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It's been almost 4 years. Now what? (CTE & Androgenetic Alopecia rant)

Discussion in 'Women's General Hair Loss Discussions' started by DonnaL, Jan 22, 2015.

  1. mdchambers678

    mdchambers678 New Member

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    I feel your pain

    My hair is very similar to yours though mine is much worse. I feel the exact same way. I have two kids, 4 and 3, and I feel like I'm missing out on so much with them because my hair loss consumes my whole life. If I look in the mirror my day/mood is ruined and sometimes I feel like I take it out on my kids. It makes me feel even more horrible. I don't even feel like myself anymore. I'm too scared to take antidepressants for fear of more loss. I'm also terrified that my loss is scaring because of how shiny my scalp is. I'm going to a specialist in two weeks for a biopsy. I hate this and how much effect I let this have in my life. I'm only thirty years old!!
     
  2. mycurlyhair

    mycurlyhair Experienced Member

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    Hi MDC! Sorry you are suffering too! I feel the exact same way. I only look in the mirror once a day and that is when I do my hair in the morning. If I see a glimpse of how I look or a reflection my heart goes into my stomach. It sucks so bad!
     
  3. DonnaL

    DonnaL Established Member

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    I'm sorry MDC :( It's hell. Just flat out, hell.... If you want to vent or compare notes, feel free to hit me up. I feel so alone right now suffering through this.

    Shed is up to 300/day now.. just keeps going up and up :/ Only about 1 month into the postpartum shedding, so I've got a ways to go yet. I've got a giant bald spot forming at my bangs, where I HAD some regrowth... now it's completely decimated. Thick headbands for me! FML. I'm wondering if I'm going to go into another TE once I stop nursing? I seem to be hormonally sensitive so this really scares me. Anyone have experience with that?
     
  4. iisara21

    iisara21 Experienced Member

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    Hey, Donna! I'm a long-time member who rarely ever posts anymore, but I jumped on here yesterday and happened to see this post. If I were close enough to give you a hug, I definitely would! First off, I am so, so sorry about your father. If you ever need to talk to someone, just send me a PM. I lost my mom 2.5 years ago. Your story sounds very similar to mine as far as the endless shedding goes. :( In fact, my hair looks a lot like yours right now, and I've been using Toppik at my hairline for the past month to try to fill in the bald patches there. I can tell you that you do come to a point of acceptance about the state of your hair, but it does take a very long, long time. For me, that point happened to be about 2 or 3 months ago. Even last summer, I remember telling another member on this site that I was too scared to keep up with cardiovascular exercise because I always seemed to shed twice as much on those days as I did on non-exercise days.

    I just got to the point recently where I decided that I didn't want my scalp to control my life like that anymore, so I have started working out more now. I do still have my down moments, but those consist more of avoiding looking at myself in the mirror after I get ready for the day and jumping on here once in awhile so I don't so alone in all of this. I haven't cried about my hair in over a year now, I think. It is what it is, and there's nothing I can do for this problem that I haven't already tried.

    There are a few things that have helped me feel better about my hair. I pulled together some money towards the end of 2008 and purchased a very lovely wig from one of the more popular vendors discussed on this site. I don't wear it very often, but it helps to know that I have it on hand. I'm one of those people who is very open about the fact that I own a wig and that I occasionally "wear hair," and everyone who knows has been very friendly and supportive about it. Even in my current hair state with the bald patches all along my hairline, when I mention my wig to a new person, they almost always ask, "Oh, really? Why do you own a wig?" I always want to say in response, "Are you kidding???" although I never have. Those who have seen me in my wig usually think that I just decided to wear my hair down (I wear my hair pulled back in a bun about 355 days a year), which I also find amusing because my wig is easily 6 inches longer than my bio hair and 3 or 4 shades lighter in color. I recently wore it to Pharmacy Day at the Capitol here in Phoenix (basically, it's pharmacists and pharmacy students meeting with legislators on the lawn of the Capitol building to discuss why we should be recognized as providers), and I swear that my wig actually took center-stage that day! LOL. One of my female classmates asked me a few minutes after I got there if I'd gotten my hair colored and said it looked so awesome, and I told her that I was actually wearing a wig. Suddenly, I had a group of women all around me asking me questions about where I got it and why...but all of them were totally surprised and showered me with compliments, and none of them had even noticed that I have a problem with hair loss, and I see a lot of these women every day! That's the other thing that makes me feel better about my hair. No matter how bad I think it looks, no one else really ever notices. We are our own worst enemies when it comes to convincing ourselves that we couldn't possibly go out in public with visible hair loss.

