Nice to hear from you. I'm sorry to hear that your hair falling out again. When I lost mine at 14 it went fast and never came back. As much as I would love for it come back sometimes maybe it not doing that is for the best. It talked to somone who's hair would come and go. She described it like a bad bad boyfriend. It would come back and make her happy temporarily and then leave again and break her heart. I thought that was a cute analogy. :) I never took any medications.
When mine fell out at 14 they didn't have all the options as they do now. Hormones and Rogaine was about it. I actually used Rogaine, without success of course, but as far as other treatments my parents didn't want to subject me to anythig with nasty side effects. (like hormones for a 14 year old) My eyebrows and eyelashes used to come and go, but they've been gone for along time now as well and I'm sure they won't come back. I actually finally had my brows tattooed a couple of years ago and I'm so glad I did.
My hair is a Peggy Knight piece. She has several options. I've got vacuums, but now she's come out with a few net base pieces that are kind of a cross between a vacuum and a net base. The one I'm wearing in the pix is a cross between a vacuum and net base. Let me know if you're in need and I can give you more info. I'm assuming your hair in your pictue is your own hair? I'll keep my fingers crossed you keep it and won't be in need of a hairpiece!
Also, I know the leader of the Seattle Support group if your ever interested in going to a meeting. Let me know and I'll give her your name. Or I can just let you know when the next meeting will be. THe group meets at Virginia Mason in Seattle a couple times a year.
Hi Christine,
That is really interesting to know about the stalk bite, it's not very attractive is it? I'm sorry to hear about your hair falling out too.
After about 12 months some of my hair started to re grow at the back. At present I still have a lot of bald spots at the back, on the sides and now I am going bald at the front. But you know what? I don't care because I have my wig. I think when you feel ready you should get a wig :) I went to a wig shop and the lady told me that synthetic are better than real haired wigs because you don't get as hot and they last longer. I tried a few on and found one I like. It's a bit hard to explain but I feel that my wig just stays. It appears to have an elastic type band that helps hold it on. Only when it gets super windy I worry that it may come off. Its easy to eash (once every 3 weeks) and I am glad I bought it. I think I will need to buy a new wig every 8 months or so. It tends to get a little messy on the ends otherwise. I think you should do what feels right for you and I hope that one day your hair regrows. I act like my hair will never grow back so I am not disappointed. There are worse things in life. We can still walk, talk and eat lol. Contact me if you ever have any more questions, I don't mind.
P.S I saw a picture of your dogs and the one on the left looks like our sausage dog, Snoopy lol.
Christine, I am going through the exact same thing!!!! Wow, I wish I could just meet you and give you a big hug!!! It is so hard for people to relate to what we are going through! i totally understand you!! I too have areas in the back that have not grown and I'm wondering if they ever will!! I asked the doctor that and they said that it could mostly come back but it might have a patch right at the nape that might never grow back, :(. I too am having spots all over now, some on the top and some on the back, top part of the head. It is so frustrating!! I'm still getting shots, but I'm wondering if I should even bother sometimes!! Wow, well if you ever want to talk to me live, lol, I will send you my number via e-mail and maybe we could talk soon!! I just don't know what to think anymore, one day I'm laughing the next, I'm crying!! So tired of this fight!! I pray that you are ok too. Please e-mail me or call me if you ever want to talk!! Take care!!
Melissa
PS Did they ever check your thyroid?? I can't remember if we ever had that conversation. My husband still wants me to look into that possibility too.
