Replies to This Discussion

Permalink Reply by Donna S. on May 8, 2012 at 4:41pm

It's nice to know I'm not alone but wow, this is just torture for me. Since menopause I've been losing about 50% each year (combination of actual hairs & density of each hair). I think this is probably the last year I can "get by" with my own hair. Been to all the doctors; they just don't care. I feel as though I've aged 20 years in the past 5 years. People used to think I was about 32 when I was 53; now....ugh. Besides the vanity part (I'm still a girly girl with clothes, jewelry, shoes, etc) I can't take the itching and the slimy cling-to-my-head feeling. My head is freezing unless the temperature is 78F or above. I just don't know what to do about wigs. I see alot of posts about different types, but how do you all find a place? Do you have local shops or are you ordering online? There is nothing where I am except one place that sells synthetic wigs and they look horrible. Could you all please explain how to go about finding quality wigs. It would be so appreciated!!!!

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Permalink Reply by Chefpam on May 8, 2012 at 4:57pm

Any answers-278 I would take! Mine is uncountable-it's thousands, entire baggies full at a time. The best derms in the world, 6 scalp biopsies, only a telogen effluvium diagnosis!!! I am at my wits end. I mean my words can't describe what I am going through. I know my husband looks at me differently because I was all hair! I have no self esteem now and it is effecting everything. I just wish I could get to the point where I don't care.

Donna, being a girly girl has become my worst curse. I feel the same as you. Finally at a point where I liked my appearance, my career, my life, and now it's all gone and I am very ill. I just don't know that I can't give up, it's not a choice. I just pray that answers will come my way soon...Hugs to all..

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Permalink Reply by Rose Marie' on May 8, 2012 at 6:16pm

Hi

I can empathise with your feelings of anxiety and fear. Hairloss is never an easy thing to deal with as it is often tied up with people's self esteem and self worth. (Even though this shouldn't be the case it is for many)

The way you present yourself to the world is something that you have to decide upon. Whether that be to wear a wig, wear a scarf, wear your own biological hair...the choice has to be made. I so hate to see people stuck in an never ending cycle of self loathing over a condition that should not define them. It is up to the individual to work out the best way forward for them as the reality for most dealing with hairloss is that their is no cure. There are many beautiful ladies here that have been where you are and have moved on to feel good about the decisions they have made. The founder of AW looks beautiful without her hair, other ladies prefer to wear wigs and look great in them.

Counting hairs and focussing on the hairloss 24/7 is understandable but so limiting to the rest of your life. There are better alternatives for you and people and things that will help you make decisions around your hairloss.

I have a feeling you are currently grieving. This can be an ongoing sadness in people's life's but I believe you can and will find things to help.

Seeking help may be a good alternative for you to help you sort out your self image/self esteem etc. Talking to a professional is always a positive step.

Hang in there and do what you need to help yourself move on.

Hugs

Rosy

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Permalink Reply by PoodleHouse on May 9, 2012 at 2:11am

Pam,
First, everything is going to be ok. You will find your way through this, and u will be even stronger for having done so.
I wear Follea, and while it can be pricey depending on what u choose, it is well made and oh so confidence building for me. I wear the Lifestyle, and have a topette, both french top. It looks so real! I am glad to answer any further questions. Hang in there, ok? -PH

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Permalink Reply by Chefpam on May 9, 2012 at 9:37am

Thanks so much ladies. The bad thing is I have had hairloss off and on for many years. This time it got worse in January and hadn't let up. The other thing is we live in the boonies and are very limited. Because my husband has taken me several places and nothing has worked, he thinks nothing will and that I wouldn't be satisfied with anything,so it's a constant argument, and I can't drive myself because of my illness. I know getting one long distance would be impossible. So I am feeling hopeless. I am so sick right now and this is just too much for me. I will research the Freedom wigs and Folleas. Do you girls shave your heads? How o you secure your wig? You have been so kind to me. I have felt so alone with my AS and then the hairloss. So thank you again. I pray to find strength to get through all this.

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Permalink Reply by PoodleHouse on May 9, 2012 at 11:17am

Pam, the first thing I did was invest in some nice baseball caps with a matching shirt. You can even clip in extensions on the underside lip of a baseball cap to get away with your look. I use this for plan b, wear options for taking a break from wig wearing. Now onto the shopping for a wig... I narrowed my choices, simply by cap fit and wanting to keep my secret safe with only me. It had to look real. My insurance helped with one "prosthetic device", so Follea wasn't as costly until my second one. When u feel great in one, u will instantly know. Also, there r so many choices for body, straight, soft movement, natural slight body, wave, curly,etc. I matched my natural hair tendencies. If u pick a stock item, then it is possible that if something happened to yours a reorder could be quick. If u can't find the fit in a stocked item, a mold of your head can be taken with some brands so you can get the fit you want, but at an additional price. Perhaps u already know all this. A good atelier will help u, so find one who carries brands u want to see. I tried many cheaper brands, but they fit horribly, I have a slimmer head than most I guess. On to ur next question of attachment. I do not shave my head, my hair blends in with my Follea well. But then, I am thinning all over and therefore I have a different situation than u do. To shave is a personal decision. I used clips, and only 2 clips. My wig fit that awesome. If u r well advised in a wigs care and take precautions to minimize damage to it, a great quality system will outperform the cheaper systems. Just a lot of random thoughts, really... I understand how u feel. I was frustrated about choices near 4 years ago. I promise, u will feel better once u have some purchased hair that makes u feel like yourself again. The right system will give u your life back. Other than the stress of losing your hair, did u go through anything else stressful leading up to ur hairloss in the last year? Minimizing stress is so important. Find ur inner strength and hang onto it. Remind yourself every day to give thanks for the things u do have. Envision peace, & de-stress - u decide ur future outlook and focus on it. U r important to a lot of people, and important to all of us on AW.

