Doesn't get much better than a beautiful spring day with your kids...
Thursday, April 29, 2010
Tuesday, April 27, 2010
Meniere's and Antivirals-Week One
It's been a week now. I've been taking Acyclovir 800mg 3x/day. So far I can't tell any major difference. About day 3 into it, I had a great day where I felt "normal" and was able to get out and play with the kids. It was awesome but I'm not so sure I can chalk that up to the new medication. Even before the medication, I would occasionally have a "good" day like that. I do feel a little more stable getting around the house. I'm not holding to things as much but again, still hard to say if that's just the natural course of this or the medicine. Yesterday, I had a very busy afternoon with having to take the kids to the doctor and dentist. I got pretty dizzy during all of that and had to take 1mg of Valium. I haven't noticed any change in hearing or my tinnitus. My tinnitus has been extremely loud since about a week before I started this medication. I'm dizzy and tired this morning. I have read that some people get worse before they get better. I've also read that the longer you have this disease, the longer it takes to notice any changes with the Acyclovir. I've had this for over 12 years so it may take me awhile.
Side effects noted so far have been drowsiness and I'm sleeping a lot more. I can easily sleep 10-11 hours a night. The Acyclovir also seems to be causing some minor gastrointestinal problems but nothing serious and no nausea.
So that's week one. I have a busy afternoon today as well. We'll see how it goes and I plan to report back again in another week to see if anything has changed. Of course, if I notice anything significant before then, I'll be back to write about it when it happens.
Side effects noted so far have been drowsiness and I'm sleeping a lot more. I can easily sleep 10-11 hours a night. The Acyclovir also seems to be causing some minor gastrointestinal problems but nothing serious and no nausea.
So that's week one. I have a busy afternoon today as well. We'll see how it goes and I plan to report back again in another week to see if anything has changed. Of course, if I notice anything significant before then, I'll be back to write about it when it happens.
Tuesday, April 20, 2010
Great Dr's Visit-Starting Antivirals!
Wow, what a long but great day! My hearing test and ECoG results indicate that I am not bilateral! Yay!! My right ear (good one) is doing great. My doctor thinks the pressure I'm feeling in it is related to my TMJ so I'm going to wear my little mouth guard for awhile and see if it helps. The hearing in my left ear was worse but I'm okay with that because the results for my right ear were so good. The audiologist described it as severe mixed loss. 80dB loss in the lower frequencies. Speech discrimination at 85dB was 68%.
After getting these results, my doctor was very happy for me and said he was willing to give me one gentamicin injection. He's pretty anti-anything destructive because he's seen too many people have destructive procedures done, then go bilateral and end up in wheelchairs. He said that since my right ear is so good that he was willing to give me a one-time, low-dose gent injection. I was thrilled he was willing to do that. I've been so miserable lately, I was prepared to beg. But before we do that...
He agreed to prescribe antivirals for me!!! I couldn't believe it. I had asked him once a couple years ago and he politely and reasonably said no. Now that there are generics available and the risk of side effects are so low, he said "sure, let's try it" Whoa! I was shocked. He said he honestly didn't think it would work, but at this point, I had nothing left to lose. I was prescribed Acyclovir. 800mg 3x/day for 2-3 weeks, then down to a maintenance dose of 400mg for a couple weeks. If this doesn't work, then I have my gent injection scheduled for May 25th. I'm so thrilled to be moving forward and trying something to stop this off-balance, dizziness, and nausea.
I think it helped that when I asked him about antivirals that I told him up front that I knew chances were they wouldn't work but that I wanted to exhaust my possibilities before I did anything destructive. He kind of laughed and said, "if this works, I'll pop open a bottle of champagne for you!" and then went on to say he would prescribe them for his next patient. Yikes, I really hope they do some good for me. I really don't want to ruin anyone else's chances of trying them. So many people have benefitted from antivirals. I plan to post on my progression over the next few weeks. An honest telling of any side effects, new symptoms, improvement of symptoms, etc.
Here's a link to a great compilation of resources that may be of interest or help to anyone who wants to give antivirals a try...
http://www.menieres.org/forum/index.php/topic,23217.0.html
I had e-mailed this to my doctor yesterday but he didn't have a chance to read it. From a scientist's point of view, many of the studies are flawed. However, there's still good information in them. It's the personal success studies that intrigued me the most.