Christine, How are things going with you?! I'm doing ok. Just tired of the ups and downs. Going to the doctor this tuesday, probably more treatment again, :( I have a few new spots and a little growth, with some old patches mixed in with it, attractive right, lol!! Hope your loss has stopped. I'm just hanging in there! Trying to be positive but it's a long hard road for me sometimes! Hope to hear fro you soon!! Melissa
Christine,
Hope all is well with you! Thanks for the message! Sorry it took me so long to get back to you!! I have been super busy with my girls, spring break and all! No, I did not shave! I still have about 40% or so of my own hair. I'm not gonna until it really looks bad and we all know that we can't predict when that with AA!! I'm still hanging on! I went to the doctor, and he just gave me the same marching orders again. Tapering off the steroids still. The shedding has slowed, but the growth is very slow. I still have patches. Now I have folliculitus wich I can't stand!!! Have you ever had that?! I can't seem to catch a break!! I'm just trying to be patient, but it's hard sometimes. How is your hair doing? Are you still shedding a lot? I pray that you are not and it stopped!! Let me know what's your status too!! I'm so glad to hear from you! Take care and be in touch!! Melissa
Thank you for your comment on my profile. It is very much appreciated. The religious row in Malaysia has not deteriorated but the tension remains here. A little trial and tribulation are good for christian faith, so that we are reminded that being Christ's follower is just not that simple. Thank you for your thought and prayer. I thank God for people like you. Take care...God bless.
Hi Christine! Thanks for the reply! Yes, great advise! I must remember that people on here are reaching out because of what is happening, but there have to be others on her that got over their AA too. We just don't hear about that. My husband always reminds me of that too. Good point! some times I have to stop reading all the stuff on the net because it is just too depressing. And if you want to have a healing spirit, then you must not read all that stuff all the time! I too believe in healing, but sometimes I get down and wonder if God will heal me or if I'm just supposed to have this and be bald. I'm just not sure yet. I guess in time, I will know and I will have to accept whatever happens. Augh! Enough about that! Yes, I dod loose the hair near my temples both times and it grew back both times. Very weird. Also, the color was different but it was lighter in those areas and not darker. That is good that you are seeing some growth too. how is the shedding going? Do you ever count your hairs more or less? I thought you told me that you didn't. That's probably a good thing. I can eyeball a ball of hair and I can tell you about how many hairs are in a ball! That is terrible I know. i still shed, but it is less and less. I'm very scared about what will happen when I get off of the steroids. I met another lady that did the same treatment and she told me that she still has her hair with some spots and another lady told me that she lost it all right after she stopped so I don't know what to think!!! Be in touch! Prayers and hugs! Melissa :)
Christine! Hi there! I'm sorry that you are not feeling well, I hope that you are better
now! I am just getting over Strep, never had it until now. I'm wondering if all the steroids may have lowered my ability to fight it?! I wish I could stop yours and mine shedding!! I know how you feel, please believe me! That happened to me in Sept. 2009 and it just still seems to be shedding!! I can't take it anymore!! It's tiring! I pray that it will resolve for you soon!!! Just try to be patient and do all the things that you did the last time to help it. I'm praying for you! Let me know if there is anything else that I can do to help you though this hard part! Hope you have a great Valentines day too! Melissa
PS About the Rogaine! My husband uses it too! LOL! you are so right, it's funny what growing a little hair will do for people! I never thought I would be using this like him! Crazy stuff! Take care! :)
Christine, Here is the link for that website for the hair pieces: They are called Hair-B-Tweenz. They go temple to temple underneath your own hair on the top. They have been a lifesaver for me when I needed them. Hope this helps you too! Talk soon!! Melissa http://www.lookoflove.com/
Christine,
