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*)
6 thoughts on “Feeling Better”
Sounds like you are on the right track! I hope, beyond hope that this is the road to long term peace. Love you, Healing Hugs, Lisa
Thanks Lisa! Your friendship and love means so much to me. I hope you are doing well. Hugs to you my friend. love you too!!
I think it’s awesome that you feel better. How is your patience as a patient? I’ve never been the best.
I love your attitude about accepting the disease as part of you. You would think it would be easy for us humans to accept things better, as everything that happens to us is a part of us. However, easier said than done. I think it’s the fighter in us that goes into survivor mode that wants us to get better. But, at some point it is easier, and in ways healthier, to not fight it all the time. I got tired of being battered and bruised going against that figurative brick wall. Just part of learning which battles to pick.
As for that “growing up” you’re talking about, I think being grown up is overrated. It’s too much fun to learn things, even the things that are harder to learn, because we get such a great feeling of accomplishment knowing we’re going in the right direction.
And on that note, this kid is going to run away and sit in some sunshine and have some tea. Have a good day!
My patience as a patient, is sometimes good, sometimes not so good. Oh, who am I kidding…often not so good.
Thank you for the encouraging words. I’m trying. I think I’m getting better at handling things. I realized just how much this week when I went to my therapist and really had nothing to talk about. She asked me how I was handling this and that, and I told her and she just said, “Wow, that’s a really healthy way of looking at things.”
Ummm. sitting in the sun…and tea….sounds nice.
I hope you are having a great day!
How nice to hear you´re feeling better. The things you have to learn with this disease is to enjoy the good days and weeks and avoid thinking about what might happen.
I´ve lost some friends, too, but like you I found out that they are really buzy with their lives – they are not avoiding me. I´ve also found new friends, but it takes a little longer to get to know someone at this age (49:).
My sisters are my best friends now and it´s a privilege to live in the same town as they do!
I wish you even better days !!!
You have been a great inspiration to me. You have a wonderful out look about things. I feel like you are a step ahead of me with all of this. And I really appreciate your advice.
It does take longer to make new friends at our age. I wish some of the friends I’ve made on here were closer to me..or me to them…I feel like we could be the best of friends. But meeting people in person, is harder.
Thank you for the good wishes.
I wish the best for you too!!