Scalp folliculitis or not?

[ragedrew]

I am a 67 year old, white male in good health, physically fit with a full head of hair.  Since my mid-20's I have suffered from a condition where for no reason circular areas on my scalp  about a half inch in diameter begins to hurt/sting, the lesion becomes slightly red and then the skin becomes open and raw.  When the hair within these lesions is pulled out to relieve the pressure, the bulb end presents a long, gelatinous tubule.  Pulling out these "infected" hairs relieves the pain considerably. No pus or discharge is associated with these lesions.

The lesions can remain sore for as long as two weeks or more and if it clears up develops a scab and then heals like any other skin abrasion. The hair always grows back. These sores are often in pairs, bilateral to the scalp mid-line, and can occur anywhere. The condition appears in flares and then disappear for a couple of weeks when it then re-appears.

Over the last 40 years I have been seen by a dozen dermatologists
who have tried every antibiotic from Ampicillin to Zithromax without success.  Corticosteroid creams and lotions do not work, nor do UV treatments or any of the standard therapy shampoos, Betadine, or Hibiclens (which aggravate the condition)

I had biopsies of these lesions done at the U of IL Medical Center some years back by Dr. Betsy Fiedler and the results were negative for any dominant organisms.  An allergy test series was also negative.

I have not taken any medication consistently over the past 40 years that could aggravate this condition.  My father also suffered from this condition.

Do you have any ideas as to what might be causing this condition and can you suggest any new remedies or treatments that you think might reduce or eliminate the problem?

[Alan Rockoff, MD]

Yes.  I think you have trichotillomania, or hair-pulling.  There is no such condition which causes the need for hair to be "pulled out to relieve the pressure."  The "long, gelatinous tubules" are hair follicles you're yanking out by the roots.  

The conviction that these hairs are "infected" and that therefore "have to be pulled out" is a variant of obsessive-compulsive disorder.  Medications are available to treat this.  First, however, people who have the condition need to acknowledge that they do, at which point they'll be willing to consult a dermatologist who works closely with a psychiatrist familiar with this disorder.  This acceptance is unfortunately not common, and since you've had the problem for 40 years, I doubt you'll accept it either, or at least the possibility that it might be accurate.

On the other hand, just maybe you'll decide that 40 years of running around in circles and getting nowhere is enough, and that a new approach is worth considering.  Either way,

Good luck.

Dr. Rockoff

[ragedrew]

Prehaps I wasn't clear enough on describing the symptom progression.  If it wasn't for the real pain of these lesions, I couldn't care less about pulling out the hair inside the lesions.  When I do go into remission and my scalp is asymptomatic, I NEVER touch my scalp and couldn't care less about hair pulling.  I NEVER said my follicules were infected, but the big, unanswered question is still what causes these very real and painful lesions?  By the way, two of my dermatologists including Dr. Fiedler already ruled out the obsessive compulsive possibility when they examined and photographed the lesions at their worst.  They just recommended that I not pull the hairs out
because it wouldn't help the healing process.  Any other ideas?

[Alan Rockoff, MD]

My impression remains the same.  No disease I know of or have ever heard of "forces" people to pull their hair out to relieve pain.  Ever.  There are other ways to relieve pain--creams pain killers, etc.  Try them instead of pulling and see what happens.

Dr. Rockoff

[FarmJ]

RageDrew,
You are not alone in your scalp pain.  My doctor diagnosed it as Acne Necrotica precisely, more commonly referred to as Foliculitis (folliculitis) by some doctors.  I have run the gamit with possible remedies, hoping to stem the flareups.  Anything from diet, allergies, shampoos, long-term scripts of antibiotics, etc.  The only relief was from Accutane.  Due to lawsuits, it took an act of congress to get on the wonder drug.  Unfortunately, there are side effects that could prevent you from taking it, namely its effect on cholestorol.  

My only complaint is that Accutane only lasts one year before symptoms return.  (after finishing course of accutane)

Should anyone read this forum and have good results from anything, please post your success.

[Deanied]

I've given up on seeing Dr.s about the same condition because of the insulting way I'm treated. Like it's self inflicted: really! No knows what kind of pain we are having from the itching, burning, and stinging. If I don't open and release the hair that is trapped under the skin, I get hugh lumps on my scalp. Aren't African American men told to remove ingrown hairs? This is when it appears to others that it has healed when all that has happened is that skin has grown over it and the hair keeps building up underneath in a circle. I go into a sleepstage where I seem to function half asleep and half awake. I am afraid to go into too deep of a sleep and into a coma. For five years now, I have suffered with extreme pain, have lost my family, marriage, friends, my house and the medical bills didn't help. I've just found out that after surgery five years ago in my head, I developed scar tissue where the hair becomes trapped. The pressure gets so bad that I have "no choice" but to get the globs of hair out. When I do, the whole world comes alive and I can focus and my mind is clear once again for a little while anyway. All of a sudden I notice light coming through the windows, etc. Why can't Dr's just say " I don't know" instead of it's just stress or you're to blame for some reason? When the scar tissue becomes infected or inflamed it seems to travel throughout my system causing other serious problems. If you'd like to discuss this further with me, you can email me at ***@****

[biggmass]

A related discussion, huge hard lumps on scalp was started.

[soonkuen]

A related discussion, Needed proper medication. was started.

[ma_y_be]

I 2 have suffered from this for 20yrs ck out morgellon's disease and ringworm of the scalp