Three months down--the report so far

Discussion in 'Success Stories' started by MiaFlores, Apr 8, 2010.

  1. MiaFlores

    MiaFlores New Member

    I'm in my mid thirties and I lost about 50% of my hair in the five-six months I was off birthcontrol (second half of 2009...I wrote an emotional screed about my story/situation in the Rants forum).

    I know some of the hardest things about going through hair loss is that feeling of being robbed by something out of your control, and the fear that it may not stop, may be hopeless. And, while it's helpful to know you're not alone and that others out there are supportive, these forums can in some ways be depressing. Afterall, everyone posts when she's suffering/losing, few post when things are improving (tentatively). Fewer yet post successes. Therefore, I'm sharing my "tentative hope" report and to be honest about the good AND bad news.

    First, let me say what so many others have: Be your own advocate. Inform yourself, and if the first doctor you talk to won't take you seriously or won't address the cause of your issue, get a second opinion. And a third. My former gyno is a fine doctor in many senses, but if I'd taken her word alone, if I'd not gone out for a second opinion, I'd probably have barely any hair left by now. Since then I've worked with other doctors who have been great.

    So...here's what's been going on:

    Treatment
    -----------
    * In late December, my GP put me back on NuvaRing (I know some rail against Nuvaring vis a vis hairloss, but whether it's a plus or minus depends on your own body chemistry and hairloss cause. My hairloss is tied to low estrogen and fluctuations in estrogen, and possible premature ovarian failure.Your situation may differ.)
    * In mid January, we added 200 mg (slowly ramped up from 50) daily and men's Rogaine once a day (I can't managed 2x, so we've started with one.)
    * I continue to take Hair/Skin vitamins and Iron

    In the Process...
    ----------------
    * Shed continued through January. Then in February (about 3-4 weeks into the Spiro and Rogaine regimine), the shed *increased* for about a month. Horrible, painful, nailbiting time.
    * During that same time, a few little stubbley hairs started to appear around the hairline and in the temple patches. At first I worried it was breakage, but no, it appeared to be the start of some new hairs!
    * My GP and Gyno told me to use NuvaRing continuously unless I have breakthrough bleeding, then take it out for a minimal period. Since going back on, I have had breakthrough bleeding on one occasion (this month). I took the ring out for barely two days--long enough to start a moderate period--and returned to it. So far, that two day break doesn't seem to have had too bad an effect.

    Where it stands now:
    ---------------------
    * Positive: shedding has slowed WAY down--from about 200 a day at my worst to between 10 and 60 a day, probably averaging out to about 25-30 per day. (Hope this stays well!)
    * Positive: Skin has improved considerably. Some light breakout around "cycle", but little.
    * Positive: the hair around my hairline (front and back) and temples is filling in considerably--most of it is between 1/2" and 1-1/2" right now. I pulled my hair back off my face in a ponytail/bun for the first time in 8 months yesterday! (Sure, I had sort of a "halo" in the front where hairspray failed to keep those baby hairs slicked down, but beats the nearly-bald temples I had before!!!)
    * Negative: The hair at the crown has been much slower to respond.
    * Positive: ...but, in the last 2-3 weeks there finally does seem to be some darkening/filling at the crown (so I'm holding out hope that it'll fill in more in time--doc said it usually fills in from edges to crown--like a bulls eye!)
    * Negative: I'm still wearing a partial wig anytime I wear my hair down. I cut my waist/hip length hair to bra strap length, but I'll probably be in the partial wig for a long time because even best case scenario, it'll be years before new hair is long enough to blend in.
    * Positive: But my hair *is* getting a more dense at the root, even if I have an "AGA/TE mullet" for a few years. ;)
    * Negative: still need Toppik almost daily and whenever I'm not wearing the partial
    * Positive: needing a lot less Toppik than three months ago.
    * Negative: My eyebrow hair is suddenly growing a lot faster. More grooming sigh. Also had to pluck my first-ever mustache hairs, but it was only a couple.
    * Positive: I've lost the hormone crash weight.
    * Positive: So far, I've been tolerating the spiro pretty well. I do have to be a little careful to monitor my fluid intake when I work out or exert myself (once or twice my BP dropped a little and I felt woozy until I drank a big bottle of water or some caffeine), but otherwise....
    * Positive: Since going back on the estrogen (ring), the depression problem has gone away. I get the blues still, absolute, but not all the thoughts of killing myself.
    * New Information: Two weeks at my annual gyno exam, my new OB/GYN tested me for vitamin D deficiency and discovered I also have that. Am now on a mega dose of D until it recovers.

