Alopecia World
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New to this too!
Hello all,
It's so awesome to have a place to ask questions with people that are experiencing the same condition. Mine started about a month and a half ago. My "comb overs" are barely an option anymore, I'm losing hair so fast. I'm working full time in the public eye. I ran into the restroom 5 times today to see if my bald spots were still covered. I sprayed more hair spray on them to try to keep them concealed. I have to learn to keep my fingers out of my hair. The gusts of wind outside our windy town leave me feeling exposed around friends. Never in my life did I think I'd have to worry about this situation. Did you tell your coworkers? Did you quickly buy a wig to conceal it? Did you take a leave of absence from work to figure things out? I'm afraid I'll be bald by my next scheduled work shift. I would love any advice you can give me. Thanks!
P.S. Did you try Rogaine right away? What strength? The package insert stated it might cause hair loss at first. What was your experience?
Replies to This Discussion
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Permalink Reply by beni2702 on
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Hi! When i started losing my hair I was in complete denial. I did the comb over thing and one day some guy told me that i was going bald. Ugh! Like I didn't know that already. So that lead me to buy a wig and been wearing one ever since. It was hard at first but I felt better about myself. All my friends asked why and they accepted me. Yes, I got weird looks at first. Now I wear my wig with confidence and don't really get a lot of looks anymore. I've recently decided that I am going to look into rogaine and other options. I know they sell some scalp coloring fibers at Sallys Beauty supply. I've never tried it myself though. Good luck!
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Permalink Reply by Mangostein on
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Thanks for replying. I believe I may have someone comment on my hair loss soon. I am trying to get an appointment with Follea this week. Hiding the spots on my head takes alot of work and is exhausting emotionally. Did your insurance company pay for it? How long have you had alopecia? What other treatments did you try so far?
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Permalink Reply by Pam D. on
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I "came out" to my friends on FB. They have always been very supportive. I have 4 wigs in 4 different styles and three different colors, 2 sets of eyebrows and several sets of eyelashes. I wear scarves w/hats or just hats (I look bald, but I don't care). Have you been to a doctor? Have you been diagnosed? I'm getting the feeling maybe you haven't...
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Hi, You are so brave! You are right. I do not have a formal diagnosis yet, just alopecia from my family physician. I was in for a physical and showed her my bald spot on the top of my head. She didn't even examine my scalp. She said it could be stress related or a thyroid issue. In the three weeks since, I noticed several other patchy areas. I just had the blood work (CBC, CMP, TSH and Free T4) done one week ago. I expect to get the results back soon. In the meantime, I made an appointment with a dermatologist. The first appointment available was in early June. I've spent a lot of time on the internet researching treatment (i.e., Cortisone injections, Rogaine, Essential Oils, Biotin, Acupuncture, Gluten diet, Autoimmune Elimination diet, leaky gut, wigs, etc) The more I research, it seems like A.A. effects everyone differently. It seems like a rollercoaster ride. I suppose it's best to accept it and move on, if possible. I'm starting to settle in with this a little, just so scary! I started on a gluten free diet this week. I am looking forward to get proper testing, evaluation, diagnosis and treatment. Thank you for your advice. I appreciate it!
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my hair fell out in a matter of weeks. i was lucky that it was winter, so i could wear a hat when driving carpool. i ordered a synthetic wig which was not great, but then i did some research and got a great wig. it took some time to get, but worth the money and the wait. by the way, i did try rogaine, but they consider it to be successful with a few hairs in a square inch, which wasn't going to work for me. i even tried cortisone shots for a long time, but they eventually ended up giving me such terrible headaches, i couldn't take it anymore.
good luck to you!!!
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My first dermatologist appointment is scheduled for early June. I'm assuming it's normal to want to try "everything" in an attempt to grow hair back. I have an appointment at the Follea salon tomorrow with a wig consultant. I think having a nice wig will boost my confidence and help a little. Thanks for sharing your story with me. I hope you are doing well!
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You are right, it effects everyone differently and it is a roller-coaster ride. I've had this for 3 years w/2 periods of re-growth. The last time my hair came back, I even got my arm-hair back. This time it fell out (I've lost almost all of it, where before it was 80% or so), even my eyebrows and eyelashes fell out, which didn't happen the 1st two times. Even when something seems to work, it isn't permanent. However, you are at the point of wanting to try everything in the hopes it will fix the problem. I'm past that. I'm on plaquenil now; if it works, great, but for how long? I'm not sure how much I want to risk my overall health for the (temporary) return of my hair. I don't know why anyone would get "weird looks" wearing a wig; I only get complements on my "hair". If I know the person, I will tell them it's a wig; personally, I think talking about the condition is healthier than hiding it and public awareness can only help.
