I found a site that has some interesting information. http://callierlibrary.wordpress.com It’s links to different medical studies. If you search for Meniere’s Disease, you will find a lot of post about different studies on the subject. That’s where I originally found the study above.
I just wanted to let everyone know that Dr. Gray answered my email.
“Hi Wendy,
I will work with Horace to find a sooner slot..thanks for letting me know!
hang in there
Linda”
(FYI -Horace is her scheduling secretary)
Today, the hearing in both of my ears is way down. It’s so confusing. The roaring is not too bad, and I just have a slight headache. Am still trying to stay horizontal as much as possible. It does seem to help, but being flat on my back all the time is really no fun.
More soon.
Thank you all for your wonderful support.
I really don’t know what I’d do without the support of my friends on here! Your belief in me, and my strength, is a major part that keeps me going.
I keep thinking of posting, I have composed many wonderful posts in my head as I lie in bed waiting for sleep will come….but of course, I can’t remember any of it once I wake up.
I don’t know what’s wrong with the spacing on this post. I’m sorry it doesn’t have breaks for a lot of it. I put them in, but they didn’t show up.
**Fair warning** This post is a lot of stream of consciousness talking. Things that are on my mind. You are welcome to read part of it, or non of it, or all of it….what ever strikes your fancy. Just beware…I may ramble a bit.
My symptoms lately have been very strange. Perplexing, is a good word.
photo courtesy of scienceblogs.com (Migraines)
I’m very lucky, I am NOT having vertigo! But here’s what’s going on:
daily migraines – on a scale from 3 – 9 (one day was a 10 for about 10 – 15 mins, Stuart was ready to take me to the ER…but it subsided)
tinnitus going crazy – at times my tinnitus is so loud I swear a jet engine is taking off in my skull. Usually, it last a couple of hours, slowly returning to my normal hum. But days like yesterday….well, the EXTREMELY LOUD ROARING lasted for about 8 hours! For a few days every night it would start around 10:30 pm and last until about 3 or 4am…then I could finally sleep.
my hearing was better during the loud tinnitus – yeah, WTF? I put in my hearing aids and I could hear all the dings that sound when you first put them on – in BOTH ears. This only lasted a few hours. This is the second time this has happened. I’m glad because it shows me my hearing can improve in that ear, but it’s a bit much when it happens in conjunction with the roaring. It’s also very confusing.
fatigue – are you surprised by this one?
disequilibrium – No I’m not having vertigo, but I get so off-balance some times. I’m also getting that “woosh” feeling when I move my head too fast.
I keep feeling like I’m on the verge of an attack, but it doesn’t come.
Dr. Gray sent me an email that said she wanted to “test my pressure now!” But her scheduling secretary said the soonest I can get in is August 30th. He emailed me this, I emailed back and asked to be put on the cancellation list, telling him I only live a few minutes from Duke so it wouldn’t be a problem to get there in a hurry. He didn’t respond, just set up the August 30th, appointment.
I’m not sure Dr. Gray is aware of how long it’s going to be before I can get in there, I think I’ll drop her a line today. I hate to bother her, I know she’s a very busy lady…but I’m suffering here, and she did say she wanted to get this done “now!”.
Accomplishments: Despite my symptoms, I have been able to do a few things. (Yes, mostly stay flat on my back, because it seems the symptoms are less the more I stay horizontal.)
On Friday, I had a massage. Bliss. I was having a very bad day with the disequilibrium that day, but made it through. My massage therapist is a wonder, and very understanding about my conditions.
On Sunday, I went to the grocery story with Stuart, a whole hour and a half out of the house! I felt like crap, but it was nice to get out!
On Tuesday, I went to a Home Owners Association meeting. That didn’t go very well. I was glad I could go, but had to rush home afterward. The tinnitus got so loud while I was there I couldn’t tell the people were actually talking. (I could see their mouths opening, but could not hear the words. All I could hear was the rumbling.) Still glad I went.
On Wednesday, it was a very LOUD day, as I mentioned before. So most of the day was spent on the couch or in bed. But last night right before I went to bed, I felt better. So I cut up a bunch of tomatoes from our garden, and some shallots, also from our garden, with some garlic and had them in the crock pot (the pot part of it) in the refrigerator ready to turn on today to make spaghetti sauce. I’m using fresh herbs out of my garden, so I’m not adding those until it’s almost finished. (unfortunately, neither Stuart nor I got up at a reasonable time today, so we’ll be having spaghetti tomorrow.) Haven’t tried to have spaghetti since my Dietary Fructose Intolerance diagnosis, hope it goes well, I really miss it.
