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Feeling so frustrated. I still have no answers as to why my hair is falling out! Can anyone help or is anyone having a similar experience?
Hi everyone,
I have been experiencing hair loss for nearly 2 years now and am so frustrated after exploring many many avenues to try and work out why this is happening!
I first started experiencing hair loss when I noticed more hair falling out in the shower in my hands than I would usually have. I started noticing hair in my bed on my clothes everywhere through the washing when I went to hang it out. It just started to get thinner and thinner and has increased as the time has passed. At first it was most noticeable to me near my part at the top of my head and I started to worry about it and study it more and more in the mirror. I ended up counting hairs, until it became unbearable.
I don't have round complete bald patches but noticeably thinning hair all over which has gradually gotten worse and worse. I went to my doctor firstly who ran tests such as Iron, thyroid etc which all came back clear. She sent me to a specialist (dermatologist) who couldn't diagnose me as such he gave me possibilities such as Female pattern balding or Telogen Effluvium. He gave me a letter to send to the Ministry of Health here in NZ which made me eligible for a wig grant and I was sent on my way with still no answers. I have even gone to a Naturopath to try and get answers, but I still have none. I have been back to the doctor on numberous occasions to get blood work done worried that there is some underlying cause for this hair loss!!
I have scoured the net for hours trying to get some answers.
My hair loss is definitely all over my head. Thinnning all over my scalp. I have lost over half of the amount of hair I used to have and it is getting see through on top!
I have brought wigs although it is definitely a mission to find one that is looks right and I feel comfortable in. Since I am in New Zealand where I am we don't have wig stores, or beauty supply stores so I buy online (which is really hit and miss considering I can't try them on! ) I am waiting for one I have ordered similar to my natural hair colour.
The other problem I am having is whether to shave it off or not!
I find it a daily struggle to get my bio hair to a standard in the morning where I feel comfortable to walk out the door. Since it is so thin it is hard to style and have daily rituals such as, sitting in front of the heater to air dry it! (believe it or not! ) as my hair is also curly since it is thin I can't blowdry it or it just turns to frizzy whisps on my head!. It messes very easily in even a light breeze and goes greasy by the end of the day so I have to wash it every morning!
I know I am lucky compared to many on this site as I do have some hair, however it is so frustrating not knowing why this is happening and not being able to put a label on what is happening to me. I know this sounds horrible but in a way I wish it would either all fall out or all grow back just so aybe it would make it easier for me to make a decision about whether to shave it all off! I am so torn and so frustrated!
I am ranting now but I am at my wits end!
Is there anyone out there in the same boat as me or anyone who could give me some advice??
Thanks for listening anybody who has
There are so many people on here that are so strong and wish I could find my strength too :)
Love Jen xox :)
Replies to This Discussion
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Permalink Reply by Lexi on
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No advice. I have been losing my hair since 2008. Just getting thinner and thinner, and Ophiasis Alopecia. I had all the blood tests, and no answers as to why. I really didn't have the money to keep searching for a reason as to WHY. I just have to accept that this is the hand I have been dealt. I would never shave my head. That is just me. And I don't wish it would just all fall out, either. As straggly as it is, I am thankful for what I do have left. The shedding is cyclic. Starts and stops. Stops for a few months. Starts again. Oh, the slightest breeze and it is all over the place, right? And hair hair everywhere (except my head lol)!! In the bed, on the pillow, on the towels, everywhere in the bathroom. On my clothes...you know about all of this!!
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Permalink Reply by Jennah on
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I really shouldn't have said I wish it would just fall out! that is a terrible thing to say and I am thankful too for what I have. That was said out of pur frustration. What is Ophiasis Alopecia? sorry if I sound silly for asking? It's in a way comforting to know I am not the only one and great to have people such as yourself to talk to :) Do you wear wigs or just wear your bio hair (lol) Yup I know hair everywhere but on your head! I can relate! :) thanks for responding Ireally appreciate you taking the time. I am about to give up myself trying to find a reason. It is just so draining and as you say costly!
