When the head is on fire, and hair rains down

The ice packs for my head, which I bought on Amazon, were delivered yesterday. One of them is quite innovative, with gel embedded in a spongy fabric, apparently more efficient and practical. Yesterday, I used this cap for the first time. The relief is significant, but it doesn’t last long. The inflammation affected areas of the scalp are sensitive and painful, as if they were burns. I can feel them much warmer than the rest of the head. In my case, these areas have the shape of an irregular horseshoe.

It took several years to reach the diagnosis of chronic intermittent telogen effluvium. The pieces of the puzzle gradually fell in place, along with my growing familiarity with the subject.

This account is motivated by the change of occupation of my nephew, Fernando Aguiar. A brilliant journalist and astute analyst, Fernando decided to dedicate himself to hair therapy. He has been treating cases of telogen effluvium, and I decided to embark on this journey with him.

Chronic intermittent telogen effluvium is the term used to designate a form of alopecia and the process that produces it. It is a type of hair loss that mainly affects women in peri- and postmenopausal stages, like me. In humans, scalp hair has different physiological characteristics compared to hair from other parts of the body. It responds to different stimuli, and hormonal communication is also distinct. As a result, most alopecia cases only affect scalp hair.

Within this category, alopecia is divided into two major groups: scarring alopecia and non-scarring alopecia. Non-scarring alopecia can, depending on the circumstances, be reversed, while scarring alopecia involves irreversible destruction of hair follicles. Non-scarring alopecia is the most prevalent type. Since we are discussing telogen effluvium, let’s focus on non-scarring alopecia.

Non-scarring alopecia can be:

  • Androgenetic alopecia
  • Alopecia areata
  • Telogen effluvium

I deliberately left alopecia areata aside, as it is an autoimmune disorder that produces irregular areas of hair loss on the scalp. However, let’s keep its autoimmune nature in mind, since some authors consider it to be involved in other forms of alopecia.

As androgenetic alopecia and telogen effluvium can occur in combination, let’s explore their differences. As the name suggests, androgenetic alopecia is associated with a response to male hormones (testosterone and dihydrotestosterone). How exactly this occurs in female patients is not yet well understood. The most striking visual feature of androgenetic alopecia is the symmetrical pattern of hair loss with the hairline gradually receding, and hair becoming increasingly thinner. Physiologically, individuals lose terminal hairs (the longer scalp hair), and hair is  miniaturized, with increasingly finer hair until it is replaced by vellus (short, fine hair that also covers other areas of the body). The anagen phase becomes progressively shorter, not allowing enough time for the hair to complete its full cycle.

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In contrast, telogen effluvium shortens the final phase of the hair cycle, the telogen phase. This is one of the characteristics that aid in diagnosis: hair collected during washing and classified by length (higher percentage of short hairs in androgenetic alopecia and longer hairs in telogen effluvium) can be easily determined by simple counting. This is a crude test that can be done at home and can provide a valid indication in many cases.

Some authors characterize telogen effluvium as a non-inflammatory alopecia. However, there is relevant evidence in the literature associating telogen effluvium, particularly in its chronic and intermittent manifestation, with autoimmunity and systemic hyper-inflammation.

From an aesthetic perspective, due to its inhibitory response of hair follicles to dihydrotestosterone, androgenetic alopecia has a stimulating effect on facial, arm, belly, and other body hair. Alopecia areata represents an autoimmune response of scalp follicle cells without affecting the follicles of the rest of the body. The scalp presents irregular areas of hair loss, making it one of the most distressing forms of alopecia in women. Chronic intermittent telogen effluvium is the most difficult type of alopecia to diagnose and is the least understood by medical research. It often co-occurs with androgenetic alopecia but is qualitatively different regarding the type of affected and lost tissue. It confuses the patient because hair loss is not constant but intermittent and can occur over many years. During each phase of reduced hair loss, the person tries to identify which intervention may have worked, only to discard all hypotheses during the subsequent phase of greater hair loss.

Over the years of observing my hair changing, falling, weakening, and becoming thin, I learned that the process is not linear. Hence, the diagnosis includes the term “intermittent.” As I had used testosterone analogs, I suspected it might be a side effect of these medications. It seemed odd, since I had never exhibited such a side effect, in the many years since I used them. Hormonal side effects do not affect people equally. The side effects are highly individual.

