool, beach, museums, and wherever else the wind blows us. I want the kids to have a fun, safe summer exploring their relationships with each other and their friends. I wish things were still like they were when I was a kid, riding bikes all over the neighborhood and fending for ourselves, but they are not. But I can still foster as much independence as possible and give the kids a chance enjoy these carefree times as much as possible.
Typically, I sort of dread the end of school. Yes, it's great not to have to pack lunches, do homework, and race around after school for practices and lessons. But it also means we have to find ways to keep the kids entertained seven days a week. How does the saying go? "Idle minds are the devil's playground?" Whoever said that had children!
But this year, I am feeling better than I have felt in two years. In the past, the relentless attacks alternating with hyperacusis pretty much made every level of noise excruciating. The echo of constant loud voices filling the house either made me a raving lunatic or forced me to retreat to my bedroom with the doors closed. Not a fun mom.
However, currently my vertigo and most of my Meniere's symptoms are pretty well-controlled. While the kids will be with the babysitter three days a week, I plan to keep them engaged with their friends and out-of-doors the other four. I am looking forward to spending days at the pool, beach, museums, and wherever else the wind blows us. I want the kids to have a fun, safe summer exploring their relationships with each other and their friends. I wish things were still like they were when I was a kid, riding bikes all over the neighborhood and fending for ourselves, but they are not. But I can still foster as much independence as possible and give the kids a chance enjoy these carefree times as much as possible.
Monday, June 6, 2011
The Unveiling: Paint is Done
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| 2009 |
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| Today |
Saturday, June 4, 2011
Another Take on the New MyPlate and Federal Farm Subsidies
Another one of my favorite sources for perspectives on food and nutrition, in addition to Marion Nestle's website, is The Physician's Committee for Responsible Medicine.
This week they have once again brought to the surface the extreme politics behind the U.S. Dietary Guidelines for Americans with this stark image:
You can read more about it here: Breaking News! USDA Replaces Food Pyramid with MyPlate | PCRM.org.
Keep in mind that the vast majority of grains produced in this country end up on our plates in the form of highly processed, nutrient-devoid substances resembling food. The government secretly, or not so secretly, hopes these are the grain products we will purchase and consume when they tell us to "eat more grains." Ironically, the minimally processed grains that are actually good for us have far smaller profit margins and are therefore produced in far smaller quantities resulting in higher cost to consumers. Though that interpretation of cost depends on how the cost is calculated. If one considers the true end cost, including the dollars spent on healthcare to treat diet-related diseases, then the choice is a no-brainer.
Just imagine how the collective health of the country might look if the government was putting our tax dollars toward subsidizing produce growers instead of the meat and dairy industries, as well as the production of the sugar and oil that go into the processed foods this country is consuming by the bushels.
Instead our government prefers to ride the merry-go-round of promoting the production of disease- and obesity-causing foods which then contribute to the billions of dollars that must be funneled into our healthcare system to treat diet-related conditions like diabetes, heart disease, and cancer. What's wrong with this picture? Nothing if you raise cattle, corn, or are a top exec at a health insurance company.
This week they have once again brought to the surface the extreme politics behind the U.S. Dietary Guidelines for Americans with this stark image:
You can read more about it here: Breaking News! USDA Replaces Food Pyramid with MyPlate | PCRM.org.
Keep in mind that the vast majority of grains produced in this country end up on our plates in the form of highly processed, nutrient-devoid substances resembling food. The government secretly, or not so secretly, hopes these are the grain products we will purchase and consume when they tell us to "eat more grains." Ironically, the minimally processed grains that are actually good for us have far smaller profit margins and are therefore produced in far smaller quantities resulting in higher cost to consumers. Though that interpretation of cost depends on how the cost is calculated. If one considers the true end cost, including the dollars spent on healthcare to treat diet-related diseases, then the choice is a no-brainer.
Just imagine how the collective health of the country might look if the government was putting our tax dollars toward subsidizing produce growers instead of the meat and dairy industries, as well as the production of the sugar and oil that go into the processed foods this country is consuming by the bushels.
Instead our government prefers to ride the merry-go-round of promoting the production of disease- and obesity-causing foods which then contribute to the billions of dollars that must be funneled into our healthcare system to treat diet-related conditions like diabetes, heart disease, and cancer. What's wrong with this picture? Nothing if you raise cattle, corn, or are a top exec at a health insurance company.
Thursday, June 2, 2011
USDA's New Food Plate - Beautiful!
Marion Nestle, one of my nutrition heroes, wrote today on her blog, Food Politics, about the unveiling of the USDA's new Food Plate image. Finally, a very simple graphic that anyone can understand. As posted on Nestle's blog, even the "instructions" that go along with it are easy to read and follow.
Previous attempts by the USDA at educating the public about nutrition ended up looking something like spaghetti with convoluted messages that attempted to avoid roiling politics within the food and agriculture industries.