After getting these results, my doctor was very happy for me and said he was willing to give me one gentamicin injection. He's pretty anti-anything destructive because he's seen too many people have destructive procedures done, then go bilateral and end up in wheelchairs. He said that since my right ear is so good that he was willing to give me a one-time, low-dose gent injection. I was thrilled he was willing to do that. I've been so miserable lately, I was prepared to beg. But before we do that...
He agreed to prescribe antivirals for me!!! I couldn't believe it. I had asked him once a couple years ago and he politely and reasonably said no. Now that there are generics available and the risk of side effects are so low, he said "sure, let's try it" Whoa! I was shocked. He said he honestly didn't think it would work, but at this point, I had nothing left to lose. I was prescribed Acyclovir. 800mg 3x/day for 2-3 weeks, then down to a maintenance dose of 400mg for a couple weeks. If this doesn't work, then I have my gent injection scheduled for May 25th. I'm so thrilled to be moving forward and trying something to stop this off-balance, dizziness, and nausea.
I think it helped that when I asked him about antivirals that I told him up front that I knew chances were they wouldn't work but that I wanted to exhaust my possibilities before I did anything destructive. He kind of laughed and said, "if this works, I'll pop open a bottle of champagne for you!" and then went on to say he would prescribe them for his next patient. Yikes, I really hope they do some good for me. I really don't want to ruin anyone else's chances of trying them. So many people have benefitted from antivirals. I plan to post on my progression over the next few weeks. An honest telling of any side effects, new symptoms, improvement of symptoms, etc.
Here's a link to a great compilation of resources that may be of interest or help to anyone who wants to give antivirals a try...
http://www.menieres.org/forum/index.php/topic,23217.0.html
I had e-mailed this to my doctor yesterday but he didn't have a chance to read it. From a scientist's point of view, many of the studies are flawed. However, there's still good information in them. It's the personal success studies that intrigued me the most.
Monday, April 19, 2010
Big Day Tomorrow-ECoG and Hearing Test
Tomorrow I am scheduled for a hearing test and a ECoG test. I've had numerous hearing tests but the ECoG is a new one for me. From what I understand, they put electrodes in your ear and can determine, with some degree of error, whether or not you have Meniere's in that ear. I am only having it done in my "good" ear. I have been counting down the days until this test because I am so desperate for answers. Now that I'm facing it tomorrow, I'm a mess. I'm nervous. Prone to fits of crying. The stress around me is not helping things either.
I have myself convinced of the worst news. My instability has been so bad and I have this strange but intense pressure and pain deep inside my "good" ear that I've just assumed I've fallen into that oh so lucky 15% that go bilateral. (15% is my doctor's estimate, some are as high as 50%.) The hearing test will likely be the ultimate give away in determining the status of my ear. My right ear, which is my good ear, has held steady with great hearing throughout the 12 years of having this. If there's any decline in the lower frequencies, then that's a pretty sure bet, that ear is going too.
I spent this past weekend at 2 separate kid's birthday parties. On Saturday, I barely made it to the party as I was so off-balance. Once I got there, I just sat in the same chair pretty much the whole time and took some Valium to help. On Sunday, at the other party, I had to move around more and had to take my afternoon Klonopin dose early and take more Valium than usual to get through. It was at this party that I noticed my hearing was off. There was a lot of background noise as you can imagine. Lots of adults talking, kids playing and I had a hard time understanding people when they tried to talk to me. Come to think of it, I noticed this Saturday as well but the problem there was the loud background music that was being played.
What do you do when you find out you are bilateral? How do you progress with treatment from there? Also, if my wishes come true and I'm not bilateral, what's next for me? How do I get relief from these latest symptoms? I am tired of waiting this out. I'm ready to move on to another treatment. The good thing about my doctor is that he's looking at the long-term and is able to "talk me down" from doing anything drastic, like major surgery, because he's looking at potential problems in the future. Meanwhile, I'm so impatient, I'm willing to do just about anything to get some relief and get back to where I was before.
I have myself convinced of the worst news. My instability has been so bad and I have this strange but intense pressure and pain deep inside my "good" ear that I've just assumed I've fallen into that oh so lucky 15% that go bilateral. (15% is my doctor's estimate, some are as high as 50%.) The hearing test will likely be the ultimate give away in determining the status of my ear. My right ear, which is my good ear, has held steady with great hearing throughout the 12 years of having this. If there's any decline in the lower frequencies, then that's a pretty sure bet, that ear is going too.
