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Overload
Hi...really struggling here with a load of health issues and terrible hairloss. I spend most of my searching for a solution. Yet, I keep coming up empty handed and confused. Every choice I decide on seems to have a reason that I can't forth with it. Every place that I find that sounds hopeful, I find tons of negatives about it. I still have hair. Hair that falls out in clumps BUT I am not ready to shave it off. I have hair OCD..I have always worried about it and it has made me sick. I have wasted so much money and don't want to waste anymore. I tried a Flora and then when I had problems, I couldn't get her to call me back (her husband said she was sick, but others have told me they have talked to her), I have researched Freedom Wigs, but can't shave my head yet, I can't bond because I am super sensitive to everything, when I wear clips my already painful scalp is unbearable. I have spent the day researching the Wiggin Out salon and talking to a rep then to find tons of complaints on the internet. My health is deteriating, my nerves are shot, and I am feeling even more hopeless. It seems there's no answer...I had to go to the ER last night due to severe headaches and panic..MY AS is flared..My nerves are shot...I am isolating myself because I feel like I can't relate to anyone....I simply don't know what to do at this point....
Replies to This Discussion
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Permalink Reply by BTB (John) on
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Sounds just like what we went through only 20 years ago. Now we have accepted alopecia as part of our lives given up chasing cures and spending a fortune on quack cures. We both hate alopecia and we would love it out of our lives, but if its here we make the best we can of it. You will beat yourself up up over what is happening, it is what everyone does, and its valid I believe to do so. The loss of your hair is a massive life changing event, and this loss should be grieved. If you ever want or need to vent or chat we are available and will answer any questions you have.
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Permalink Reply by Christine on
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Hi, sorry to hear you are going through such a rough spot. My hair has always been a big thing for me, I always "did" my hair, never running out of the house with out it "done" and always being complemented on it, and the style, I almost think that is why it's been hard for me too. I understand feeling like you can't relate to anyone anymore, because its hard for others who do not have AA to relate to us. I'm not sure what your other health issues are, I hope they are not serious. You said you are not ready to shave it off, and I understand that totally, I've spent years being able to hide it, sometimes more successfully than others, but everyone who knows about my AA, says they can't beleive it and they would never know, my profile picture shows me at my worse up until know. I am very close if not right at the shave and be done with it place....I think you know when your there, I'm very tired of feeling like it is in control, not just of how much hair I have, but in how I feel, nothing ruins a great day for me than a little wind. Can't go for a walk, I'm afraid to leave the house, don't want to wear a hat in the middle of summer...ect. any of us who have the ability to hide, but have lost quite a bit know what thats like. I just want a system that works for me, looks real and natural and I can get on with my life. I'm going to look into the gripper wigs (folea) this week, I still have hair, so know that they are not an option for me unless I shave, but to be honest, if they look great I just may do it!! I'm sick to death of the amount of hair I'm losing everyday, and frankly I'd rather wash a shaved head at this point than clog up one more drain in my house. How much hair have you lost so far? Are you on any treatments? I'm not sur what a Flora is, but if you have had a bad experience with it, or them, move on, I know what you mean about being sensitive to stuff, I think thats why I want to look into a prostetic hair option because I can imagine what tape, or glue would do to my skin, I used Minoxidil for yrs until I could no longer use it because I have a sensitivity to it now:( But I've excepted that and realize that for me no treatment is a better option for now. I hope that you can get past this soon, and realize that you do have options, I live in a fairly rural area, so don't have a lot of wig shops around, makes it an ordeal for me to get to them, but I am excited to go see what its about. God gives us grace when we need it most, lean on him right now, and you might just be surprised at what is out there for you. Remember we are right here with you going through the same stuff.
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Permalink Reply by AnGeL on
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Aww im sorry ur going through that i used to hate taping and gluing my wigs it was the worst! Then i got a wig from mattyeandle witch didnt require glue it was so amazing i could juz pop it on and go! Its been 2 1/2 years and imnow looking for a new one but my wig started getting loose cuz i have about 90% regrowth and its like chin length so now i use wiggrip!! From milano i have it and it makes your wig stay put and not slip! You will love it no tape no glue no clips!
