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*)