So how did I get here? I find myself asking myself that very same question on a daily basis. The year 1999 was the year that forever changed my life. My hair loss began after having stopped taking the birth control pill Loestrin FE. Later I found out that it is or at least was, an extremely high androgen index pill. Who knew? Certainly not me and certainly not my gynecologist who prescribed it to me.
So the following months after I stopped the pill my hair began to shed and shed like crazy. It was all over the place and coming out what seemed to be by the handfuls. I tried to find answers online, but I found nothing. I went to so-called “hair experts” also known as dermatologists who aren’t any wiser than the other dermatologists, but just know how to capitalize on the vulnerability of women. They were of no help either. Blood work… within normal levels. I felt frustrated that I couldn’t point to it on a paper and say “ah ha that’s it, my estrogen is low” or “there it is, I need more iron.” There simply was no explanation. I should point out that I also saw very expensive “hair experts” who told me I wasn’t losing my hair. What? Like they would know better than me, I’ve only live in this body… umm forever. Of course if I revisited those same doctors today they wouldn’t be telling me that now. This certainly isn’t one of those instances where you want to be right and say “I told you so.”
I resolved myself to the fact that it must be androgenetic alopecia (female pattern baldness) and as such treated it accordingly. I tried everything including Propecia, yep that’s right the pill thats only prescribed for men’s hair loss, I took. I also took it along with Minoxidil (Rogaine For Women) but neither one of those did anything for me other than leave me a greasy mess. Rogaine does work for some women, I just wasn’t one of the lucky ones. I was then told by a very respected dermatologist who treated women with hair loss, that women who have hair loss caused by stopping the pill sometimes do well by starting another low androgen index birth control pill such as Orthtricyclen. So I did that, going against what I swore I’d never take again, I restarted the pill, that in conjunction with aldactone, which is basically a blood pressure pill with anti-androgen properties. I had to try something. So we can fast forward to today. I will say that for most of that time leading up to the beginning of 2006 those treatments seemed to be helping. I continually lost hair but it always seemed like there was enough to get by. In 2006 I noticed a dramatic increase in shedding and it took off like crazy in 2007. The shedding I experience today on a continual basis is of the same magnitude as when I first stopped the pill, the difference is, back then I had a ton of hair, so there was some to spare. Today I don’t and it gets less and less by the day.
It’s interesting what you get used to, what you can learn to accept and adapt to with time. I no longer have dreams of having the hair I once had before this started. I just want it to stop falling out and to perhaps reclaim a little of what has been lost this last year. That would still leave me with thin hair but it would be enough to get by.
I feel stuck and trapped. I am stuck on taking Orthotricyclen, basically forever, because I can not chance stopping for fear of having an increase in the mass shedding I already am already experiencing. I am stuck taking 200mg of a blood pressure pill (aldactone), that can’t be healthy. But, I made those choices at the time to be proactive to give myself a chance to be able to live and enjoy life. Many times I’ve wondered the damage I may be doing to my body in the long term for taking these medications. And I wonder extra nowadays, because it seems that whatever benefits they served are no longer present. It is as if all at once the medications stopped working, only I’m stuck continuing to take them. It is a horrible feeling.
So that is where I’m at today. I am stronger than I ever thought I could be dealing with this. I seem to get by just enough, but my thoughts are always with what is happening. I think about it 98% of the day. It consumes me, depresses me and has caused me to cry so much over the years that I’m almost positive if I had collected all the tears it would be enough to fill a giant size pool.
I continue to believe that things will change, I find hope when it seems hope has abandoned me, and I pray things will get better.
Technorati Tags: aldactone, hair loss, minoxidil, orthtricyclen, propecia, rogaine, womens hair loss
September 13th, 2007 at 7:57 am
I was on Ortho at first, then my gyne prescribed Zoloft for depression and ambien so that I could sleep! Now that’s a cocktail…and not the fun kind! I’m now on Spironolactone and its a weird drug in the way it makes me feel emotionally and physically…(of course, i’m always the “one in a million women” that encounters that side effect)
What’s hardest is accepting the fact that its happening. We always have this “why me?” attitude about things, we feel perfect…we’re not mean people, we do good for others and work hard toward our own betterment and yet…we lose hair. The fact is there is no direct correlation…sometimes the best things happen to the worst people, and vice versa. Now I look back and say, wow, that was a tough challenge to face up to! I look at it as a sense of accomplishment…it didn’t kill me, touch wood! We’re always being challenged in life, one way or the next…think about the challenges you’ve faced up to now. Think about projects or work, life’s little kick’s in the behind…how do you tackle those issues now that you’ve faced the hair loss challenge? Were you passive or aggressive? You might be suprised with your answer!
