PANDAS AND TRICHOTILLOMANIA

[~Red Head~]

Okay. Here I am again, but with a different, yet same, subject....PANDAS, only this time it's related to trichotillomania. I have a hard time discussing this with anyone and have never discussed it until just recently when I was in counseling over my "bipolar" daughter. I have suffered from trichotillomania since age 11. I've read that PANDAS could be the cause of this also. I am now 52, and I have yet to conquer this. I remember having sore throats here and there as a child, but we just didn't go to the doctor much at all. I have very few recollections of ever going to a doctor during my childhood. My sister and I had the whooping cough and saw a doctor then. I saw a doctor for a spider bite around age 12 or 13.

 

Anyway, a few months ago, I started Cymbalta because I got so depressed and distraught over my daughter's "bipolar" condition and the every day rages, etc. With my initial intake with the counselor, he asked me if I have any obsessions, compulsions, etc. I almost said "no" but being that I am not a liar, I swallowed my pride and told him about my trich. (So very embarrassing) He asked me if this is something for which I would like to get help. I told him sure. Trichotillomania carries quite a social stigma, and I'm really brave in posting this.

 

I told the counselor that I cannot help but believe that trich could have a dermatologic etiology. He said that the only way to know would be to go to a dermatologist, and if dermatology cannot find anything, then we will deal with it on a psychological level. So I loaded up my bravery, left my pride at home, and drove to a dermatologist an hour away (so as not to meet up with anyone who would know me in case I had to take off my precious hair piece and show my baldness).

 

One of the nurses at the dermatologist's office called me back and took all my personal information. When I told her I was there because of "a hair pulling problem." She just stared at me. Okay, it's embarrassing enough....stop staring at me NURSE LADY! Then she asked me my age, and then hesitated again....then she asked me my maiden name. I thought "What has my maiden name got to do with anything?" But I went ahead and told her. Then she said "I went to school with you!" I kept looking at her, trying to figure out who she was, then I recognized her. OMG! I told her that I drove an hour away to be sure no one knew me, and "here you are." LOL. But she has been wonderful in trying to help me. The dermatologist biopsied my scalp at my request. She assured me it is purely psychological, said I have OCD, and that the biopsy would most likely not show anything. Well, the biopsy did show something, but she says that's not the the cause of my trich. I have psoriasis-form dermatitis and infundibulofolliculitis (inflammation of the upper part of the hair follicle where it pierces through the skin). She wanted to put me on Orap, but it is contraindicated with my Cymbalta and also my flecainide (rhythm regular for Hx of atrial fibrillation). She started insinuating that I have "delusions of parasitosis" because I wondered if there could be a dermatologic etiology for my trich. I nearly died. I don't feel bugs crawling all over me, but I do admit there is a sensation in my scalp immediately before my hand goes to my head. Anyway, since I cannot do the Orap, she said to talk to my counselor and try to come up with something better than Cymbalta. I really feel like my trich has been worse since beginning the Cymbalta a few months ago. I used to go for up to 3 weeks without pulling my hair, but since being on Cymbalta, I do it daily.

 

Can anyone tell me if antibiotics are a cure for trichotillomania since it is thought to be another PANDA condition? Could I be an "old" PANDAS victim?

[tpotter]

[Yes, it definitely can be related to strep.

[~Red Head~]

So, could I be treated with a strong antibiotic and those urges completely go away?

 

[Yes, it definitely can be related to strep.

[Fixit]

Okay. Here I am again, but with a different, yet same, subject....PANDAS, only this time it's related to trichotillomania. I have a hard time discussing this with anyone and have never discussed it until just recently when I was in counseling over my "bipolar" daughter. I have suffered from trichotillomania since age 11. I've read that PANDAS could be the cause of this also. I am now 52, and I have yet to conquer this. I remember having sore throats here and there as a child, but we just didn't go to the doctor much at all. I have very few recollections of ever going to a doctor during my childhood. My sister and I had the whooping cough and saw a doctor then. I saw a doctor for a spider bite around age 12 or 13.

 

Anyway, a few months ago, I started Cymbalta because I got so depressed and distraught over my daughter's "bipolar" condition and the every day rages, etc. With my initial intake with the counselor, he asked me if I have any obsessions, compulsions, etc. I almost said "no" but being that I am not a liar, I swallowed my pride and told him about my trich. (So very embarrassing) He asked me if this is something for which I would like to get help. I told him sure. Trichotillomania carries quite a social stigma, and I'm really brave in posting this.

