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I have trichotillomania and I'm in utter despair with myself

(26 Posts)
CantStopPulling Fri 07-Oct-11 23:47:32

I pull out my eyelashes and have done so for almost 20 years. Sometimes it eases and I don't pull as much and they grow back enough to enable me to only wear mascara. However its so bad right now that I have hardly any lashes and I'm having to wear eyeliner in an attempt to disguise all the gaps.

I hate what I do and I hate myself for doing it. I feel ashamed and disgusted with myself. I tend to pull more when I'm stressed, upset, bored or tired but I generally pull most days. I want to stop but can't do it by myself (I've tried and failed so many times) but I'm scared to seek medical help in case they think I'm a freak, or don't even know what it is. I know if I go to my GP it will be on my notes forever. No one irl knows I do this (or if they've noticed it's not been mentioned). I fucking hate this and am at a loss of what to do.

Please help.

tryingabitharder Fri 07-Oct-11 23:54:39

Hey CSP, I know how you feel. I was thinking about posting something similar tonight. I've been pulling non-stop for the last 4 days (I pull the hair on my head) and have massive bald patches joining up all over the place. More nanogen than hair, at the moment.

It sounds like you know pulling fairly well, what have you tried before? I've been pulling about 25ish years too, although I've had some great pull-free periods within that.

I have heaps of ideas, but I want to post this asap so you know you are not alone with this. And, shhhh, but ((((hugs))))

<waits to get kicked off MN for being fluffy>

tryingabitharder Sat 08-Oct-11 00:02:04

Ok, so practical stuff.

Your GP might know fuck all about trich, or might be really interested in it. In reality they'll probably be somewhere in the middle, and you won't know until you mention it. It's worth a try though, and what harm might come of it being in your notes? I saw some research recently that reckoned about 5% of the population have it, and that it's a genetic pre-disposition. Much more common than you think. because we all hide it so well (up to that point where it gets obvious....)

I've had my best successes using online support and coaching, with some meditation / hypnotherapy CDs and better understanding of my triggers. I'm happy to share as much of that info with you as you like, it will benefit us both I'm sure if I remind myself what's possible smile

tryingabitharder Sat 08-Oct-11 01:07:57

I'm off to bed now, but these are my most favourite people at helping others become pull-free. Lovely forum, good resources, not a commercial thought between them here

Please don't hate yourself. It's just a thing that lots of us do, it looks a bit rubbish sometimes and it's less socially acceptable than biting your nails, although similar as habits go, but that's all. And the people I've met who have trich tend to be really hard on themselves but very thoughtful and caring towards everyone else, and very much appreciated by their friends as a result.

Hope it helps. brew

CantStopPulling Sat 08-Oct-11 16:32:11

Hi trying thanks for your replies. I didn't think I'd get any responses as it's not a common-or-garden condition that people have heard of, so just went to bed as soon as I'd posted.
I've tried all sorts of coping strategies to stop pulling but the longest I've been pull free was for just under 2 months when I was having online therapy about 4 or 5 years ago. Funnily enough I was having therapy with Neomie via that site you linked to - small world! I had about 18 months of therapy in total but had to stop as I just couldn't afford it any longer. Plus I felt it wasn't working, which made me feel a failure because they pride themselves on having a high success rate. Think I need to start posting on there again. I'm LilacAqua on there, what's your username if you don't mind me asking?

Because the therapy wasn't successful and I can't control it by myself, I was considering asking a GP for some form of medication to help me break the habit. Have you ever tried that? I'm just in such a bad place with it right now that I need to do something and don't know where to turn sad.

tryingabitharder Sat 08-Oct-11 21:19:02

Hi CSP, how are you doing today?

I had coaching with Neo too, snap! smile I'm Ferarri on there (was a bit of an F1 fan back in the pre-motherhood days, although not enough of a fan to spell it right!) but I'm a real lurker on there, I rarely post. Maybe we should jump back into it together....... I love mumsnet but when I'm a bit vulnerable, like now, the sad and dark stories stay with me a bit too much. They wouldn't want you to drop out to protect their success rates, I'm sure, but I had to give up because I was skint too. It's changed a bit, I think. Jaya manages it now, although Neo still coaches too.

