New to alopecia and having a VERY hard time coping!

Hi all,

This is my first time posting to the forum. Today has been quite hard to handle. Im going to purge my story:

I started noticing significant hair loss a little over a month ago. I have vert thick, curly, dark hair and in between haircuts I would use sheering scissors in order to keep the bulk down. And so it began, a little over a month ago I used the sheering scissors and assumed for the following week the hair that was shedding was from the scissors.

I began to realize that a significant amount of time had passed and that surely the amount of hair I was losing was most definitely not from any at-home haircut. The hair loss went on until I frantically went to the doctor roughly 10 days ago, after noticing a few circular bald patches on the crown of my head. Thankfully, I was able to make and get an appointment that day, after forcing my husband to call for me because I was in blubbering tears for most of the afternoon.

The doctor was very non-emotional, basically telling me that yes, I do have alopecia but there isn't much I can do besides send away for some bloodwork to see if the hair loss is related to an underlying condition. I believe that I may have a thyroid condition, however I must wait to have this confirmed by my blood tests.

Unfortunately, I am in the UK and with the free health care system it takes longer than in the US. I have to wait 10 days until my bloodwork comes back. Even then, if it is an underlying condition and I am able to be treated for said condition, I will still have lost a significant amount of hair and continue to every day. I also will not be able to obtain an appointment with a specialists or dermatologist for at least another 3-4 weeks, which seems like an eternity.

Has anyone else experienced this? I am sure you all have,obviously. Am I experiencing Alopecia due to an overload of stress I am under? I am currently writing my dissertation, trying to find employment, attempting to make sure I can secure my place here in the UK (as I am an international student)in order to provide an opportunity for my husband to receive health care coverage since he is Type 1 Diabetic (if we go back to the US we have no insurance coverage, which is crucial for his wellbeing), and my mother is in the US battling cancer. It is an uphill battle.

I luckily can still hide my bald patches with my hair, but I found more spots today and it is just making me feel so defeated. I am afraid that as I find more spots and lose more hair, they will eventually merge together and I will start experiencing hair loss in areas on my head I can not conceal any more. I am just starting my career, in a very forward facing, customer relations field and I can't imagine being able to be successful in my work endeavors and confident in myself in either a personal or professional setting.

I just want it to stop falling out. I feel that I have no control over this condition and it may be one of the hardest things I have had to mentally overcome. I am attempting to be obsessively delicate with my hair: I only wash it two-three times a week with baby shampoo, only comb it when I get out of the shower, wear it up constantly, started taking silica vitamins, and have began to rub lavender oil on it three times a week.

If you have any words of wisdom, suggestions on 'home-remedies', similar stories, or really anything at all I would great appreciate it. If there are any treatments that I should speak with my doctor about that you would recommend that would be wonderful as well. I have a follow-up appointment next Wednesday (Aug 7).

Views: 2753

▶ Reply to This

Replies to This Discussion

Permalink Reply by Dielle on September 28, 2013 at 1:08am

I can't speculate as to whether or not your alopecia is related to an underlying condition or not, and I don't have any home remedies. But I can say that delays between seeing a dermatologist is not really going to affect whether or not you have regrowth and if you do how fast it will happen. My first bout of alopecia happened when I was 2. I lost all of my hair and then at 4 years old it all grew back, unfortunately it all fell out again when I was 11 and I am now 22 with no regrowth. As far as coming back to the US and health insurance, the Affordable Care Act has made it illegal for insurance companies to refuse coverage to individuals with pre-existing conditions so you would be able to get coverage for yourself and your husband if circumstances required you to return to the US (so one less thing to worry about). In your post you said that you are worried about the effects of your alopecia on your job which is heavy with customer relations. I am not in the corporate world but I am in medical school which involves dealing with a lot of people in very personal settings and to date I have not had a problem and I walk around without any kind of head covering (unless it is freezing!). In a way that didn't quite make sense to me at first, it actually has seemed to make it easier for people to relate to me and communication is actually improved. Although now I have come to realize that everyone has something about themselves that they are self-conscious about and because my alopecia is so visible I believe that I have become more approachable because people tend to assume that I am more understanding/accepting of differences. I actually think it was a plus in my medical school interviews as well because it disarmed people. I walked in with confidence and they had such a huge "good for you" response that they automatically joined my "side". Instead of grilling me they told me how well I pulled it off and asked about how it had affected me growing up (I had included it in my personal statement). Overall it has actually been a great conversation starter. So even if it doesn't grow back, I wouldn't worry about how it might affect your work because most people are very sympathetic and understanding and will want to help you out. I know that some people have actually gone and shaved their heads to get in control of the process so that is an option, but the way that I look at it is this. You might not be able to control how often or how much of your hair that you lose but you can control how you react to it. It is a long process for some people (it definitely was for me), but eventually you can come to the decision to not care about what your hair decides to do and be happy regardless of what happens. You are still the same person that you were before all of this started, and you can choose to live your life on your terms instead of letting alopecia dictate what you are capable of and what dreams you can chase. I let it hold me back for a long time, and it was so freeing when I finally decided to hell with it and did whatever I wanted to do. It is definitely possible that you could experience full regrowth, especially if you are under a lot of stress, I did once and I could again but I'm not holding my breath. Best of luck, you can do this!