Take care,
Jen :) so
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Ophiasis Alopecia is hairloss starting at the nape area. The nape area and around my ears has no hair. To add insult to injury, I also have what I probably feel is female pattern hair loss as well. Double Whammy as it were!! I can't ever wear my hair up ever again, because the back neck area is naked. No wearing a ponytail, because the nape area shows, and looks all crazy, hairless. Just doesn't look right. So I wear my bio hair just hanging down, straggly, always the same, lots of baseball cap wearing...LOL...from someone who never wore a hat in her entire life...I am NOT a hat person. Never say never, right? I have wigs, but always feel they look wiggy. Anything will have more hair than I have, right? Looks like too much hair. But sometimes I just feel so much better with a wig, like I actually look Pretty? Well, decent and presentable. But in FL, it is so hot and humid, my straggly hair sweats like crazy under the baseball cap, I can't imagine under a wig. Plus I need to sun protection now, anyway. Like your doggie. Like some of your music. Macklemore is good, and you have Breath Carolina's song....love that song.
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Oh that is interesting I have read up a bit on Alopecia and hadn't heard of that one. Oh that must be hard for you :(
I am not a hat person either, but have been forced, as you to wear them! lol urgh!
Yes I find it strange when putting a wig on to have so much hair when I am used to the little bio hair I have! it's bizarre isn't it! haha! and I totally agree when I wear a wig I do feel pretty, but then strange at the same time. Maybe as I am not used to it yet ??
Jen :)
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Permalink Reply by Heather Brown on
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Well my hair loss started as a bald patch on the back of head, then it started a pattern of baldness, hair was everywhere... On my pillow when i woke up, in the shower it would fall out in clumps, etc.. Needless to say, within 3 months i lost all of my beautiful healthy hair. Mine is autoimmune related. The dermatologist told me steroid shots wouldn't even help bring it back. My twin sister shaved my head and then shaved her own for me so i wouldn't feel so different. But being different is a good thing; it defines who you are: fearless. You will be ok no matter what happens. We are all here for you.
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Thanks for your reply :) Yes it is so hard not to feel frustrated! i go through it as you probably do every day, especially in the am when getting ready :(.
I totally agree with you about the brows and eyelashes, we are lucky to have these! :)
You are brave to shave! I need to pluck up the courage I think! I am lucky I have a very supportive partner who says he will support me in whatever decision I make. He is urging me though to wear the wig for a little first before I shave so I can get used to it. I worry that having hair under my wig will be even more frustrating. What do you think? :)
Thanks again! Jen and take care! :)
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Permalink Reply by Kirsten on
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My experience is pretty much the same as yours and I'm also in NZ. My GP just thought it was CTE when it started last year and that made some sense due to the extremely traumatic event I'd just been through but I went to my dermatologist anyway and he heard what I had to say, took a look at my scalp and said it was out of his area of expertise and sent me on to an endocrinologist. The endocrinologist has been changing/refining her diagnosis since she first saw me but I think she's settled on Androgenic Alopecia and I'm currently being treated with hormones and cyproterone but they haven't helped.
The dermatologist you saw didn't say anything to you about seeing an endocrinologist?
I know the dispair of watching your hair just keep coming out - I'd like to shave the bit I have left off as well, (my hair was also very thick and curly and the curl hid the loss for awhile).
At present because I'm 'not allowed' to shave what's left I go with turbans/hats etc.. or a wig - not finding the wig very easy to do.
I wish I had some positive answers for you but you're not alone in suffering from this here on The Land of the Long White Cloud.
All the best.
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Oh wow are you? where about's? I am in Dunedin :) No I went to a Dermatologist here in Dunedin at Mercy Hospital and he didn't suggest an Endocrinologist :( he was not that helpful really. He prescribed my Spironolactone which is actually a drug for blood pressure! It supposedly has the side effect of hair growth (however it hasn't helped any to be honest). Was it super expensive to see an endocrinologist? I don't really have allot of money for research :(.