I'm maybe a bit rose-tinted about the coaching, because I've learned a lot of the same stuff that they were trying to teach me through a proper, couch and everything, pyschotherapist that I've been seeing for the last couple of years (!! can't believe it's been that long..........don't think about the cost, trying......) following a pretty major breakdown I had in 2009, all depressed and burnt out and suicidal and stuff. Which also led to a hefty dose of ADs, which I'm in the process of coming off, albeit slowly, so I can ttc. Oh and I had to quit my job, and stuff, and now I'm better I'm going freelance and my first project is due on Monday and that's why I'm online so much this weekend procrastinating

The distilled version of what I've learned is pretty much:
- I've always been a bit shit at looking after myself, physically and mentally
- our emotions, thoughts and physical self are totally interlinked (stomach pain when stressed, etc)
- emotion can't be consciously (?sp) controlled
- you can learn to hear your thoughts, and challenge them, but it's hard
- keeping your physical self well is the easiest way to improve emotions

which is why the Neovision coaching focusses on self care, and what you eat, and how well you sleep etc.

For me, although it seems daft when I say it, the self care stuff makes all the difference. My urges are way lower when I get enough sleep, have a bath, just do something I actually want to do and wilfully ignore things I feel I should do, like mop the floor.

The biggest difference for me has been taking up yoga. I think the 'holding your mind steady' thing really helps train my brain away from that numb or stressed state that leads to pulling.

Also, do you have any 'danger places'? I pull more in front of the TV, pc, when driving or on the loo (gross I know). So when I'm trying to be good to myself and not being wilfully self-destructive I jump straight off the loo asap, avoid using the pc, and I've taken up knitting for in front of the TV. Which is fab and works brilliantly, actually. The feel of the yarn and the repetition of action is a great substitute for me.

Physical barriers are good to get over the first few hours and days until the urges start to go away (which they do after about 3 weeks, iirc). I've been wearing a kind of crazy turban all day today, I look shite but I've been working on the fucking scary first ever freelance report all day so needed to do something drastic. Sometimes I put a deep conditioner on my hair all day long to make it too slippy to get a grip - Lush ultrabland might work well on eyelashes to do similar? Do you wear specs? If not, there are lots of plain glass fashion ones around right now - might just get in the way of your hand enoug to help you twig what you're doing and give you a chance to choose not to that time?

Lastly, I find sticker charts work (better for me than DS, even) and a coded system of different coloured dots on the calendar (for an hour pf, half day pf, full day pf) really encourages me [shallow emoticon]

Well, erm, sorry about the life story blush just realised this is pretty long grin

Toughasoldboots Sat 08-Oct-11 21:36:52

No advice but I wanted to offer sympathy. My little dd does it, it breaks my heart, I have been offered medication but only through private psych.
I think I am going to try it for her, very much fearing the teenage years ahead.

I have been told that it is form of OCD and she can't help it.

tryingabitharder Sat 08-Oct-11 22:06:35

How old is your dd, Toughas? I think I was about 7 when I started. Children can sometimes grow past it, I believe, and there are some excellent extension systems that you can have woven over bald areas, if she pulls from her head, when she gets a bit older. Great as a barrier and to make you feel / look normal, and motivation to help stop the pulling.

It's true that we can't help it, and it's like an OCD, afaik, but not exactly the same pathology.

I have an excellent book, 'The Hair Pulling Problem' by Fred Penzel. Getting a bit old now, I expect, but at the time it was a brilliant resource about different treatments and what was known about how it all works in the brain.

Regarding medication, I think they use ADs? I'm on Anafril as an AD, after escitalopram didn't really work for my depression. I think it's one they use with OCD, and I think my trich is one of the reasons I was switched to it as a general AD, but it was a third resort after 2 SSSRIs and the GP was a bit shock when the letter from the nhs psych came back recommending it. I can't remember how it affected my pulling when the dose was high but it's certainly not preventing me atm!! But what I clearly remember, and have been reminded about every time I've stepped the dosage down or missed a day by accident, are the fucking awful side effects. Crushing headaches, weight gain, dry mouth, heartburn, but mainly the headaches - they even stop me sleeping. So for me, I'll always see drugs as a last resort.

