thank you to everyone for the love and support you gave me after my last post. You help me more than you can know. It’s so good to know I’m not alone, and there are people out there who care and are sending me such good karma.
All of you would be so proud of me. I wrote Dr. Gray an email and told her exactly how things have been going. Really, you would be proud! I didn’t sugar coat it at all!
She wrote me back yesterday (yes, on a Sunday), and said she was so very sorry. She will call today, and we may have to try different treatments. She mentioned me coming in and reducing my pressure. She would actually take some out. She mentioned I may need a shunt…not sure about that. I have a friend who is getting one in November, she has high pressure and they can’t keep it regulated with medication, so they are giving her a shunt. I don’t know enough about it to tell you, my friend has explained it, but it just sounds scary to me. Here’s a link to an article on Wikipedia that explains it in more detail. http://en.wikipedia.org/wiki/Cerebral_shunt
Today, I’m trying the pills to lower my pressure again. Dr. Gray sounds certain that it’s too high. (remember, the last time I took this medication for a few days I ended up having a bad Meniere’s attack, and she thought my pressure was too low, so I was taken off the medication…it’s so confusing.) But she sounds certain now that I don’t have low pressure. That I’m in that rare margin of people who have high pressure that causes “blow outs” and then when she sees them they have low pressure…she patches them…and the cycle starts over. I’m looking forward to hearing what Dr. Gray has to say. Well, I won’t actually be hearing her, since I can’t talk on the phone, but Stuart’s pretty good at that. I’m eager to find out how different the two myelograms were. If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.
On top of everything else, yesterday afternoon after about 2 hours have having VERY LOUD tinnitus my left ear started to hurt. Then it started to drain a clear fluid. I do have a tube in this ear so it’s easier for it to drain if it gets too much fluid. It didn’t pour out, but I had to keep cotton or a tissue in it or it would run down my face. Like it did while I was sleeping….yuk. Today the draining has pretty much stopped, and the pain is much less, but Dr. Kaylie wants to see me tomorrow. He thinks, ”You may have had an otitis media. You should come in tomorrow and let me take a look at it.” So I have an appointment with him tomorrow at 3pm. (FYI, in case you don’t know, otitis media is a middle ear infection, I looked it up.)
I’m looking forward to hearing what Dr. Gray has to say. Well, I won’t actually be hearing her, but Stuart’s pretty good at that. I’m eager to find out how different the two myelograms were. If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.
I was so scared after reading Dr. Gray’s email about a possible shunt, and then having that fluid running out of my ear, I didn’t sleep at all last night. I finally went to sleep around 8am, and got up at 11:30am. Funny, I’m not exhausted today. But it doesn’t take much energy to just lie in bed all day, so I’m not using up much energy.