Habits I picked up…
I had this habit of picking up the strands that shed and place them back on my head. Silly…I knew it wouldn’t take root but at least it wasn’t on the floor. I had a habit of collecting the strands and putting them into a bag. My mom saved my hair from my first hair cut and I wish I could do something with it…it would be a nice art project. I must have stared at the mirror and tried comb over styles a milion times. I inspect my scalp daily, hunting for new hair…hoping it would sprout from one of the dormant follicles. I’ve stood in front of the mirror with a razor in hand, thinking about why I should or shouldn’t just shave it off!
I know everything about situations consuming your thoughts elevating your depression and crying giant pool size amounts of tears…Why do you allow it to consume you? For me, I thought about mind over matter and decided to tell myself that “it’s under control”…i wear a wig, I get dressed…I may not always feel 100% put together but at least i’m not suffering from dry, frizzed out, colored or permed hair…Speaking of noticing things…there are so many full-header’s that don’t even properly manage their own hair. One woman sat next to me while getting a manicure and said, “you just look so perfect! Your hair is gorgeous, you look great!” I just blushed and thanked her but deep down I said, “if she only knew!”
Some days, I forget I wear a wig unless I get a reminder…the elements, or people’s stares as if they’re trying to figure me out!
Steer clear from negative thoughts and do something for yourself everyday…force those smiles when you look into the mirror…who knows, you might wake up convinced. I’m so so happy to have found this website. i’ve been searching for support groups like this for 10 years. I’m so glad I’m here…
September 16th, 2007 at 8:12 pm
You know how many times I thought to myself… I just wanted to shave my head so bad, I want this to all be over with already, after all that is the direction I’m heading in. I saw the video of the girl who made hair loss video montage of her hair loss story, and I think why can’t I be as strong as her.
Talking about habits… lets see I used the hair catcher in the shower drain for years so I could count ever hair lost in it’s entirety. I recently gave up this little addiction because I have grown tired of spending so much time counting, the number is always too much to count and it just makes me focus on it more. I do still find myself counting the hairs lost when I comb my hair, but the ones in the shower just go down the drain and never get counted. Lets see, I’ve showered in the dark to avoid seeing the massive shedding of hair and watching the hairs getting stuck all over my wet body, I’ve also combed my hair in the dark (a popular favorite of mine)
Julie, are you still taking Spironolactone? How long did you take it for or have been taking it for? I still take 200mg of aldactone in conjunction with the orthotricyclen.
Why do I allow my hair loss to consume me? I suppose because it is so out of control, I’m afraid. Afraid that it is only a matter time before I having nothing left. It falls out faster than I can vacuum it. And if that happens then what? Then I have to face my reality, my destiny. I pray for strength. Strength to deal with the hand I’ve been dealt, I pray for realization that life is more than the hair on our heads, more than a number on a scale, more than a scar or facial blemish. Rather, who we are is inside. What we put out into the world. I pray for this self realization because no matter how hard I try on my own, society dictates otherwise. The media aggressively attacked Britney Spears recent VMA performance. For what? A few extra pounds, what does that say to the youth of America?
September 17th, 2007 at 9:41 am
You know, you are stronger than you think you are. Really. Its the little steps you take that may help you realize, “It’s going, going, gone.” Tomorrow is another day, you make the choice of whether or not you want to be happy tomorrow. DO NOT ALLOW The time you spend obsessing, is time and energy that can go toward other things that make you happy. trust me…i was there so often and still find myself there. I constantly fight back the tears and the urges to obsess. Somedays, I notice myself getting prepared in the morning without my wig on…I’ll stand there in front of the mirror and see pattern baldness get wider and worse. My hair is so baby fine, if you grabbed hold of a strand it would featherly fall in your hands, without pulling!
Read this little anecdote: One day a massive flood covered the grounds of a small town. Several people were trying to escape the flood on cars, canoes and boats…they came across a woman and tried to save her…she told them to move on, as her faith and prayers were going to save her…as the waters and storms grew stronger, a helicopter came to her rescue, again she refused and continued to pray for God’s help. The flood consumed her home, and there she was on the roof with nowhere to go….but heaven. As she reached the pearly gates, there God stood before her. She bellowed, “The flood took our land, our homes…i prayed for you to save me…what happened?” God replied, “Lady, cars drove passed you and you refused, the people on the boat tried to rescue you…the helicopter was there to take you up and still you refused, you tell me what happened!”
