I have it. My new neurologist (Dr Rao at Hopkins) looked at my MRI for about 2 seconds and diagnosed me with it. I didn’t know what to say besides “oh”. And I thought back to everyone who came to me and said “Have you heard about this thing called Chiari Malformation?” And my answer was always yes, but I’ve already looked into it and I don’t have it. JOKES ON ME.
I’ve got to find exactly which of my MRIs shows it.
So far my treatment is to drink water; 2.5 L a day, which sounds like torture to me.
The more research I do, the more my symptoms match up pretty much exactly.
And that makes it Migraine Awareness Month again as well! This year I don’t have any sort of elaborate photography project or anything planned (well, not yet at least) but I’ll figure out something to do for it. Right now I just want an awareness shirt I can wear. But I can’t afford the fucking $20 to order one online.
Just like the Lamictal, here I go again. I’ve started dosing down on my Namenda. I’ve known for quite a bit now that it hasn’t done anything. I mean I don’t think it has. Maybe there was a small benefit at first? Maybe there was no benefit at all? And it was just some sort of placebo.
Whatever the case, I’m dosing myself down to be completely off of it. I’m only doing my morning dose for 1 week, and then it will be none at all. That’ll leave me with only like 2 medications I take everyday?
When my neurologist left Johns Hopkins, I was distraught at the fact that I had to find a new one. I knew it would take time. And I’m usually a very patient person, but I’ve been without pain relief for too long now. But I scheduled a new patient appointment with another neurologist anyway and was determined to wait my 6months.
This month is January. My appointment was supposed to be February 1st, which was no problem! I could wait a month, that would be fine. I will just do my over the counter routine and it won’t be too bad because it’s only a month!
Surprise! They call to cancel my appointment. My doctor is now doing inpatient only that month, which is so not anyones fault and I don’t blame them, but I’m still upset. The earliest they could schedule me was June 1st. As in 6months from now JUNE 1ST! Now, THAT I don’t know how I’m going to make it to.
I do have an appointment with the Nurse Practitioner near the end of this month, but I’m not 100% sure what she can do for me? Can she prescribe me new medications? Can she recommend me for the nerve burning procedure? I just need SOMETHING that will work.
I’m going to make a list of everything I want her to cover with me and bring it so I won’t forget anything. So far that list looks like:
- Botox?! is it worth/too expensive!!
- Nerve Blocks work but are too temporary
- Can she get me into the pain clinic for the nerve burning?
- Stimulator trial?
- plz just tell me to hang in there
Linda White, please don’t fail me now!
I am TIRED of being tired.
I feel just absolutely exhausted.
I am too tired to think beyond basic functioning. The other day I even took like a 3 hour nap when I got home from work. I guess it really doesn’t help that I’ve quit caffeine as well.
I am going to sleep. And sleep. And when I wake up I hope to be rested!
Some hospital glam photos because I’ve been feeling really shit about my health right now.
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First photos are from my more recent visit to the cardiologist (FUN STUFF) and the bottom ones are when I had electrodes in my eyes! Remind me to email my doctor to find out the results from those…
I think I’ve been feeling shit about a lot of things lately. Being let down by friends, never having enough money, and my health. I need an outlet. And some friends to talk to.
Friday’s withdraws were BAD. In the last hour of work, it got so much worse. And I was hidden underneath my desk, thinking how awful it would be if I ruined everyones day and went to the hospital.
When I finally got home, I broke down and ended up in the bathtub with all the lights out. I sort of consider it my little comfort place. I hadn’t been in the bath for more than one minute when my phone rings. It’s the psychiatrist I saw a few weeks ago with some info about pain specialists and biofeedback. And while I’ve got him on the phone, I tell him about this horrible withdraw situation I am in. He writes me a one month prescription and I pick it up from CVS. It was the simplest fix, and here I was thinking I was going to end up in the hospital. Sometimes it just amazes me how things like that can fall into place.
In the meantime, I’m only taking half the Cymbalta dose until I can get a new neurologist. I swear there’s nothing scarier than a sudden detox from a medication!
The last time I was at Johns Hopkins, I got a prescription for Depakote. My neurologist had mentioned it to me before, but the side effects sort of made me not want to take it. So I have had this drug, just sitting in the bottle on my dresser. I look at it everyday when I take my other medications.
So far my other medications haven’t made a significant change in my pain level. But I am terrified to take the Depakote. The side effects he mostly pitched to me were weight gain, hair loss, and acne. Now I already have acne, and it seems to be mostly under control for the moment. Earlier this year I had a really bad bout of cystic acne which sort of faded away into this more manageable version which can be covered by makeup as long as I don’t mess with my face. I don’t want to gain weight or lose my hair either!
But then there’s the possibility of being migraine free. Of course I can always stop the drug once I notice a bad side effect. But what if I don’t notice until it’s too late? I don’t keep track of my weight all the time, and I know it sort of fluctuates. But I don’t want to get to the point where my pants aren’t fitting anymore! And I love my hair, I don’t know what I would do it more of it falls out than what already does. And the acne, I don’t know if I can go down that road.
For now, the Depakote will sit on the dresser, taunting me every morning and every night.
Today I broke my own heart. I’m going through my migraine journal and copying the most important info on to a calendar. I have about a year’s worth of daily entries to copy down, and while reading some of them I’m having feelings. Some of my worst days are just heart-breaking to read.
Today I don’t feel too terrible. Of course I am in some pain, but it’s not major. It’s kind of hard to look back on the bad days and accept that this is my life.
Those are some of the highlights. The worse the pain is, the worse my handwriting is I guess?
I guess that I am right, some days are hard to exist. But for whatever it’s worth, I’m doing it.
Somehow I feel my first round of Botox was more effective than this last round. Or maybe I was spoiled by the pain relief the nerve block offered. Either way, I feel no different. My migraine is still the same. I still have neck & back pain. Why was 4 months ago so good and now I’m back to being miserable. What was I doing different? I think I will try to stretch my neck & back out before work today. Some small exercises and see if it helps at all. I have a lot of feelings and a lot to say, but when I sit down to type it out… I cannot seem to find the words.
Good thing I see my neurologist this Friday.