 

I told the counselor that I cannot help but believe that trich could have a dermatologic etiology. He said that the only way to know would be to go to a dermatologist, and if dermatology cannot find anything, then we will deal with it on a psychological level. So I loaded up my bravery, left my pride at home, and drove to a dermatologist an hour away (so as not to meet up with anyone who would know me in case I had to take off my precious hair piece and show my baldness).

 

One of the nurses at the dermatologist's office called me back and took all my personal information. When I told her I was there because of "a hair pulling problem." She just stared at me. Okay, it's embarrassing enough....stop staring at me NURSE LADY! Then she asked me my age, and then hesitated again....then she asked me my maiden name. I thought "What has my maiden name got to do with anything?" But I went ahead and told her. Then she said "I went to school with you!" I kept looking at her, trying to figure out who she was, then I recognized her. OMG! I told her that I drove an hour away to be sure no one knew me, and "here you are." LOL. But she has been wonderful in trying to help me. The dermatologist biopsied my scalp at my request. She assured me it is purely psychological, said I have OCD, and that the biopsy would most likely not show anything. Well, the biopsy did show something, but she says that's not the the cause of my trich. I have psoriasis-form dermatitis and infundibulofolliculitis (inflammation of the upper part of the hair follicle where it pierces through the skin). She wanted to put me on Orap, but it is contraindicated with my Cymbalta and also my flecainide (rhythm regular for Hx of atrial fibrillation). She started insinuating that I have "delusions of parasitosis" because I wondered if there could be a dermatologic etiology for my trich. I nearly died. I don't feel bugs crawling all over me, but I do admit there is a sensation in my scalp immediately before my hand goes to my head. Anyway, since I cannot do the Orap, she said to talk to my counselor and try to come up with something better than Cymbalta. I really feel like my trich has been worse since beginning the Cymbalta a few months ago. I used to go for up to 3 weeks without pulling my hair, but since being on Cymbalta, I do it daily.

 

Can anyone tell me if antibiotics are a cure for trichotillomania since it is thought to be another PANDA condition? Could I be an "old" PANDAS victim?

 

wrote long story..you are fortunate it got erased

 

in short..yes ds' allergies trigger this...it does feel like it is biting and then feels need to pull...

of course ped rolled eyes at me when i mentioned pandas, trich...but she did prescribe shampoo with selenium..higher dose then selson blue..but maybe you could start there...

she did see his scalp looked scaley..i didnt see it but she did..so maybe its minor...but it was only the last 2 springs...and now it happened just last week or so...sent ds to shower..in the morning of his own fruition....said mom that shampoo realy works....i also started using quercitin that night for allergies..

 

ps..ds has had strep many times...it can be strep induced...step pandas may go away but other things can trigger it

Edited September 9, 2010 by Fixit

[dut]

Hi - you may also want to look at thyroid. I have borderline low thyroid. When I started on thyroid meds my urge to bite my nails until they would bleed (also part of the OCD spectrum and supposedly very similar to trich) just disappeared. And there does appear to be a link between thryroid and some OCD presentations.

 

You could also research the use of n-acetyl-l-cysteine. Some recent studies have shown it to be helpful in reducing trich.

 

Here's an ok link

 

http://ihealthbulletin.com/blog/2009/07/06/n-acetylcysteine-supplement-effective-trichotillomania/

 

Good luck...

[~Red Head~]

Hi there. You're right on track. I do have hypothyroidism. I've been on Synthroid since the 80s. I just had my levels checked, and they were fine. I had a CT scan of my thyroid a couple of years ago, and the radiologist asked me if I had my thyroid removed. I told him no. He said my thyroid has shrunk up so small that he thought I might have had a partial thyroidectomy. About the N-Acetylcysteine, I already asked the dermatologist about that very recently, and she called it in for me. I started taking it, but you have to drink it with Diet Coke, and I rarely keep soda in the house, so I keep forgetting to buy it when I'm shopping. I was supposed to mix 3 mL in a glass of Diet Coke. I suppose I should write it on my grocery list so I will remember to pick it up!