The test conducted on hair shed during washing and collected in a sieve confirmed that it was telogen effluvium and not androgenetic alopecia. Even so, we always keep open the possibility that it may be another more severe form of alopecia that causes pain and a burning sensation on the scalp.

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Chronic intermittent telogen effluvium is a condition of unknown etiology and uncertain prognosis. The cause is unknown, and it is suspected to be one of the hyper-inflammatory and hyper-immune responses (of which autoimmunity is a subtype) to environmental stress factors, often as sequels of infections, but also as responses to social aggressions. They are more common after viral infections than bacterial ones, as is suspected in cases of myalgic encephalomyelitis, fibromyalgia, among others. I began to notice hair shedding and weakening after a severe infection in the spine at the end of 2014, called spondylodiscitis. The infection was bacterial. By the end of 2015, I traveled to the United States, where I ended up trapped in a desperate situation due to dramatic events, the most significant being the kidnapping and disappearance of the man I married. The incident was entirely covered up, the police seemed “helpless”, and eventually, I found out that the case involved social actors whom I had no way of confronting. My siblings took advantage of the situation to inflict some kind of strange “retribution” on me, a retribution I’m not entirely sure for what, but it involved “inflicting humiliation.” I was told that “my problem” was not accepting humiliation, and therefore, now I would have to “learn to accept it.”

Half of the remaining hair fell off.

During this time, when I lived in storage rooms, rented rooms in shabby places with delinquent racists in the southern United States, among other adventures, I cut my hair and started applying henna, hoping to restore hair health and thicken the strands. It didn’t work.

In June 2021, my father died. The extremely strange and painful mourning, combined with a definitive falling out with my siblings, led to a period where my chronic pain went out of control, leaving me at the mercy of the US healthcare industry, while my hair was nothing more than a handful of thin strands. I still tried to treat it, using headbands and caps to hide the damage, trying countless different treatments—needling, infrared light, low-level laser therapy, various substances identified in ongoing research—until I was hit by another one of those blows that only happen here, in the United States, in the summer of 2022. That’s when I shaved my head. Partly it was a reflection of other resignations, and from that point on, I aged a decade in 3 months. Shaving my head was a way of saying “I have nothing else to lose, and I will go down swinging”.

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I thought it would be more painful to see my head shaved. I also thought it would make it easier to let go of the rest of what there is to let go, as well as life itself. It wasn’t.

Today, I keep my hair short,  using a clipper. The areas affected by alopecia hurt, so I don’t touch them when trimming my hair. Hair in the affected area grows irregularly and generally slower. The skin of the scalp in the affected areas is sensitive, itchy, and burns as if it were a large wound. Occasionally, blisters and sores appear, then disappear. 

This is the situation – remember: we know that there is a possibility that this is not just telogen effluvium, although I hope it is.

In another account, I will describe all the treatments I tried and am trying, most of which had no result.

References and further readings:

Al Aboud AM, Zito PM. Alopecia. [Updated 2023 Apr 16]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK538178/

Rebora A. Telogen effluvium: a comprehensive review. Clin Cosmet Investig Dermatol. 2019;12:583-590. https://doi.org/10.2147/CCID.S200471

Rebora A. Intermittent Chronic Telogen Effluvium. Skin Appendage Disord. 2017 Mar;3(1):36-38. doi: 10.1159/000455882. Epub 2017 Jan 28. PMID: 28612000; PMCID: PMC5465665.

Saki N, Aslani FS, Sepaskhah M, Shafiei M, Alavizadeh S, Hosseini SA, Asl FA, Ahramiyanpour N. Intermittent chronic telogen effluvium with an unusual dermoscopic finding following COVID-19. Clin Case Rep. 2022 Aug 9;10(8):e6228. doi: 10.1002/ccr3.6228. PMID: 35957778; PMCID: PMC9361802.

Trüeb RM. Telogen Effluvium: Is There a Need for a New Classification? Skin Appendage Disord. 2016 Sep;2(1-2):39-44. doi: 10.1159/000446119. Epub 2016 May 21. PMID: 27843921; PMCID: PMC5096239.


“Official” (profile) picture – 2011

December 2 2011

December 18 2016

January 15 2017

December 18 2018

October 20 2020

November 11 2022

December 13 2022

April 12 2023 (there were blisters on the scalp)

March 20 2023

May 31 2023