    In response to your concerns about Rogaine, I still apply the men's foam twice a day, and it doesn't make my hair look greasy or require me to wash my hair more often than every 2 or 3 days. And yes, there is definitely a dread shed, but it was still totally worth it for me for several years afterward. I've been constantly shedding since June 2013 when I started pharmacy school so it's hard to tell whether or not I'm still getting any benefit from it, but I just keep applying it anyway. I would wait to start it until after you're done nursing, though, because there is a slight chance that some of it could get systemically absorbed.

    Anyway, if you ever feel like talking or have any questions for me, just send me a message. And congrats on your new baby boy! That's so exciting! :)
     
  5. JustMeS

    JustMeS Established Member

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    Donna, your story sounds a lot like mine. Except that I am younger (23). I also got Androgenetic Alopecia unmasked by TE with scalp pain. Now it's getting really thin to the point where I have to consider hair replacement. I wish I had answers for the both of us. Scalp pain drives me nuts these days, how is that for you? Also our hair look similar but mine is maybe a little thicker than yours, but still way too thin compared to how it used to be.

    - - - Updated - - -

    Oh and I forgot to add, I'm also hypothyroid! Or I've been, mine flucutates a lot. I haven't had any recent blood tests but I have had hypothyroid before. I feel like what we're going through is very similar, which is weird, since I haven't come across anybody with the same symptoms as me; hair loss, scalp pain, hypothyroid etc.
     
  6. DonnaL

    DonnaL Established Member

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    Thanks so much for chiming in Sarah. I do desperately need that hug. I'm so sorry to hear about your mother. Not a day goes by that I don't scold myself for grieving over my hair when I should be thankful for the things I DO have. I watch my dad struggle with his chemo and how lousy he feels and see his condition decline and it makes me ashamed to be so distraught over hair :/

    But I digress...

    I know in my heart that one day I will accept this and move on, but I wish I was there NOW. I think I'd get there a lot faster if I had acceptable helper hair, but my piece looks so fake and I can't afford the higher end HH pieces when I have daycare to pay for, a fixer upper home, and other expenses that come first. I want to try a topper but I'm afraid that my scalp pain is going to make it tough to bear and I do worry about the clips causing further damage. I'm open about my hair loss with my friends and family and the few occasions I wore my wig I didn't try to sugar coat anything... it is what it is and while I don't mind that my friends and family know what's going on, I'd still like to find a realistic piece so I don't have to feel self conscious in public, wondering if people are staring at my hair. And oh the irony there... never in my life have I cared what anyone thinks about me... I'm covered head to toe in tattoos for crying out loud and have always had unique style. And yet HAIR s my breaking point? Ugh. I'm so ashamed.
     
  7. iisara21

    iisara21 Experienced Member

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    Hahaha! Hey, me too! :) Here's my pride and joy: 17037_1340648637279_2782587_n.jpg

    I understand where you're coming from. Honestly, the only reason I have a high-end hairpiece right now is because I bought it 6 years ago when I didn't have a ton of expenses, so I feel you. There's another site you can join called Wig Support where there's a huge arsenal of reviews and customer photos to help you pick a good wig/topper, and I swear I've seen some really awesome ones in the $100 to $200 range! Sometimes when I see those pics, I wonder why I spent so damn much on mine. LOL. You should check out that discussion board if you haven't already. It's both interesting and very emotionally comforting if nothing else. And I was worried about extra hair loss from the clips, so I ordered a Wig Band online, and it works perfectly. It's nothing fancy...just a special headband that somehow magically stays in place on my head all day AND manages to keep the wig from budging, too. No added pain, no traction loss...it's the greatest invention ever!

