Moving into Menopause with MS: Double Your Pleasure, Double Your Fun
Starting in December 2013, when winter launched itself in SE Michigan with single digit temps and hat-high piles of snow, my mother and I locked horns in a power struggle over the thermostat. Constantly overheated and drenched in sweat, I wanted to dial it down to 65 degrees during the night and day, while mom still shivered with cold at 72 degrees.
I was accustomed to feeling sensitive to forced-air heat in the winter and being allowed to dominate our residential climate control so I could breathe. Ever since I developed MS and my rhino allergies worsened, that dry furnace heat had me gasping, sweating and head-achy. A simple turn of the dial down to 65, a ceiling fan on full blast, and a bedroom vaporizer usually solved my problems. But this winter, I was particularly miserable. My body temperature was completely out of control. Even a 65-degree room was no help.
I can’t recall exactly how the light bulb moment occurred. Someone might have said the words “hot flash.” But something made me sit down and check my menstruation log. I was shocked to see that I hadn’t logged a period for four months. My OB/GYN ordered a blood test to check my hormone levels. The test confirmed that I was, in fact, in menopause. I was relieved to finally arrive! Yea, no more periods! No more PMS, no more irregular bleeding, no more cramps, no more buying maxi-pads, panti-liners and tampons! I’m free!
But the hot flashes were ten times worse than my MS-related heat intolerance. I was having seven or eight hot flashes during the day, and up at night with at least two more. I slept naked and aimed a pedestal fan directly on me only two feet from the side of my bed. I used only a cotton sheet and thin blanket until I became deliciously chilled and pulled up the comforter before falling asleep. Four hours later, I kicked off everything, the sweat dripping down my chest. The fan cooled the sweat and sent me into chills, so I would draw up the covers again and fall asleep, only to repeat this slapstick routine several times more. Defeated and desperate, I called my OB/GYN’s office and talked to Rita, the head nurse, who is a saint.
“I did NOT sign up for this,” I whined to Rita over the phone. “It’s bad enough that I lost my waist two years ago when my periods became irregular. I can’t wear normal pants anymore; it’s like trying to put jeans on Humpty Dumpty. My gut pushes them down around my hips, the crotch hangs down to my knees, and the hems drag on the ground. My bust got huge and most of it is under my arms now. The rest is sitting on my midriff. I hate wearing bras, they hurt after a while. I hate wearing clothes. I want to be naked all the time. My skin gets prickly when I get a hot flash, I can’t concentrate, and I talk out loud to an empty house for hours on end to shake myself out of the cog fog. I fall asleep in the afternoons, I doze off in front of the computer, even in the morning shortly after waking. And don’t even ask about how I treat men on dating sites…”
“How do you treat men on dating sites?” Rita chimed in.
“Uh--let’s just say I’ve been an alpha female with no functioning communication filters,” I whispered sheepishly.
“Chasing them away, are we?” she teased.
“I vant to be alone,” I confessed, using my throatiest Greta Garbo accent.
My doctor began his protocol of symptom treatments. First, I tried Effexor, an SSRI anti-depressant that is also used off-label to treat menopausal hot flashes. I took it for three days and my hot flashes disappeared, but I quickly developed insomnia. I’d forgotten that SSRIs had caused me insomnia in the past, even at the lowest dose. Gotta sleep, so… that idea bit the dust.
Next I was put on gabapentin, 100 mg thrice daily. I was surprised to learn that this anti-seizure med we take off-label for neuropathic pain is also used off-label to treat hot flashes. But it didn’t work; not only did I still have hot flashes and night sweats, my legs became weaker. I tried taking all 300 mg at night to avoid the leg weakness, but it made no difference. My OB/GYN told me to give it more time, but then took me off it because I was a fall risk.
Side note: After being off gabapentin for a couple of weeks now, my legs are still weak, so I can’t blame the drug. Let’s blame the heat, that’s always been a good fallback scapegoat. I’ll mention the leg weakness to my neuro in August. And I’ll lay you two-to-five that none of my three doctors can tell me definitively what is causing my leg weakness. But, what’s new, right?
So what do you do when you fail two non-hormonal treatments? “The only thing left to do is estrogen replacement,” my doc said. I had a feeling hormone therapy was going to be on the table and I was open to it. I had recently quit smoking, too, so I was definitely a candidate. I was started on 5 mg of oral norethindrone (progesterone) and a patch with 0.05 mg estradiol (estrogen).
Studies show a decreased risk of uterine cancer when taking estrogen and progesterone together. Other studies have shown that taking estrogen alone prevents osteoporosis and provides protection from breast cancer, but raises the risk of uterine cancer. Oral estrogen poses an increased risk of stroke, blood clots and heart disease because it is metabolized in the liver. Just as we should educate ourselves about MS drugs, we must weigh the risks and benefits of hormone therapy. And just as we all respond differently to MS drug therapies, women’s bodies show an infinite variety of responses to hormone therapy.
I am happy to report that after only five days on hormones, the hot flashes stopped and my head cleared. Some of the symptoms of menopause overlap with my MS symptoms. What’s great about this is that hormone replacement is ameliorating the negative effects of high heat and humidity; my body temp has leveled out considerably; my mood has improved, and last but not least, brain fog, memory loss and confusion have cleared up or significantly improved. It doesn’t seem to matter what is causing those symptoms. Hormones seem to help.
So for now, all’s quiet in Kim’s world. But, you know how it goes. We MSers have learned not to become too wedded to what’s happening in the now. Wait a few weeks, things will change. Then they will change again. And again.
I feel hopeful and upbeat about both menopause and MS symptoms. Whatever happens next, I’m up for it. And I can probably thank the hormones for my healthy denial, too. We all need to fold ourselves inside a pink cloud from time to time, don’t we?
For more info on menopause hormone therapy study outcomes, see: http://www.nhlbi.nih.gov/health/women/q_a.htm#q1
Do you celebrate your MS Anniversary?