Suicidal Due To Cte, Please Help Me

[daydreamerin]

Hi guys,

i’m writing this with tears in my eyes because I’ve finally reached my breaking point.
I came across this site countless times during my hours of extensive research, but today I decided to tell my story.

Everything started almost exactly five years ago, the summer of 2013. I had always had the most gorgeous hair, thick, long and A LOT of it. My hair went down to my hips and I loved to style it in all kinds of ways. However, my ends were a bit dry - no split ends - just dry. But it was shortly before my high school graduation and I wanted everything to be perfect, so I decided to go to a hairdresser and said that I’d like to have them cut about 1 - 2 inches.

But she cut all my hair off. I went to the hairdresser with hair to my hips and when I left it barely touched my shoulders. I was devastated. I cried every day and every night for about two weeks. Years of growing that beautiful hair - all for nothing. And there was no way I could do up my hair the way I had in mind for prom.

Something else happened during that time: I started taking an anti-androgenic birth control pill due to my skin. It cleared up quickly, but around three months later, my hair started falling out in clumps. Up until this point, I had NEVER EVER been able to just pull out hair. Of course, the occasional hair came out combing or washing my hair, but it was so little that I hardly even noticed. I probably lost about 5 hairs per day and 15 when washing them once per week. But all of a sudden I was able to pull out about 20 loose hairs every morning and every evening. In the shower, clumps of hair started to fall down in the tube. Then I also started to experience severe psoriasis on my scalp.

After some research I quickly found out that birth control can make your hair fall out and I stopped taking it after 3 months. But instead of getting better, the hair loss got worse. I started to lose more than 100 hairs a day and up to 500 in the shower. I went to several doctors without any success. My blood showed no anomalies regarding the thyroid and all the other usual suspects.

It’s now been five years „living“ in this nightmare. During all this time it never slowed down or went away, every morning and evening you can still pull out about 50 hairs and don’t get me started on wash days. I don’t feel like myself anymore and the hair loss is destroying my life. It’s caused severe depression and I’m becoming suicidal.

Over the last 6 months I’ve been using iron supplements and a hair water containing Alfatradiol. This helped a tiny bit, lowering the hair loss to about 40-50 hairs per day. But there is no further improvement and I’m losing hope. My hair loss is diffuse, although the temples are probably affected the most. I lose hairs of all sizes - from 0,5 inches to 15 inches. I do have to say that my hair never stopped growing (I always had regrowth) and it looks rather „normal“. My scalp doesn’t shine through. I still have psoriasis, especially in the front right behind my hairline.

It says on the internet that chronic gelogen effluvium can last up to 7 years. However, I’ve read a lot of posts where people still experience this condition way beyond that. I’ve pretty much lost all hope that this is going to go away on its own. The only two things I haven’t tried yet are rogaine and birth control. I’m very reluctant to use rogaine as it will probably make my psoriasis even worse. My psyche also can’t handle a shedding phase right now. And I also do not want to be dependent on romaine for the rest of my life.

So right now I’m debating whether I should go back on birth control - but not the pill that made my hair fall out. Years before that I once had taken a different birth control pill - without any side effects. I’m pretty sure that the second birth control pill messed up something in my body. I’m thinking that this other birth control pill might get the hormones back to normal.

But I know that this might backfire and everything will get worse.
I just don’t have the energy to deal with this anymore, I’m very close to ending it all.

Can you guys help me decide what I should do?
None of my family and friends understand what I’m going through and I need help from people who know what it’s like.

Thank you for reading up to this point.
Thank You

 

[buckthorn]

Hi guys,

i’m writing this with tears in my eyes because I’ve finally reached my breaking point.
I came across this site countless times during my hours of extensive research, but today I decided to tell my story.

Everything started almost exactly five years ago, the summer of 2013. I had always had the most gorgeous hair, thick, long and A LOT of it. My hair went down to my hips and I loved to style it in all kinds of ways. However, my ends were a bit dry - no split ends - just dry. But it was shortly before my high school graduation and I wanted everything to be perfect, so I decided to go to a hairdresser and said that I’d like to have them cut about 1 - 2 inches.

But she cut all my hair off. I went to the hairdresser with hair to my hips and when I left it barely touched my shoulders. I was devastated. I cried every day and every night for about two weeks. Years of growing that beautiful hair - all for nothing. And there was no way I could do up my hair the way I had in mind for prom.