Hynotherapy to train my hands away from my head, yoga and meditation to help me past the urges and physical barriers and replacement activities have worked for me before, just not right now.........sad

Toughasoldboots Sat 08-Oct-11 22:13:26

She is 8 trying. She never pulls her head hair, it is her eyelashes and leg/arm hair.

The lack of eyelashes make her unrecognizeable to the child she was.
I tried to get her referred to the research program at the maudsley hospital but had no luck.
I have taken on board what you said about side effects, I will maybe wait a bit longer.

Going to try and get that book- thanks for help. Sorry, this was meant to be about helping you.

tryingabitharder Sat 08-Oct-11 22:33:54

No it wasn't about me, believe it or not, can'tstop is the OP, I'm just a chatterbox (and a bit of a procrastinator....) grin

Sorry I didn't mean to sound heavy on the drugs, I'd never want to lecture and it really depends on how she feels about herself if they are right for her, eg if she's totally desparate / it's stopping her having a life they may be worth it, just wanted to share how bloody scary they are to take.

Poor wee soul, I remember it well. Have a look at that website further up the thread, they have a forum for parents and another for children, I think.

Some other stuff that works...I used to keep little tubs of 'fiddly' toys around to keep my hand busy (putty etc) and loadsa handcream and / or cotton gloves might work well at home as a physical barrier? Plus mega rewards and praise for pull-free hours and days. Weekly photos to see the improvements. There are some vitamins that can help with the urges (wish I could remember which) and avoiding some foods helps some people - eg I cannot eat / drink anything with aspartame, it makes my head prickle and gives me dreadful pulling urges. Some people find the same with sugar.

Toughasoldboots Sat 08-Oct-11 22:42:00

Yes, I tried fiddle toys , trying to keep to low sugar. I found her diary the other day and it says that she is ugly because she has no lashes.
Breaks my heart, if I try to look at her eyes, she hangs her head or runs off.
Thanks for advice, I will stop hijacking from op- sorry!

purpleknittingmum Sat 08-Oct-11 23:00:24

My daughter started pulling her hair out from the top of her head and we have no idea how to help her. We took her to the doctor, she said to speak with the school nurse, good job we didn't go at the start of the holidays then!

School nurse gave her a worry stone and she is allowed to have a tangle toy in class. She also said doing knitting kind of helped keep her hands busy, but she doesn't seem to use them now. I have tried to ask her what started her off doing it etc.

I am heading off to bed now but will come back, sympathy to all going through it

purpleknittingmum Sat 08-Oct-11 23:04:56

Forgot to say how old my daughter is, she is 14

tryingabitharder Sun 09-Oct-11 03:56:54

Hi purpleknittingmum, I can only imagine how awful it must feel to see your dd do this to herself.

From what I remember, being asked about it was pretty crap (and still is, except now it's DH and not my mum nagging gently enquiring) so although you'll be desparate to know, try to help her by finding out about trich together and what you can do about it, and the reason might come out along the way.

She might have no idea what started her off, or she might just not want to talk about it. For me, and for lots of people, it was a curly hair with a weird texture that I had to find over and over, and then I had to take it out to look at it. And it started from there. It's oddly soothing, even though you hate yourself fractions of a second later. For some people it's as small as that. I read somewhere that people with trich have a chemical inability to self-regulate, and pulling when we are over or under stimulated fills that gap. I know it takes a bloody massive effort to stop. It's been likened to being an alcoholic with a bottle of whisky strapped to your head all the time.

For me there were deeper issues of self-esteem and control (emotionally tough childhood) that I think played a part too. It's somewhere between an OCD and self harm.

There are loads of resources online now for you both. One thing I've not mentioned before as it's only really relevant to scalp pullers is nanogen. Have a look at it online, you can buy it in larger Boots stores now. Basically makeup for scalp / hair, and it works really really well. Might take the pressure off a bit if your dd is feeling self conscious. If she is too thin on top for that then look into the weave systems...