Today. Again, I’m mainly flat on my back, but I’m also doing laundry. So a bit of getting up and down, but it feels good to do it.
The Artist’s Way workshop…well, that isn’t going so well now. The farther I get into this book, the more I don’t agree with some of the things she suggest. Last week was supposed to be reading deprivation. That’s right. No reading for a whole week. Also no TV, or anything like that. Ummm, no reading? Well, that just isn’t going to happen with me. I love to read, and get a lot of inspiration from it. I just don’t get that one.
This book says you don’t need to be religious to follow the workshop. But it continually talks about God, and how your creativity comes from Him, and by opening yourself up to his gift you will find your inner muse. I don’t want to get into a talk about religion here. But, I’m not that religious. I’m not an atheist, but I’m not someone who believes I should turn everything over to God and it will work out. I think he would expect me to do things for myself. To work hard…. I could probably get in a whole big theological discussion here. But I’m not trying to. I can see where some people will be able to get a lot from this book. But I just don’t think it’s for me. I do enjoy the “morning pages”, and the Artist’s Dates. I will try to keep those up. I haven’t completely dropped the workshop…but I’m not as enthusiastic about it as I was when I started.
photo from weblo.com (I just thought this picture was really cool!)
I wish I knew of a different Creativity Workshop that wasn’t centered around God. I’ve searched and found some possibilities, but I don’t want to dish out the money on books that I don’t know enough about. I did find a couple at the library that I have ordered. We’ll see how that goes.
I guess I will have to change my that goal on my 101 things to do in 1001 days. Perhaps, instead of saying, complete the Artist’s Way Workshop, I will simply say, to complete a creativity workshop?
I think I’ll easily pass my goal of reading 100 books this year. (I made that goal on Jan. 1st). I’ve read about 15 in the past month. Funny, how much you can read when you can’t do much else. I’m proud to say that I haven’t just been reading popular fiction. I’ve been reading art books, self-help books, classics and I’ve even been reading a book about the history of the Free Masons. (that’s a really strange read) I’m slowly reading Uncle Tom’s Cabin, but it is quite a good book! I like to jump around from book to book, what I’m in the mood for at that moment.
Things that are on hold:
Of course having these symptoms have put a lot of things on hold. It makes me sad, but I’m hopeful I will be able to continue these in the near future. Including:
Becoming Foster Parents
Losing Weight
Exercising
Taking an ASL (American Sign Language) class. I planned to take an ASL class through a continuing education course at our local technical college, but it starts August 16th. If I can’t even get in to have my pressure checked before August 30th, I don’t think it’d be a good idea to start trying to take a class. I’m checking some things out at the library…we’ll see what I can learn on my own.
Gardening – The garden has been severely neglected. It’s time to start thinking about a fall crop, but that isn’t happening. Our summer crops didn’t do very well. As I think I’ve said before, we’re learning, and this year we have learned a lot about what NOT to do.
Some art projects I have started, and some I have planned.
Some things I want to do to the house. I’m amazed at how fast our house can get out of order once I’m disabled. This house is just too big for us. Especially when Stuart has to do everything alone. (more on this later.)
Almost everything except staying flat on my back….ugh!
Coming soon: Some of those wonderful posts I’ve been thinking up….Anger – what are you really mad at?…..Finding my Happy Place….
The headaches have gotten worse. The tinnitus is mind-boggling.
image from Google images, not sure where the original is from.
Dr. Gray wants to test my pressure again. If it’s low I’ll be getting another myelogram to look for new leaks. If it’s high, I’ll probably be put on medication for a while, it may just be taking my body a while to get used to the higher pressure after patching the leaks.
I’m so tired. And tired of just lying around. Staying horizontal is helpful, so that’s what I’ve been doing most of the time.
Keeping a journal. I can now go in with dated material saying how I felt each day. This is thanks to the “morning pages” I’ve been writing for the Artist’s Way workshop. I write about much more, but of course, my health is in the forefront of my thoughts right now, so I’m writing a lot about that. Now I’m just going to go through my journal, and make a condensed diary of my symptoms. I should have been doing this all along, but I hate it. I don’t like to think about my symptoms on a daily basis. They seem worse when I actually sit down and think about it.