Something else happened during that time: I started taking an anti-androgenic birth control pill due to my skin. It cleared up quickly, but around three months later, my hair started falling out in clumps. Up until this point, I had NEVER EVER been able to just pull out hair. Of course, the occasional hair came out combing or washing my hair, but it was so little that I hardly even noticed. I probably lost about 5 hairs per day and 15 when washing them once per week. But all of a sudden I was able to pull out about 20 loose hairs every morning and every evening. In the shower, clumps of hair started to fall down in the tube. Then I also started to experience severe psoriasis on my scalp.

After some research I quickly found out that birth control can make your hair fall out and I stopped taking it after 3 months. But instead of getting better, the hair loss got worse. I started to lose more than 100 hairs a day and up to 500 in the shower. I went to several doctors without any success. My blood showed no anomalies regarding the thyroid and all the other usual suspects.

It’s now been five years „living“ in this nightmare. During all this time it never slowed down or went away, every morning and evening you can still pull out about 50 hairs and don’t get me started on wash days. I don’t feel like myself anymore and the hair loss is destroying my life. It’s caused severe depression and I’m becoming suicidal.

Over the last 6 months I’ve been using iron supplements and a hair water containing Alfatradiol. This helped a tiny bit, lowering the hair loss to about 40-50 hairs per day. But there is no further improvement and I’m losing hope. My hair loss is diffuse, although the temples are probably affected the most. I lose hairs of all sizes - from 0,5 inches to 15 inches. I do have to say that my hair never stopped growing (I always had regrowth) and it looks rather „normal“. My scalp doesn’t shine through. I still have psoriasis, especially in the front right behind my hairline.

It says on the internet that chronic gelogen effluvium can last up to 7 years. However, I’ve read a lot of posts where people still experience this condition way beyond that. I’ve pretty much lost all hope that this is going to go away on its own. The only two things I haven’t tried yet are rogaine and birth control. I’m very reluctant to use rogaine as it will probably make my psoriasis even worse. My psyche also can’t handle a shedding phase right now. And I also do not want to be dependent on romaine for the rest of my life.

So right now I’m debating whether I should go back on birth control - but not the pill that made my hair fall out. Years before that I once had taken a different birth control pill - without any side effects. I’m pretty sure that the second birth control pill messed up something in my body. I’m thinking that this other birth control pill might get the hormones back to normal.

But I know that this might backfire and everything will get worse.
I just don’t have the energy to deal with this anymore, I’m very close to ending it all.

Can you guys help me decide what I should do?
None of my family and friends understand what I’m going through and I need help from people who know what it’s like.

Thank you for reading up to this point.
Thank You

sorry to hear. do you have any pics?

 

[tomcat]

@EvilLocks @Pasbrillantebrunette

 

[Carlo099]

I am experiencing exactly the same pattern of hair loss after I have used Ssri in 2013 for about one year. I Guess birth control and Ssri have something in common when it comes to the metabolism they interact with.
Any other?

 

[daydreamerin]

sorry to hear. do you have any pics?

Here are three pictures:
1) What my hair used to look like
2) Directly after the hairdresser messed up my hair
3) What my hair looks like now (The sides are hit the most)

I should probably also say that I've always had a bit of a receding hairline on the sides, but my hair was never thin. Nobody in my entire family has issues with hair loss.

I am experiencing exactly the same pattern of hair loss after I have used Ssri in 2013 for about one year. I Guess birth control and Ssri have something in common when it comes to the metabolism they interact with.
Any other?

I'm so sorry Carlo, are you also still experiencing hair loss?

 

[EvilLocks]

How your hair stylist could ''mess up'' that much and misjudge how much you wanted cut off to that extreme is beyond me. Anywho, your hair looks fine. Did you have every possible blood test done? No deficiencies? If you have regrowth I don't think it's Androgenetic Alopecia, but yes Telogen Effluvium can be very frustrating.
Just don't end it all because of this, take it from me, I am female as well and a Norwood 5. I wear a partial wig. If I can live through that you can live through your shedding, as frustrating as it may be. Good luck

 

[kj6723]

Here are three pictures:
1) What my hair used to look like
2) Directly after the hairdresser messed up my hair
3) What my hair looks like now (The sides are hit the most)

I should probably also say that I've always had a bit of a receding hairline on the sides, but my hair was never thin. Nobody in my entire family has issues with hair loss.