    What's Next
    -------------
    * For now sticking with the program. Trying to be hopeful that it will continue to improve and that one day I won't have to pepper my crown or part with toppik, and that one day further down the road, I can get rid of that wig.
    * Once hair growth reaches an acceptable point (if it does), GP says we'll look into things such as lessening the spiro dose or Rogaine frequency/dose.
    * My new Ob/Gyn is advising and helping me think through what to do (if anything) in terms of checking for the possible fertility issues I have (which would likely be tied to the same issues that caused the hairloss), and she seems sensitive to my hairloss issue/concerns: willing to address how we could minimize hormone shock and hairloss if I do explore these options.

    So that's the report from the front. Emotionally...this remains difficult. I'm trying to be positive, and most days I am. But, even though I'm seeing improvement (for which I am grateful), it's been such an ordeal, that I'm not always able to be upbeat and I'm not confident yet about the final outcome--I keep hoping there's not another shoe waiting to drop. Also, I still feel very ugly all the time--like people are staring at me, that they'll figure it out. Even when I know I look good (when I'm wearing the partial, for example), I feel self-concious. I don't feel "free" like I used to--my hair is so much shorter than it used to be, and a lot of it isn't rooted on my own head, so it moves differently etc. I'm less minute-to-minute obsessed than I was three months ago, but I still worry daily/every time I walk out of the house about covering my thin hair, and I'm not comfortable telling even close friends. I realize a lot of this has to do with the trauma of the past 9 months--these feelings of ugliness and fear and loss will linger for a while--but I hope in time I'll be able to feel a little bit pretty sometimes again.

    So...there itis. My epic tome of the good, bad and ugly. I hope someone finds it helpful to read. Thanks for listening!
  2. ForeverBlue

    ForeverBlue New Member

    I agree with the fact that coming on here can be depressing. I use to feel somewhat better, knowing i wasn't the only one going through this. Now, for some reason, it just makes me feel more hopeless to read all these stories. Lets face it, most of them don't end well.

    I now spend my days locked away in my house, crying, and fighting the urge to kill myself. I feel too ugly to go out. It got so bad, i started to have horrible panic attacks everytime i tried to go out, so i just don't go out anymore. Problem solved. But i ask myself, can i hide in the house forever. If so, what kind of life is that. I'm so lonely, and depressed every day. I have no human contact at all anymore. Only the internet. I don't want to see, or talk to anybody. I feel like the guy in the movie Cast Away ( except i'm not on an island, all by myself ). This is not how i want to live the rest of my life. I just want it to be over.

    I've thought about just getting a wig, and moving on. That just won't work for me. For one thing, i can't find a decent looking wig anywhere. They all look awful ( and i'm not looking at cheap ones ). Most of them have been over $1,000.00 dollars, and they still look bad. I always had super thick hair, and all the wigs i look at are thin. So i'm sure everyone will know it's not my hair. I've always been very insecure in social settings, so a wig will just make that 100 times worse. It's just easier to hide in the house.

    I miss being able to go shopping, go to the park, go to a restaurant, go to a movie, or just walk down the driveway to get my mail ( can't even do that now ). Looking out the window makes me feel anxious. I feel like i've been given a death sentence.