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Permalink Reply by alwaystipa on May 9, 2012 at 7:06pm

Pam,

I’m so sorry that you’re still having such a hard time with your hairloss. Many women have suggested some awesome alternatives for hairloss. However, there is never one perfect solution that will cure everything and bring your natural hair back. We have been dealt an unfortunate hand in life that our hair has decided to part ways with us. But it is not a debilitating situation and so many of us live very happy and full lives just the way we are.

I’m curious though as to what it is that you are looking for in a supplemental hair solution. You mentioned in your original post that you have spent so much money on wigs that didn’t work for you. I know that you posted a picture of yourself back in December of 2010 with a beautiful blonde Flora wig that you purchased. Can I ask what about it didn’t work for you? Maybe that might help to give an idea as to what options would work.

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Permalink Reply by Chefpam on May 10, 2012 at 3:52pm

Thank you. Yes, I understand everyone is different and it's a personal process. I struggle because mine has fallen out and gotten better for over 20 years. This time, it's been since January and went from filling up a baggy after shampooing to every day now. Dr. Berfgeld first told me it was thyroid, then the yeast, now inflammation due to the stress on my body from AS. I think no one will ever know. Yes, the flora was gorgeous, but it is heavy and hot and uncomfortable. It just doesn't feel right. I've worn it a few times and was so self conscious. I just want to be comfortable and able to enjoy myself in outdoor activities, the wind, lying down, etc. I want it to become part of me, if that makes sense. I want something very light and fits me great. (when I got the Flora we drove from Ky to NJ and I didn't get a custom one, I just got one in stock so I would have something-mistake). I want it long, layered, side part to the left with side bangs. I just thought maybe some of the members who had experience, might chime in and say, "been there done, that, these are the most comfortable, most natural, etc. "

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Permalink Reply by alwaystipa on May 10, 2012 at 7:16pm

Pam,
I can understand how different caps can be way more uncomfortable than others. I've wore several different kinds and they each have their positives and negatives. I just came back from a hair consultation with a place earlier this afternoon and they showed me something kind of interesting. Apparently Jon Renau has a virgin European line called Cheveux Femme. But rather than buying one of their stock designs I was told that I could have a 3/4 wig made custom to my specifications. They made a mold of my head using plastic wrap and packing tape. I was told I could have the entire base made from superfine swiss lace and customized density. It is tempting but I want to do more research first. But a whole wig made of superfine swiss with medium light density hair would be super comfy. The wig they showed me was all hand tied and seemed really light weight.

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Permalink Reply by Tallgirl on May 9, 2012 at 11:03pm

Scene-Stealer, Legend, Limelight, Spotlight, Bravo, and I think two or three more by Raquel Welch are all long wigs you might see online. Some sites have discounts right now. The wig shops alway change the names, but I just saw a hairdresser with FPB at my wig store today picking up and modeling one of the above (Limelight? Lace front, long, very naturals but subtle blend of several blonds with darker roots), and it was gorgeous on her! (I was there getting the fried ends trimmed off my late-December wig purchase before the new work project FINALLY starts tomorrow.) The shop owner told her that with her synthetic, to make sure she put the hair in front of her shoulders when leaning against a chair. The buyer acknowledged that she might have to eventually come in to trim off fried ends, too.

I bought a lanolin spray ($14 for a small bottle) to treat my wig (RW: Embrace) and keep "hairs" in place. Experiment! These new memory-cap, heat-resistant synthetics may be in your price range and allow for more style options to own for the price. My memory-cap fits nicely on my head...have you tried one of those?

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Permalink Reply by Chefpam on May 10, 2012 at 3:53pm

I will check those out Tallgirl. Thanks for the tips! ;)

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Permalink Reply by Emory on May 10, 2012 at 9:09pm

Hi Pam,

I wear a custom lace front wig. The hair is long and European and the wig cap is very light weight and since it's custom, it fits easy on my hair and I use very little tape. My head is really sensitive so its nice to take my wig off when I get home and have a break from it all. I just ordered a Follea Gripper Cool to have another option.

My AU was pretty quick, all my hair fell out in less than 2 weeks. Waking up every morning to the pillow full of hair or the hair clogging up the shower drain in a matter of minutes was the worst. I think the hardest part was not knowing if/when it was going to slow down. Once I made the commitment to shave my head completely and wear a wig, things got a little bit easier. It wasn't about when the process was going to stop, it was more about how to move forward with the way things were. My hair stopped growing within the first few weeks so I didn't really need to shave it again.

I've now had AU for over a year. I stopped questioning what caused it a long time ago and just deal with it as best I can. If you have any specific questions about wigs or want to see more pictures, send me an email. I hope this helps.

em

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