In case you missed it, I wrote this piece for Brain and Life about dealing with medication-related hair loss or other hair changes. Read the full text below or follow the link:
https://www.brainandlife.org/articles/medications-and-treatments-for-neurologic-conditions-can-change-hairs-texture/
How to Deal with Hair Loss Caused by Medication
Treatments for neurologic conditions can change hair’s texture, color, and volume. These experts explain why and how to handle the changes.
Kelly Baker was 13 when she was diagnosed with epilepsy and prescribed divalproex sodium (Depakote). The drug controlled her seizures but caused her hair to fall out, which was terrifying. “When it first started, I had no idea what was going on,” says Baker, who is now 42 and lives in Los Angeles, where she’s a family therapist. When her doctor adjusted the dose, the problem resolved. But a strange thing happened when her hair started to grow back. Her previously straight hair came in curly—”not a little bit curly but the curliest hair you’ve ever seen.” Baker didn’t know how to tame it or style it or which products to buy. And she didn’t love being asked repeatedly by classmates and friends, “What happened to your hair?”
Baker’s change in hair texture is not uncommon after hair loss, says Shilpi Khetarpal, MD, a dermatologist at the Cleveland Clinic. “Different factors like hormones, nutrition, and genetics can change hair color or texture,” she says.
Baker endured her curls for two years and then found a stylist who could relax it with chemicals. “I didn’t want to look different,” explains Baker, who still takes divalproex sodium. “But I hated the [relaxing] process. It’s so bad for your hair, and the chemicals get into your system, and it never lasts. I’d get it done, and then my hair would grow an inch and I’d be back where I started.”
Despite the process, she kept straightening her hair until age 30, when she’d finally had enough. She asked her hairstylist for some tricks for treating and shaping her curls—and embraced her wild head of hair. “Now this is me,” says Baker, who shares curly-hair styling tips on Instagram (@greytcurls).
Baker shared her experience in a coffee-table book called Hair Stories (Damiani, 2019) by Rohina Hoffman, a neurologist who is now a fine-arts photographer. While working on her project, Hoffman came to see hair as a metaphor for identity, femininity, and the ways women exert control over their bodies. As she writes in the book, “This collective voice confirms that hair is best understood as a meaningful mirror of identity and often evolves, just as we do.”
Many people with neurologic conditions experience problems with their hair, including thinning, changing texture, or complete loss. Causes range from surgery and chemotherapy to side effects of medications such as methotrexate and other immune system suppressants, as well as drugs prescribed to treat epilepsy, high blood pressure, multiple sclerosis, Parkinson’s disease, and migraine.
The changes can be devastating; some say losing their hair is just as upsetting as their associated medical problems, says Patricia A. Gibson, MSSW, director of epilepsy information services and associate professor in the neurology department at Wake Forest University in Winston-Salem, NC.
Gibson, who runs a national epilepsy hotline, says many callers are unaware that antiseizure drugs like trimethadione (Tridione) can cause hair loss. Many are also unaware that blood thinners, such as warfarin (Coumadin) and heparin, can cause hair loss, says Sarah Y. Song, MD, FAAN, assistant professor of neurology at Rush University Medical Center in Chicago. “Experts don’t really know why anticoagulants cause hair loss,” says Dr. Song, “but all published reports say it’s reversible once patients stop taking the medication.” (For a full list of drugs that cause hair loss, visit the American Hair Loss Association website.)
Researchers continue to investigate the incidence of hair changes and reasons for them: A 2016 study in Drugs—Real World Outcomes looked at the newer anticoagulants to see if hair loss was still a side effect. (It was.) A 2018 study in Neurology and Therapy reviewed patients treated with teriflunomide for multiple sclerosis and found that hair thinning was typically mild and happened within the first three months of treatment—and usually resolved. In a 2015 study in Epilepsy & Behavior that looked at antiepileptic drugs, hair loss was the second most commonly reported side effect behind weight gain and was intolerable for 1.7 percent of patients who reported it.
How Hair Grows
Hair cycles through three phases. The anagen, or growth, phase lasts two to six years and accounts for why some hair grows so long. Between 80 and 85 percent of a person’s hair is in this phase at any given time. The catagen, or transition, phase lasts about two weeks and is followed by the telogen, or resting or shedding, phase. About 5 to 10 percent of one’s hair is in the telogen phase, which typically lasts three months.
Hair loss (also known as effluvium) is most common in the telogen phase, and it’s less noticeable then than during other phases, says Dr. Khetarpal. Hair lost during the telogen phase grows back in about three months, she says. Therefore, patients on drugs that cause hair loss won’t notice any changes until about 90 days after they begin taking the medication.
