I got my first headache since the patches yesterday. It was a pretty bad one, but when I took some meds and a short nap, it went away.
Last night when I was trying to go to sleep I was all stuffy. I think I’m having allergies. I woke up this morning around 8am with a horrible headache, I went back to sleep for a little while (read 2 hours on and off here) and when I decided I would just get up I swear my head hurt even worse.
Today it’s on the left side of my head. I feel like there has been a rod inserted in my left eye and it’s coming out the lower part of the back of my skull, and it’s rotating. At first I didn’t take anything, I thought I’d eat something and drink a bunch of water first to see if that would help. Nope. Then I took a Topamax, to see if I have high pressure. Nothing. Then I took a Maxalt (migraine reliever). Nada. Finally, I took a Hydrocodone. I can’t really open my left eye now, and I’m sick to my stomach. I just took a Phenergan to see if it will help with the nausea.
So what is causing this horrible headache? Allergies? Hormones? (I’m on my period.) or is my pressure going too high?
I just really wish it would go away! I really need to do some house work, I can’t tell you the last time my house was vacuumed….maybe Christmas? No wonder my allergies are bad. : ) I got a new vacuum for Christmas, anyone want to come try it out?
Happy as a Monkey (I did this painting for a friend's nursery.)
It’s been 12 days since the Cerebral Spinal Fluid Patches, and I am feeling better.
I still feel better in the mornings, and then fade in the afternoon. By the evening I often just feel a bit icky. Kind of off kilter. (you know, a little off-balance, not much, a little nauseous…) However, over all, I do feel much better as far as the Meniere’s is concerned. Not so much with my GI stuff, and my hip pain, but that is a story for another day.
Stuart talked to Dr. Gray a couple of days ago and he told her how I felt so much better in the mornings, then as the day goes on I start to feel worse again. She said that is a sign of low pressure. She suggested I come in and have her patch the last leak. They didn’t patch them all because they were afraid they would spike my pressure, and/or cause it to raise and stay too high. We decided to wait a few more days to see how I’m doing. I’m thinking I should probably stop taking Topamax all together (after discussing it with Dr. Gray) before I go in to have the last patch. Topamax is used to help control migraines, and it also treats bi-polar disorder, however, it can also be used to lower your spinal fluid pressure. Since I’m taking a small dose every day, I think it’d probably be a good idea to get off of it if I already have low pressure. : ) Then we will see if I still need to go in for the last patch.
How much better do I feel?
I haven’t taken any Valium or Phenergan in days.
The dizziness and feeling of being off-balance (disequilibrium) is minimized. In the mornings I don’t feel it at all.
No headaches. (well, I had a little one today, but I think it’s because I didn’t sleep well last night. No migraines though!!)
Hearing is staying pretty steady in my left ear, I can hear pretty good out of it, but some frequencies are dull. My right ear is still pretty gone, but in the evenings the tinnitus is much worse in that ear.
So what do you think? Sounding good so far?
I learned from my last experience with the blood patch that I don’t want to jump the gun and think I’m ok before I have a long while feeling that way. I’ve been conversing with another patient of Dr. Kaylie and Dr. Gray. She has high pressure (and she doesn’t have Meniere’s she has another vestibular disorder). She felt “normal” for over 2 months then the meds stopped working and her symptoms started to return. It was so hard for me after just 10 days of feeling normal to go back to having the symptoms again, I can’t imagine how she must have felt after 2 months! She is still being treated, and there is hope she will get back to that “normal” state too. Just as we are hoping I will.
This time I’m looking at things differently. Before, I looked at this as a possible cure. I don’t know if I want to think of it that way. That would mean that it couldn’t come back, and we have seen that it can. I have finally come to accept this disease as a part of me, that I have to live with for the rest of my life. I will always look for the best way to deal with it, and right now I think this treatment is it, for me. However, I know that the Meniere’s is still there. If something gets off-balance again, it will all come back. One of my lovely readers advised me to not fight it so hard, but walk with this disease and accept it. I’ve taken her advice. It will never be my friend, but it will always be a part of me, and I can deal with that (at least I’m learning to). It has made things much easier since I started thinking this way.