Just curious, but why aren't you allowed to shave your hair off? tell me if that was a rude thing to ask? :)
I want to, but I am scared to be honest> I am trying the wig thing when it comes but that scares me also a little :)
How long have you been suffering with this? :)
Thanks so much for responding!
Jen :)
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Happy to respond! :)
I'm in Auckland :) My GP put me
on the Spirolactone while I was waiting to see the endocrinologist , he's seen success with it in a couple of his patients, but it only helped me not retain fluid it didn't help in any other way.
The endocrinologist is expensive unfortunately and I'm just managing to pay her and she's very hard to get in to see (I've found most Specialists in NZ are just booked up months in advance). She hasn't really done any reasearch so much as run all the bloods - made sure it wasn't early menopause, my periods just stopped very suddenly at the same time as my hair started falling out so we do know that for me it is in part hormonal.
I'm not allowed to shave my hair off while they think there may be any chance something might work for me, it really feels more to me like prolonged torture and also as much as I hate it a part of me has just accepted it but no one else around me has (I shaved my hair off in my 20's to show myself that if I did lose my crowning glory I would survive - it wasn't taken very well back then but everyone knew it was coming back so the hysteria was quenched a bit.... little did any of us know I was really going to lose it). I've been told people will stare, people will think I'm sick etc... I've even been told people may think I'm mentally unbalanced and that it's a form of self mutilation - as you can tell an amazingly supportive bunch - oh and the wig people want me to use the bits left to keep the piece on, even though it hurts.
It started last May (2012) for me, on April the 8th I had a stroke in my left eye and lost my central vision and also found out I have advanced glaucoma in both eyes - it's steroid induced, so I lost over half my vision in one day and about 6 weeks later the front of my hair fell out and then rest started falling out all over.
I'd happily give up my hair for my sight back and when people tell me there are worse things( than losing my hair - I know because I'm living it.
You know if you don't have any other hormone problems, your GP could run the tests and tell you, something like cyproterone might help you.
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Oh that's terrible I am sorry!. I don't have vision in one eye. I was born like that its kind of all I have ever known though, so different.
Wow who told you those things about shaving your head? friends?What tests would they have to run? I've had thyroid and iron and such, all normal.
I've been told by a friend who has totalis that when she still had some hair and wore a wig it would annoy her and pull. And if you have none you can get things like wig grips to keep it on. I actually have a special glue for mine I heard about on here that you can put on your hairline (whether you have hair or not) it holds your wig on so you don't have to use tape or clips (if you have hair) it washed out of your hair easily with water. I am yet to try it though :)
I've actually started using women's rogaine off my own bat. Have been using for around 3 months and am getting some new hairs on my hairline (not much really) but I am sticking to it to see if it helps. Have heard the mens rogaine is better as it's 5% and the women's is 2%. Not sure though.
Have you thought to try rogaine at all?
IT is expensive in pharmacies here. But I get from an online supplier in NZ for around $100 for 3 months worth (whereas in pharmacy it is $79 for one month!) It is really unfir as in the US you can get it so cheaply compared!
Have you got a wig? did you get the Ministry subsidy?
Jen :)
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Just my opinion....I don't really know why most search for a "cure" and a diagnosis. It is what it is. Hair loss. Anything you do that may grow some hair, it then becomes a life-long ritual. Taking a pill, and needing to pay a dr. to get the script - forever. Using Rogaine, another lifelong expense and side effects of the product. Once you stop using it, the growth is no more, and you are back to square one. Cortisone shots. Again, expense, and dr. bills. Then they keep running tests, more expense. On top of which you may then need or want wigs....OH my, another expense. Goodness the list goes on. So sad to have loss of vision in one eye for those of you who do. That is far worse than hair loss. So is losing a leg or arm. So many things far worse. Hair loss only affects our self esteem and vanity.
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