    Does your doctor have any clue what's causing your scalp pain? I can't imagine how crappy that must be. I've had hypopituitarism (hypothryoid, hypoadrenal, and low estrogen and progesterone) for about 13 years now, and it very often causes my scalp to vomit hair, but thankfully it's never been painful...just gross and disheartening.
     
  8. DonnaL

    DonnaL Established Member

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    None of my doctors can give me insight on the pain. When I asked the derm if he has other patients complaining about scalp pain, he just goes, "yep, some of them." THANKS doctor. All they want to do is throw steroids at you to combat the inflammation... cream or injection. Would it help? Maybe. Steroids are bad though- this I know. I've always declined them. I don't know what the pain is all about, but it's awful, and always comes with intense shedding. I'm going through my postpartum shedding right now and 3 weeks before the hair fall started the telltale pain came back. Grrrr.
    I have checked out heralopecia a few times. I don't get much time to surf the net with an infant at home unfortunately, which also makes it tough to research wigs.

    Side note... up to 500 on wash days now :/ Good grief please let this end soon!
     
  9. iisara21

    iisara21 Experienced Member

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    Ugh...I'm getting pretty close to 500/day on wash days myself. It's getting harder and harder to disguise the loss at my hairline with Toppik. Does this crap ever end? :( Anyway, I can't really say what I think might be causing your scalp pain because I honestly have no idea (and apparently neither do the researchers on PubMed), but if your doctor is recommending oral steroids, then yes, those come with a lot of adverse effects. Topical steroids have less systemic absorption, but you'll still most likely get at least a little bit of systemic absorption with a steroid cream. I'm thinking that an SNRI antidepressant like duloxetine (Cymbalta) could possibly help with the pain and anxiety, but probably not the shedding, unfortunately. It's FDA approved for nerve pain, which could also be the root of the problem, but if the pain isn't due to sensitive nerves in your scalp then it isn't going to have much of an effect, and it too comes with its own batch of side effects. Jeez, I wish I had better news for you! I turn into a baby if I have a bad headache for more than a few hours. I'm sorry you're having to go through this.
     
  10. DonnaL

    DonnaL Established Member

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    Boooooooo... still losing 500-600 on wash days Sara :( It's so so bad. Ordered my first topper to try (an easipart) and had to send it back because it was too narrow and hurt my scalp. I was afraid that a topper might be out of the question because of my pain :/ I was on Neurontin for a time, which is for nerve pain but it did nothing. I was taking 400 or 500mg per day. I've heard some people take as much as 900mg but I gave it up because it did absolutely nothing for me. One of the side effects can be hair loss too. Womp womp. I've heard tricyclic antidepressants can help with nerve pain also but again, one of the side effects can be hair loss.
     
  11. Roxy711

    Roxy711 Established Member

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    I have been losing hair for a couple years now and I am only 24 so it really sucks. I used to have very thick hair. I have not been diagnosed officially, so I don't know exactly what's going on. I shed horribly for the first year and a half and now it has slowed and I have hairs sticking up everywhere, but some are thin and sickly and my hair isn't improving. I know what you mean. I get embarrassed about it every day even when people try to convince me they can't tell. I definitely can. It looks so sparse all over. But here is the thing like yours! I examine my scalp pretty much daily and obsessively like I'm sure a lot of us do, and one day when I was looking at the back I noticed this small bald spot, maybe slightly larger than a pencil eraser. I freaked out, because my loss has been diffuse all over my head, and I had no clue what the hell this was. I kept feeling it. I haven't check it in like a month to see if it's still there but I still have no clue what it was. It looked kind of like yours but in the back. I thought it was too small to be an Alopecia Areata spot but I really have no idea.
     
