Yesterday I had an MRI done of my brain. I’ll find out the results some time next week.
I was looking again at the brochure they give you ahead of time, and I had to laugh. The brochure says, “You may feel some vibrations. You will hear a loud, rhythmic tapping from the machine during your study.” Talk about an understatement!
Getting ready for the exam is rather cozy. I put on a cotton gown that was quite modest. They had me lie down on a table and put a pillow under my knees, like how I’d get comfortable in yoga class. They gave me earplugs because the machine is loud. They put pillows on either side of my head, which is how I like to sleep (or at least one side of my head) when I’m on my back, anyway. They gave me a blanket. To be honest, I’d been wanting to lie down all day! (In fact, I’d done it a couple times in the break room at work.) So it felt very good to have someone solicitously telling me to do so and making sure I was comfortable.
I only wish they’d given me pillows for my arms. My elbows were on the table — and the part of the table that didn’t move, so they kind of hunched up when the table slid me into the machine. He’d told me to be perfectly still, so I was worried about adjusting them, and my shoulders were tense — and then what seemed like loud alarms went off! Like Star Trek red alert warnings or perhaps prison break alarms. Had I moved too much? Did that mean I shouldn’t breathe?
I kept thinking of the line from Galaxy Quest: “I know that sound: That’s a really BAD sound!” At least it made me laugh — in my head only, because I was still a little afraid to breathe! Surely they didn’t mean me to be so still I couldn’t breathe, did they?
It took awhile, but I finally figured out that these ominous loud throbbing pulses were the “rhythmic tapping” the brochure had referred to. They would switch from a high pitched red alert type to a lower pitched more ominous clear for the nuclear warhead sort of sound.
Anyway, I figured out a better way to adjust my hands, and I was almost able to go to sleep. The pulses were kind of mesmerizing, once you refused to let them alarm you. With one set, it almost seemed like I could feel the molecules in my brain realigning, which was rather freaky, too. I tried to sing in my head to go with the beat, and that really helped, especially to make me stop thinking so much about breathing.
They really do need to reword their brochure, though, at least for people whose head is going in the machine. Let’s see, it could say something like this:
You may feel some violent shaking. Do not be alarmed. You will hear loud, ominous pulses through your earplugs, similar to alarms as in a prison break, air raid sirens, or red alert signals on a starship. Do not worry, and try to breathe normally. This is all part of aligning the molecules in your brain through the mighty power of magnetic resonance.
Hmm. I have a feeling I know why they go for understatement.
Yesterday was the 23rd straight day of my headache. I woke up with it real sharp, but on the opposite side. That actually encouraged me, because my old migraines had a habit of switching sides right before they were ready to finally leave. So this was acting more like a “normal” migraine for me.
Then I took an Indomethacin (a strong NSAID) and two Topamax (a new preventative the neurologist prescribed), and had breakfast and rested before work. The headache pain really let up, but I felt dizzy and sick.
So — at work I looked up Topamax to see if dizziness was a side effect, and, well, I ran across another side effect and combined with something else I’d been experiencing, it dawned on me that the Topamax is completely negating the other medication I am taking to regulate my hormone levels.
So — what this means is:
1) Topamax is NOT a good preventative for me.
2) It could actually explain this extra long 24-day headache, because my headaches have always been hormonally related. The Topamax may have made it worse instead of better. So I don’t have to be puzzled if the MRI comes back clear, as I hope it does.
3) It explains why my emotions have been all over the place these past couple of weeks — and especially why I’ve been crying at the drop of a hat. Whew! I was starting to think I was just a basket case!
So — I called my neurologist to ask her to take me off the Topamax and put me on something else. We had discussed the preventative I was on two years ago, which had worked so well, I stopped using it. I am definitely leaning toward going back to that. It also happens to be an antidepressant, and with everything else I am facing, I think that would be a nice migraine preventative to use!
However, she is out of the office for a “couple of days”. Supposedly she had someone else filling in for her, but no one did call me back on Friday. On my own, I decided to cut back the Topamax to one pill a day on Saturday. Since they had me start out gradually, they will probably want me to stop gradually, too.
And today, it snowed! I woke up feeling much better than I did on Friday, and the world is so beautiful! But I only have three Indomethacin left, so I decided to save them for days when I have to work. I took the one Topamax and some Naproxen instead, and ended up pretty wiped out with a headache.
I had hoped to go to our Open House at the Library and then do the grocery shopping and then go to a friend’s book launch. But I ended up doing none of the above. If I had only had the bad headache, or if it had only been snowing, I might have done some of those things. But I knew that driving in the snow would have made the headache pretty intense.