I spent this past weekend at 2 separate kid's birthday parties. On Saturday, I barely made it to the party as I was so off-balance. Once I got there, I just sat in the same chair pretty much the whole time and took some Valium to help. On Sunday, at the other party, I had to move around more and had to take my afternoon Klonopin dose early and take more Valium than usual to get through. It was at this party that I noticed my hearing was off. There was a lot of background noise as you can imagine. Lots of adults talking, kids playing and I had a hard time understanding people when they tried to talk to me. Come to think of it, I noticed this Saturday as well but the problem there was the loud background music that was being played.
What do you do when you find out you are bilateral? How do you progress with treatment from there? Also, if my wishes come true and I'm not bilateral, what's next for me? How do I get relief from these latest symptoms? I am tired of waiting this out. I'm ready to move on to another treatment. The good thing about my doctor is that he's looking at the long-term and is able to "talk me down" from doing anything drastic, like major surgery, because he's looking at potential problems in the future. Meanwhile, I'm so impatient, I'm willing to do just about anything to get some relief and get back to where I was before.
Tuesday, April 13, 2010
Another good Meniere's website
This one was pointed out to me by Dr. Burcon. Good site, good info.
www.menieresresearch.com
Consider all the possibilities out there when fighting this disease. You never know which one will work for you.
www.menieresresearch.com
Consider all the possibilities out there when fighting this disease. You never know which one will work for you.
Edison quote
"If we all did the things we are capable of, we would astound ourselves."
- Thomas Edison
Saturday, April 10, 2010
Meniere's and Related Research
I find this study very compelling. Really want to discuss this with my doctor. The idea of being able to regrow and regenerate the cells necessary for hearing and possibly balance is amazing and from I understand not far from becoming reality. This is one link to a study being done in the U.S.
http://depts.washington.edu/hearing/HRI.php
I know similar research is being done elsewhere. It's exciting and gives me a glimmer of hope that maybe I won't be like this forever.
There's also a current study being done on a better delivery method of dexamethasone to the inner ear. Instead of liquid form, it's in a gel form and therefore stays in the ear and acts over a longer period of time. This trial is taking place across the U.S. and I'm also interested to see what comes of it.
http://clinicaltrials.gov/ct2/show/NCT01084525?term=vertigo&rank=14
I feel somewhat comforted that somebody out there is paying attention to this dreaded disease. Granted, the motivation may be money and these things aren't necessarily a cure, but any information that can be gained is useful. Whether the experiment works or not, you're moving forward. That's the nature of science. I also just learned of a lab in Australia that is going to be solely devoted to the study of Meniere's Disease and what causes it. Go Australia! Here's a link for that...
http://www.medfac.usyd.edu.au/people/academics/profiles/danielbrown.php
I found all these links through the people at menieres.org. It's really an amazing support group and resource for people with Meniere's. Some people on the site are for some reason disgruntled about some of these studies. They feel corporate greed is the driving force. They feel that more attention should be paid to find the cause of this disease. I agree somewhat but I also accept the reality of how the process works. If someone can find a drug that can even relieve part of our suffering, I'm all for it. At this point, if someone said, "here's a pill. You won't be cured but your dizziness will ease up and you can be almost normal again." I'd be all over it. I'd say thank you and now please get back to work. I'm so tired of living like this. These attempts to learn anything at all about Meniere's give me hope. That's huge and shouldn't be discounted.
http://depts.washington.edu/hearing/HRI.php
I know similar research is being done elsewhere. It's exciting and gives me a glimmer of hope that maybe I won't be like this forever.
There's also a current study being done on a better delivery method of dexamethasone to the inner ear. Instead of liquid form, it's in a gel form and therefore stays in the ear and acts over a longer period of time. This trial is taking place across the U.S. and I'm also interested to see what comes of it.
http://clinicaltrials.gov/ct2/show/NCT01084525?term=vertigo&rank=14
I feel somewhat comforted that somebody out there is paying attention to this dreaded disease. Granted, the motivation may be money and these things aren't necessarily a cure, but any information that can be gained is useful. Whether the experiment works or not, you're moving forward. That's the nature of science. I also just learned of a lab in Australia that is going to be solely devoted to the study of Meniere's Disease and what causes it. Go Australia! Here's a link for that...
http://www.medfac.usyd.edu.au/people/academics/profiles/danielbrown.php
I found all these links through the people at menieres.org. It's really an amazing support group and resource for people with Meniere's. Some people on the site are for some reason disgruntled about some of these studies. They feel corporate greed is the driving force. They feel that more attention should be paid to find the cause of this disease. I agree somewhat but I also accept the reality of how the process works. If someone can find a drug that can even relieve part of our suffering, I'm all for it. At this point, if someone said, "here's a pill. You won't be cured but your dizziness will ease up and you can be almost normal again." I'd be all over it. I'd say thank you and now please get back to work. I'm so tired of living like this. These attempts to learn anything at all about Meniere's give me hope. That's huge and shouldn't be discounted.