Another thing I’ve been thinking about a lot lately. Friends. I feel like I’ve lost touch with so many of my friends since I started getting really sick. (I say really sick, because I’ve been sick for a long time, but I was functional. This past 2 years have been much harder.) I was taking that very hard. But I really needed to look at it and realize, that most of it had nothing to do with me. Most of my friends also had children over the past 2 years. I can’t drive, and their lives are so busy with their new families they just don’t have the time to make for me. And that’s ok. I’m still here. You know, even if it is because they don’t want to be around a sick person, that’s ok too. I’m not going to take it personally.
I decided I’ve had some really great friends in my past, and I love them and want the best for them. We may not be in touch as much right now, that’s ok. We may be more in touch in the future and that would be great, if not, then it wasn’t meant to be. I will still love and cherish the time we spent together. I know there will be new people in my life, and in theirs. We grow, sometimes we grow apart, sometimes we grow together. Sometimes we simply grow up. I think I’m doing a lot of that right now. (at 47, you would think I was all grown up….but I’m learning new things all the time, especially about myself. And heck, I don’t think I’ll ever see myself as a “grown-up”. *shudder*)
A Zen Moment. (a commissioned painting by Wendy Holcombe)
Tomorrow I go in to see Dr. Gray again for another lumbar puncture and possibly having some spinal fluid leaks patched. They called today and moved my appointment up one hour so my lumbar puncture is at 11am tomorrow instead of at noon. I need to be there at 10:30am. Yay, that means I will be able to eat sooner!
Today, I woke up with a cold. It’s not bad yet, a slight sore throat, nose is running, don’t want to stay awake, head hurts, all brain foggy, achy all over…you know. I’m a little worried about tomorrow though. You have to be very still on the table when you get a lumbar puncture (after all, they are inserting a needle between 2 of your lumbar vertebra), what if I sneeze? Don’t know why I’m worried about that, I’ve only sneezed twice today.
I’m glad I have the appointment tomorrow. I’m really ready to see if we can’t get this figured out, but I am a bit nervous about having a cold. Even if I don’t sneeze or have the need to move, I am not going to be comfortable on that table, after all the table is hard and I already ache all over. However, I do want you all to know that a lumbar puncture is not like it used to be, they do not hurt. The only pain I really feel is the pain killer they inject first and it’s just a little sting. Then I feel a little pressure. But it’s not scary, and it doesn’t hurt. So no worries. I’m just a little apprehensive because I don’t feel good.
I will have to find a “Zen Moment” to keep myself calm and still. (actually, I just didn’t have a perfect picture for this post, so I thought I would shamelessly post one of my own paintings. *smile*)
I may be a tiny bit worried about having a cold during the procedure, but really, I’m mostly excited to get this over with. (I really hope they are planning on doing patches tomorrow and not just doing a lumbar puncture. Truthfully, I just don’t know.)
This year we’ve had a lot a snow, and ice. Not as much as a lot of the country, but more than we usually get in Durham, NC.
In 2006 we moved to Palm Springs, CA for a couple of years. We had two winters there.
Now in January I sometimes miss the smell of citrus in the air. In Palm Springs the orange, lemons, limes, and grapefruit trees are full of fruit this time of year. In our yard we had a small orange tree and a beautiful lemon tree. I used to pick lemons every day during the winter. I’d make fresh lemonade, I’d cook with them, clean with them, and I’d simply have bowls of lemons sitting around my house for the beauty and the smell.
Lemon Tree in our yard in Palm Springs, CA. Jan. 2006Our First Orange.
I remember when our small orange tree produced its first orange, Stuart and I split it. It was so juicy. I was so thrilled to be eating an orange that I picked from our own yard. (Stuart grew up in Tucson, so this concept was not as new to him, but he would get so tickled with me.)
We also had this beautiful tree in our yard that they locals called Fairy Dusters.
Here’s a typical sunset seen from our yard:
Palm Tree in the Sunset. Jan. 2006
Living in Palm Springs gave me a great appreciation for warm winters. It was interesting though, you could get on the Palm Springs Arial Tramway to go up Mount San Jacinto (2,643 ft elevation to the station at the top). It would be in the high 70’s and when you got on the Tram in Palm Springs but by the time you reached the top it would be snowing. It was amazing. It really gave you an appreciation of just how different the climate in the world is, in just a few minutes you could go from the desert to a freezing mountain top.