I'm so sorry Carlo, are you also still experiencing hair loss?

Things look okay to me in these pics. Please don't end your life over this

 

[Japnicks India]

Really sorry to hear about your condition and since you’re a young female. You’re definitely feeling low, & trust me i’m feeling the same these days but one thing that keeps me going is my responsibility towards others.

Hair is an important aspect and ironically i’m saying this who has been a baby over this for the past few months. Trust me world doesn’t ends here, hair topper & wigs will cover. No one is born invincible, everyone is suffering for something. Yes it’ll hamper our self confidence & our dating life but doesn’t mean we’ll not head in the right direction.

Since you are taking meds on and off, it does make you shed more but when you quit, it becomes worst. Same case with finasteride/rogaine you have initial shed however if you quit then you start to lose your gains.

Elon musk was balding at the age of 27, and today he can do whatever he wants! Please be strong. FYI, Kim kardashian suffers from psoriasis and she is covering this too.

Girl get your head up, you’ll do fine.

 

[daydreamerin]

Guys, i just can't take this anymore. I have to do something.
Should I try minoxidil or BCP first?

 

[resu]

The hairdresser did you favor in cutting that wild hair, taking birth pills is the most likely the reason for your hair loss, might be a good ideia to check with an endocrinologist and with a dermatologist.

 

[IdealForehead]

Here are some steps you can take that are all reasonably safe if you can find a doctor to agree to helping you with this:

1) Topical minoxidil 5% twice daily - no brainer.
2) Oral minoxidil 2.5-5 mg once or twice daily - a bit harder to get someone to prescribe but very good - could be done up to a year if you tolerate it to help stabilize things.
3) Finasteride 1.25-2.5 mg daily.
4) Spironolactone 50-200 mg per day or cyproterone 25-100 mg per day (cyproterone is not available in the US though if you're American)
5) Topical estriol creams, either over the counter like this, or custom compounded at around 0.3%.
6) Topical compounded antihistamines like desloratadine. You can get 1% desloratadine compounded into your basic 5% minoxidil for ease.

If you are interested in learning more about how these agents work, you can read the forum more or let me know and I can try to explain further. But try to do some research first.

In short, minoxidil is a growth stimulant which prolongs the growth phase of hair. Estriol also prolongs the growth phase of hair. Antihistamines work as broad anti-inflammatories and growth stimulators. Lastly, finasteride, spironolactone, and cyproterone work as anti-androgens. You may not need an anti-androgen if it is truly CTE, but it couldn't hurt to add one for insurance if you wanted.

I would be shocked if you took all the steps above and your hair loss continued to any significant extent. Most people suffer prolonged and unyielding hair loss because they do not treat it aggressively or adequately enough. With proper treatments, most hair loss can be stopped.

Make sure you have had a scalp biopsy also to prove the diagnosis, but either way, as long as it is not auto-immune, the treatments above are the ones you will want. Also make sure your thyroid, iron, B12, and zinc levels are good and you have a balanced diet and/or basic supplement stack (eg. omega 3, biotin, multivit, vit D, others like pumpkin seed oil perhaps).

 

[Afro_Vacancy]

Here are some steps you can take that are all reasonably safe if you can find a doctor to agree to helping you with this:

1) Topical minoxidil 5% twice daily - no brainer.
2) Oral minoxidil 2.5-5 mg once or twice daily - a bit harder to get someone to prescribe but very good - could be done up to a year if you tolerate it to help stabilize things.
3) Finasteride 1.25-2.5 mg daily.
4) Spironolactone 50-200 mg per day or cyproterone 25-100 mg per day (cyproterone is not available in the US though if you're American)
5) Topical estriol creams, either over the counter like this, or custom compounded at around 0.3%.
6) Topical compounded antihistamines like desloratadine. You can get 1% desloratadine compounded into your basic 5% minoxidil for ease.

If you are interested in learning more about how these agents work, you can read the forum more or let me know and I can try to explain further. But try to do some research first.

In short, minoxidil is a growth stimulant which prolongs the growth phase of hair. Estriol also prolongs the growth phase of hair. Antihistamines work as broad anti-inflammatories and growth stimulators. Lastly, finasteride, spironolactone, and cyproterone work as anti-androgens. You may not need an anti-androgen if it is truly CTE, but it couldn't hurt to add one for insurance if you wanted.

