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An Unexpected 'hello' To Hair Loss (59 - Type: Undetermined)

Discussion in 'Tell Your Story' started by Jeannie, Oct 11, 2018.

  1. Jeannie

    Jeannie New Member

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    Hi Everyone,

    And so glad to have found this forum - have been searching high and low for somewhere I can share my story and read about others' experiences, as I don't have women around me to discuss this with. I also live in a very small town (well large village really) in southern Ontario, Canada, so no expertise here either.

    Story started when I was diagnosed with 'pre-cancer' - yep, there's such a thing here! Cancer cells found but not active. So aggressive cancer treatment started with pills - but had to stop those as they made me too ill to function at all. Been on 3 different methods since and happy to say, all clear now, after 18 months.

    However, after stopping the heavy meds at the end of the first month, I had lost 3/4s of my hair (of which I had so much it had to be heavily thinned every 3 weeks - it was like a hair hat!)

    Visited the doctor and she poo pooed it stating 'it's your age' - alopecia - just telling me to count the lost hairs and if over 300 in a day, to report back - prescription for female rogaine and that's it. No support - just "it happens, it's your age". That didn't help at all as I had spent the previous 3 weeks collecting handfulls of hair from my clothes, pillows, shower, bath and hair brush. By the time I visited the doctor the losses had slowed to normal losses (a few hairs here and there) so, of course there wasn't a count of anywhere near 300 a day - more like 30 to 50 by then, but she kept insisting it was female pattern alopecia and that I needed Rogaine to stop any more losses.

    The Rogaine was expensive and useless - after 3 weeks the bottle refused to foam and just dribbled liquid - $85 bucks down the drain - that was supposed to last 3 months, to say nothing of how horrible it left my silky/shiny hair (dull and sticky).

    I don't need to tell you how devastating it was to lose my luscious hair in one month, now leaving my pink scalp totally visible - I had to wear scarves and hats everywhere (still do).

    Apart from secretly balling my eyes out when no-one was around - I looked for the closest hair loss centre - and voila, there was one in town! Visited and the first thing the 'expert' did was to damn all the hair products I was using and educate me what the ingredients in most does to the scalp. Big learning curve. Then he did a scalp analysis and found most of the follicles blocked, so provided Capilia scalp products I needed to use to clean up the remaining hair and scalp.

    I also wanted to have a wig made, but he wanted me to dye my hair to match one of the wigs he had on offer. Now why would I want to dye my remaining (and wonderfully bright white) hair to match his wigs? And doesn't dye act negatively to the scalp and hair?

    Also, the products were incredibly expensive (for me anyway) and horrible to use - my remaining (and highly valued to me) hair, before using the products, was shiny and soft. After using, was grainy and my scalp was itchy every day, even though it was washed every other day.

    Needless to say, I didn't go back to that hair loss centre, and am now looking for a wig shop that can make me a wig - even that is proving difficult.

    Anyway, that's where I am in my hair loss journey. I don't seem to have lost any more hair than occurred the month after I stopped the chem meds - so I know I'm lucky compared to some - but when I look in the mirror, the loss that happened last year still stings today (just vanity I guess).

    That's my story - this is the first time I've shared this - apart from with hubby - but even he doesn't know about my sobbing, or how deeply this hurts.

    Sadly, sharing doesn't make it feel any better - I thought it would.....
     
    #1 Jeannie, Oct 11, 2018
    Last edited: Oct 11, 2018
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  2. mem0307

    mem0307 New Member

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    So many of us understand your struggle. Thank you for being brave and sharing. We are all here for you. Don’t ever forget how truly strong you are
     
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  3. TinaM1968

    TinaM1968 Established Member

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    First congrats on being cancer free! Hair loss is so hard to deal with. I too heard from several drs the famous lines it’s your age. I was 45 and was under severe stress and surgery when mine started. We try and do all the right things like going to our drs when we see it starting (isn’t that what all the websites say? Catch it early for treatment?) however they look at us and say your fine. I know with me I know what it normal hair loss for me and when my hair isn’t right. You may get the occasionally dr or natopath that will say oh it’s reversal we can fix it but they never really delve into your personal situation to figure it out and after the commons causes or hair loss may be addressed they move on and say Rogaine. That’s when you know you wasted value rime and hair on them. You say they derm said your follicles are blocked? I read a story about a women ( can’t remember the site I’ve been to so maybe over the past 5 years) who used rogain and it did the same thing to her. Itchy dry red blocked follicles...her hair dresser actually found it on her and helped. She stopped Rogaine immmediately and started treating her hair and scalp to unblock the clogged follicles and calm her scalp. It was inflamed due to the chemicals in rogain. Maybe this is what happened to you?
     