The new Food Plate doesn't entirely avoid industry politics, but it is less in-your-face. It is important to remember the fine line the USDA must walk. Not only is the USDA responsible for establishing dietary guidelines for Americans, they are also charged with promoting the heavily subsidized U.S. agriculture industry. Think corn and all of its dozens, if not hundreds, of by-products, as well as dairy, and meat producers to name a few. These industries are represented by some of the most powerful lobbies in country and have billions of dollars behind them. Makes it quite difficult for the USDA to even suggest that perhaps meat and dairy are not necessary daily components of every American's diet. Many would argue they should not be.
But I digress. I think the new Food Plate is about as good as it gets coming from a government agency as wrought with conflicts of interests as the USDA happens to be and for getting the well-balanced diet message across to Americans of all ages. Good job, USDA!
Previous attempts by the USDA at educating the public about nutrition ended up looking something like spaghetti with convoluted messages that attempted to avoid roiling politics within the food and agriculture industries.
The new Food Plate doesn't entirely avoid industry politics, but it is less in-your-face. It is important to remember the fine line the USDA must walk. Not only is the USDA responsible for establishing dietary guidelines for Americans, they are also charged with promoting the heavily subsidized U.S. agriculture industry. Think corn and all of its dozens, if not hundreds, of by-products, as well as dairy, and meat producers to name a few. These industries are represented by some of the most powerful lobbies in country and have billions of dollars behind them. Makes it quite difficult for the USDA to even suggest that perhaps meat and dairy are not necessary daily components of every American's diet. Many would argue they should not be.
But I digress. I think the new Food Plate is about as good as it gets coming from a government agency as wrought with conflicts of interests as the USDA happens to be and for getting the well-balanced diet message across to Americans of all ages. Good job, USDA!
Wednesday, June 1, 2011
A Little Funky After a Couple of Good Weeks
The past two days my inner ear has been making a lot of bubbling, gurgling, and popping noises typical after a good attack of vertigo. Of course, I didn't have vertigo. Now, I am not getting cocky and I don't want to give the gods any ideas that I need another lesson on the unpredictability of Meniere's even after gent. I get it.
But this afternoon I developed a touch of brain fog and a strong desire to lay my head down and go to sleep. Remember that feeling in afternoon college classes? The feeling when you desperately want to lay your head down on a desk and sleep right through the lecture du jour? Your eyes insist on taking extra long blinks? That feeling. Then, a couple of hours later, the bee in my ear started going to town and that finally culminated in a mild case of bobble-headedness for an hour or so. Seems to have passed... whew. But left me a little deflated as I have had a couple of really good weeks.
There has been a lot of talk about the possible role of vasopressin in Meniere's disease over at Meniere's.Org and it has me wondering if it also happens to play a role in nasal congestion. I wrote about the results of my allergy testing recently and that I seem to "simply" have nonallergic rhinitis. I sure wish I could remember all that physiology I tried not to sleep through in college! Can't help but wonder if that is somehow linked to my Meniere's and, if so, what the hormonal pathways are. I tried Googling it a bit and just kept coming up with papers on toad bladders. Yuck.
Rather than being told, "We don't know" what causes Meniere's or nonallergic rhinitis, for that matter, I wish the doctors would elaborate by adding, "But here are a couple of possible explanations that scientists are looking into." Otherwise when I try to imagine what is going on in there, my mind just wanders over to the same black hole it goes to when contemplating how electricity actually works or where to start and stop a geometry proof.
C'est la vie.
But this afternoon I developed a touch of brain fog and a strong desire to lay my head down and go to sleep. Remember that feeling in afternoon college classes? The feeling when you desperately want to lay your head down on a desk and sleep right through the lecture du jour? Your eyes insist on taking extra long blinks? That feeling. Then, a couple of hours later, the bee in my ear started going to town and that finally culminated in a mild case of bobble-headedness for an hour or so. Seems to have passed... whew. But left me a little deflated as I have had a couple of really good weeks.
There has been a lot of talk about the possible role of vasopressin in Meniere's disease over at Meniere's.Org and it has me wondering if it also happens to play a role in nasal congestion. I wrote about the results of my allergy testing recently and that I seem to "simply" have nonallergic rhinitis. I sure wish I could remember all that physiology I tried not to sleep through in college! Can't help but wonder if that is somehow linked to my Meniere's and, if so, what the hormonal pathways are. I tried Googling it a bit and just kept coming up with papers on toad bladders. Yuck.
Rather than being told, "We don't know" what causes Meniere's or nonallergic rhinitis, for that matter, I wish the doctors would elaborate by adding, "But here are a couple of possible explanations that scientists are looking into." Otherwise when I try to imagine what is going on in there, my mind just wanders over to the same black hole it goes to when contemplating how electricity actually works or where to start and stop a geometry proof.
C'est la vie.
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