Lived Experience Forum

[floaty_potato]

Hi everyone, new member here. I've tried my gp and online for answers but im not getting anywhere.  

I have schizophrenia. I have tried many medications and am currently on my last option. Problem is, although I tolerate it well, it has elevated my prolactin levels which is causing all my hair to fall out. Im a woman.

No one seems to be able to help. My gp says it's natural even though when I was switched to another med it stopped. My psychiatrist says it's definitely due to the medication but we can't change it because its the only med I dont react to badly. 

The thought of losing my hair depresses me. Ive tried shampoo and vitamins but nothing works. Every time I think about going bald I think about suicide then try to snap out of it. 

Does anyone have any advice? Has anyone heard of meds doing this before? How do I stop being so sad about it? 

[Jynx]

Hi @floaty_potato, welcome to the forums. I'm one of the moderators, I just wanted to stop in to say hello.

It's such a tricky thing to have found a medication that works, only to have such a drastic side effect. It's especially concerning if it brings up thoughts of suicide for you. It's awesome you're reaching out to folks here for support, it's a great community. You can also contact the Help Centre if you want to talk to someone one to one (1800 187 263), or if you find yourself in crisis please contact Lifeline (13 11 14) or Suicide Callback Service (1300 659 467).

It sucks that beauty standards for women are so intense, and it means that this weighs so heavily on you. It shouldn't have to feel like taking medication is a sacrifice. All I can say is that time will help, and that your worth is not measured by how you look.

[Appleblossom]

Hello @floaty_potato

Sorry to hear about yet another med side effect.  I have not heard of that before, but if it is happening, its happening. Sadly another challenge for you.

I did have a young student with Alopecia, once.  She got became used to wearing a wig.  I agree with @Jynx about beauty and women.  Somehow it is harder for us.

Take Care

Apple

[greenpea]

@floaty_potato  Hey floaty_potato and welcome :). Just what we need is another adverse sideaffect . I have never head of this one but nothing would surprise me either. I am late middle aged and hair is thinning just becauase I am a older chook. I feel for you I really do. Lots of hugs. greenpeax

[Schitzo]

Hi @floaty_potato 

I have also suffered hair loss, not through medication but through Crohn's disease. My advice to you is to love the person that you are, don't let the hair loss define you. True beauty comes from within. My hair loss was quite severe so I got a wig. It was the best decision I ever made, it gave me my confidence back.

[Eve7]

Hi @floaty_potato  and welcome to the forum.

I have also lost a significant amount of hair this year so I wonder if we’re on the same anti psychotic.

Take care sweetie

[mirrormirror]

Ask to see a dermatologist if you haven't already although I am sure you have. I have had good success with a drug called Minixodil* and my hair has almost grown back. I had hair loss for the same reason. If you have already tried obviously ignore me! But even my GP who is fantastic had not heard of this one.

I do know how awful this side effect is. It is so demoralising and made me feel as though my femininity was at stake. I was so lucky with this drug because it is a long shot finding something that would work and I was also lucky with the side effects from it. It is not easy to treat.

I'm worried I'm sounding unsympathetic but I don't want to minimise how bad the feeling was going bald or talk up the chances of it going away. Look after yourself.

*spelling?

[floaty_potato]

I'm going to go see a psychologist to help me deal with my feelings about all this. I'm also going to go see a dermatologist to see if they can do anything. 

Thank you for replying 

[floaty_potato]

I actually haven't seen a Dermatologist yet, because every time I see my GP he insists its all perfectly natural (even though my hair has always been super thick and now you can see my scalp everywhere). I'm going to have to be firm with him and tell him I absolutely need to see one. 

[mirrormirror]

I wish I could give you the name of my dermatologist because she was so good. To be perfectly honest I think you might even have to look around a bit to find a helpful dermatologist although I really haven't had a bad experience myself there.

Just some background- with me hair loss was found to be a side effect of at least three of my psychiatric drugs (2 mood stabilisers and 2 antipsychotics). Plus I have a thyroid problem from lithium. I think I had quite bad hair loss from the minute I went on mood stabilisers and an antipsychotic many years ago so it would be hard to work out which is doing the damage. So definitely psych drugs can be a problem although maybe your own case is different.

Everybody was very surprised admittedly at how Minoxodil worked for me and I hadn't lost all my hair. Apparently it works by kickstarting the hair follicles. I have also heard of using steroids??? but not from my dermatologist. I hope this helps. The worst that can happen is you just ask so I can see why you are frustrated. Best of luck.