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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. DonnaL

    DonnaL Established Member

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    This is long, so bare with me. I haven't been active on here in a while, so I have a lot built up that needs to get out.

    I'm 32 years old. I'm nearly 4 years into my CTE (with burning scalp pain), which has now revealed Androgenetic Alopecia. In the first 2 years I had back to back CTE's with no breaks. In the last 2 years I've had a couple 2 month breaks in my shedding cycles, but never long enough to see any kind of improvement. In the early days I was switching birth control pills often (doctor and pharmacy switching between yaz & yasmin and between brand & generics for both). When we decided to try to start a family I went off birth control and months later started the most horrific shed I've ever experienced (upward of 800 on wash days). Not that it mattered because hair loss was already in motion.. this just made it much much worse. I've had 3 pregnancies in the last year and a half with 2 early losses and recently gave birth to one amazing little boy. I am hypothyroid but have been on meds for over a year. My dosing changed frequently with the last pregnancy and was watched closely because of my history of loss. It's really no wonder I went from one TE shed right into another. My hair is so sparse right now that Toppik and my attempts to conceal the thinning is pretty obvious, especially in bright/natural lighting. My worst thinning used to be right in the front/bang area, but now the rest of my part has caught up, and I'm really having a hard time getting concealers to blend in with those sparse hairs to make a semi-natural part line. In addition, the male pattern M has all of a sudden surfaced. I never really had temple thinning, and now all of a sudden in the last few months my temples are clearly receding (thanks mom and grandpop!). It's so bad that the thinning in the temples is making it impossible for me to use concealers in the middle/bang area because I can't blend it into the sides. I definitely have miniaturization, and tons of it. There's no denying it now, and the temple thinning just made it very clear that my hair is never going to get better... that ship has sailed. I'm currently 3 months postpartum (13 weeks) and 3 weeks ago my scalp pain returned and in the last week my shed has increased, so I am assuming this is the start of the dreaded postpartum shed (my hair loss had been normal since mid October but I had TE shedding throughout my pregnancy). I am clearly no longer "getting by" and probably should have been in wigs long ago, but I can't bring myself to do it. I tried them before and gave up because nothing looked natural on me :/

    I am in a bad place, mentally. I have anxiety attacks daily. Every time I look in the mirror my heart sinks into my stomach. I have to force myself to eat because the anxiety makes me nauseous, but I know I need the nutrition for nursing. DH urges me to go on antidepressants, but I know that many have hair loss as a side effect, so I can't. The hormone changes from pregnancy/birth are probably exacerbating my existing anxiety. There's days the scalp pain is so bad that the second I walk in the door with my son I have to lay down and have my DH take over for the remainder of the night because I'm incapacitated with pain and anxiety. hair loss is robbing me of my life, and worst of all, it's robbing me of being able to give my all to my son. I'm terrified to try anything because I'm clearly sensitive to hormonal changes and I can't afford to go into any more TE's brought on by hair loss treatment products. I have a consultation next week on getting a copper IUD (non-hormonal) because I'm scared to go back on hormonal birth control. I just don't know what to do with myself now. Where do I go from here? How do I get over this and move the heck on already? I want more than anything to say "F@%* it!" and shave my head, put a wig on, and move on with my life. I have become obsessed with hair and jealous of every other new mom who can just enjoy being a mom. I'm disgusted with myself and that this means so much to me. That I can't get over it. People have REAL problems in life beyond petty physical appearances and here I am crying over hair. My father, for example, recently turned a bad corner after fighting stage 4 cancer for over 2 years... these are real problems. Not hair. Why can't I just be thankful for the things I have in life and stop worrying about the things I don't have?

    Thanks for listening.
     
  2. JustMeS

    JustMeS Established Member

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    Hi Donna!

    Sorry to hear you are feeling so low. But never say that losing hair is not a real problem, because it is, or at least can be to some people who go through it. When you lose your hair you kinda feel like losing your identity with it. Hair is for women about being feminine and attractive, so losing it takes away some of your very womanhood. It can have a ripple effect on most parts of your life because losing confidence and looks is a very hard thing to go through. It's already so hard to be a woman in 2014, with all that pressure to look and be perfect, and on top of this we have to go through losing a part of us? Of course there are worse problems in the world than losing hair but it can still be very traumatic for women and I think you should allow yourself to feel bad about it and not feel guilty for feeling that way. At some point we need to start healing but it may take more time for some and that's okay. Hang in there and I hope you feel better soon!
     
