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CTE?

Discussion in 'The Undiagnosed' started by ElPatoEllington, Nov 12, 2015.

  1. ElPatoEllington

    ElPatoEllington Established Member

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    Hi all,
    This is my first online post regarding my hair loss, but I've read posts from this site and others many times before as I searched for answers to my problem. It all started in April 2014 when I began a vigorous exercise routine. I lost about 20 lbs (quite a bit for someone who is 5 ft tall) and was spending 5 or 6 days at the gym. I noticed my hair loss greatly accelerated, but because my tracking methods weren't yet so honed (gah, I'm sad that they are), I'm not sure how much exactly but certainly well over 100 hairs per day. Eventually the stress of seeing piles of hair in my sink, on my clothes, on my brush, and clogging up my shower drain caused me to stop exercising completely in November 2014. In the meantime, I had already consulted with my GP and two separate dermatologists, all of whom were unhelpful and not at all empathetic, "It might be TE or it might be Androgenetic Alopecia or it might be both? Try Rogaine." I left each appointment feeling absolutely hopeless. They did run a full CBC and TSH to rule out hypothyroidism, anemia, protein deficiency, etc. Everything came back normal and the tests were repeated one additional time to confirm. I inquired about hormone testing (testosterone, estrogen, prolactin, LH) at the time but was told by one dermatologist that I "don't look like I have a hormonal imbalance" and it was shrugged off. I did start myself on men's Rogaine once daily, a biotin supplement, and a well monitored diet full of lean protein, omega 3's, and very few sugars, refined carbs, and dairy. My GP was so freaked out by my emotionality at my hair loss that he put me on Ativan 1 mg PRN to help me cope with the stress (I was indeed a very hot mess). Anyway, shortly after I quit my exercising routine I was overjoyed when my hairless slowed to a normal level! I attributed it to backing off on the exercise and starting on the Ativan.

    My hair shed at a very normal level until May 2015, when I was HORRIFIED when it once again began accelerating and by June was again at 125-150 hairs daily. Based on my disappointing previous experiences with my doctors, I decided to not seek additional medical advice from them and instead started myself on Nizoral 1%/ T-Gel, as I had noticed that a good portion of my shed hairs had "sebum plugs" attached to the root. I left the Nizoral/ T-Gel combination on my hair during each shower for 5 minutes in order to break up/ clear off the sebum build-up. I also started a prenatal vitamin. Lastly, I started taking a small dose of ibuprofen every other day because I was afraid that my hair loss might in some way be related to inflammation. My Ativan use PRN continued throughout this period because I'm a person already prone to anxiety and I was losing my mind. I was SO relieved when my hair loss decelerated in August to a normal level and remained so until LAST WEEK (November).

    You can probably imagine how devastated I am for it to once again be mid-day and I've already lost 97 hairs. I feel that my rate of hair loss operates completely independently of all of my actions and schemes to ensure that my hair stays on my head. The only thing I can think is that my menstrual cycle has grown pretty irregular and my husband and I are having some trouble conceiving. I've always noticed, even when my hair loss was within normal limits, that it is at its worst right before and during my period. I plan on visiting a different GP next week in order to more or less demand hormone testing. My husband will be coming along to fill in for me when I burst into tears 30 seconds into the interview.

    I don't know what else to do?? This recurring yo-yo effect is hard for me to handle. I'm at a loss and I feel like this is really tanking my quality of life :sad:

    ALSO: I don't know if this is common with CTE (if that's what it is), but my hair looks more or less completely unchanged from before my hair loss started. I've always had very lame hair: very thin, fine, and flyaway and I would think that losing 125-150 strands of it every single day would cause a noticeable difference? But my part is no wider and my ponytail is the same thickness..my friends and family accuse me of exaggerating and tell me to get over it. If I couldn't count I might think I was crazy too but I can and it's making me CRAZIER

    I truly appreciate any and all thoughts, suggestions, and feedback
     
  2. DisTressing

    DisTressing Established Member

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    Hello and welcome! I am a newbie myself, and this is a great place to get info from others who have been through the same thing. During the last one year I thought I was out of the woods at least three times with the shedding slowing up then starting again. I believe all of my hair loss problem were initially triggered by a period of wildly fluctuating menstrual cycles, some times coming under three weeks apart. There is no doubt in my mind that hormonal fluctuations can obliterate your hair. This gain and loss fluctuation with CTE is pretty common. And friends and family just do not get it. They don't know our hair as well as we do, and family or not, most of the world is utterly oblivious to the terribly obvious changes we see in our hair. The only advice I can give is to live your life! CTE is a huge chronic pain in the ass, but true CTE is self limiting as you probably know, and whenever it finally decides to resolve, provided there are no underlying isues that have not been caught and addressed, it will resolve.