Permalink Reply by Pam on November 9, 2013 at 12:27am

Hi Ashle: My son has struggled with this same issue since Feb of this year.  While waiting for an appt with a dermatologist, I took him to a Naturopath immediately.  He started a gluten free diet and started taking zinc, biotin, and a probiotic.  He started using a natural shampoo and deodorant, we got rid of everything with too many chemicals and scents in our home and put a few air purifiers in our home.  By the time we got to the dermatologist he was well on his way to recovery.  The dermatologist gave him Kenalog injections in the scalp.  I am happy to say, 9 months into this awful ordeal, his hair is healthy and only one bald spot remains.   I think different things work for different people, so don't be afraid to go with alternative methods.  Try to relax and don't get too stressed - make sure you have a good support system to help  you on bad days. I wish you all the best.

Permalink Reply by Ammandahh on August 4, 2014 at 2:47pm

Hi Ashle, 

I was the same as you, thick curly hair, I have lost it and my loss began 5 years ago. First, note that even if you have alopecia, you will not become bald in a year and even in a year, there is chances that your loss will not be visible. I can tell you that baby shampoo is apparently not good for adults hair, that what one of the dermatologist I saw told me. You can try organic shampoo, watching what they are made of (no sulfates, no paraben and no silicon should be in it, is is a bit of an hassle but it needs to be checked unfortunately). Also, I cannot tell you not to stress out, being stressed out myself all the time because of this hair loss. But you may need to speak to the gp if you really feel bad, he can maybe advise something, I have some pills made of plants that actually really work and help me relax and they usually don't. Believe, stress is a killer but our situation is like a dog who is bitting his tail: we lose hair, we worry so because we worry we lose more hair and it never ends :(

I also cannot tell you not to pull out your hair but it is good not to do it. You also may have an effluvium because of Chronic stress? Before thinking you have a condition, run the test and you will see. It can be anemia or vitamin deficiencies. Your loss is really new so first, you have bigger chance to find the cause and secondly, I think that curing it from the beginning increases your chance to may be recover your hair. I hope you are going to be ok but my advise is, do not give up as I did, find the right thing to do from the beginning. To finish, I know you don't want to hear this but believe me, if one day you have really less hair, there is solution to hide it and feel better...

Permalink Reply by Missellewoods on August 4, 2014 at 4:15pm

I has dx a month ago my dr was the same way non emotional gave me steroid cream that gave me headaches and sent me packing and said come back in a month. I had my thyroid tested and it was fine. much love darling I understand.