  3. DonnaL

    DonnaL Established Member

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    Thank you. That's what I keep telling my husband... "Bare with me. I'll get there... eventually." And I know I will one day, I just wish I could be there now. I'm tired of grieving over my hair.
     
  4. Jemsgirl

    Jemsgirl Established Member

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    Omg I feel like we have a very similar story. My hair loss started really in March 2012 after having my 5th miscarriage although I really wasn't sure if that was the trigger. There were other triggers. Then I got pregnant with my now 21mo old son hair was great during the preg then lost more than 50% after. Also have hypothyroid and was managed thru that pregnancy. I also have two blood clotting disorders. So had to be on blood thinners the last three pregnancies. And I just had my third baby in Nov. waiting for the dreaded pp shed to occur. But my hair was awful during this preg. A nightmare. All my regrowth from the previous pp shed fell out. Fell out like nothing too. Barely touch a short hair and it comes out. I cannot tell you how many days I have cried over this. I wanted desperately to be a mother again after my daughter but had recurrent preg losses. Finally have my son and I lose my hair??? WTF???!!! Can I ever catch a damn break??? I feel what you are feeling. I finally caved and bought my first wig but I hate the way it feels. I'm feeling miserable about the whole thing and it's made the last 19mo of my life a living HELL. I cannot imagine Hell being much worse. And to top it off I have zero emotional support from family. I am so ALONE!!! It's a compromised existence and I hate it! So I commiserate with you! Hormones have effed my life. I know this sounds horrible but I would go back and tell myself before the miscarriages and two healthy pregnancies to just enjoy life as it was and keep living it that way. Maybe God was trying to tell me something with all the miscarriages. I guess he knew how effed I would feel with hair loss. I'm ready to shave too and just go out in public that way. Say eff it. Wish there was a better solution. I still cannot believe in 2014 there are no hair loss solutions. Oh you can wear a wig but it feels like ****. So what other options are there? Sorry today was bad for me.
     
  5. DonnaL

    DonnaL Established Member

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    I'm sorry Jem... it's a tough bag, isn't it? Every single one of us here knows about postpartum TE, and yet when you're trying to grow your family, you just have to accept that it's coming, and it's devastating for someone who already has hair loss issues. When I stopped birth control and with each pregnancy loss I had I KNEW another TE shed was coming... another several months of scalp pain and clumps of hair falling out of my head. Sometimes knowing is just as hard as not knowing. With the birth control, I never thought that switching pills would cause TE's, but now that I've had CTE for so long and have seen what a change in thyroid meds and pregnancy/loss has done to me, I'm certain that switching triggered some TE's. I am obviously sensitive to hormone changes. Thyroid aside, I have pretty much done this to myself. That's a hard truth to accept. Of course hindsight is 20/20. If only I could go back in time *sigh*
    I don't know how big of a role my thyroid/meds played in my TE's but my dose had to be changed right up until my 2nd trimester, and seeing how I had TE shedding almost nonstop until my 9th month, I have to assume that it played some part. My last TE stopped right before my son was born.
    Right now I shed about 150 on wash days (I shed less than 50 on wash days when my hair loss is normalized and I wash my hair every 3 days). When I went off the pill to TTC I was shedding around 800 on wash days so I fear that this is just the beginning of my latest TE :/
     
  6. KimbaS

    KimbaS Established Member

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    Please ladies, try rubbing grapeseed oil onto your scalp, it WILL NOT make your hair greasy. It's supposed to work as well as minoxidil for hair growth, no side effects and smells really good. It has natural anti DHT properties so it should help with the hormonal hair loss. This combined with 6 collagen pills per day has completely stopped my hair loss after 4 years of awful shedding. Both are so much cheaper than the hundreds I've spent. Now for some growth.......
     
  7. Linwt

    Linwt Established Member

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    DonnaL, I'm so sorry that you're going through this while trying to enjoy your new little man! I will be joining both you and Jem in the pp shed in about a month, and literally am counting down the days, which is making it much worse.

    I wish that you had more answers and solutions, four years is far too long for all of this and yes, it seems the yo yo-ing must have just kept the TE going for you, but maybe there is still hope, I just read a lot of the positive stories in this forum and some ladies are having a good effort with Spironolactone and rogaine.