I’m still trying to get my Day Zero list completed. I’ve completed 3 things, and have 10 in progress. Anyone else out there have a list of goals they are trying to complete? I’m finding this very motivating. I bought a Living Social offer for a local Art Class! And we bought one for Swing Dance Lessons! Yes the dance lessons will have to wait for a little while, but the offer doesn’t expire for 6 months. I’m confident we’ll be able to do it before then! I’ve been looking at the classes that are offered at Happymess (the place the offer is for), I’m hoping to learn how to Batik, or perhaps I’ll do a figure drawing class, or even a still life?? So much to do, so little time….just 978 days left, and 98 more things to complete.
I’m not sure how much The Artist’s Way workshop is helping my creativity. I find that most of the time in my “morning pages”, I write about being chronically ill. Perhaps that is what is causing my creative block, what is standing in my way?
However, I do like the fact that I have to take at least 1 hour each week as an artist’s date. I haven’t been able to do some of the things I wanted to do for these dates, like go to the museum, to on a gallery walk…things like that. I’ve had to improvise, and that’s a good thing. It’s teaching me that I can create, something, even when I’m flat on my back.
One of my 101 things to do in 1001 days, is to learn Photoshop. So today, I created something using Photoshop on my artist’s date.
The flowers in this are photos I took of flowers in my garden. Now I’ve learned to cut out subjects from photos and paste it in another image, and I played around with the filters, and text. I’m learning! And I had fun!I’m feeling much better about things. Don’t know why…just kicked myself in the butt, and said enough!
Still having the disabling headaches, and I had no idea that tinnitus could be this loud!! I think I will go insane if I have to hear this all the time. Oh, wait! What’s that you say? Too late. Yeah, I know. Did I mention that the sounds in my head are not voices? Well, not lately anyway. Ha!
Yes, I’m in a strange mood. You have industrial machinery running inside your head for days and see if you don’t get a bit punchy! Today for about 2-3 hours I had the machines in my left ear, and a high-pitched squeal in my right…What the??? (I’m trying to stop swearing. Probably not the right time for that, but I’m giving it the old college try.) What does that mean anyway? “The old college try”? Hum.
Well, I sat up for about 30-45 minutes to eat dinner, and now I’m getting a headache. Sounds like I still have low pressure. ??? Maybe??? Oh, who the….oh wait, I’m not swearing….um….who in the world knows? (better?)
Dr. Kaylie and Dr. Gray agree I should have another lumbar puncture, and if my pressure is low, I will have another myelogram and patches the same day. Next, Thursday we’ll find out my symptoms either have nothing to do with Cerebrospinal Fluid, or I’ll be getting more patches. Can you guess which answer I’m hoping for?
At first I was very concerned, why would I be getting new leaks? What would this mean for the future? Will I have to do this over and over and over again?
Then Stuart said something that made so much sense, I thought, “Why didn’t I think of that?”
Imagine you have a water hose, and it has a few leaks in it. You patch all of the leaks but one, at first that one leak doesn’t seem to get any bigger, but after the pressure builds in the hose the leak gets bigger. Or there may be other weak places in the hose, and since the other leaks have been patched and aren’t there to release the pressure, they start to leak.
Doesn’t that sound obvious? He’s so smart! And made me feel much better. Surely, there will be a finite number of weak spots, and this will happen a finite number of times!
I’m a little nervous about going through this again. No, the procedure really isn’t that big of a deal. The worst part is getting the IV before the procedure. As the phlebotomists say, “I’m a difficult stick.” I have very small veins that like to roll away from the needle. To make it worse, they keep it cold in there, and that just makes my veins shrink up. It usually take them a number of tries before they can get the IV in.
Kind of ironic huh? I’m going in for a Lumbar Puncture, possible myelogram, and CSF patches; and I’m more concerned about getting the IV than anything else. Guess I trust my doctor, more than the phlebotomist. hummm.
I’ve always said that we must be our own best advocates.
We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring. For me, I like doctors who will think outside the box. Who try empirical evidence, instead of thinking the normal is normal for everyone.
It’s also very important to make sure your doctors understand what is going on with you. That has been a hard thing for me lately.