Tuesday, April 6, 2010
Meniere's Poem-From a Spouse's View
I read this on www.menieres.org and found it very moving. Unfortunately, I do not know the name of the person who wrote it. He only gives his forum name which is WifesOnFloor. He titled his thread simply: Angelea
Why are you on the floor vomiting? Is this a hangover?
What is the cause of this?
You have what? I think your ears are beautiful; you don’t have man-ears…
Oh, Meniere’s, what is that? A disease? No? A syndrome? A collection of God-awful symptoms? Why are you like this?
I see…nobody knows.
Ok, so it’s a fluid build-up...or wait, it’s a virus is it? OK, no, it’s a kink in your neck? No? Yes?
I see, nobody knows.
The kids want to know why you are on the floor again. I told them about your man-ears. I’m kidding, I love your ears. I married you for your ears. I married you for your eyes. I married you for all of you, till death do us part.
I will hold the bucket with one hand and the back of your head with the other as you retch through the night. I will wait with you until the room stops spinning long enough to half-carry you to the restroom so you can finally relieve yourself. I will bring you anything you need in your state of paralysis, till death do us part.
Low-salt? Check. Diuretics? Check. Lysine? Check. Acyclovir? Check. NUCCA? Check. Dexamethasone? Check. Gentamicin? Check.
Why are you on the floor? Why are you vomiting?
I married you for your ears, till death do us part.
This brought tears to my eyes because I imagine my husband has similar thoughts. He never really says anything but he was there for me through many of my bad vertigo attacks in the beginning. Back before we were even married and he could've very easily walked away.
To the author of this-sorry that I can't give you your proper credit. If you ever stumble upon this blog and would be willing to give me your name, I would love to credit you for this beautiful work. And thank you for being there for her. It isn't easy for our better halves either and it's important for us to remember that.
Why are you on the floor vomiting? Is this a hangover?
What is the cause of this?
You have what? I think your ears are beautiful; you don’t have man-ears…
Oh, Meniere’s, what is that? A disease? No? A syndrome? A collection of God-awful symptoms? Why are you like this?
I see…nobody knows.
Ok, so it’s a fluid build-up...or wait, it’s a virus is it? OK, no, it’s a kink in your neck? No? Yes?
I see, nobody knows.
The kids want to know why you are on the floor again. I told them about your man-ears. I’m kidding, I love your ears. I married you for your ears. I married you for your eyes. I married you for all of you, till death do us part.
I will hold the bucket with one hand and the back of your head with the other as you retch through the night. I will wait with you until the room stops spinning long enough to half-carry you to the restroom so you can finally relieve yourself. I will bring you anything you need in your state of paralysis, till death do us part.
Low-salt? Check. Diuretics? Check. Lysine? Check. Acyclovir? Check. NUCCA? Check. Dexamethasone? Check. Gentamicin? Check.
Why are you on the floor? Why are you vomiting?
I married you for your ears, till death do us part.
This brought tears to my eyes because I imagine my husband has similar thoughts. He never really says anything but he was there for me through many of my bad vertigo attacks in the beginning. Back before we were even married and he could've very easily walked away.
To the author of this-sorry that I can't give you your proper credit. If you ever stumble upon this blog and would be willing to give me your name, I would love to credit you for this beautiful work. And thank you for being there for her. It isn't easy for our better halves either and it's important for us to remember that.
Monday, April 5, 2010
Meniere's vs. the Zoo!
