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No Known Cause Yet And Hair Loss Is Getting Worse. I'm Struggling

Discussion in 'The Undiagnosed' started by Megan, Nov 9, 2017.

  1. Megan

    Megan New Member

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    Hello. I'm a 22 year old female. I started having hair loss around 7 months ago from a medication, after going off of it, my hair loss quickly stopped after a month and a half.
    I have been going on and off of medication for months since then trying to treat my severe chronic migraines. My hair started falling out again in October. Shortly after I went off of all my migraine medication, thinking this was causing my hair loss.
    It has only been about a month, however I have lost about 50% of my hair in this time, and it it rapidly getting worse. I am pretty sure I am now losing about 300-600 hairs a day. I have been tested for thyroid issues, standard iron tests, autoimmune disorders, hormone testing, and have had a examination by my dermatologist who said my scalp looks fine. There is no hair loss issues in my family.
    During this time I have also noticed some heart issues, which i am being checked for, which has made me extremely anxious and stressed. I was also planning my wedding for next October, however it has been pushed back indefinitely because I anticipate losing most of my hair before then.

    I have been growing my hair out for years, trying to get "mermaid hair" and now that I finally have it, its falling out. My fiance's nickname for me is even "little mermaid" because of my hair. My hair is one of the few things I like about myself and I just feel so lost.

    I am suppose to get a scalp biopsy next month, but i've heard they're not very accurate.

    Any ideas as to what is going on? Could it still be meds related? Stress? Why is it getting worse? Any advice at all would be appreciated.
     
    #1 Megan, Nov 9, 2017
    Last edited: Nov 9, 2017
  2. Meliss9

    Meliss9 Member

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    Hi Megan. I know exactly what you're going through. It's ruined my life as well. My life revolves around washing my hair my hair it's sickening. No one wants to hear me and I don't even want to hear myself repeatedly talk about it. I've tried everything except for rogaine and any meds. It's funny bc I also suffer from
    Migraines and refuses to take the meds for it bc of side effects (that they don't tell you!) I do all natural stuff. All my blood work is fine as well. I had low vitamins d and iron. No one sufffers from hair loss in my family as well. So I supplement I take viviscal professional hair supplements and won't stop it. I've used onion juice mixed with castor oil, I use rice water now. I won't ever use box dyes again just all natural henna.
    This all happened after my babies. My hair doesn't grow back like it should I feel.... this has given me such a depression. So we can talk if you want bc I as well feel like I have no one that gets me.
    Mel
     
  3. Meliss9

    Meliss9 Member

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    Also btw what was the name of your migraine med? Was it a beta blocker for blood pressure that also helps with migraines?
     
  4. Nancyco

    Nancyco New Member

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  5. Nancyco

    Nancyco New Member

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    I feel the exact same way as well. everyone gets mad at me saying that i am crazy but i am not . I have been on the Belgravia Minoxodil 4% for 9 months now and to be honest i feel as if my hair is even thinner than before i started . I am so depressed. I am 53 years old.I pay lot for the Belgravia stuff i am wondering if i should just switch to rogaine form 5 Percent.
     
  6. cariocabr

    cariocabr Member

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    Its so frustrating passing through this. Nobody understand us, think we are overeacting. have been dealing with hair loss since 2015, like a CTE. II tried all the meds and the treatments to reduce it, but no results so far so good. My hair is getting thinner each year and my self-steem is going away... no mood to travel, go out. I have hope on stem cells therapy, sooner it will be launched in Japan...only a new follicle will be able to reduce this chronicle shed.
     
  7. Megan

    Megan New Member

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    Hello! Thank you for replying! The original med that caused my hair loss was a beta blocker: Propananol for my migraines and anxiety.
    I've literally been on so many migraine meds i'm not sure what could have caused it, but the most recent ones were nortriptyline and amitriptyline. Both were helpful for my migraines and well as anxiety, however the side effects are too much for me I think.
     
  8. Megan

    Megan New Member

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    I also know the struggle of having people get mad or frustrated with being upset when talking about hair loss. My family always sighs when i bring it up and yell at me to stop concentrating on it. My fiance's is the only one who is supportive and has even volunteered to shave his head if i lose all my hair so we can be bald together haha.
     
