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Comment by Wyobalance on June 18, 2018 at 12:40pm

Maddy, very interesting story about the flu shot.  And it sounds like one of the few for which scarring hair loss has "burned out"??  Congrats!  Though your remaining symptoms do not sound pleasant.

Comment by cubbieblue on June 18, 2018 at 12:36pm

I have definitely had the sweating too!  Switching gears here, I'm wondering if anyone else has examined the hairs that fall out.  Mine have a very small black area -- just a dot really- at the very tip of the bulb end.  I'm sure I'm not explaining this right, but the end of the hair that attaches to the scalp, the part of the hair looks like a q-tip, at the very end it is black, where the rest of the blub area is whiteish-clear.  Anyone else?

Comment by Maddy, California, U.S. on June 18, 2018 at 12:01pm

@Liverette Hi Liverette, I also saw your message and was not able to find it anywhere. I too have hot flushes and sweating around my hairline! I feel that mine started after I lost a lot of hair around my temples and some around my hairline. I feel that my hair loss was originally triggered by the flu vaccine. I had a horrible case of influenza when I was 47 years old (right as I was starting to go through peri-menopause), that took me a couple of months to get over...the next year, for the first time, I got the flu vaccine and within a month, lost almost all the hair on my right temple and my left temple thinned. I didn't connect the two, until the next year, when I had another flu vaccine and then lost most of the hair on my right temple and some around my hairline. Anyway, after all this, I started getting hot flushes and lots of sweating around my temples and front hairline. I am sure it is somehow all related, but of course, I don't know exactly how. I have been to many different types of doctors (endocrinologist, immunologist, dermatologists) over the years, with lots of possible explanations, with the "best" one coming from my endocrinologist, who thinks the flu vaccine triggered the hair follicles to shut down thinking that another case of influenza was coming on and causing an autoimmune response each time I got the shot. Anyway, I guess the good news is that I have not had the flu shot now for about 10 years and there has been no additional hair loss. Nothing ever grew back, but at least it hasn’t progressed. It is definitely an odd disease and it seems like there are many different triggers. Anyway, back to your original question J, yes, I get the weird hairline sweating and hot flushes especially in humidity…but it can happen almost anytime. It’s no fun.

Comment by illustr8r on June 17, 2018 at 10:49pm

@Liverette  I saw your message but I couldn’t figure out how to reply back to you. Hopefully, you’ll see this. I had really bad hot flashes and night sweats. They got under control with HRT even though my dr isn’t fond of HRT. My quality of life needed hormones! 

To the ladies who live in a warm climate-you have my sympathies. I’ve been in the Midwest/east coast for 3 weeks. It’s been a long time since I’ve been in a hot and humid climate. Since I’ve been traveling I’ve been in different cities with different water and have wondered if in combo with the heat-is this why my head feels on fire again? I missed 2 days of Castor Oil and developed a spot on the right side of my head that hurt so much it gave me a headache. After 3 days of Clobetasol and back on Castor Oil it feels better. In this heat my hair looks thinner, flatter ugh...I’ll be home soon. Yay!

Comment by Afraid on June 12, 2018 at 4:31pm

Thank you so much CurlyK such diligence and generosity. V much appreciated :-)

Comment by Minter on June 12, 2018 at 8:20am

Wow @CurlyK! Thank you so much for taking the time to share all this info! I took a quick look as I'm heading out the door soon, but shall read it carefully tonight.  One thing I did catch was not to use tea tree or peppermint oil on the scalp, ugh I use both :-(  no more, will switch to witch hazel/apple cider vinegar! Looking forward to reading all the notes tonight :-) 

@Halfbakedwho, it is nice you will be able to meet your sister in DC, seeing your hair in person will allow her to see what is happening for real to you!   I am near Albany and haha I think I have always been too old-fogey and paranoid to go anywhere near weed! But still will look into the tinctures ;-)  Enjoy DC, have never been, but will get there someday, hopefully during cherry blossom time!

Comment by Jules Australia on June 12, 2018 at 2:16am

Curly K, I just want to thank you for the detailed report and info you posted from Carf Conference. There is quite a lot of info there and I will have a better read after printing off.... It must have been so good to talk& mingle with others who are/have been going through all the  similar challenges this disorder creates in our lives....thanks again!

Comment by CurlyK on June 11, 2018 at 10:23pm

I posted my notes on the CARF conference in the discussion board section. I guess someone has to approve it first before it shows up. 

Comment by Halfbakedwho on June 11, 2018 at 4:12pm

yes well, my sister is not known for her sensitivity and kindness. She thought it was a joke. Thank you for your support. The patch on the top of my head is growing, but again others are so nice and say they really don't notice it. I will be in D.C. this coming Saturday! My sister is meeting me there. 

Hey Minter where are you in NY State? I grew up in Binghamton. I actually really like the smell of weed, though I am too old-fogey and paranoid to smoke it anymore ; ). The castor oil I have on my head right now smells pretty smokey too... 

thank you so much for the naltrexone info Miss Mymble! I am not sure I want to take it but I'll look into it. 

So glad you had a good time CARF-ing, CurlyK, and Afraid, maybe yes I will see you in London!

Bonne nuit et bises,

Comment by Afraid on June 11, 2018 at 1:44am

So pleased curlyk that you enjoyed and benefitted from the conference.  Thank you for thinking of us.  I look forward to any info that you can share when your feet touch the ground! 

Welcome to the group Miss Mymble.  I’ve not tried naltrexone.  I too scout the internet for journal articles and have found Donovan to share relevant information.  When I asked my dermatologist her thoughts on some recent research on FFA she was unaware of it and asked me to forward the information....i think it’s highly unprofessional that she is not up to date or at least tries to be...I have visited her at least 4 times in 6 months and she must at least know by now I will ask pertinent questions.  I had to ask to be prescribed hydroxychloroquine etc etc I despair!!!!!! 

Minter & Halfbaked I will look forward to hopefully meeting you in London at the event you mentioned.  

I wish for a symptom free week (lifetime!!) for everyone and well deserved respite from FFA/LPP. Xxx 

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