    I myself am still battling the "do I start rogaine or no?" Question, and do I start now so as to have the dread shed with my TE or do I have my TE and then start rogaine to just have another shed?

    My new derm that I was waiting until last April to see indicated that she thinks almost everyone has some form of Androgenetic Alopecia so it is usually always a positive YES to te answer is it Androgenetic Alopecia, but she believes in rogaine and to put it on everynight on damp hair.

    I had a bad night last night though, after seeing my mother have pretty decent hair last year, after her years of hypo issues and pretty normal hair thinning, well she is pretty well shiny bald now, I think all the new meds she's on since then have done her no good, blood thinners, cholesterol and heart meds, and now sleeping pills for some reason. Anyways it just confirmed that this is indeed
    in my family.

    Anywho ladies, stay strong and we'll get through this! Good luck and we should keep in touch during the pp shed. (I get a bonus from my work every year, I might get a wig at that point, what did you get Jem?)

    Oh and I'm having the worst scalp sensations to date, itching, burning, tingling, prickly... You guys get that?
     
  8. DonnaL

    DonnaL Established Member

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    Yep, all of it. The burning is what makes some days really unbearable, but I also get a crawling sensation that drives me up the wall. The areas I feel the crawling is where I usually thin next, like a really annoying crystal ball for hair loss.

    It's unfortunate that we should have to be bothered with this while trying to enjoy our new babies. My DH keeps trying to take photos of my son and I and I keep hiding because I just look and feel terrible. How awful is that? hair loss keeping me from having photos with my son :/
     
  9. mycurlyhair

    mycurlyhair Experienced Member

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    Hi Donna I remember you from when I first came on the forum is 2012 (seems like a lucky year for scalp pain!) Have you ever had a biopsy or are you seeing a derm? I also had the crawling sensations when this all hit for me. Luckily all that is gone and just scaling now. How is your loss? Is it diffuse or any patches? Congrats on your little boy too!! Oh, I have been using raw honey on my scalp and it really calms it down. Fresh aloe plant is also good and a really good brand of Omegas help too. I take Nordic naturals.
     
    hairlossmaniac likes this.
  10. DonnaL

    DonnaL Established Member

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    I asked my derm for a scalp biopsy a number of times and he wasn't interested in doing one. He said "the treatment options are the same regardless of the type of hair loss you have." This is the 2nd derm I've seen for this. I got nowhere with the first and only went in again because back in September I found a couple small bald spots and was worried that I had Alopecia Areata or a scarring alopecia. Unfortunately I think I have a combination of problems... CTE with Androgenetic Alopecia and perhaps some Alopecia Areata. The new derm wouldn't say for sure if he thought my spots were Alopecia Areata or not but said he didn't think they were scarring. He said "it could just be a very thin area of hair loss and I do see hairs in the bald spots with some broken hairs." Useless. Derms are useless. My loss was entirely diffuse until these 2 small spots showed up- one in July and another in September. I watched them closely but I always have them covered with concealer so it was tough to see what was going on except on wash days. My hardest hit area was just the front and neck areas, but in just the last couple months my whole middle has thinned out and so have my temples... which is crazy because it happened during the last couple months when my shed was stabile! I thinned out real bad on my right temple, which is the side I part my hair at and it really makes it look so much worse. The other day when I washed I found some 3 inch sprouts up front so I think those are either breakage from my flat iron or the hair from the bald spots that filled in a little. I don't think I can see the 2 bald spots I used to have anymore, can you? I tried to capture photos of my sprouts. For the life of me I can't decipher if it's new growth or breakage, but even if it is new it's not nearly enough!!

    As for putting anything oily or gooey on my scalp or hair, I can't do it. My hair loss is much worse than most of yours and the hair is too fragile to tolerate being pulling by sticky honey. I also have serious OCD with oil and greasy things, so any kind of oil is out. I only wash every 3 days and my scalp gets plenty oily in that time... it drives me insane.

    Ugh.. here are some pics :( Sorry, anything taken in my bathroom looks weird because my bathroom is yellow and my phone camera doesn't know how to handle the lighting. The last few are November 2014 and 2 from September 2013 for comparison. What's weird is last summer my front was REAL bad... you can see in the pics. Now I think I had a small amount of regrowth there because I don't think I have that long line of baldness when my hair is in a ponytail, but the sides are awful. Who am I kidding? It's all awful! The concealer is hardly ever completely washed off my scalp which makes it tough to see what's going on. The first photo you can see my scalp looks dirty from it. The 2nd set is with lots of concealer on.