Cold weather to me means 1. more Meniere’s attacks. 2. more Migraines. 3. more general aches and pains (I have simply broken too many bones.) 4. my nose runs all the time. 5. I get a cough. 6. I see more mucus than I ever want. 7. I have to run the humidifier because the heat dries me out. 8. I get grumpy….well, even more grumpy than usual.
Oh I could go on I’m sure….I simply do not like the cold. (*insert here – “bitch, bitch, bitch”*) Because that’s what I would say if I heard someone else go on and on about this. : )
Are you one of those people who just couldn’t live without seeing the snow each year? Who love the cold? Or are you like me – to heck with that! I want a warm winter! Or worse than that….are you one of those who are actually having a warm winter right now? (really I won’t hate you…but I will envy you.)
* A note about living in Palm Springs.*
Palm Springs, is a little different from actually living in the desert. It has plenty of water. They water the grass there all the time. They have no water shortage. I still think it is such a waste. There are more than 125 gold courses in the Palm Springs area (this includes the surrounding towns). All the water they use to keep those gold courses green it made it humid there all the time. We lived in the desert, yet it was humid. So in the summers when it was 125F, it was still humid out. That’s why most of the residents are “snow birds”. Many of the businesses shut down in the summer. Even some of the churches close in the summer. The summers were like living in a ghost town…..a very, very hot ghost town.
I have an appointment with Dr. Gray on January 28th at noon.
I don’t know why all of a sudden they were able to get me in sooner, but I’m glad.
We’ll find out what’s going on with the Cerebral Spinal Fluid Pressure. Hopefully, she will be able to get something straight. Even leveling things out a little would help a lot. 3-4 attacks a week are driving me crazy. (as you all know.)
On a side note. I made Sauerkraut today….well I started the making of Sauerkraut today. I thought I had pictures of it from the last time I made it but I can’t find them. : ( So I didn’t take any today. But I will tell you what I did. It is so easy!! (especially if you have a food processor) *this recipe was inspired by the recipe for Raw Sauerkraut in the Whole Life Nutrition Cookbook.
Sauerkraut
1 head of Cabbage
1 – 2 Tablespoons of Sea Salt (I use 1, but the original recipe called for 2)
Peel off a few of the out leaves of the cabbage head. Save these you will use them later. Chop the head into small enough pieces to fit in your food processor. (be sure to remove and discard the stalk. I really like the center of the stalk, I always just gobble it up.)
Slice up the cabbage in your food processor with your slicing blade. (if you don’t have a food processor you can do this by hand, but it will take a while, you have to cut it up really small.) Transfer the cabbage to a bowl and toss with the salt.
Here’s the really hard part if you don’t have a food processor. Remove the slicing blade from the food processor and put in your little plastic blade. Return cabbage to food processor in small batches just smashing it up and making it all juicy. (if you don’t have a food processor you need to just keep smashing he cabbage with a mallet until you get a lot of the juice out. Of course, this is a great way to get your frustrations out.)
Just spoon your juicy cabbage into a clean jar, and cover with those outer leaves you saved from the beginning. Press the mixture down so the is some juice covering the leaves. This won’t be hard. Keep in a dark dry place for 3-7 days, I like to keep mine in my pantry. (I do put the lid on the jar, but I don’t tighten it.) Every day you need to press it down some more so even more juice will cover those leaves. (eventually the leaves will start to just fall apart, don’t worry about it.) The original recipe says to start tasting it after about 3 days, mine tastes nasty that soon. Just smell it, if it smell like sauerkraut, then taste it. If it taste like you like, then put it in the refrigerator the slow/stop the fermentation process. If you get a funky scum on the top of your sauerkraut, just spoon it off.
I use a wooden pestle from a mortar and pestle that I have to press my mixture down every day. Since I don’t use this mortar and pestle any more, I use it exclusively for this, now it smells like pickles. : ) If you used a pestle made from a different material, or perhaps a mallet, you probably wouldn’t have this problem.