Oh and a new weird symptom is a sore neck, particularly when I swallow. Lymph nodes? I’m super tired, and it was all I could do to do the laundry and sweep the snow off the steps. (I knew I should have bought a snow shovel!)
Tomorrow I don’t think I will make it to church, or to the book club I hoped to go to for the first time or to the prayer meeting in the evening. My big goal for the weekend will be to buy groceries — I will have Tim with me to push the cart, so I think I can pull it off.
I’m developing a new fear that I will use up all my sick leave — which is partly why I’m rationing the last Indomethacin. I need to use it on days when I work. I’m still praying and trying to trust. Whatever in the world is going on, God will get me through. “When you pass through the waters [or the headaches], I will be with you.”
On the lighter side, I just got this big sense of well-being at the MRI yesterday. I know people were praying for me; that must have been involved. I got this nice sense of here is this big huge hospital full of people whose job is to care about how people feel. And after a day of trying to work while feeling crummy, there was a nice man telling me to lie down and get comfortable and asking me how I was feeling. It was very nice. I had a nice meal at the almost empty cafe when I finished, and rush hour had almost finished when I drove home.
Today, too, it’s so nice that the first snow of the year hit a day when I don’t have to work. I can get some things done, then lie down. I was up in my room, with the windows open watching it snow, reading the delightful book, The Elegance of the Hedgehog, and I even got to the place where it explains why they call it that. The roads are supposed to be clear by Monday, so it’s simply snow to make things beautiful for a few days.
All that is to say, hey, I’m not feeling well; I’m actually feeling pretty lousy. But I’ve got a chance to take care of myself, and that does feel good.
Sondy
I too hope your MRI is negative. Just wanted to share a bit of my story. I started in 1983 getting progressively worse and debilitating headaches. I went through all the known tests and was eventual told “it is stress”. For almost 2 years my head hurt EVERY day (24/7). I gave up on doctors and medications because nothing really helped and most made me worse. In 1987 my mother forced me to see a nutritionalist who along with a holistic MD diagnosed Systemic Candidia. After 3 months of treatment I had about an hour without pain and gradually after 6 months was virtually headache free. I stuck with the diet, et al for about a year, before going back to eating whatever. Too much sugar will still give me a headache and I absolutely refuse antibiotics. Check out any number of sites and books. This one is one of many: http://www.candidafree.net/?gclid=CNGG7NfLwJ4CFQO2sgodjxz-pQ
One thing I have found over the years is that doctors are “practicing” medicaine and DO NOT have all the answers. Sometimes we have to find our own.
Hi Sondy,
I had similar headaches in my early 40’s. They started in early Nov and got progressively worse until I had 24/7 headaches. I was hospitalized and found that my thyroid was low. They told me that the HA’s should correct when my Thyroid normalized….well it didn’t! They did an MRI, transcranial echo…I was seeing the best Neurologist at Scripp’s Clinic. I thought I would do anything to get rid of them! Tried all the migraine meds and So
a (muscle relaxant) for my stiff neck…Nothing helped until I tried Botox. They injected it in my facial muscles and neck…I had about 4-5 treat
ents at about $1000ea for med and MD and slowly they got better! The length between tx was longer and I was using less migraine meds and Soma.
Don’t give up trying treatments! Make sure you taper the Topamax! (I am a Pharmacist) It made me loose my balance when walking down stairs when the dose was escalated. Call me if you want more info. My cell is listed on Face Book! Good Luck. I will be thinking of you!
Sondy,
Your description of your experience in the MRI just might make my next one there a little better….I’ll be giggling thinking of your Galaxy Quest comment so much that I might forget to be claustrophobic!
Lorinda, the weirdest thing about this series of headaches was that it did not come on gradually. I’ve had prolonged headaches before, but for more than three years, my headaches have been under control. Then in September, I suddenly began having week-long ones. No transition. “Stress” would have hit more gradually, I really think. So I’m looking into possibilities. Did your Systemic Candidia come on gradually?
Lorri, I confess I quit the Topamax after “tapering” with one pill only one day. But I was only on it for two weeks – one week with one pill, one week with two. I don’t think my body was used to it yet — lots of side effects the whole time. What’s the worst that could happen, I might actually get a good effect?
And if my neurologist doesn’t like it, well, she should return my call!
I do feel better, but it’s still Day 26 of this headache. The trouble with headaches is there are so many, many different things that can cause them. The miracle cure for one person may do nothing for the next. My neurologist may well be right, and it may just be a new pattern for me — I certainly got plenty years ago. Anyway, we shall see…