I didn’t want to admit that I’m not doing well. I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards. I’ve been keeping my doctor advised of my situation, but I have been downplaying it. Stuart says I haven’t even been honest with myself. I haven’t admitted that Meniere’s has been ruling my life again. No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping. I got the Wii Game Just Dance this week. It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.
So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.
I realized that I have not been taking my own advice. I have not been a good advocate for myself! That is going to stop.
If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office. (Yes, Stuart. Another way this is affecting me? I can’t really hear on the phone very well.) I’ve also decided I don’t feel comfortable driving. Feeling a bit drunk all the time, is not the way you should feel when you are driving.
I feel much more empowered now. Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.
**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda). He said, “It might be a good idea to get another myelogram. What do you think Linda?”
There’s 104 days of summer vacation And school comes along just to end it So the annual problem for our generation Is finding a good way to spend it…
Yes, it has been a long time since I’ve been in school and had a “summer vacation”, but I have always loved summer. For as long as I can remember I’ve always felt better in the summer. I hurt less, and I just want to get out and do more. Longer Days and Warmer Nights…life is good.
The challenges of Summer?
I over do it because I feel better, then I pay for it!
I get over heated easily and don’t realize it because I love hot weather. (although we lived in Palm Springs, CA for a while…it was too hot there!)
I over extend myself. I have a hard time saying “No”, I seem to think I can do anything during this time of year.
I often end up eating things I shouldn’t, and get sick. (I just don’t plan well.)
Again, I get too hot before I realize it!
How I can over come these challenges?
Well, this should be easy, just do less! However, it’s often hard to tell when I might be over doing it. I guess my best option here is to pay more attention to what my body is telling me. And REST OFTEN.
Limit the amount time I spend in the heat. Don’t just trust that I can tell when I get too hot, or thirsty. Set a time limit, and stick to it. And DRINK A LOT of water!
I need to remember, I can only do so much! And sometimes, I can’t do anything. I feel guilty when I tell people I will be somewhere and then I can’t show up. I need to tell more people either, “No.” Or “Maybe.” If people don’t understand, then do I really want to be doing anything with them?
Since I have gluten and fructose intolerance, there are a lot of things I can’t eat. Too often I go out and don’t realize we may not be home when I get hungry. I must plan better for this. Make sure there will be food I can eat at parties. The easiest way to do this is to bring something. When we are going out and about I need to make sure we will be near places I can eat, or keep food with me. I used to carry protein bars in my purse that were gluten free so I’d always have something. Now, it’s more difficult. I haven’t found a protein bar that doesn’t have things I can’t have because of the fructose. I must find something!!
I used to never get over heated. I have a convertible, and I love to drive and feel the heat, and wind. On Wednesday, I was on my way home and got stopped due to road work. I was sitting still for about 20 minutes. When I got home I felt sick, and dizzy. I got way too hot. How can I prevent this? I have to keep WATER with me. Not soda, WATER! If I get stuck in traffic, I need put the top up and turn on the AC.
What do I want to accomplish this summer?
Complete all the requirements for becoming a licensed foster parent.
Perhaps take a vacation…something we haven’t done in a very long time. Even a long weekend would be nice. But traveling scares me…I’ll have to be prepared. And we really don’t want to leave our dog.
Take care of me. (read *pamper* here)
Read more books. I really don’t know if this is possible, but I’ll give it a go. (I love to read!)
Enjoy my birthday! (July 2nd)
Spend time with hubby. (I don’t really care what we do, just as long as we do it together.)
Enjoy my pets. Especially Sandy, on July 2010, the vet told us that Sandy had 6 months to a year to live. I don’t think anyone told her!
Enjoy driving. (something I haven’t been able to do much for the last 2 years.)
Enjoy our garden! This is the first year we’ve tried growing a vegetable garden. I keep looking at a friend’s garden and think…”Wow, why does their garden look so much better than mine?” Oh yeah, they aren’t using all organic practices. Let’s just say I now understand why organic produce cost so much more.
No matter what your plans for the summer, be sure to take care of yourself. Keep things close to you that make you feel good. For example: I take a bath every night right before I go to bed. It really helps me get to sleep, feel more relaxed, and hurt much less. I put lotion on every night, often my husband puts special peppermint lotion on my feet. (My feet get hot at night and the peppermint makes them feel cool.)
