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Permalink Reply by Carol on November 26, 2008 at 3:29pm

Hi Karen,
Although I wouldn't be very helpful in telling you which treatments do or don't work, I don't think you are wrong by believing your doctor if he told you that there's nothing you can do or try. I mean, there are things you can do or try but your doctor, whether in his wisdom or ignorance, did you a favour, quite honestly, by telling you so.
The effects of treatments MAY be coincidental (they just look like they're working cause the hair decided on it's own to grow back at that time). If not coincidental then the effects of the treatment usually wear out when you cease treatments. Really it prolongs any suffering and provides people with a false sense of hope. Those who are desperately hoping to regain "normalcy" will put anything on their heads only to discover they have wasted their time and money. The best thing to do is learn how to cope with it.

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Permalink Reply by Karen on November 26, 2008 at 4:12pm

Thanks Carol - I totally agree with youe. To be quite honest I think I'm OK with this AA thing now, although I'd like to get to a point where I can fully move on eg: all my hair completely fall out or at least stop where it's at now. I think what really gets to me is everyone's well meaning help. I kinda fell if I'm doing nothing that I'm dismissing their input and advice, which I feel is being rude. How do I tell people politely to stop trying to help me?

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Permalink Reply by Carol on November 26, 2008 at 7:17pm

It never hurts to listen to anyone's suggestions - we have two ears and one mouth so that we may listen twice as much as we speak (or watch cause we have two eyes as well). It is always up to you whether you want to act upon their "wisdom" or not. I like to tell people "I'll keep that in mind" or "thank you for pointing that out" and move on. If you don't resist it will desist! :)

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Permalink Reply by Christine on November 27, 2008 at 12:34am

I feel the exact same way. My parents are wonderful and I love them for all their suggestions, but I'm tired of trying EVERYTHING. Today for example I told my dad I didn't want to try something and he told me to "stop complaining". I know he didn't mean it and he's frustrated by me not wanting to try everything til I find a cure. I just find it gets my hopes up and it prevents me from moving on and accepting my alopecia.

I did try nioxin, but I honestly can't say whether it worked or not. I was trying a lot of things at that time: iron, multi vitamin, less stress, more sleep, less processed foods, etc.

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Permalink Reply by Lori on November 27, 2008 at 3:36am

Let's see...did the cremes and gels of cortisone, (waste of time and money) did the cortisone injections for a year...hair grew out one inch then fell out (another waste of time and hope) did the detox, did the vitamin regiment, did the immune boosters, did the nioxin, did the Bumble & Bumble products, was told rogaine would cause facial hair; not hair on the head, basically go to the point I was wasting money on "miracle in a bottle" and learned to live with being bald.

Karen, you've got to do what you've got to do. Sometimes these alternatives work and sometimes they don't, go into with a mind set that this may or may not work and I have to accept the outcome and you'll be fine.

Good Luck!

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Permalink Reply by MJ on November 27, 2008 at 6:16am

My doctor gave me "Advantan" cream. No idea what it is for other than to put on my head where the hair falls out...

I have noticed though, when it is falling out and gets all itchy (itching can last for a couple of hours) the cream will cut the itching out quite quickly.. the hair still falls out, but it soothes the horrid pain/itch enough for me not to worry to much about it.

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Permalink Reply by Alexandra Rinderer on November 27, 2008 at 1:37pm

Right, the obsession with finding something that will "cure" this feels like a waste of energy to me right now. I'm more interested in accepting myself and hoping that others will accept me the way I am as well. I don't mind trying stuff, but I'm not going to give myself a sense of false hope or get myself into debt over it. I keep emphasizing to people that I'm not sick, and that seems to help as well.

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Permalink Reply by Mukti on November 28, 2008 at 7:52pm

Hi Karen,
It is up to you to decide what you would like to do. I like you had alot of people tell me what to do and to try all these other treatments etc. Well it didn't lead to anywhere but it got to the point where I would just stop listening until they were done talking. I would try to change the subject. It was like a rollercoaster and had me questioning myself...am I not good enough to be in public, is my decision to stop treatment hurting others by and the list goes on and on! But I came to the realization that most people just want to help and when they can't do anything to help so they talk and speak about the few things that they may have heard in passing or something they read! It's up to you take care of yourself and not let it effect you! I know it is easier said than done. Sometimes you do have to be rude to get the other people to understand that it's ok if they can't help. The best thing to do is just hold you head up high and show them that you are fine. Sorry now that feels like I'm telling you what to do. Take care

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