  9. Meliss9

    Meliss9 Member

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    Aww that's sweet.. my husband says he'd love me bald still... r u in NY? There's my last option of the secret wig look it up and it looks so real...That's a last resort..they also tell me that I'm causing my hair loss by focusing only on that.. they say I'm ruining my life..: I just purchased this and have been trying it.. it's all natural and u use it 2-3 times a week.. I use it twice and I also use onion juice and castor oil maybe once a week.. no more dying only pure henna and indigo.. let me try to send a pic of this stuff and shampoo hold on
     

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  10. Meliss9

    Meliss9 Member

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    I also use the shampoo.. sorry for doing it twice I
    Not good with this my phone has too much memory
     

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  11. Megan

    Megan New Member

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    Thank you for the shampoo suggestion! I am actually in Ohio, but i've had my biopsy and they found seborrheic dermatitis and TE. I've since started using a prescription shampoo and my hair loss has drastically decreased. However, now my lashes and brows are falling out. My doctor is adamant i dont have any of the Alopecia areata stages, but i'm in doubt. Not sure what my next step is now.
     
  12. Meliss9

    Meliss9 Member

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    I use nizoral at least once a week for maintenance for the dermatitis.. idk y I keep getting this burning scalp lately.. been having such anxiety lately bc the front of my hair is disappearing very fast and in light I hate that it looks seethru... Even now same day washing it gets more sesthru and oily as day progresses. Idk if I shld check out wig store.. idk if it'll ruin my existing hair
     
  13. Megan

    Megan New Member

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    I dont know if it will help but i was told to use my shampoo at least three times per week. If i try to go longer than a few days, i notice more hair loss until i shampoo again.
    I know how you feel about the anxiety that comes with hair loss though. I do feel like the anxiety is only making things worse for us.
    If you do try to go for a wig, i think it would be ok as long as you use a wig cap over your hair, but apparently dermatitis can really wreak havoc on the hair paired with anxiety. I hope your scalp feels better soon, and that you are able to be more relaxed, maybe it will help with the hair loss! <3
     
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  14. Meliss9

    Meliss9 Member

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    Thanks. I try and calm myself down, but I have to wash my hair tonight cause I have henna in it. The thought of washing and seeing what it now looks like wet and after gives me anxiety... I did use it twice a week for I think 8 weeks now it's just maintenance.
     
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  15. Kat

    Kat New Member

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    Megan, What's the name of the hair loss shampoo that you're using that you think is working. I'd love to try it!
     
  16. Megan

    Megan New Member

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    Hello! I'm using Nizoral/Ketoconazole 2% shampoo and it is literally like a miracle worker for me. I got it as a prescription from my derm. :)
     
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  17. Teresa D

    Teresa D New Member

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    I feel for you. Have you tried taking any B vitamins or other supplements? I had some improvement after taking them even though my blood tests were normal.
     
  18. Potplantlover

    Potplantlover New Member

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    Hi Megan, I'm new and going through a similar thing . I just posted in another thread . Was previously diagnosed with telogeb effluvium that they said was likely down to my migraine Meds but now I'm not so sure as the issue went away for a couple of years even though I have always been on the Meds but has now returned ( worse than ever ughhh)
    I'm on a cocktail of Meds to control migraines of propranolol , amytriptyline and topomax . I take all three Meds twice daily . Basically they said any Meds could be suspect in hair loss and if was a matter of trial and errors to see if I could pinpoint if one was causing it . Unfortunately any drop in any of the Meds causes huge relapsenin daily migraines and no change in my hair loss and my neuro says there are no other alternatives for me.
    The latest derm I saw this week seems to think its probably not my Meds and had taken three biopsies which I'm a little worries about getting an accurate diagnoses from as he took from the temple area.
    Anyway I am not sure what to suggest except to let you know your not alone and I'll certainly let you know if I hear anymore on these Meds . I really hope things improve for you and congrats on you engagement
     
  19. KayJane

    KayJane New Member

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    Hi megan! I’m a fellow Ohioan! I am wondering how long it took for the shampoo to work for you? My derm gave me the same shampoo and I only used it twice because I had massive shed both times I used it and it fried my hair. But now I’m wondering if I should give it another go. I totally feel your pain. I’m not planning a wedding but me and my bf are getting more serious and when we talk about marriage my mind automatically thinks “I can’t get married with my hair like this”
     

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