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Hi, I drove 350 miles to Southern California on Wednesday and came home from Follea with a "cranial prosthesis" (wig). I had to get a prescription from my primary doctor. Doing this saved me the tax on the purchase. I absolutely love it! Someone else had previously ordered it, had it cut by the Follea stylist, and for some reason did not take it home. When the consultant saw me when I walked in she immediately thought of this wig. It was exactly the same color, and same style of the way I wear my hair. I cried when I put it on. I felt like "me" in it. It fit perfectly as well. Since it was gently used, I got a significant discount on it as well. It felt like a divine intervention, like someone took my hand and led me to this consultant and salon.
It took me 8 hours to drive home, so this was a good time to practice wearing it. It felt like wearing a hat and at times gave me a slight headache that would come and go, especially with distraction. When I arrived home, my husband said "Let's see it" and I pretended to reach into the bag to get it. Anyway, long story short, he didn't even recognize that I was already wearing it! Yesterday, I went to tell my best friend (a very intuitive person) about my new hair loss condition. She didn't notice the wig either. She said it just looked like it looks after I have my hair cut and colored. My next hurdle coming is to tell my coworkers and after that, there is no going back! News in a small town travels fast.
The other exciting thing since I posted last was that I was able to move my Dermatologist appointment up to today. I have to drive 3 hours north this morning. I felt like this change of appointment fell into my lap unexpectly too. My coworker took my shift today so I could go.
Lastly, Pam, I hope the Plaquenil helps you. (Isn't it a Lupus med?) What I'm learning from all of you, is that we need more controlled research studies to determine what works and what doesn't due to the unpredictable course this disease leads. Since many of these hair loss treatments haven't been studied, we really don't know if that particular rememdy worked when hair growth returned or if any other random product used at that time would have produced the same result as well. The other thing that I think is important is to seek the true cause of the condition, if possible, not just put a bandaid on the symptoms.
My next step will be to find an Endocrinologist (hormone imbalances) and possible a Rheumatologist to rule out a coexisting autoimmune disease.
Wish me luck today! Most important for my coping is this support group. Pam, you particularly were a blessing for me. I like your attitude and your view on life. When we let the stress go, find a true cause, enlist more controlled research, we will get our hair back. If we don't, we will still be ok, there is still plenty of good living to do!
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Thank you for the kind words. I don't call AA/AU a "disease", I call it a "condition"; for some reason, I don't think I'm sick, which, in my mind, a disease is a sickness of some kind. I feel, and am, 100% healthy. I have thought maybe I'm too healthy and my immune system needs something to keep itself busy, like attacking my hair. I have never been one to stress about things I have no control over; don't see what good it does, anyway. BTW, Plaquenil is a lupus drug; it is supposed to suppress the immune system. Since I very rarely get sick, I think it'll be okay to try, but I do worry about long-term effects.
AA/AU is very difficult to come to terms with; some people never do. I think you will find people to be very accepting of the "new" you.
Good luck. I hope you hair loss is just a temporary bump in the road of life for you. Please let me know the results of your tests.
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Hey Pam,
I just wanted to say that I totally agree with you -- sometimes I think I have a really good (too good) immune system. I almost never get sick and when I get hurt, I heal really fast. My immune system is like an out-of-control attack dog!
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Pam,
I am a nurse, so the word "disease" popped out of my mouth. I am thankful this hair loss condition is not associated with ill symptoms. You and "Doodler" bring up a good point about being too healthy. If our immune systems are attacking our hair follicles, is it a good idea to eat healthy, stress less, and try to enhance it with all sorts of potions (essential oils, vitamins, juicing, gluten free diet, acupuncture ect.)? Just wondering....
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Hi Pam,
I lost the rest of the post when I submitted. I will rewrite it now. I went to the dermatologist today. I really liked him. He had a good sense of humor. He said I have 30-40% diffuse hair loss. As I expected, he said there were no real concrete answers for hair loss and not an easy one to treat. I asked him about cortisone injections. He said "I would have to inject your whole head." I laughed. I said, "That will probably take you a week to do." He said it would be better to take it orally. He prescribed me a one month tapering dose of predisone to see if it helped. He recommended that I start applying the Rogaine to my scalp. He wants me to see an Endocrinologist since by Free T4 was borderline low. He also wants me to have the autoimmune lab work done (ANA). Other than that, he wants me to follow up in one month.
Pam, How long have you been taking Plaquenil and which type of doctor prescribed it? I noticed your picture is with a horse. Do you enjoy riding? What type of horse do you have? My parents have Missouri Fox Trotters. I am not much of a rider, but I enjoy riding their horses when I visit them. Thanks again for all your support. You were here for me during a time I was feeling very unsettled and scared! I would love to offer support to you!
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