Trying desperately to hold on to the computer and write these words. Concentrating up close sometimes helps…today I’m not so sure.
Here’s a Haiku that probably breaks all the rules, but bear with me today….it’s been a really rough few weeks. Last night and this morning being the worst.
Migraines,Vertigo – Bad!
Weeks full of pain and spinning,
why can’t someone help?
My symptoms have changed. Doctors look more confused when they look at me. That’s disconcerting.
As you know I saw Dr. Gray, my pressure was a little over 21. That was what my closing pressure was the last time when I felt my best…confusing. She mentioned that pressure doesn’t take into account volume and my volume was higher because of the excess fluid from the surgery..so does that mean my pressure was high or low? She’s thinking high. I wrote about this earlier, I think, so I won’t go into it again. But I do feel like I’ve kind of stumped her….maybe just a little. I do wish I was one of those patients who’s tests were more cut and dry. Here, let’s take this blood test…oh you have this, take this and feel all better. Or at least, you have this, here’s how we’ll treat it, but I’m sorry it won’t go away. I can handle that. But this. I’m having troubles with.
I really understand now how my friends feel who have no diagnosis. Like Allison and Maureen who know they have some vestibular issues but have no idea what it is. I just keep thinking…why can’t they fix this?
Yes, I have Meniere’s we all know that. But these migraines are much worse than they used to be, and the vertigo is very un-Meniere’s like. I keep having positional vertigo. That doesn’t go along with Meniere’s. (and why did I have the 5 months of no symptoms last year?)
The other night I had vertigo all night long, but I was alright as long as I lied on my right side. At first I didn’t realize this, I happened to be on my right side, everything was calm and I went to turn over, I got half way there and screamed. I actually screamed. I scared myself, I had no idea the scream was coming out of my mouth. So back to the right side I went, but that is the hip that is in constant pain so that was not the most comfortable position to be in, however, if I moved, I started spinning. Finally, I fell asleep, and you can guess what happened, I turned over in my sleep and woke up spinning like crazy. Ahhhh! It was a long night.
I saw the neurologist who is a headache pain specialist on Wednesday. She looks like a Pixie. : ) She seems very intelligent and knowledgeable about my case, and migraines. But she really didn’t look like she had knew what to add at this point since Dr. Gray had just seen me and added the Topamax we kind of needed to see if it will work first. She said to continue the Topamax Dr. Gray prescribed but she wants me to ramp up slower until I hit 200mg. So I went from 50 to 75mg Wednesday night. Last night was one of the most painful nights I’ve ever had. My headache pain was at a constant 8 or 9. At one point it reached a 10 but I was too weak to ask Stuart to take me to the hospital. I kept ice on my head, and kept drinking water. I was so very thirsty. I could not keep my eyes open. It was a strange thing, I didn’t feel like I couldn’t’ stay awake, I felt like I couldn’t stay conscious. I had horrible dreams, in which I would just sob and my head would pound. I know the dreams were caused by my headaches, but they were so disturbing. In one Sandy was bitten in half by Alligator, and was still alive and suffering. See horrors!!
Today Stuart has called all 3 of my doctors. If you are seeing 3 doctors, who do you call when things go so terribly wrong? First he tried Dr. Atkins, but we didn’t get a direct line to her nurse so he had to leave a voicemail in the generic mail box for the whole practice…who knows when she will get that message. He called Dr. Kaylie. He said, he thinks I should get another LP (lumbar puncture). oh joy. He called Dr. Gray. They had a long discussion the consensus is that I still have high pressure. She wanted me to come in tonight but it was 4:30pm and she still has 2 patients so she didn’t think it would be wise, so she is talking about Monday. However, she wants me to take some Diamox tonight. She said that will tell us if this is high pressure or not. I was in tears, my head pounding as Stuart was on the phone…I yelled, “Fine whatever, just make it stop!!”
Of course, now my fear is, it will just make it worse.
I won’t deny it. I’m scared.
I’ve had vertigo every day for 22 days. No not constant, but at some point during the day for varying lengths of time I’ve had vertigo every day. The severe disequilibrium is not as debilitating, but it’s not picnic. And I think I’ve talked enough about the headaches.