  12. Jemsgirl

    Jemsgirl Established Member

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    Donna L, I just started the postpartum shedding about a week ago. So going through my third pp shed in 3 years. FML!!! It so sucks! I am driving back to Atlanta where I'm from to go to a hair loss salon. I'm hoping he can fit me with something that looks natural. All the pics he sent of clients looks really good. Have you thought about a hair loss salon? It helps to have someone who is experienced to guide you. I'm probably going to shave a good bit so I can bond. PM me if you ever need to talk.
     
  13. DonnaL

    DonnaL Established Member

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    I haven't gone to a hair loss salon but I do/did go to a salon that has 2 wig specialists. I haven't been there in probably 2 years because I couldn't justify paying the high price tag for them to cut my hair when I wear it up every day and HOPED I could find a wig myself at a fraction of the cost (wig consultation is $100 JUST for the consultation). I seem to be striking out on pieces myself though so whenever I can save up enough money I'll have to bit the bullet and go see them again. It's tough for me financially right now with paying for daycare and soon I'll be paying an extra $400/month for my own healthcare :/ (thanks obama! grrrr). So I am pretty much financially wiped, which sucks because I haven't yet found a convincingly realistic synthetic wig.

    On a side note... does anyone else with TE obsess over beau's lines in their nails? I have a deep one in both of my thumbs that's almost grown entirely out that coincides with when I had my son and I just noticed I have a very very faint one about midway down the nailbed on both thumbs again :/ It has to be from something that occurred about 2 months ago but I can't think of any kind of trigger that would have caused it. I seriously hope I don't have another TE waiting in the shadows :*(
     
  14. mia83

    mia83 New Member

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    Donna,

    i am too have been suffering cte for more than 4 years (im 32). i was wondering if you have any period of thickening up/better hair almost normal then high shed and get worse. then decrease shed and thickening again and continuous cycle of this? during those 4 years of cte before uncovering Androgenetic Alopecia.
     
  15. DonnaL

    DonnaL Established Member

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    My hair has never gone back to what it was. I go from one TE to the next and I've only had 3 breaks where I went to a normal shed in 4 years (the first time it was only a week and the next two lasted about 2 months each). Right now I'm going through ANOTHER TE shed. I was just beginning to taper from a nasty postpartum shed and now I've just started another :/ My hair has gotten better after a bad shed and then worse again, but never good or what it was. I figured out for myself that I had underlying Androgenetic Alopecia when I noticed that some areas had little regrowth, while others were plentiful with regrowth.
     
  16. mia83

    mia83 New Member

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    DonnaL, lets not jump to conclusion! Androgenetic Alopecia could only be 100% confirmed by skin biopsy. the little regrowth could be from the massive last shed you had. malnutrition/stress could slow down the regrowth process. i've been through CTE for almost 15 years now and sometimes regrowth took longer.i also had a couple of remissions where i had almost healthy looking hair (that lasted few months only before another shed)
     
  17. DonnaL

    DonnaL Established Member

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    I appreciate your optimism :) I guess I feel like if there was no Androgenetic Alopecia I should have seen more improvement in my regrowth where my hair is thinnest (front bang area). I have dense regrowth on either side of this spot right now, so I feel like that speaks volumes about the state of my hair. Unfortunately with one TE after another my hair doesn't get much time to catch up. My mom has thin hair (but more than me!) and has receding templed. Her father (my grandfather) is bald. So it's definitely in the genes.
     
  18. Kelly7

    Kelly7 Established Member

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    Donna, I'm sorry you're going through another TE. I hope it will end quickly and you have your fourth break of normal shedding...a life-long fourth break. :)
     
  19. DonnaL

    DonnaL Established Member

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    thank you kelly :)
     
  20. Kelly7

    Kelly7 Established Member

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    You're welcome Donna. I just read in your other post that your shed is up. That really sucks. :( Mine was better as well (150-200) for three washes, but that didn't last too long as it is back near 300. It's never ending.
     

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