So you see, maybe all this strength and prayer is giving you answers. Everyone on this message board is living proof! You just have to open your eyes and heart to receive the answer. Its easy to pray for it, but what steps are you taking to truly receive the answer?
September 17th, 2007 at 9:59 am
By the way, I am taking Spironolactone, just started about month ago. It costs a lot but I have no medical insurance anymore…I hated it because it was the drugs that caused my hair loss, and those stupid companies refuse to help me get a wig!? I CRIED FOR DAYS AND FOUGHT WITH THEM TO NO AVAIL. I want to start a revolution. If I could round up all the FPB, AT, AU women, I would march to those insurance companies and DEMAND they make changes. There has got to be something we can do to fight these people.
You know, I get so angry about television, I don’t own one anymore. I’m not going to allow others to dictate my appearance. To hell with it all! You get to a point where you get so angry, that it ironically brings peace to yourself.
September 17th, 2007 at 10:04 am
julie, Where you fighting with the insurance company or the pharmaceutical company that manufactured the drugs that caused your hair loss? Are you seeing any results from the spironolactone?
September 17th, 2007 at 12:51 pm
I was fighting the insurance company along with the doctor that prescribed me the medications - I took: Ortho tri-cyclen; broke out with acne and still dealing with those scars; ZOLOFT from being so depressed that I gained weight, had acne and started losing hair because of the Ortho; and then AMBIEN, I was so depressed, fat and full of acne that I couldn’t sleep from all the pain. I even tried accupuncture for hair loss and it didn’t work!
Last time I went to the doctor, just for a routine physical, a pharmaceutical rep was chasing my doctor when I had an appointment with her. I was so upset that my doctor actually talked to these people, they were cutting in my time! Ever since, I always hated drug companies and their practices. They act like they are doing good for the world, when in fact I think people are so controlled by the notion that they NEED medication to survive. I have the old-fashioned mentality that if you eat right, exercise, take care of yourself and take vitamins, you should be fine. There’s no need for medication cocktails. As for the drug companies, I wanted to work for one just to see what their practices were all about. I lost the job to nepotism, one of the doctor’s daughter got the job instead of me.
Needless to say, I never went back…if I go to the doctor now, I lay it out and tell them i’m not interested in what they have to say, I just need their script!
I know what I eat and I exercise, if I need to see a doctor, then I will see a homeopath. I trust in natural medicine, it’s been around a lot longer than these man-made drugs.
As for results, I haven’t noticed anything other than a lot of nausea, dizziness and irregular periods.
September 18th, 2007 at 7:13 pm
Hi Julie -
What an awful whirlwind of events you had to go through, I’m so sorry to hear that. I hear stories like that and I just get sick to my stomach. Doctor incompetence. That’s what it is. We all are raised to believe that the doctor knows what’s best for our body, take this, take that.. After all he went to medical school. Nothing could be further from the truth. Doctor’s are people to, and as such, they are not exempt from making horrible horrible mistakes at the cost of their patients lives.
I also tried Acupuncture for hair loss, it didn’t work for the hair loss but I do think it provides in enhanced sense of well being so that you mind and body are more clear, more balanced.
December 2nd, 2007 at 9:20 pm
It’s amazing how consuming this “hair loss thing” can be. I was 44 and my thick, beautiful hair began falling out. I had a pony tail like a horse’s mane which is now three years later the thickness of a Sharpie marker. I’m still not even in pre-menopause so the hair loss is not related to menopause. My hair loss began less than a year after my 15 year old daughter (who had thick curly hair) began losing her hair. Female pattern baldness runs absolutely no where in my family. My mother at 73 still has thick hair. My dad was bald. My mother’s dominant gene for hair should have “overridden” my father’s balding gene, but something freaky happened. My daughter and I are the only two women in a huge family of probably over 70 that have this problem. My daughter at 19 has lost at least 80% of her hair and will need some type of hair piece very soon. I have lost probably 60% of my hair which is very thin on top, extremely receded at the temples and I have lost most of the hair on my crown, above my ears, the back of my head, and now along the nape of my neck. I have tried everything with no success. I was so depressed that I ended up in a psychiatric ward which was probably the best thing that could have happened to me. I met a Dr. who said that if it truly was male pattern baldness that I needed to try medications for MPB. He provided me with several different ideas but would not prescribe the medications because of the potential side effects. On my own, I started taking Avodart (women of child-bearing age shouldn’t even touch the stuff) and after two weeks I noticed that I was losing less hair in the shower and during the day. I’m not sure it this is just coincidental or what, but I am committed to take this stuff for at least six months to see what happens. It can increase the chance for cervical, uterine, or breast cancer, which does not run in my family. I am willing to take the chance at this point because I literally can not live my life as a hairless woman. I will keep you posted on the “hopefully” success with the Avodart.