Thanks for the feedback! Well, I guess it is good to hear that you got it with less involvement every time that you got an episode. That think that is not as common. Most people get worse, so that's a good sign. I also heard that the shots don't work as well for our pattern but they can also give you a shot in the butt that is the same medicine and it did work for me the first time around. The second time, it wasn't as effective and I'm not sure why. I guess I'm just willing to try anything if it works even a little because I'm so scared to loose it all. When you lost it all around the sides and back, how long did it take for you to grow it all back to a decent length? Also, did it come in with spots and then did the spots fill in or did it all just come in all together with no holes?? Mine is coming back, but it's weird, like a pattern of growth and areas of baldness still. It's so frustrating, but I'm hoping that it will all fill in!! I'm still on the oral steroids and I will go back to the doctor probably in the beginning of March. I'll keep you posted. Keep using the Rogaine and take your vitamins and et your exercise. I think everything that you can do works together to help it stop. Please keep me posted. I love your new pics!! Thanks for posting them! Take care!! Melissa
Christine,
Hi there! Yes, I got mine from a hairdresser here where I live, but I did find them on the net too. I will send you the link, but I believe it's www.locksoflove.com. It's a hair site out of New Jersey and they have hair pieces that are like a strip of hair that goes around the whole head and it clips into your own hair. I wear these and it gets my by for now. They are not comfortable to wear for long periods of time, I only wear mine if I'm going out and need to wear it. Plus, they can ride up sometimes and you have to adjust them underneath your hair which can be a pain in the butt sometimes too. I just wish that I could keep my own hair!! Ugh, all the stuff that we have to go through! Anyways, if you need help or if you are interested in these pieces, let me know and I can help you out! Have you ever gone for shots on your scalp?? I think these help a lot of people that have AA, maybe you should look into that too. I would go to someone that really understands AA though, some people do not know how to give the shots correctly. That's why I travel to see my doctor in Dallas. The nurse there is very good. I'm going back in a few weeks. I'm growing hair now but very slowly. I just pray that is does not fall out again!! How many times has this happened to you again?? This is my second time around. My doctor says that you can just not predict this at all. That is hard to deal with all the time. I'm so tired of it. Well, I'll be praying for you and pray that this stops for you too. Where are your new spots at? In the back area? That is where I got mine at first. Ok, I'm off to bed, God Bless!! Melissa
Christine,
Nice picture! I'm doing ok. I got some regrowth now in the back, but still shedding more than I would care too! I know what's normal for me and this is not normal shedding yet!! I'm just praying for it to slow down! It's been shedding since Sept. 2009! Tired of it! i should be bald be now, but I guess I had a lot of hair! LOL! Still have in on the top and a little on the sides but it looks really funny unless I wear a hair piece under neath. Well, I pray that your shedding stops, just try to relax. I always thought the same thing about the stress being the trigger, but then I wonder why little kids get this too and others who have told me that they were happy when they started with AA too, so I don't know what the heck to think sometimes! But I do think that there are triggers for sure and we just have to know what they are I guess! This AA is just too unpredictable! I did get a wig and I really haven't worn it to tell you the truth. I'm hanging on to my own hair and wearing hair pieces that go underneath the hair so it looks like mine. I figure I'm gonna wait until I really need to wear it and then wear it more often. I look at it everyday wondering if and when will I ever need to wear it. Crazy, right?! Please let me know what happens with your shedding and do the same things that you did the last time to stop it. Hopefully, it will stop soon!! Be in touch and keep praying too! Take care! Melissa :)
Christine,
Hi there! Happy to hear from you! Yes, I did go to the doctor and he still has my on the steroids, but I'm on a every other day cycle now. I still hate it and I know it's bad for you. I have had some regrowth but it's still patchy in some areas and stubborn. I still have some hair to work with but I can't put my hair up in a ponytail at all. I can't stand that! I'm just praying that when I get off of the steroids, it won't all fall out again, ugh! I still shed more than I think I should be because I find hairs all over the place still. It's been a hard few months, but I'm praying their is an expiration date with this AA at some point!! I just want to move on already! Tired of the fight! Well, sorry that you have had stress on the job! hope things get better for you there too! How is your hair doing?! I'm still taking a ton of vitamins hoping that will help too. Take care and please stay in touch! Melissa :) PS i ordered a wig too and should be getting it soon, I'll post a picture on here soon when i get it. I might not wear it all the time yet, but I got it just in case if i really need to. Talk soon!!