Spend time with people who are good for you. Avoid people who are toxic. (you know who they are, you may feel like you have to spend time with them for some reason or another, maybe they are family, but you don’t. Just say “NO”. You can do it. I know you can.)
Enjoy yourself. That’s the most important thing. Find ways to make your life easier, and more enjoyable.
Then pass it on. Let other’s know what secrets you have found that make you feel better.
I wrote this post yesterday but for some reason I didn’t post it. I still want to let everyone know what was going on, but I also want to say that the tinnitus has calmed down to a tolerable level, and my hearing is almost back to normal. I’m feeling much better!!
But this was yesterday:
As we all know, I’ve been under a LOT of stress lately. I’m really trying to take care of myself, but I still feel pretty crummy.
Last Thursday, I woke up and the hearing in my left ear had significantly dropped. Now, it’s been over a week, and still my hearing is down. I can’t remember a time this has ever happened before. Normally, if my hearing drops I have an attack shortly afterward. My last attack came after 4 days of diminished hearing, and that was unusual.
After the scare with my hubby, I have been so very tired. I’ve been sleeping A LOT, and mainly just lying around. I keep feeling off-balance, but not spinning.
Last night the tinnitus significantly increased. And I really mean Significantly! My left ear is roaring so loud I can hardly concentrate on anything else. Sleep is almost impossible. (I did doze on and off all night.) It’s just so dang LOUD! My head hurts.
I just want to scream, “What the F*%&?”
I’ve been feeling like I’m on the verge of an attack for over a week. Hearing dropped, fullness increased, tinnitus increased, and disequilibrium is icky. Being on constant alert is so tiring, and painful. Yes, I said painful. I am in knots, all over my body. I am so tense I just can’t relax. Every night before I go to sleep I have to take a hot bath to try to help the pain.
On top of that, I can’t stop thinking about how close I came to losing my husband. I just don’t know what I would do. He is just so much of my life. My best friend, my lover, my care-giver, my provider…. Not only would I be losing the love of my life, I’d be losing my stability. I feel horrible for thinking about those things. It has been so hard for me to give up so much of my independence, and I finally came to terms that I can rely on him, and accept his help…but what if, in the blink of an eye, it was all taken away? Yes, we have life insurance. I would be provided for monetarily for some time, but money can’t give me what Stuart does. He accepts me, he loves me, he is always there when I need him, and I need him a lot.
I’m working on it. But that was a big scare, and it will take some time to deal with it properly. I just hope it did some good. I hope Stuart can find more in life to make him happy. He has a career he’s not that happy in, but we need the money. I would really like for us to be able to get in the position where he could afford to make much less money, and where I could contribute. Having a job you love is much more important than having money. Unfortunately, with the medical bills, and a mortgage, money is pretty important right now. We thought about down sizing, and simplifying our lives, but selling the house in this market…not really possible. But I want to have a plan. A plan to change things. I want for Stuart to find hobbies or volunteer work that he can find happiness in while he still has to work in a career he really doesn’t like. We can do this. I can help.
thanks for listening. I feel much better today. : )
I woke up yesterday and the hearing in my left ear is down, and I felt a bit off-balance. I slept for 4 hours in the middle of the day. Then I felt much better, but still my hearing was off. I went on to have a nice night with my friends.
This morning I woke up and my hearing in my left ear is still diminished quite a bit. When I turn my hearing aids on it plays 5 notes, I could only hear 2 of them in my left ear. So, I’m simply not hearing certain frequencies. Today I took it easy. Still no spinning, but I’ve got the advanced warning signs. Hopefully, it won’t happen…but.
I’m very stressed tonight, and got very upset earlier. I know stress can exacerbate Meniere’s symptoms, but we all know, you just can’t turn off our emotions or what is going on around us.
My friends who were visiting this week left this morning. I will miss them. I wasn’t able to do a lot this week. We went to a very nice party on Monday, but on Tuesday I woke with a sore throat and just didn’t feel well. I thought I was in the sun too much on Monday and didn’t drink enough, but the symptoms continued. I still have a scratchy throat. I don’t know if I have a very, very slight cold, or if I have allergies. My bet is on the allergies, but really I just don’t know.
Wish me luck that my Meniere’s warnings don’t turn into an attack.
Picnic with Ants 