I'm off to bed too, just have 80% of my report to write by this time tomorrow after the first 20% took all day today.....confused

purpleknittingmum Sun 09-Oct-11 08:32:24

Thanks for that tryingabit harder. I think she has mentioned before she started it when she was really angry (probably with me, she has major attitude issues!) and now does it when she doesn't even realise.

I realise she is sensitive about it, he hair on the top looks a bit spikey where it is shorter from it growing back in. Yesterday it looked a bit noticable and I very gently kind of pointed it out and asked if she had something to smooth it down at all, and she went i a bit of a strop. We did manage to have a bit of a chat, I pointed out that when we/I try to help, she pushes it away. She said she is going to speak with the school nurse again. She doesn't yet have a bald patch

kazmus Sun 09-Oct-11 09:03:17

can I just say that I am so pleased to see this problem being talked about. I am 54 and have done this since the age of 6. I used to pull the hair from the top of my head so much that it looked like a monks crown. I also pulled out all the eyelashes and eyebrows. I have never plucked my eyesbrows as an adult as the fear is still there that once I start I will never stop. The area of hair that i constantly pulled out as a child turned white in the 9 weeks my daughter spent in intensive care when I was 36. My family never sought to find reasons, just called me Miss Piggy when I lost all my eyelashes and eyebrows. I will still pull at my hair and not realise I am doing it. It was only when my dd died last year and I had counselling that these issues also surfaced. There were painful issues brought to light from early childhood that may well have been a trigger....only now do I fully understand that even at an early age I was hiding issues as they would not have been believed or understood by others. I wish all sufferers peace from this torment.

Toughasoldboots Sun 09-Oct-11 12:31:28

So sorry about your daughter Kazmus . I think dd looks like a little piglet with her sore, red eyes but would never say that to her. I hope life has got a bit better for you in the last few years .

tryingabitharder Sun 09-Oct-11 12:34:45

Oh kazmus how awful for you sad It really must the worst thing that can happen, losing your DC.

I know that finding out just how common it really is was a bit turning point for me, and I hope that some of the ideas on here can add to your counselling to help somehow.

I was procrastinating reading a blog last night (about procrastination of self-employeds blush) which made me think a bit. The woman was saying how she gets RSI, but treats it like a warning sign and thinks of it as a signpost that she's not done enough to look after herself that day.

I've been trying to think of my trich as a 'helpful warning' all day, i.e. when I want to pull, what's actually up? Do I need a drink / something to eat / to think about something different / to get off my arse and move around / to be somehow kind to myself etc. So far so good smile and that, plus talking about it on here, has got me through 4 hours without even touching my hair today grin yipeeeee

Selks Sun 09-Oct-11 12:41:11

Please, anyone with a child or adolescent who is hair pulling and for who it is getting to be quite a problem, do speak to your GP and request a referral to your local CAMHS (Child and Adolescent Mental Health Service) or to your local Child Psychology service. They will have experience in helping young people with trichotillomania, and will help the young person to feel less of a 'freak' about it and to find ways to cure it. GPs might be at a bit of a loss as to what to do to help, but generally speaking these services will not.
For adults, I would recommend speaking to the GP and requesting referral to adult psychology. There is help out there, and it has every chance of working.

Tortoiseonthehalfshell Sun 09-Oct-11 12:49:39

Hey, I have this, and apart from some unsuccessful hypnotherapy at around 13, have never really done anything about it. I pull eyebrows, eyelashes and head hair. I'm also a chronic nail biter, and both of my parents have lower-level anxiety/fidgeting habits, so I come by it honestly. It's worse when I'm PMS-y, and this pregnancy has been really, really bad for it.