 

Hi - you may also want to look at thyroid. I have borderline low thyroid. When I started on thyroid meds my urge to bite my nails until they would bleed (also part of the OCD spectrum and supposedly very similar to trich) just disappeared. And there does appear to be a link between thryroid and some OCD presentations.

 

You could also research the use of n-acetyl-l-cysteine. Some recent studies have shown it to be helpful in reducing trich.

 

Here's an ok link

 

http://ihealthbulletin.com/blog/2009/07/06/n-acetylcysteine-supplement-effective-trichotillomania/

 

Good luck...

[~Red Head~]

Long story....from a long-winded lady. Sorry!

 

Okay. Here I am again, but with a different, yet same, subject....PANDAS, only this time it's related to trichotillomania. I have a hard time discussing this with anyone and have never discussed it until just recently when I was in counseling over my "bipolar" daughter. I have suffered from trichotillomania since age 11. I've read that PANDAS could be the cause of this also. I am now 52, and I have yet to conquer this. I remember having sore throats here and there as a child, but we just didn't go to the doctor much at all. I have very few recollections of ever going to a doctor during my childhood. My sister and I had the whooping cough and saw a doctor then. I saw a doctor for a spider bite around age 12 or 13.

 

Anyway, a few months ago, I started Cymbalta because I got so depressed and distraught over my daughter's "bipolar" condition and the every day rages, etc. With my initial intake with the counselor, he asked me if I have any obsessions, compulsions, etc. I almost said "no" but being that I am not a liar, I swallowed my pride and told him about my trich. (So very embarrassing) He asked me if this is something for which I would like to get help. I told him sure. Trichotillomania carries quite a social stigma, and I'm really brave in posting this.

 

I told the counselor that I cannot help but believe that trich could have a dermatologic etiology. He said that the only way to know would be to go to a dermatologist, and if dermatology cannot find anything, then we will deal with it on a psychological level. So I loaded up my bravery, left my pride at home, and drove to a dermatologist an hour away (so as not to meet up with anyone who would know me in case I had to take off my precious hair piece and show my baldness).

 

One of the nurses at the dermatologist's office called me back and took all my personal information. When I told her I was there because of "a hair pulling problem." She just stared at me. Okay, it's embarrassing enough....stop staring at me NURSE LADY! Then she asked me my age, and then hesitated again....then she asked me my maiden name. I thought "What has my maiden name got to do with anything?" But I went ahead and told her. Then she said "I went to school with you!" I kept looking at her, trying to figure out who she was, then I recognized her. OMG! I told her that I drove an hour away to be sure no one knew me, and "here you are." LOL. But she has been wonderful in trying to help me. The dermatologist biopsied my scalp at my request. She assured me it is purely psychological, said I have OCD, and that the biopsy would most likely not show anything. Well, the biopsy did show something, but she says that's not the the cause of my trich. I have psoriasis-form dermatitis and infundibulofolliculitis (inflammation of the upper part of the hair follicle where it pierces through the skin). She wanted to put me on Orap, but it is contraindicated with my Cymbalta and also my flecainide (rhythm regular for Hx of atrial fibrillation). She started insinuating that I have "delusions of parasitosis" because I wondered if there could be a dermatologic etiology for my trich. I nearly died. I don't feel bugs crawling all over me, but I do admit there is a sensation in my scalp immediately before my hand goes to my head. Anyway, since I cannot do the Orap, she said to talk to my counselor and try to come up with something better than Cymbalta. I really feel like my trich has been worse since beginning the Cymbalta a few months ago. I used to go for up to 3 weeks without pulling my hair, but since being on Cymbalta, I do it daily.

 

Can anyone tell me if antibiotics are a cure for trichotillomania since it is thought to be another PANDA condition? Could I be an "old" PANDAS victim?

 

wrote long story..you are fortunate it got erased

 

in short..yes ds' allergies trigger this...it does feel like it is biting and then feels need to pull...

of course ped rolled eyes at me when i mentioned pandas, trich...but she did prescribe shampoo with selenium..higher dose then selson blue..but maybe you could start there...

she did see his scalp looked scaley..i didnt see it but she did..so maybe its minor...but it was only the last 2 springs...and now it happened just last week or so...sent ds to shower..in the morning of his own fruition....said mom that shampoo realy works....i also started using quercitin that night for allergies..