April 2nd, 2008 at 3:04 pm
Dear Y
I so know how you feel. The medications can be such a trap. You must feel damned if you do and damed if you don’t. We feel so desperate about what to do when our hair falls out. I saw a quote that struck me the other day. It said A man’s hair is his strength and a woman’s hair, her beauty. That means a lot to man or woman, though not so widely accepted by women to lose their hair.
I thought that I would mention that I have never really been on the pill(except for 6 days once, made me feel awful) and have lost 60-70% of my hair. The docter wanted to put me on stuff like rogaine and monixidle, but these kinds of chemicals wreck havoc on your body. I decided that it is healthier for me to go bald and learn how to live with attractive hair coverings and wigs than to fill my body with chemicals in the hopes that my shedding will lessen or that I will grow more hair.
I hear the sadness about taking these meds and feeling trapped, and we are when we feel that they are not doing us any good. Would it not be better to approach this in a way where we are being as good to our bodies as we can be? Like eating a wholesome diet and helping to keep the toxic burden off of our systems so that we can feel as good as we can without having hormones that are wacked out and cardiovascular systems that are manipulated by drugs? It just seems to me that this can’t possible be the answere. I am not happy about hair loss, but appreciate that my body has been so good to me all of these years and I want to honor her by letting her have her own balance so that she can honor me also, with good health. I try to feed my spirit a diet of loving and kind thoughts and live a kind life. I am not saying that you should do as I do because we all have our own way of handling things. I am just trying to point out another point of view when it comes to these strong medications that are not helping. If one feels that they are helping, than that is a different story. Perhaps your body could use a drug vacation so that she can reestablish herself. Personally, I feel that if my hair comes back it will be because I supported my adrenals, nervous system, digestion, etc with wholesome foods and nutrients rather than supporting the drug companys and the doctors. Put the money on good nutrition and nice hair items that make you feel good. I may sound bossy and a know it all, but I truely don’t mean to. I so understand that we will do anything to save our hair. It is just that some therapies are worse than others. I would trust the Earth Mother’s medicines before the modern day chemicals. This, I send to you with love for you are truely so good to all of us and have helped each and everyone of us with your hard work to give us this blog,and i so appreciate your sensitive kindness. Hugs Rachael Jean (RJ)
April 20th, 2008 at 11:13 pm
Your story is so sad. And so familiar.
I feel I was following a very similar path to you, and to so many other women on this site. Its an amazing thing, how the situation that can bring us into such deep despair can at the same time teach us so much and elevate us in equal and opposite amounts to our depression. I suppose its a perfect illustration of the duality that exists everywhere in life and in nature. I’m glad to say I found a regime that has worked completely for me, but it took over three years of serious searching and thousands of wasted dollars. I suppose in the end nothing’s wasted if it leads you to what you most need and the life experience you most needed to have. The natural program I’m following is giving me massive new growth all over my head and all I can say is I wish and hope this for all others on this site to find what really works for them. In the mean time I suppose my advice is to never give up. I believe surrendering to the situation is not the same as giving up. Hair loss is a distinct sign that something isn’t right in your body. Surrender to what IS is important so you’re not hurting all the time every day, minute by minute, but we owe it to ourselves and those who love us to keep trying to heal the imbalance within us that’s caused the outward symptom of balding. Love and best wishes to all. K.
May 2nd, 2008 at 6:41 pm
Julie,
Can you tell me what salon you go to in the Chicago area for the Reprieve Hair System? I’d like to give it a try, but I live in Michigan and I would have to make a special trip to Chicago so I want to make sure I go to a salon that is well experienced. How much does it cost and how often do you have to go back for maintenance or replacement?
Thank you, J.