Permalink Reply by MamaDavis on August 4, 2014 at 5:26pm
I too feel your pain sweetie. I have been dealing with this for a few weeks now. I saw a dermatologist and they took a biopsy from one of my bald patches, I have several. Today I noticed another one right in front in my bangs. If it continues to progress I'm afraid I'm going to have to shave my head because the combovers is not going to hide it much longer. I also am doing a steroid solution I ru in my bald patches.twice a day but haven't noticed any changes yet. (Wed will be a week I have been using it.) Also the doc told me to take 3000-5000 mg of biotin, a good multivitamin with minerals, and be sure you get your protein 3xs a day. Not sure if any of this is helping, but I'm trying it all. I also had to ask my family doctor to give me something for the anxiety because this crying every day is so not me. At least here we are not alone and people really do understand how we feel. I'm tired of hearing well its only hair, but its my hair and it was long and thick and gorgeous, not so much anymore! Be careful pulling your hair up everyday, I was told the less strain you put on it the better.
Permalink Reply by Missellewoods on August 4, 2014 at 6:36pm
Your so right about the strain girl my dr said oh I can chemically straighten dye it ect.
I know all those things are bad.
I dye my hair blonde only once since my alopecia started
My hair dresser said it's all internal
You so right my combovers don't wrong
That why until I find the right wig that I can afford
It's hats
Permalink Reply by Stressed on August 4, 2014 at 8:13pm
I hope the hair loss diminishes. My alopecia has been very aggressive, in 3 months I lost 90% of my hair, half my eyebrows. I was crying everyday. Until I finally decided to buy wigs. I still cry but most times I forget I'm bald. At first my thyroid hormones were normal but I insisted to have it repeated out of desperation and it came out I'm hypothyroid too with very high anti TG meaning hashimotos. I'm 2 weeks into my levothyroxine and steroid meds and I'm hopeful that there will be new hair growth. If it doesn't grow at least I feel better with my thyroid corrected.
Permalink Reply by cathy on November 21, 2015 at 11:25am

Good morning, I am also new to this. I just found out I have alopecia, and its only been 3 months and I now have a lot of balding areas that are getting hard to cover. everyday taking a shower is a stressful event my hair loss seems to be more, My pony tail is now the size of a toddlers. I'm sorry your going threw this. There is no cure.

Permalink Reply by gldean1988 on April 6, 2017 at 10:11am

Your story is one I recognize, and I am really sad to hear you are going through this.

I went through it myself, but I also would not wish it upon anyone.

I remember losing clumps of hair every time I showered, and I came to dread bathing/washing my hair because I knew it was going to happen. I dubbed it "The Shower of Doom." I think all hair loss sufferers know The Shower of Doom. 

All I can say to you is that it's not easy, but know this, no one is as concerned about it as you are. You might go somewhere and think everyone is staring, but it's simply not true. Take a good look at yourself and focus on your strengths. Do you have a nice smile? Nice skin? Bright eyes? Focus on what makes you beautiful because believe me, there are things that make everyone beautiful.

Also, do you take care of your body? This is what helps my confidence (I work at least five times a week). After a good work out, I always feel good about myself. 

Find your confidence. Inside our brains are what is called mirror neurons that allow us to pick up on the emotions/behaviors of others. If you have exude comfort, you will make others comfortable around you. If you are uncomfortable in your own skin, you may on a subconscious level make everyone else uncomfortable that you encounter, too. 

I find working out helps me a lot to manage my stress (all stresses, not just with my alopecia). It makes my body look nice, so at least I got that going for me! If it wasn't for yoga, I have no idea how I would have made it through that time. I'd actually go to my yoga class sporting my bald head and fantasize that I was some kinda monk devoted to their art. 

And, I know what you mean about the control because that's the worst part. Sometimes we like to think well "maybe it's my diet/lifestyle," but I think that's just because we like to think we have more control than we do. It's not your fault. It's just something that happens. I sometimes think my alopecia is a message from the universe that says I don't have to control everything and that is OKAY. 

Also, prospective is important. Everyone you know, even strangers, is going through something. It may not be alopecia, but there are many other things like illnesses, death, self-hatred, poverty, break-ups, etc. You think everyone is as fixated on your problems as you are, but they simply aren't. People are worried about themselves. 

And, it's easy to be negative all the time. We have inside our monkey brains called a "negativity bias" where we are more strongly affected by negative events than positive. We actually have way more words in the English language for bad emotions and complaining than we do for positive ones and gratitude.

It actually takes more work to be positive, but I think it's worth it (to find peace)

Here's a quote that I like

"Light must come from inside. You cannot ask the darkness to leave; you must turn on the light." ----

I interpret it as you have to create your own light in spite of the darkness around you. So despite the chaos around you, you have to work to find peace within yourself. 

Good luck! I hope you figure it out, but know many know your struggle. 

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service