    Glad to hear you're doing better, and i hope it continues. You're lucky, I wouldn't wish this nightmare on anyone.
  3. annamarkowitz

    annamarkowitz New Member

    Thank You Mia for the update! Yes, I agree that if there are women who have been on the forum earlier to complain about their hl and then found a solution, they need to post the forumlas that worked best for them. AND foreverblue, you and I are in the same boat. I am comingn to realize that I will have to get a wig, am still in the denial state. Have you considered seeing a therapist?
  4. ForeverBlue

    ForeverBlue New Member

    Why is it that people think you need therapy because you're upset over losing your hair. I don't know many women who would be happy over the fact that they were going bald. Just because i'm losing my hair, that doesn't mean i need therapy. I think i would need therapy if i wasn't upset !!!!!!!!!
  5. NoraBe

    NoraBe New Member

    question about spiro

    so it took 3 months for your hair to stop shedding on spiro? Can I ask how old u are? I'm wondering if I need to add rogain to my regime...I'm 34 and am shedding crazy, I have many posts with my story & am desperate & want my dr to up my dose of 150mg of spiro to 200mg
  6. lisaangeline

    lisaangeline New Member

    Foreverblue, I think people might have suggested that therapy would help not because you shouldn't be upset by an obviously upsetting situation, but to help you deal with this without resorting to suicide. That's what is scary, we are worth so much more than our hair and our looks, so people get worried when they hear talk of suicide. Doesn't mean you're crazy, but just that you deserve some emotional help.
  7. whoops

    whoops New Member

    give us some good news

    Hello i agree why we all moan about how bad things are lets put down what is working for us.

    I have found less hair on the bed and floors since i went to my ayverdic treatment and still take the calcium pills plus my hair is a better colour then it was. The bald patches i cant get back i dont thing so was looking at neografting - anyone done that for women yet.

    The scalp is still sticky so i put lotion to make it grow and i see some small hairs but i have always seen that it doesnt make much difference.

    I had a hair cut today i wanted a fringe but after a year and a half of thinking of it i look awful and why as i have no crown hair - i look like i had a bad comb over - my own fault for forgetting i have no choice at 37 i have to wear my hair up like a child till i die that is the only way i can hide my loss.
  8. Rabbit

    Rabbit New Member

    We definitely all need to hear good news and advice! :eek:

    @ MiaFlores: I'm in my late twenties, and went off birth control in 2009 as well...and have lost so much of my hair too. I started losing hair while I was still on the pill, but I didn't make the connection until my hairdresser said something to me. My gyno was also ok at just being a plain ol' gyno--haha--but when it came to anything more...she really let me down. It was her fault that I ended up on a completely outdated, high-side effect BC pill in the first place (my pharmacist suggested that she must have gotten a pay-out from the drug company to prescribe it, because he said no one is on that brand anymore)...And, I have yet to find a good doctor that has any ideas. My current general practitioner is a great guy, very caring, and we're doing blood tests...but he really has no ideas for me. I was devastated last year by the hair loss, but I kept up this secret hope inside that it would stop once my body got used to being off the pill--nope. It's just gotten worse and worse. It really is getting hard to feel pretty, and I'm getting more and more scared about the day when I have to go topper shopping. Like you said, emotionally...this is hard. But positive support helps so much! :>

    @ ForeverBlue: Thanks for your comments on my post! I'll write you back there too...but I just wanted to say on this thread, that when I first joined, the Network helped me feel sooo much better about the hair loss too--it was like all the support and similar stories gave me a high, and made me feel like everything would be ok. I was at the point where I was crying all day--every morning, every night, every time I looked in the mirror. I was so depressed about this, I felt like there had to be something wrong with me...after all, it is just hair, right?! Well...I've learned that there's no such thing as "just" hair...since I've been losing it, it's like my hair means everything to me. I used to worry more about my clothes and makeup than my hair...it always looked good, and I just took it for granted. Now, every morning I shower, then style my hair the best I can, and just get more depressed about it every day. I stare at everyone else's hair and envy the crap out of all the beautiful, thick heads of hair I see every day at school and work. So eventually, for a while, I kind of avoided the Network...every time I logged in, it was a reminder that everything *wasn't* going to be ok. So I definitely know how you feel. I just started college, and since I'm 10 years older than many people there, I feel even more self conscious about all this. Regarding therapy--I've been going to a psychologist weekly for about 8 months now, and I would recommend therapy (with someone good) to anyone. She has helped SO much. We actually very rarely talk about my hair, but just in general, she has made a big difference in my life. I have clinical anxiety and panic attacks, so I can really relate with you not wanting to leave the house. But sometimes, getting out into the sunshine and forgetting about all the bad things, is just the best thing in the world, as cheesy as it sounds!! :)