Christine, Merry Christmas! Thanks for the message and asking about how I'm doing! I'm ok, the shedding has slowed but not totally stopped. I still have a lot of patches but hair seems to be growing very slowly in some of the patches. i did get a little patch in the hairline area that is bothering me now but it's not too bad. I'm just so tired of it all. I did get a wig, but I haven't really wore it yet. My daughter hates it! She doesn't like me to wear it so I kinda feel weird putting it on. Anyways, I am still on the steroids too and I'm getting tired of that too. I has made me gain an little weight and more nervous at times. I'm wondering if it's all worth it. Well, don't want to sound too negative, we did go to church today and I am thankful for everything else that I have. I am blessed too. Thanks for the thoughts, I will be in touch! I'm going back to the doctor on Jan. 4th. I'll let you know how it goes! Take care! Melissa :)
Christine, Thanks for the comment! I feel really stupid about the shedding because I'm not sure if the steroids are causing the slow down! If so, all I'm reading is that it will just fall out again so I think I'm just buying time now. I can't believe that it just stopped for you after 40% loss. So how long was that period, a few months of shedding? What else did you do since you did not do any treatments? Did you do vitamins at all or shampoos? That is awesome! I think praying must have helped! I'm about 50% loss now and it is driving me crazy. It looks so bad now. I can't go out without my hairpiece on. Did you ever get patches on the top back part of your hair? I now have some patches on the top in the back and those look the worst!! I hate them! I didn't mind the bottom as much as the ones on top. My head still itches and is tender in spots too. I'm glad that you mentioned you had bald patches for a while and then they filled in. I'm wondering when mine are gonna fill in! I have had this big one on the left side of my head since like Oct. 2009 and I thinking, will it ever fill in?? Also, it's all gonna be uneven, I'm so frustrated about it! I was looking at pics. of me when I was pregnant and my hair was amazing!! Augh!! It hurts sooo much!! I'm so glad that you are filling in! That is such a great feeling! I still can't believe that you didn't use anything, maybe I should have just done that! Too late now! Just got to go day by day! I will keep you posted! Let me know if the back ever fills out for you too! Have a great Thanksgiving!! :) Melissa
Christine, Hi there! Thanks for the note! Yes, I'm doing ok with the treatment now. I haven't had any major side effects YET. Thanks to God! Although this is only like week 2 on being on them. I think I noticed yesterday finally that there was a little less shedding, do I dare say that?! I'm scared to! But we will see, I will keep you updated! What is your daily routine now for the hair growth? Just vitamins? You never did shots or orals did you? You are very blessed!! That is awesome!! How much percentage wise did you lose at the most?? I think I'm up to about 40-50% now. I have some patches in the top back part of my head that is the worst for me right now. I hate to go out anywhere and I'm waiting for a hairpiece that I bought to come in so I can feel normal. I know what you mean about the waking up wondering about your hair, I always wake up thinking that this is some cruel joke and then I feel my head and there that feeling is again!! The patches and scalp! I hate that!! How much regrowth do you have now?? Are you close to 100%? I'm so happy for you! It's nice to know that someone is beating this!! Is there anything else you do that you think helps? It this point, I'm willing to try anything to help the hair grow. Please stay in touch and keep me posted on your hair too. I'm so glad that I have you and others on here to talk to. Thanks for all your continued support! Melissa
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Take care,
Nice to hear from you. I'm sorry to hear that your hair falling out again. When I lost mine at 14 it went fast and never came back. As much as I would love for it come back sometimes maybe it not doing that is for the best. It talked to somone who's hair would come and go. She described it like a bad bad boyfriend. It would come back and make her happy temporarily and then leave again and break her heart. I thought that was a cute analogy. :) I never took any medications.
When mine fell out at 14 they didn't have all the options as they do now. Hormones and Rogaine was about it. I actually used Rogaine, without success of course, but as far as other treatments my parents didn't want to subject me to anythig with nasty side effects. (like hormones for a 14 year old) My eyebrows and eyelashes used to come and go, but they've been gone for along time now as well and I'm sure they won't come back. I actually finally had my brows tattooed a couple of years ago and I'm so glad I did.