I did it. I made it through! Whew...now I'm beat and would've slept all day if the kids weren't off from school. It was all worth it though. We went to the zoo yesterday and had a great time. I tell ya, Easter Sunday is the time to go. If you get there near opening time, you have the place almost to yourself for the first couple of hours. The extra trick for this zoo is to take the tram to the middle and do the far loop first. So off we went to Africa. Saw an elephant drinking water. Two enormous rhinoceroses (rhinoocerosi?). Moved on through the various baboons, gorillas, etc. Got to feed giraffes-very cool. And so on. I took lots of breaks and had to take a total of 4mg of Valium between about 9:30 and 1:00 before I finally seemed to feel steady. Also, had to take my second dose of Klonopin a little earlier than usual but it all worked out. The kids had fun. The weather was perfect. They are already looking forward to next year's Easter visit when they will have their lemurs exhibit ready.
Final score: Zoo=1, Meniere's=0. In other words, that's another win for me and I'll gladly take it.
Final score: Zoo=1, Meniere's=0. In other words, that's another win for me and I'll gladly take it.
Friday, April 2, 2010
In a Meniere's slump
I don't think I've been this down, literally and metaphorically, with Meniere's since it first hit. While I am not having the violent vertigo attacks, I am facing a new enemy that I just don't know how to handle. The floor continues to move. My head swims suddenly. I have spent the majority of this week as a captive in my own home. The only thing I've managed to do each day is go pick up my kids. Well, that's not entirely true. On the way home, we stopped by the park a couple times. They always want to play outside as soon as they get home. The park is easier for me because I can sit and just let them run wild and not worry about them too much. Plus the park is really close to where my brother works and my parents live. Should an emergency arise, they could be there in minutes. My problem with bringing them straight home and letting them play outside is that all the kids in the neighborhood descend upon us as soon as we hit the driveway. I then end up babysitting everybody's kids. And almost without fail, one of my kids either gets hurt or has one of their toys broken by one of the other kids. Also, I just can't take all that noise and running around me. At the park, I can distance myself somewhat and this time of year it isn't too crowded yet.
I find myself crying a lot, especially at night because I can't stand this feeling. I went to the library the other day and had to hold on to the shelves the whole time to keep my balance. I had to take a Valium and hurry out of there. It also worries me because I can tell by my husband's reaction that this is something he's never seen in me before either and he's been with me since before this all started.
I've called my doctor's office and by way of messenger was told that this is unfortunately part of the disease. He said to go ahead and take the Valium as I needed it for these "flare-ups." I guess what I may need to impress upon them soon is that this is happening everyday. If things are no better by the middle of next week, I may call again. Not sure it would do me any good as I have an appointment on the 20th for a hearing test and a ECoG in my good ear. I don't think he can do much for me until he has the results of those tests. Right now, the way I feel, if he said come tomorrow and we'll do the gentamicin injections, I wouldn't hesitate.
We're supposed to go to the zoo on Sunday with the kids. We went last year and it was so much fun that we decided to do it again this Easter. I don't have the slightest idea how I will make it through though. It is several miles of walking. All kinds of visual stimulus. It's also supposed to be about 80 degrees that day. My plan for now is to pretty much time Valium on a rather constant basis. It really does help. I know I'm not supposed to and only save it for times when things are bad but I really don't want to mess up this trip. The kids are so excited and I love the zoo myself.
Hopefully, I'll be back with a post in a few days with good news about our little excursion!!
I find myself crying a lot, especially at night because I can't stand this feeling. I went to the library the other day and had to hold on to the shelves the whole time to keep my balance. I had to take a Valium and hurry out of there. It also worries me because I can tell by my husband's reaction that this is something he's never seen in me before either and he's been with me since before this all started.
I've called my doctor's office and by way of messenger was told that this is unfortunately part of the disease. He said to go ahead and take the Valium as I needed it for these "flare-ups." I guess what I may need to impress upon them soon is that this is happening everyday. If things are no better by the middle of next week, I may call again. Not sure it would do me any good as I have an appointment on the 20th for a hearing test and a ECoG in my good ear. I don't think he can do much for me until he has the results of those tests. Right now, the way I feel, if he said come tomorrow and we'll do the gentamicin injections, I wouldn't hesitate.
We're supposed to go to the zoo on Sunday with the kids. We went last year and it was so much fun that we decided to do it again this Easter. I don't have the slightest idea how I will make it through though. It is several miles of walking. All kinds of visual stimulus. It's also supposed to be about 80 degrees that day. My plan for now is to pretty much time Valium on a rather constant basis. It really does help. I know I'm not supposed to and only save it for times when things are bad but I really don't want to mess up this trip. The kids are so excited and I love the zoo myself.
Hopefully, I'll be back with a post in a few days with good news about our little excursion!!
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