I would be shocked if you took all the steps above and your hair loss continued to any significant extent. Most people suffer prolonged and unyielding hair loss because they do not treat it aggressively or adequately enough. With proper treatments, most hair loss can be stopped.

Make sure you have had a scalp biopsy also to prove the diagnosis, but either way, as long as it is not auto-immune, the treatments above are the ones you will want. Also make sure your thyroid, iron, B12, and zinc levels are good and you have a balanced diet and/or basic supplement stack (eg. omega 3, biotin, multivit, vit D, others like pumpkin seed oil perhaps).

I can't tell if you're serious, as in my opinion what you're suggesting is serious overkill. In particular, one should never tell a woman of breeding age to take finasteride without also stating that it can (will) cause birth defects if she gets pregnant, and that it stays in the system for a while.

I'll agree that she should get a blood panel done first (thyroid hormones, insulin, glucose, sex hormones, iron, vitamins D, b12, zinc, for sure) but there's very little point to the supplement stack. All of the information we have on supplements and hair loss is anecdotal. Biotin has not been backed up boy subsequent research. Vitamin D3 will only help you if you're deficient, in which case you're better off getting soon, fish oil is mostly useless and failing in follow-up studies, and so on. Suggesting these supplements wantonly will mostly discourage people.

I have no idea why you're suggesting loniten and finasteride mega-dosing to start.

I think that advising people multiple handfuls of ideas like this, when they're at the breaking point, might do more harm than good, it can lead to overload.

**********

IMO, if a woman wants kids one day, and has Androgenetic Alopecia confirmed by a blood panel and analysis, the best first line treatment would simply minoxidil, finasteride (doesn't need to be a megadose), and an anti-inflammatory shampoo like nizoral.

 

[IdealForehead]

I can't tell if you're serious, as in my opinion what you're suggesting is serious overkill. In particular, one should never tell a woman of breeding age to take finasteride without also stating that it can (will) cause birth defects if she gets pregnant, and that it stays in the system for a while.

I'll agree that she should get a blood panel done first (thyroid hormones, insulin, glucose, sex hormones, iron, vitamins D, b12, zinc, for sure) but there's very little point to the supplement stack. All of the information we have on supplements and hair loss is anecdotal. Biotin has not been backed up boy subsequent research. Vitamin D3 will only help you if you're deficient, in which case you're better off getting soon, fish oil is mostly useless and failing in follow-up studies, and so on. Suggesting these supplements wantonly will mostly discourage people.

I have no idea why you're suggesting loniten and finasteride mega-dosing to start.

I think that advising people multiple handfuls of ideas like this, when they're at the breaking point, might do more harm than good, it can lead to overload.

**********

IMO, if a woman wants kids one day, and has Androgenetic Alopecia confirmed by a blood panel and analysis, the best first line treatment would simply minoxidil, finasteride (doesn't need to be a megadose), and an anti-inflammatory shampoo like nizoral.

I'm 100% serious. If someone is losing so much hair that it is making them suicidal, then trying an aggressive approach is absolutely reasonable. I have taken many aggressive drugs so this is just my personal opinion. Personally, I have used every single agent on that list in the same doses I listed.

Finding the best solution through this kind of experimentation has made me a much happier person, as succeeding with my hair has directly translated into a more positive outlook.

Sure I should also mention you need to be on birth control and/or condoms and/or abstinent if you're on those drugs (forgive me, but sometimes I forget normal people regularly have sex...).

But otherwise they're all valid treatments for female hair loss with published studies proving they all work, except topical estriol (which has evidence, but only in a "cell biology" kind of way, not a direct major human trial way).

CTE won't respond to anti-androgens so I was saying she should start with the other agents, and if she wants add an anti-androgen for backup.

How aggressive one wants to be is their choice. I was just laying out all the effective options.

 

[User1993]

Bcp hair loss side effect should be mentioned when it is described to someone. At least asked if there is family history of hair loss or any hair loss experience in the past. I feel doctors are still unaware about it (at least the ones i have visited).
I also suffer hair shedding 6 months now after stopping the pill and don't see any decreasing of shed yet. I'm so afraid bc i can already see my scalp and i have to style my hair and it is getting really difficult.
I hope you will get better. Believe me, i know how frustrating it can be. But your hair looks so much better than mine.