Hair loss during the growth stage—called anagen effluvium—is usually caused by radiation or chemotherapy. Because so much hair is in this long phase, it tends to fall out in clumps and takes longer to grow back.
Losing It
Even temporary hair loss can be traumatic. When Jackie Claus, 33, had to have some of her long, curly hair shaved off before a 2014 surgery on a cancerous brain tumor, she told her bald doctor, “You don’t understand! You don’t even have hair!” Then it got worse: A few weeks after a second surgery, Claus noticed the shower drain was blocked by clumps of hair.
“I remember…just crying,” says Claus, who believes the hair loss was caused by stress and a mix of medications and treatments. “I thought, ‘I don’t have a face for a bald head.'” She invested in a $400 wig and began taking dietary supplements that promised healthy hair. She tried minoxidil (Rogaine) and used shampoos that claimed to promote hair growth. Those closest to her were mystified, especially as doctors said her cancer was under control.
“Everyone said, ‘You’re going to be fine. The MRIs look good, and the tumors aren’t growing.’ And I was like, ‘But my hair!'” says Claus, of Leesburg, VA. “I think I channeled the stress of being a 27-year-old woman diagnosed with brain cancer into something I thought I could control.”
For Meredith Brose, 52, of Sheridan, WY, the specter of shaving her head prompted some creative thinking. When her doctor suggested a right temporal lobectomy to eliminate seizures after her antiepileptic drug stopped working, she asked her surgeon to preserve her bangs—an important part of her identity—when her head was shaved. “I’d always worn bangs to hide my high forehead,” she says.
After Brose woke from the four-hour surgery, her doctor happily informed her that although he couldn’t save all her hair, he had saved her bangs. They lay above the white gauze bandage across Brose’s forehead. Otherwise, she was completely bald.
Three months postsurgery, Brose’s hair had grown back, and she sported her trademark spiky hairstyle with bangs intact. Best of all, with her seizures eliminated, she would be able to drive again after losing her license due to a seizure-related car accident.
Alexandra Lebenthal also had to have her head shaved before a neurologic procedure. Before learning that, she had been enthusiastic about undergoing focused ultrasound for her essential tremor. “I had to think long and hard about it,” says the 55-year-old businesswoman from New York City. “Having ultrasound waves pulsed into my brain didn’t seem as dramatic as having my head shaved.”
On the day of the treatment, Lebenthal arrived at the hospital with straight dark brown hair that fell about five inches past her shoulders. When she left, her head was bald. “I decided it was best if I didn’t see it. I wouldn’t look in the mirror without a hat or scarf on,” she says. “In the first week, I had a tiny glimpse [of myself] and was so traumatized that I wouldn’t look again.”
Once her hair had grown to crew-cut length, she dyed it platinum blond. “It was my way of dealing with it,” says Lebenthal, who maintained the platinum color for more than a year. “I don’t know a brunette who hasn’t wondered what it’s like to be blond.” Today Lebenthal’s brown hair looks as it did pre-treatment; more importantly, she no longer has a tremor in her right hand.
How To Deal With Hair Loss
Unwanted hair change can be traumatic at any age and for any reason. These strategies from patients who’ve experienced it may help.
Prepare others. Reassure family and friends, especially children, that although you may look different with no or thinner hair, you’re getting healthier thanks to your medical treatment—whether it’s chemotherapy, surgery, or medication.
Do what’s important to you. If you feel comfortable in a fuchsia wig, wear it. If you have no problem with your hairless dome, raise your head proudly. “Don’t be afraid of your choices,” says Rohina Hoffman, a neurologist-turned-photographer and author of Hair Stories (Damiani, 2019). “Don’t let fear of judgment hinder your needs or wishes.”
Seek support. Consider seeing a professional therapist, leaning on friends and family, or joining an online support group. “Hair loss is emotionally challenging, and support is crucial,” says Kelly Baker, who lost her hair after taking divalproex sodium (Depakote) for epilepsy. Her hair grew back after her neurologist adjusted the dose.
Find an understanding stylist. Baker has high praise for both her current hairstylist and the one who worked with her when her formerly straight hair came in curly, although they had very different approaches. Her current stylist has shown Baker how to shape her curls and what products to use, while her previous stylist tried to remove the curls with relaxers and gels—but both provided much needed support.
Let yourself be upset. “You almost have to mourn your loss,” says Jackie Claus, whose hair had to be shorn when she had brain cancer surgery. “You’re going to be sad about it, and that’s okay because it really is hard.”