They do make crocks just for making sauerkraut, and I’ve seen much more complicated recipes, but I’ve never tasted better sauerkraut.
I may make it a different way some time, I may even get a fermenting crock so I can make more than one head of cabbage at a time. But for now, this method does well for me, I just start a new jar before the one in the fridge gets empty.
(If I find those pictures, I’ll post one. Maybe I will take a picture of the jar I have started at least so you can see what it looks like.)
I simply can not believe how bad the tinnitus has been lately. First, I got that dang pinging sound….drives me insane.
Last night my left ear started roaring so loud I couldn’t concentrate. I get loud noises and squealing sometimes, but that never last that long. Usually, I just have this electronic sounding hum…annoying enough, but I’ve gotten used to it. But the noise last night lasted for hours. I was surprised I fell asleep, but I think it simply exhausted me, and it was a steady noise and I’ve found those aren’t as hard to sleep with. That pinging sound, now that keeps me awake. Every time I start to doze off, PING, and I am startled awake. I swear it’s getting worse.
I went to see Dr. Kaylie yesterday. He’s my otolaryngologist. He’s optimistic because I had such good results from my blood patch at the beginning, but he thinks I may need another patch. He was going to be meeting with Dr. Gray last night to discuss their patients. (they now have 22 patients together. I don’t think they all have Meniere’s. I am only one of 2 that have Bi-lateral Meniere’s.
He told a story of a woman who was found to have high pressure and she was taking the medication to keep it under control. She was symptom free for 6 months and the medicine stopped working. All her symptoms came back. I know I’ve been having a hard time having a relapse after 10 days, I can’t imagine how I would have felt if I was better for 6 months and then it all came crashing back down.
Last night I went to small Christmas gathering, I even drove myself! I was very proud. Unfortunately, during the party I started getting a pretty bad headache, and then I noticed my hearing dropped. Dramatically dropped.
I came home and my stomach was killing me, something I ate at this gathering had caused me a lot of distress. I ate half of a sandwich and was feeling much better. Well, my stomach felt better….not my head, and the hearing was still way down.
I decided to take one of the pressure pills. (the pills Dr. Gray gave me that would reduce the spinal fluid pressure if it started building up too high. She said to take one if I had a headache.) My headache did not get better, I decided to take 1/2 of a pain pill and try to sleep. I slept for 3 hours and woke up in horrible pain. My neck, shoulders, and head all hurt. Plus, my hands felt all tingly. I took a couple of Tylenol, and tried to massage some areas and stretch and finally I was able to go back to sleep.
This morning when I woke up my hands were still tingling, and soon the headache started. I’ve been fighting a headache all day. Stuart and I went out for a while today, we went to buy him a pair of jeans, then we went to the grocery store. The grocery store was packed because it was snowing. People in NC freak out when it calls for snow. Unfortunately, we really had to get some groceries or I never would have braved that mob.
When we got home my head was about to pound off. I again started with the pressure pill. It didn’t help my head at all, and soon my neck and shoulders were cramping again, and my hands were all tingly. I looked up the side effects of this medication. It says that these are “Serious Side Effects – seek medical attention immediately”. Well, I knew that it would wear off soon, so I didn’t seek medical attention immediately, but I won’t be taking any more of those pills. Stuart is going to call Dr. Gray tomorrow. (Yes, I know it will be Sunday, but that’s what she gave me her pager and cell phone number for, right? She can always decide not to call me back until Monday.)
I’m so scared that the blood patch didn’t take, or maybe I was just starting to feel better because it was my time to start feeling better and now I’m starting to feel bad again. Yesterday, I was so happy. I had a long conversation with a friend on the phone, and I drove myself to a party…I actually went to a party, by my self, at night! Today, I can’t talk on the phone, and I’m afraid to push it. I’m really scared the procedure didn’t work.
Well, if it didn’t, we’ll figure out something. It may not be the cure that this procedure was hoping for, but it will be something. My doctors will have learned a lot more about this disease, and I will have had at least a small reprieve. I will pick myself up, dust myself off, and find a way to have a life despite my illness.
Picnic with Ants 