My hair is a Peggy Knight piece. She has several options. I've got vacuums, but now she's come out with a few net base pieces that are kind of a cross between a vacuum and a net base. The one I'm wearing in the pix is a cross between a vacuum and net base. Let me know if you're in need and I can give you more info. I'm assuming your hair in your pictue is your own hair? I'll keep my fingers crossed you keep it and won't be in need of a hairpiece!
Also, I know the leader of the Seattle Support group if your ever interested in going to a meeting. Let me know and I'll give her your name. Or I can just let you know when the next meeting will be. THe group meets at Virginia Mason in Seattle a couple times a year.
Boy, sorry to ramble! Take care,
That is really interesting to know about the stalk bite, it's not very attractive is it? I'm sorry to hear about your hair falling out too.
After about 12 months some of my hair started to re grow at the back. At present I still have a lot of bald spots at the back, on the sides and now I am going bald at the front. But you know what? I don't care because I have my wig. I think when you feel ready you should get a wig :) I went to a wig shop and the lady told me that synthetic are better than real haired wigs because you don't get as hot and they last longer. I tried a few on and found one I like. It's a bit hard to explain but I feel that my wig just stays. It appears to have an elastic type band that helps hold it on. Only when it gets super windy I worry that it may come off. Its easy to eash (once every 3 weeks) and I am glad I bought it. I think I will need to buy a new wig every 8 months or so. It tends to get a little messy on the ends otherwise. I think you should do what feels right for you and I hope that one day your hair regrows. I act like my hair will never grow back so I am not disappointed. There are worse things in life. We can still walk, talk and eat lol. Contact me if you ever have any more questions, I don't mind.
P.S I saw a picture of your dogs and the one on the left looks like our sausage dog, Snoopy lol.
Melissa
PS Did they ever check your thyroid?? I can't remember if we ever had that conversation. My husband still wants me to look into that possibility too.
Hope all is well with you! Thanks for the message! Sorry it took me so long to get back to you!! I have been super busy with my girls, spring break and all! No, I did not shave! I still have about 40% or so of my own hair. I'm not gonna until it really looks bad and we all know that we can't predict when that with AA!! I'm still hanging on! I went to the doctor, and he just gave me the same marching orders again. Tapering off the steroids still. The shedding has slowed, but the growth is very slow. I still have patches. Now I have folliculitus wich I can't stand!!! Have you ever had that?! I can't seem to catch a break!! I'm just trying to be patient, but it's hard sometimes. How is your hair doing? Are you still shedding a lot? I pray that you are not and it stopped!! Let me know what's your status too!! I'm so glad to hear from you! Take care and be in touch!! Melissa
Thank you for your comment on my profile. It is very much appreciated. The religious row in Malaysia has not deteriorated but the tension remains here. A little trial and tribulation are good for christian faith, so that we are reminded that being Christ's follower is just not that simple. Thank you for your thought and prayer. I thank God for people like you. Take care...God bless.
p/s: preparing for my final of all final exams...