    Guys..... GUYS!!!! Look at this! I am freaking out here !!! :( MY postpartum shedding keeps gaining momentum too.. every day I count higher numbers.

    Jan2014-3.jpg Jan2014.jpg Jan2014-2.jpg July2014.jpg Sept2014.jpg nov2014.jpg Sept 2013.jpg Sept 2013-2.jpg
     
  11. DonnaL

    DonnaL Established Member

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    Here's my sink and my hair from some of my worst shedding in 2013

    sink 2013.jpg Sept 2013-3.jpg
     
  12. mycurlyhair

    mycurlyhair Experienced Member

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    Looks alot like mine. What concealer do you use? I am scared to use them because I think it will irritate my scalp more but at some point I am going to have too. My scalp is also like that in where I cant touch it, move the hairs, etc...The honey though is not tight or pulling on the hairs like you would think. If it did,couldnt use it. I have been using it about a year and only thing that helps my scalp. This is a couple months ago, Ive colored it since.
     

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  13. DonnaL

    DonnaL Established Member

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    Your part actually looks MUCH tighter than mine. The last photo is from over a year ago. You can see through my hair now. I use Toppik right now. It doesn't bother my scalp much unless I really hammer it on. Hairspray on the other hand... eek.
     
  14. mycurlyhair

    mycurlyhair Experienced Member

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    Thanks! I think mine is worse now too. I thought about trying dermamatch, have you tired that one? Is the toppik easy to get on?
     
  15. DonnaL

    DonnaL Established Member

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    I haven't tried Dermamatch- that one is something you rub into your scalp right? I usually use eyeshadow on the edges of my part and front, and then sprinkle on the Toppik behind it. I think it blends better that way. There's a learning curve to Toppik, but it doesn't take long to figure out... it's just a little messy. The "dust" gets everywhere. I like the fibers because they kinda add volume too. I've heard good things about Bumble & Bumble dry shampoo too but I haven't tried it myself.
     
  16. mycurlyhair

    mycurlyhair Experienced Member

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  17. Linwt

    Linwt Established Member

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    Hey DonnaL,

    I think your hair looks pretty good, but I know your feelings, and also photos are sometimes off. I have a whole date organized photo album to compare monthly. I start PP shed in about a month, already hair all over my 8 week baby, one randomly in my mouth today. What a slap in the face.

    I cant remember if you were going to start Rogaine or not. I'm finishing up nursing in a few weeks and then starting.

    For what it's worth it looks like you have beautiful hair and still have a pony.
     
  18. rva207

    rva207 Established Member

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    Hi, I don't have SD or scalp irritation, but I do use Dermmatch and I have to rub really hard to get it to transfer from the applicator to my scalp so I just wanted to warn you. The directions say that can happen if you have hard water (which I do) and to rinse your scalp with distilled water, which I won't do ;) It doesn't really bother me, but would think it could be too harsh for someone with any sort of scalp issues, especially if you have hard water. I tried Couvre once (it's a liquid you apply with a sponge), but I didn't like it as much as the Dermmatch. Just thought I'd share!
     
  19. mycurlyhair

    mycurlyhair Experienced Member

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    Thanks so much! :) I wont be trying it then. I can't even comb my hair at times it will be sore!
     
  20. DonnaL

    DonnaL Established Member

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    I'm on the fence about Rogaine :/ Part of me wants to try it, but I hate messing with my hair because of the scalp pain, plus I only wash every 3 days and I'm worried the Rogaine will make my hair too greasy. Add to that that I can't afford another TE shed...
    PP shed started for me about 3 months on the dot. The scalp pain came first during 2nd month PP and a couple weeks later the shedding began. I am just praying it is short lived. I'm afraid to type these next few lines in fear of jinxing myself but so far my PP shedding hasn't been as bad as when I went off birth control (up to 800 per day). I expect however, that it's because I have much less hair TO shed than I had back then! I'm back in headbands daily for now :/ At least with the headbands I don't have to worry about people staring at my sorry cover-up job.

    - - - Updated - - -

    aaaaaaaaaaaand just like that my shed increases. FML. I've gotta keep my mouth/fingers shut next time!
     

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