 

ps..ds has had strep many times...it can be strep induced...step pandas may go away but other things can trigger it

[dut]

Hi - you'll have to excuse my ingnorance but is synthroid T4 and T3. I use levoxyl for the T4 bit and cytomel for the T3 and it's the cytomel that really seemed to help the biting.. I started it first and when I stopped the cytomel for a bit my energy levels felt ok but some "gloom" came back......

[MomWithOCDSon]

As trich is believed to be related to/a subset of OCD, it certainly seems yours could be strep related. Having dealt with it for as many years as you have, however, I wouldn't want to tell you that taking an antibiotic may completely eliminate your hair-pulling behaviors. First, as someone else said, if your immune system is now out of whack, another infection could trigger you, not just strep. Secondly, OCD behaviors can become "learned," or create some significant neural pathways of their own over time, so in addition to medical treatment (possibly antibiotics, anti-inflammatories, supplements), you might want to look into Exposure Response Prevention (ERP) and/or Cognitive Behavior Therapy (CBT) to help retrain your brain in terms of how it responds to stress/anxiety.

 

As for NAC, I'm puzzled about the whole mixing it in Coke thing. Never heard of that!

 

We buy NAC at the Vitamin Shoppe, in 500 mg. capsules, completely over the counter. We take it like any other supplement. Am I missing something on my end?

[EmersonAilidh]

Hi there!

I don't have as much medical knowledge as these guys, but I've been dealing with Trich for about a year & a half now. I know exactly what you mean about feeling something on your head before you pull! Moreso for me though, when I've been pulling & pulling & pulling my hands HURT if I try to stop. It's as if they're only not in pain when I have them on top of my head, ready to pull. By April of this past year, my friends described my bald spot as "something Dr. Phil would be proud of". It wasn't THAT bad, but it was definitely noticeable. & lemme tell ya.. Having a bald spot your freshman year of high school does not make you any friends. After a picture was taken of me & my friend in Santa Fe last spring where I saw my bald spot before I saw my face, I stopped pulling from the top of my head. Although it has gotten better it, along with my OCD (are they just one & the same?), continue to rage on.

Also, my thyroid has been tested up & down time & again for years & years now, always totally normal. My aunt has Hashimoto's though, if that means anything? Just throwing out thyroid-related information as it pertains to me, hah.

 

Whatever it is, it will get better! You'll be in my thoughts & prayers. I haven't seen you post yet, sooo... Welcome to the forum! <3

[~Red Head~]

Thank you. I just joined this forum today. I first posted about my daughter being bipolar and with a history of multiple strep infections and ultimately rheumatic fever. Then I got brave and shared my trich disorder. Hey, I'm almost totally bald on top. Dr. Phil would be prouder of my head! I wear a hair piece to cover it up. And I wear fake lashes on top. There is a skinny twig of bangs right in the middle of my forehead and a narrow strip of hair right where a middle part should be. It looks like my left brain and right brain. Reminds me of a dermatome pattern. I pull my upper lashes out, but not my lowers. Is that not crazy as H. E. L. L.? I asked my dermatologist "If it's just a hair pulling urge, why don't I pull the rest of my hair out, because there's plenty more on the rest of my head, and why don't I pull out my lower lashes?" She replied "Because people just fixate on a certain area." Okay??? The thing of it is, I don't get those "sensations" that draw my hand to my head or my upper eyelashes anywhere else but on top of my scalp and my upper eyelashes. If I had those sensations elsewhere, I believe I would pull from there too. You really cannot understand that 'sensation' unless you suffer from trich. It's hard to explain that sensation, but the psychiatrists all think it's an overwhelming sensation that takes over your mind like pyromania or kleptomania. IT'S NOT IN MY MIND, FOLKS; IT'S IN MY SCALP. TRUST ME. I KNOW MY OWN SCALP. I wrote a poem in 2000 and entered it into a poetry contest. Much to my astonishment, the International Library of Poetry published it in one of their many poetry books called "The Colors Of Life." And I will share...

 

Friend or Foe?

 

We've been together for so many years,

I've shared my laughter and my tears.

You've been the dearest friend to me,

And yet, you are my worst enemy.

 

Like an addict who struggles to be free,

Like a blind man who hopes to someday see.