now! I am just getting over Strep, never had it until now. I'm wondering if all the steroids may have lowered my ability to fight it?! I wish I could stop yours and mine shedding!! I know how you feel, please believe me! That happened to me in Sept. 2009 and it just still seems to be shedding!! I can't take it anymore!! It's tiring! I pray that it will resolve for you soon!!! Just try to be patient and do all the things that you did the last time to help it. I'm praying for you! Let me know if there is anything else that I can do to help you though this hard part! Hope you have a great Valentines day too! Melissa
PS About the Rogaine! My husband uses it too! LOL! you are so right, it's funny what growing a little hair will do for people! I never thought I would be using this like him! Crazy stuff! Take care! :)
http://www.lookoflove.com/
Thanks for the feedback! Well, I guess it is good to hear that you got it with less involvement every time that you got an episode. That think that is not as common. Most people get worse, so that's a good sign. I also heard that the shots don't work as well for our pattern but they can also give you a shot in the butt that is the same medicine and it did work for me the first time around. The second time, it wasn't as effective and I'm not sure why. I guess I'm just willing to try anything if it works even a little because I'm so scared to loose it all. When you lost it all around the sides and back, how long did it take for you to grow it all back to a decent length? Also, did it come in with spots and then did the spots fill in or did it all just come in all together with no holes?? Mine is coming back, but it's weird, like a pattern of growth and areas of baldness still. It's so frustrating, but I'm hoping that it will all fill in!! I'm still on the oral steroids and I will go back to the doctor probably in the beginning of March. I'll keep you posted. Keep using the Rogaine and take your vitamins and et your exercise. I think everything that you can do works together to help it stop. Please keep me posted. I love your new pics!! Thanks for posting them! Take care!! Melissa
Hi there! Yes, I got mine from a hairdresser here where I live, but I did find them on the net too. I will send you the link, but I believe it's www.locksoflove.com. It's a hair site out of New Jersey and they have hair pieces that are like a strip of hair that goes around the whole head and it clips into your own hair. I wear these and it gets my by for now. They are not comfortable to wear for long periods of time, I only wear mine if I'm going out and need to wear it. Plus, they can ride up sometimes and you have to adjust them underneath your hair which can be a pain in the butt sometimes too. I just wish that I could keep my own hair!! Ugh, all the stuff that we have to go through! Anyways, if you need help or if you are interested in these pieces, let me know and I can help you out! Have you ever gone for shots on your scalp?? I think these help a lot of people that have AA, maybe you should look into that too. I would go to someone that really understands AA though, some people do not know how to give the shots correctly. That's why I travel to see my doctor in Dallas. The nurse there is very good. I'm going back in a few weeks. I'm growing hair now but very slowly. I just pray that is does not fall out again!! How many times has this happened to you again?? This is my second time around. My doctor says that you can just not predict this at all. That is hard to deal with all the time. I'm so tired of it. Well, I'll be praying for you and pray that this stops for you too. Where are your new spots at? In the back area? That is where I got mine at first. Ok, I'm off to bed, God Bless!! Melissa
Nice picture! I'm doing ok. I got some regrowth now in the back, but still shedding more than I would care too! I know what's normal for me and this is not normal shedding yet!! I'm just praying for it to slow down! It's been shedding since Sept. 2009! Tired of it! i should be bald be now, but I guess I had a lot of hair! LOL! Still have in on the top and a little on the sides but it looks really funny unless I wear a hair piece under neath. Well, I pray that your shedding stops, just try to relax. I always thought the same thing about the stress being the trigger, but then I wonder why little kids get this too and others who have told me that they were happy when they started with AA too, so I don't know what the heck to think sometimes! But I do think that there are triggers for sure and we just have to know what they are I guess! This AA is just too unpredictable! I did get a wig and I really haven't worn it to tell you the truth. I'm hanging on to my own hair and wearing hair pieces that go underneath the hair so it looks like mine. I figure I'm gonna wait until I really need to wear it and then wear it more often. I look at it everyday wondering if and when will I ever need to wear it. Crazy, right?! Please let me know what happens with your shedding and do the same things that you did the last time to stop it. Hopefully, it will stop soon!! Be in touch and keep praying too! Take care! Melissa :)
Hi there! Happy to hear from you! Yes, I did go to the doctor and he still has my on the steroids, but I'm on a every other day cycle now. I still hate it and I know it's bad for you. I have had some regrowth but it's still patchy in some areas and stubborn. I still have some hair to work with but I can't put my hair up in a ponytail at all. I can't stand that! I'm just praying that when I get off of the steroids, it won't all fall out again, ugh! I still shed more than I think I should be because I find hairs all over the place still. It's been a hard few months, but I'm praying their is an expiration date with this AA at some point!! I just want to move on already! Tired of the fight! Well, sorry that you have had stress on the job! hope things get better for you there too! How is your hair doing?! I'm still taking a ton of vitamins hoping that will help too. Take care and please stay in touch! Melissa :) PS i ordered a wig too and should be getting it soon, I'll post a picture on here soon when i get it. I might not wear it all the time yet, but I got it just in case if i really need to. Talk soon!!
-Jet
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Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.