Hi Daydreamerin,
Thank you so much, I think only those who suffer from hair loss can understand. One Dr once asked me if everything else in my life is ok, because hair loss should not be such a problem, another one told me I should have seen other patients of him. It's not that I don't care for others but I should not suffer because of them? After so many years of this clearly I do have other problems, I don't like to go out, for ages I did not do anything outside with my children, I am depressed and sometimes I thought that I don't want to carry on. I not only live with this everyday but also with the fear my children are going to have the same!
Do you want to hear something funny? A while ago, for the sake of my kids I thought that I should go and see a psychologist. She goes: well I understand your concerns and pain, but see it like this. Now you know your burden in this life, others have cancer.
Is this a joke?! Our burden?! What the hell kind of answers are these? This actually makes me furious. I often wish I had cancer instead, YES I just said that. Why? Because that at least would be a FINAL diagnosis. It would either be terminal or it would be treatable, and there would be a certain treatment plan to follow. There is a clear path and understanding for the future. Additionally, people will actually show sympathy if you have cancer. They understand that it's a horrible disease to go through and will actually listen to what you say.
With this hell of a condition there is no path at all. I have no idea whether this sh*t might actually end at some point, or if it will go on forever. Every day I wonder if this is going to finally stop. These constant feelings of hope and disappointment rip apart my psyche. I still don't know WHAT EXACTLY has caused this, only that the pill must have triggered something. But it would be nice to know what the hell is going wrong in my body, because clearly SOMETHING is messed up. This is not my burden, this is something that was triggered by oral contraceptives and hasn't stopped since. If there was a way for this condition to suddenly arise, then there also is a way how to make it go away. That's just logic and the frustrating thing about this. Because no doctor seems willing to actually try and figure out the culprit. Instead they just prescribes stuff like Rogaine which (besides a long list of terrible side effects???) actually could make everything even worse.
By your psychologists logic nobody would be allowed to be concerned and in pain, because no matter what you struggle with, there will ALWAYS be someone worse off. Nobody in the western world would ever be allowed to cry even if they had cancer, several other deadly illnesses, a huge family tragedy and massive debt combined. You would always find someone in the developing world who is even more miserable.
But yes, this is just hair loss. Everybody bats an eye when you try to explain how this crap makes you feel. NOBODY understands or seems willing to listen. I haven't worn my hair open in SIX years. Do you know what that does to a young girl who used to love styling her hair every day? It doesn't make you feel like yourself anymore. And when you don't feel like yourself anymore, you don't want to go outside, you don't want to meet up with friends, you don't want to travel, you don't want to work, you just want to be your normal self again. Don't even get my started on washing my hair. I actually have to schedule my week according to my hair wash routine due to the severe anxiety attacks and mental breakdowns that I have afterwards. What the hell kind of life is that? I have tried coping with this for five years now, and I've reached my breaking point. I've started hurting myself because I can't take the emotional pain anymore. It actually HELPS to feel physical pain because then my emotional pain seems somewhat verified. Besides, hair loss itself can also cause physical pain. During the beginning of this I developed psoriasis and it itched so bad I wanted to cry. It itched so horribly and I was scared to itch because of the fear of losing hair. I actually have PTSD from this.
I really feel for you, you should be allowed to have a youth without having to go through this. How much hair do you lose a day, washing days? The worst of this is the fear not to know where it's gonna end...
Before this hell started I didn't lose hair. At all. I combed my hair every morning and night and there would never be hairs in the sink. I washed my hair once or twice per week and there always were about 30 hairs in the drain after that.. and that was it. After drying no additional hairs would come out.
After about one month on the BCP I was wearing a ponytail one day. And suddenly I noticed that hairs were loosely hanging down at the end of my ponytail. I pulled on them and shockingly discovered that they must have fallen out! I had never experienced anything like this ever before. That's the beginning of my nightmare... from that day on I was able to pull out about 60-80 hairs per day that were just loosely hanging down every morning and evening. After washing my hair hundreds of hairs would come out. I read that BCP can make your hair fall out so I stopped taking them after 2.5 months. But then everything got worse!!! I started losing 150 hairs per day and 500 or so after washing. Eventually it did slow down a tiny bit, but for the last 3 years it has just constantly stayed the same - losing around 80 hairs per day. After washing my hair once per week probably 250-300.
Since last year I've been using a hormonal hair tonic which has helped reduce the shed even further, but it's still not gone. Now I lose 10-50 hairs per day, it changes a lot. After washing them once per week I lose around 220-250 hairs.
The hair tonic contains alfatradiol which just further points to my theory, that the BCP messed up something with my hormones. I gave it 6 months, but it didn't stop the shedding completely. That's why I then went on my old BCP (which didn't give me Telogen Effluvium). But so far it hasn't helped, unfortunately.
Also if you haven't yet buy a shampo with ketoconazol like nizoral, I did buy the 1% version cause you don't need a prescription for it here, I've been using it 3x a week for the past 6 months and I think it has helped. Also make sure your ferritin is over 70. Normal iron levels are not the same for everyone.
I've already been taking a super high dosage of iron for the last 8 months, but it doesn't seem to make any difference whatsoever. While my blood work did show iron deficiency, I don't think it's the actual culprit. I've never eaten a lot of red meat or other food with lots of iron, so I guess my iron levels have always been pretty low. Yet, I never shed hair before this.