    Your shed does seem on the lighter side to me, however you know your hair better than anyone else. With normal parts and a normal ponytail, sounds so far so good. Not to cause any alarm, I seemed to only lose on one side of my head for ages and my ponytail was normal. I couldn't believe I had CTE until the rest of the hair finally started to catch up until everything had become uniformly thin, except my temples were much worse.

    So simply keep an eye on it and ensure all blood work etc is okay, or if something comes up that needs to be addressed, it has to be corrected so as not to become a persistent shedding trigger. Does hair sometimes do anything it wants, regardless of what you do or don't do? Yes, and it's extremely frustrating! But hopefully you can take some comfort here :)
     
  3. Ccc

    Ccc Member

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    [QUOTE=SarahS;241693
    "So that said, don't let anyone diminish your emotions about your hair. It's your hair, and from my perspective, it feels like a loss. Yes, as I remind myself OFTEN, it is not the end of the world and it could be worse. However, I still feel like part of me died..."

    Sarah S
    I said that the other day I feel like someone's died and after I realised I've died inside and I'm desperately trying to get my old self back.. I feel very alone. No one understands. "It's just hair, just get on with it, you're depressed" I'm sick of hearing this sort of stuff, I didn't feel like this until I started losing my hair, if this was resolved I'd be happy, more than happy.. Over the moon! I'm so drained from it all now and feel like I can't talk to anyone about it. There are worse things yes, but this is the most traumatic, long lasting thing I've ever been through.
     
  4. Chelle7198

    Chelle7198 New Member

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    Sounds like me!

    Your hair loss sounds like mine, I can tell the difference in thickness in mine though. Nobody else can see it. I to have the plugs on my hair. I started losing mine 2 months after my diagnosis of cdiff. And haven't stopped it's been 9 months. Mine seems to fall or more when I'm in my period. I did lose a lot of weight rather quickly when I was sick. I've since gained it all back. All doctors said to me TE. I've seen them all and had blood work. It's very frustrating!
     
  5. ElPatoEllington

    ElPatoEllington Established Member

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    Thank you ALL for your thoughtful replies. It's somehow comforting to know I'm not alone in this, even though I wish that NONE of us were having to experience it. I know what you mean to say it feels like you've lost part of your former self… it sucks so much to have your mood depend so greatly on the number of hairs that you lose in a day! On an 70-80 day, I'm happy and busy and feeling like my old self, but on a 125 day all I want to do is lay in bed, as if moving will somehow provoke more hair to fall out. I wish "getting over it" was as easy as everyone seems to think it is :shakehead:

    I've noticed something that I'm wondering is common to people with TE/CTE: Do you notice that your scalp often feels sore/ irritated? I would attribute this reaction to the T Gel/ Nizoral usage, but it predates it considerably. It's like at night when I'm laying on my pillow my scalp hurts so much that I toss and turn all night. Sometimes when I push my fingers through my hair and feel my actual scalp it's burning hot. Is this a thing?? I googled it and found a few articles with mixed results.
     
  6. Chelle7198

    Chelle7198 New Member

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    The soreness

    I have time's that mine is sore, Only in one spot where I think most of my hair loss is. It will be sore to the touch. When it all first started it was worse. Now it just comes in spurts.
     
  7. ElPatoEllington

    ElPatoEllington Established Member

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    Soreness

    It definitely comes and goes. I take ibuprofen when it's at it's worst, even though I've read ibuprofen can cause hair loss. My hair loss obviously predates the ibuprofen... The soreness is what sort of makes me believe it might be related to inflammation. Who knows.
     

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