This is probably no help for younger children, but I did want to tell the one thing I found helped for a long time - false nails. I got them originally, just really short natural-looking ones, because my fingers were so bitten down, but I have discovered that they remove a lot of the tactile pleasure from the pulling, so it cut down a LOT. Over the years it's lost a lot of its helpful impact, but if you're less severe than I am, it's worth trying. Yes, I know false nails are 'tacky'. They don't need to be purple talons to work, though - mine look almost indistinguishable from real.

purpleknittingmum Sun 09-Oct-11 15:30:45

I think we will have to take our daughter to the doctor again, can't believe her response was to speak with the school nurse

For a number of years I have wondered if my daughter had some form of OCD as she can be so particular, but if I had gone to the doctors and mentioned the incidents that had happened, I expect I would have been laughed out of the surgery. I went when she was about 7 for some sort of help as that is when I was really starting to struggle in dealing with her. The doctor just said, 'you are an intelligent woman, you are working (can't quite remember what he said about my work!) so you should be able to deal with a 7 year old child' I was in tears saying 'well I can't!' This seems to be how it is coming out for her. We had a wee chat this morning, which was good

tryingabitharder Sun 09-Oct-11 19:45:02

Some GPs are just a bit pish at some things. Some don't believe in mental health issues. I had one who didn't think pregnant women should set foot in a surgery, we should just work it out in isolation. And he was a dad, ffs. I guess they are only human too.

You know you can always ask to see another GP if the first one is uselss / unsympathetic / dismissive. Plus, Selks sounds like she really knows what she is talking about, listen to her. The GP probably filed it under 'adolescent stress = school nurse', without considering it a proper condition.

And it's not something you've caused, btw. She just has trich. And you sound like you really want to help her, which is fab. I always felt like my mum was irritated or embarassed or both, which just played to my feelings of worthlessness. When I started doing well at school, getting into amdram and guiding and stuff and basically recovering a sense of worth I got a lot better. Still did it though....

purpleknittingmum Sun 09-Oct-11 20:07:24

We have only been going to this doctor for about a year as we moved. I have seen this doctor myself and find her OK, but my OH has taken our daughter twice and it is as though she doesn't like kids! She has her own that are grown up now. When she went as the PE teachers thought she had asthma, she said she needs to do more exercise, and it wasn't asthma! Turned out it was! Thing is the doctors are merging with another practise so might wait until that is done so she doesn't have start again with another doctor

Not sure if my daughter will be able to actually speak with the nurse tomorrow or arrange an appointment with her tomorrow. I sometimes do wonder if I have added to her stress, we argue more than she does with my OH, but has seemed to have even up the last year or so.

sorry, don't want to be taking over this thread!

CantStopPulling Mon 10-Oct-11 13:43:51

Wow, this thread has really moved on since I first posted! And to think I thought I'd never get any responses...

There are some good suggestions on here but I've tried a lot of them. Knitting sounds a good one but I can't knit! Maybe I could find a similar hobby I can do at night in front of the TV because that's a tipping point for me. I kind of zone out and before I know it, half a dozen lashes are in my hand sad. I pulled a couple on Saturday but after that I decided that enough was enough, and yesterday I was pull free. It's weird because I don't even think about it at work or when I'm with the DC, it's just when I'm alone in the evening watching TV, on the computer or reading. As I'm at work, I'm pull free today so far but I'll have to see how I get on this evening.

Trying, how many people know you have the condition? By that I mean people you've actually spoken to about it, like your DH? I've never spoken to anyone in real life about it at all. People may have noticed, of course, but I've never been asked about it and I've never openly discussed it. I was just wondering what their reaction was when you told them.

I'm still in two minds whether to go to my GP or not. I keep thinking 'this time I can give up', but realistically I've been trying to give up for almost 20 years so the chances of me doing it this time are low.

Think I'll go back on the Trich UK site, so I might see you on there sometimes Ferarri!

purpleknittingmum Thu 13-Oct-11 19:34:12

Well I ended up making an appointment for my daughter at the doctors for this afternoon. It was a locum and apparently she was lovely (OH went with her - I asked my daughter if she wanted me to go with her or her dad and she said she didn't mind)

she is to keep a diary (so obvious, don't know why we didn't think of that!) and she has been given a shampoo as her scalp is a bit flaky (hadn't noticed that) and is going back next week. After that I think she will be referred to the CAHMS people

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