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Permalink Reply by Lori Van Decker on
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Sorry to hear that you are experiencing this, but I sure can relate. I'm 57 and I've had various forms of AA since I was 16. It took me a very long time to come to the terms that I have with AU, and after more than 40 years, I still have days where I am not happy with any of the wigs I have, or my head is too sensitive to deal with a head cover, or it's hot and humid and it is easier just be a cue ball hermit alone with my very non-judgmental pets. The anxiety gets better, but it might never go away. If it is any comfort to you, most of us have gone through it and are still going through it, even if intermittently. So please reach out to us, vent to us, cry to us.... we understand!
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Permalink Reply by Chefpam on
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You all are amazing. Thank you for responding and for your words of comfort. My body seems to be attacking itself in every way. I can't find one thing for another it seems. I just want to find some comfort and it seems impossible at this time. I am adjusting to Enbrel and my head feels funny all the time and I feel out of it and worrying about the hair on top of everything is just a lot to deal with. I fantasize about shaving it off and being done with it but then I freak out and think what if I can never find a wig. Then I fantasize about just walking around bald and saying, "look world, get it over with!" and accepting it. I am just so tried...I am just like a dog chasing my tail. I will check out the Mattyeandle? (is that right? Angel?). So sorry you all know how I feel but glad to not be alone...Thank you ALL...
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Pam,
I don't know if this helps, but I also have auto-immune issues, including Lupus symptoms that can be painful. Rather than taking drugs, I decided to try an anti-inflammatory diet. Within a week of cutting dairy out of my diet, my joint pain went from unbearable to barely there. I eat no meat, no dairy (except if you count goat cheese, which I refuse to give up). And I try to eat as few processed foods as is possible. My guide to this is Dr. Joel Fuhrman's NY Times Bestseller "Eat to Live." It might help you!
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I've done this diet and many others to no avail. I am so glad it is working for you though. I didn't want to take drugs either. But I was going to lose my ability to walk or care for my child so I didn't have a choice.
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Permalink Reply by Sandy on
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Sorry for your troubles....Have you tried the double sided tape extensions? They have a 1/4 inch polystrip at the top edge, where thin double sidded tape is attached to. The techniques involves taking a little of your hair and sandwich-ing it in between 2 strips of hair and then pressing the 2 strips ( which already have the tape attached) together to bond to each other. The result is that you have hair extensions that are natural and flat on your scalp ( flatter than the clip in) without the clips. The draw back is that every two months or so you have to go back to the hair sylist to have her remove them with a special solvent that bresks down the glue in the tape. She removes the old tape, puts on fresh tap, and does the process all over again. The hair is pricey put the hair will last a year if you take care of it. Just a suggestion...I know it's tough. I have alopecia areata and practically live in clip in extensions that hurt my scalp too.. The first thing I do when I come home from a long day at work is take off my clip in and then my shoes. Feel better and best of luck.
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When I come home, things come off in this order: wig, bra, shoes. ;)
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HI Sandy. No, I don't think I could use extensions due to the way my hair is falling out so bad. And anything that would pull on it with this scalp pain right now would probably be unbearable. Thank you for the suggestion and well wishes...
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Permalink Reply by Ypsimama on
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Hi Pam,
Has your doctor ever checked your biotin, d3, vitamin b levels? I've struggled with AA for the past decade and it wasn't until I had all this testing done late last year that I realized I was deficient in all these vitamins. Look up the connection with biotin and hair loss, I was shocked. I also read somewhere that up to 40% of all pregnant women may be biotin deficient - my alopecia started in pregnancy. Also, I believe that high levels of stress zaps your biotin reserves.I was also had a food sensitivity bloodwork done and found that I was sensitive to a number of foods (wheat, egg whites, tomatoes, sugar, coffee etc.) After eliminating those and supplementing I have expereienced full regrowth. I did have a spot or two sneak up when I went back to eating sugar (darnit!!) so I've cut that out again and all is well.
Hope this helps!!
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