I grasp at the hope to someday be free

From this insatiable hold you have on me.

 

You allege to be my strength and comfort

And take away all the pain.

And yet, you betray me day after day.

You've caused me so much hurt and shame.

 

Who are you? What are you?

Why can't I let you go?

I search to know the answer,

Are you my friend or foe?

 

 

 

Hi there!

I don't have as much medical knowledge as these guys, but I've been dealing with Trich for about a year & a half now. I know exactly what you mean about feeling something on your head before you pull! Moreso for me though, when I've been pulling & pulling & pulling my hands HURT if I try to stop. It's as if they're only not in pain when I have them on top of my head, ready to pull. By April of this past year, my friends described my bald spot as "something Dr. Phil would be proud of". It wasn't THAT bad, but it was definitely noticeable. & lemme tell ya.. Having a bald spot your freshman year of high school does not make you any friends. After a picture was taken of me & my friend in Santa Fe last spring where I saw my bald spot before I saw my face, I stopped pulling from the top of my head. Although it has gotten better it, along with my OCD (are they just one & the same?), continue to rage on.

Also, my thyroid has been tested up & down time & again for years & years now, always totally normal. My aunt has Hashimoto's though, if that means anything? Just throwing out thyroid-related information as it pertains to me, hah.

 

Whatever it is, it will get better! You'll be in my thoughts & prayers. I haven't seen you post yet, sooo... Welcome to the forum! <3

[matis_mom]

Read Head,

Psoriasis is also autoimmune AND related to strep! If you do a google search under "psoriasis autoimmune strep" you'll be surprised. I cannot find the article now, but I read about a study where they tested persons whose psoriasis was flaring, and large percentage of them tested positive for strep. Now I had never heard of this until a few months ago. We are trying to figure out why we keep getting strep here. My husband has psoriasis and every now and then his face looks all read and puffy and he looks ten years older! It hasn't happend again since I found this out, but I'll be sure to send him to the doc next time it happens.

Wouldn't it be something if by trying to get help for your daughter you also find help for yourself! Amazing what mothers will do for their children, but sometimes neglect themselves. I've been to the doctor more often than ever before to try to figure out our strep situation.

Hope you find some answers soon!

Isabel

Edited September 10, 2010 by mati's mom

[matis_mom]

Here is something...

 

Psoriasis is a T-cell-mediated disease that can be triggered by infection with group A beta-haemolytic streptococci. It is proposed that psoriatic skin lesions are initiated by exotoxin-activated T cells, and persist because of specific T cells that react both with streptococcal M protein and a skin determinant, possibly a variant of keratin. As discussed here by Helgi Valdimarsson and colleagues, cytokines released by the superantigen (SAg)-stimulated T cells could induce or enhance the expression of the crossreactive autoantigen, leading to the rescue and activation of autoreactive T cells. In this way, the SAg-determined T-cell receptor V beta phenotype would be maintained by T cells in psoriatic lesions.

 

http://www.ncbi.nlm.nih.gov/pubmed/7718088

[EmersonAilidh]

Red Head ~ OH. MY. GOD. I've never talked to anyone with Trich before but I seriously do the exact same thing. My top eyelashes are all but extinct, while my bottom ones are fully intact. I started wearing false lashes about seven or so months ago. Also, wearing the false lashes helps me not to pull. I've posted about it before but one of my biggest OCD symptoms is the guilt I feel when people spend money on me. To the point where I have cried when someone bought me a movie ticket. ANYWAY. If I have false lashes on the sadness of thinking of my Mom having to buy another pair greatly outweighs the urge to pull.

My eyebrows disappeared about a year ago. There's still a little bit there, some sad shell of the thick, beautiful ones I used to have before trich stole them away from me. I've taken to drawing those on. You can imagine how long it takes me to get ready in the morning between the false lashes, drawing on my brows, & putting in all of my extensions.

For me, Trich is just another facet of Obsessive Compulsive Disorder. I know that there's nothing wrong with my scalp, eyelashes, or eyebrows. They're perfectly fine. I just HAVE to pull them out. My hands hurt if I don't.

 

It's so great to hear from someone else who deals with this!!!

[Fixit]

Sorry i wasn't talking about you...

i was saying i wrote a long winded story...

i forgot the I