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  4. Jackie Oddie

    Jackie Oddie New Member

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    Hi Jeannie I live in Dundas Ontario. Are you close by. Jackie
     
  5. Jeannie

    Jeannie New Member

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    Thank you for the congrats. It was only confirmed two week's back. Hubby couldn't understand why I wasn't dancing around. After 15 months of being scared every day, worrying for how worried hubby was... lack of sleep. I don't need to go on, we've all experienced these and other feelings. I still don't think it's registered - I'm still numb, as I was 15 months ago (silly I know).

    For the irritation, well, I can't say for sure it was Rogaine that caused the itching and horrible hair, but the quality of hair definately improved on stopping Rogaine. I now use a 4.4 ph shampoo, as recommended by my hairdresser and a conditioner that doesn't touch the top of my head, just the sides and length and things have improved rapidly.

    I'd say this to those who have just started to experience hair loss, count how many hairs you are losing in a day (hair brush, on your clothes, floor, towel, bath/shower) and if you are losing more than 300 a day, GO SEE SOMEONE. Just don't wait until the loss has slowed, as you'll end up with the comments that we got - it's your age.

    With everything I've read, and learned, I know my hair loss was definately the result of the chem meds I took for a month - and 18 months later, I can start to see hair growth in the lean areas. It's slow, but it wasn't there 6 months ago.

    I do though, wish there were hair loss experts dedicated to women for and by women......
     
    #5 Jeannie, Oct 14, 2018
    Last edited: Oct 14, 2018
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  6. Jeannie

    Jeannie New Member

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    About two hours from you - am in Port Perry - east of your area :)
     
  7. Farrah711

    Farrah711 New Member

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    Welcome!
    I am in Barrie Ontario Canada.
    There is a Wig Store here it actually has 2 locations in town.
    I had my hair analysis done through them at a lab. I think its called The Wig Shoppe with a location on Mapleview and a location on Quarry Ridge. The owner is a type of Tricologist. The hair analysis showed me my vitamins were not being delivered or absorbed due to taking a Proton Inhibitor drug for Acid Reflux.
    I am now getting infusions and hoping my hair fall will slowly stop.
     
  8. Farrah711

    Farrah711 New Member

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    Oops I posted u a reply from Barrie but i sent it to someone else
     
  9. Jeannie

    Jeannie New Member

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    Thank you Farrah - Barrie is very close so I'll take a visit to one of the Wig Stores there - see what they can do for me !
     
  10. TinaM1968

    TinaM1968 Established Member

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    I went to mostly women for my hair loss thinking they would understand more and really help figure things out. Not so..mine came on a little too quickly I think for it to be Androgenetic Alopecia and thinned fast after so many wrong turns by drs. Congrats on the regrowth!
     
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  11. Simona1986

    Simona1986 Member

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    Sometimes i think the wigs are the only sure solution. Rogaine loses the effect over time, are good and bad periods, but more bad with a lot of shed, anxiety and tears. We are always obsessed about the hair... if will shed, if will grow, if the treatment will work etc ...
     
  12. TinaM1968

    TinaM1968 Established Member

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    Same here I tried rogain a bit when I first noticed an issue i had a bad reaction so it’s clearly not the route for me. I have thought of trying saw palmetto to stop any conversation I may have. Little nervous though not sure if I could ever do a wig. I even hat wearing hats
     
  13. Jeannie

    Jeannie New Member

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    When the loss had just happened, and I hadn't learned to fluff and do the comb-over, to try and hide the scalp (didn't do any good but made me feel better), I wore a wig - and it made me feel 100 times better. I had bought a cheap wig, that was nearly the same colour as my hair, and had my hairdresser trim it to the same style I normally wear my hair - it worked, although a little uncomfortable - but I guess there is the 'getting used to' phase.

    Happily I don't go out much so didn't have to wear it much.... but I'm still going to go and have a topper made - I've never been good looking and relied on having beautiful hair, so vanity is pushing me here :) I know that much!
     
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