Have patience. It took two years for Alexandra Lebenthal’s hair to grow back after her head was shaved for focused ultrasound for essential tremor. It took that long for Claus’ hair to grow back, too, but now the crescent-shaped scar that starts at her forehead and curves toward her right ear is almost completely hidden by her regrown curls.
Be practical. While you’re waiting for your hair to grow back, you could color it to add volume or massage your head to stimulate blood flow and hair follicles, says Shilpi Khetarpal, MD, a dermatologist at the Cleveland Clinic. Or ask your hairdresser for a shorter, layered style to give your hair the appearance of fullness. Visit the Cleveland Clinic’s website for more tips like these.
Reframe the experience. Take this opportunity to try different makeup or wear a funky outfit or a different, shorter hairdo. Not only will you have something to talk about with friends, you may also find a new style. When Lebenthal’s hair started growing back, she dyed it platinum as soon as the strands were long enough. “It was a way of dealing with it,” she says. “I would never have cut my hair and dyed it blond, but this was a unique opportunity.”
Take a break from heat treatments. Blow dryers and hot irons can damage hair. Consider air drying your hair after washing and using gentle hair care products that don’t contain sulfates or parabens.
Try wigs or hair extensions. Today’s hair pieces are better quality and more natural looking, and hair extensions require much less maintenance. Find a hair professional that can help you select something that’s right for you.
7 Ways To Head Off Hair Loss
The more you know about hair loss as a possible side effect of prescription medications for conditions such as Parkinson’s disease, epilepsy, migraine, high blood pressure, and multiple sclerosis, the more you can take steps to prepare for or mitigate it.
- Educate yourself. Find out a prescription’s side effects profile to determine the incidence of hair loss. Ask your neurologist how a diagnosis, treatment, medication, procedure, or therapy may affect your hair. Will it change the thickness or texture? Will it make it fall out? Kelly Baker, an epilepsy patient, started losing her hair soon after she was prescribed antiseizure medication. Her doctor expressed little surprise, and she wished he had mentioned it as a possible side effect. “I was totally unprepared,” she says. After her doctor adjusted the dose, her hair stopped falling out.
- Report hair loss. Talk to your prescribing doctor as soon as you notice signs of hair changes, says Patricia A. Gibson, MSSW, associate professor in the neurology department of Wake Forest University in Winston-Salem, NC. “Many patients don’t mention hair loss to their doctors because they don’t think it’s related to medication, and doctors don’t always ask about it.”
- Consider all factors. People respond to medications differently, and many things can cause hair loss, including diet, environment, genetics, and stress. “Neurologists have to look at the whole person and his/her whole environment,” Gibson says. “Sometimes it’s a genetic factor. Male patients come in with reports of hair loss, and you look at their history and all the men in their family are bald.” Don’t assume it’s the medication, says Tesha Monteith, MD, FAAN, chief of the neurology department’s headache division at the University of Miami Miller School of Medicine. “Many common conditions can cause hair loss including chronic stress states, hormonal changes, anemia, autoimmune, and thyroid disorders for example,” says Dr. Monteith. One of her migraine patients reported increased hair loss since taking a calcitonin gene-related peptide (CGRP) monoclonal antibody drug. Because hair loss isn’t one of the drug’s listed side effects, Dr. Monteith is monitoring the patient to determine if there’s a connection to the medication.
- Tweak the treatment. If a certain medication is causing hair loss, talk to your doctor about changing the dose, the drug, or the regimen, Gibson says. For example, she’s found that for some patients taking divalproex sodium (Depakote) who report significant hair loss, adding a daily multivitamin offsets the problem. Dr. Monteith may advise her migraine patients to try nonprescription alternatives, including Botox injections or acupuncture.
- Take a supplement. A daily multivitamin may restore nutrients that some medications deplete, says Shilpi Khetarpal, MD, a dermatologist at the Cleveland Clinic. She also recommends discussing hair-boosting supplements such as biotin, oral zinc, and B complex vitamins with your doctor. “Also talk to your doctor about hair vitamin brands,” says Dr. Monteith.
- Eat a balanced diet. Protein is crucial, says Dr. Khetarpal, who advises consuming one gram of protein per kilogram of body weight. For a 150-pound person, that translates into 68 grams of protein daily.
- Try hair-loss products. Prescription or nonprescription treatments containing minoxidil or ketoconazole may help prevent hair loss, Dr. Khetarpal says. Or try a shampoo containing zinc pyrithione, which may be marketed as an anti-dandruff product.