Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  YaBB is sponsored by XIMinc!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
Putting it all out there! :) (Read 3828 times)
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Putting it all out there! :)
02/21/14 at 13:55:49
 
I have a question for y'all. But I have to back up first. I have a "condition" called trichotillomania which is a compulsion to pull out my hair, somewhat under the OCD family.  I know, sounds crazy right? But really, besides the ups and downs of mast cell disorder, I'm a pretty normal girl.
I've had this condition since I was 8. I am now 37.
Interestingly I believe now that everything ties together.  
I have learned over the past couple years that I am extremely sensitive to salicylates. Herbal supplements, plant oils, cooking oils, some flower fragrances etc.
when I started looking into sal intolerance, I found that there is a lot of research going on in Australia! It was on an Australian website that I read about a connection between sal intolerance and OCD, especially trich. Makes total sense to me.
Anyways, back to my question. I have to wear a wig. I wear a human hair wig, but I'm having a hard time keeping it from turning into dreadlocks (which I would actually love to have if I had my own hair! Lol) I am also very sensitive and trigger from all fragrances. I tried a fragrance free aragan (with a million other oils in it) on my hair the past two days. I knew it wasn't the smartest of ideas, but I did it anyway. I actually had my husband apply it. Long story short, the oil must have absorbed enough to effect me. I have never done methamphetamine, but if I had, I am certain it would have felt much like the way I have been feeling.
So my question (I guess I didn't need to tell you all this. But it is interesting to see the connections between mast cell disease and other conditions) does anyone have any ideas of a good product I can use on my "hair".
When I'm feeling so crappy, sometimes putting some effort in to looking good helps, but I haven't been able to do that lately because my hair looks like a ratsnest!  Undecided
Back to top
 
 
IP Logged
 
donnarenee0529
Tutor
**
Offline


I Love YaBB 2!
Posts: 22

Re: Putting it all out there! :)
Reply #1 - 02/24/14 at 10:18:06
 
Try using baking soda....sprinkle it on the hair and add water to rinse it out. Instead of conditioner, use apple cider vinegar...your hubby may have to do this part because of the strong smell! Just use a couple of tablespoons with a large glass of water...dump it over the hair, let it sit for a few minutes and then rinse it off. Smell goes completely away once the hair is dry.

Hope that helps and neither of these items are on your trigger list!
Back to top
 
 
IP Logged
 
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Re: Putting it all out there! :)
Reply #2 - 03/15/14 at 08:14:44
 
Brigitte,

I have trichotillomania too.  I'm 53 and have had it since about 11 years old.  When I first found out about mast cell activation and autoimmune chronic urticarial (like you have) I was told by people on this forum to avoid salycilates.  I use Biosilk silk therapy shampoo and conditioner.  I shampoo only 1 or 2 times a week because after 2 years of knowing what is wrong with me and reacting to some still every other day, I have PTSD and shampooing more than that is too scary for me.  I use Dove white plain soap for skin and colgate toothpaste.  No reactions for me.


Back to top
 
 
IP Logged
 
Ladybug
Ex Member





Re: Putting it all out there! :)
Reply #3 - 03/15/14 at 13:04:42
 
I'm only a hair twirler. No pulling. I have noticed that my hair seems drier and brittle and I having been losing more and more hair. I will have to check into those hair products to see if that helps.  Smiley
Back to top
 
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Putting it all out there! :)
Reply #4 - 03/21/14 at 07:13:38
 
That is crazy pjp123 and ladybug (hi Brenda:)!)
I'm not sure if I wrote this above, but I started pulling my hair when I was 8 (I'm 37, almost 38, now)
Interesting thing....the apple did not fall far from the tree, my 9 year old son started pulling his hair in second grade. He was also showing signs of major anxiety and depression in kindergarten and was always fidgiting with something on his body. biting his nails, pulling at (but mot pulling out) his eyelashes, tapping his feet...When I realized my reactions to fragrances and changed EVERYTHING in my house to fragrance free in early 2012 (laundry detergent, no dryer sheets, cleaning products, lotions etc. etc.) his pulling stopped!!!! And like turning off a light switch, he became the happiest little guy. It was truly remarkable.
I have read up on salicylate sensitivity and it was either on fedup.com or on the Royal Prince Albert Hospital website (Australia) that I read a link between salicylate intolerance and trichotillomania and mood/anxiety disorders.
Now that the ambiguities of my life have become more clear to me with my autoimmune urticaria and MCAS diagnosis's and my ever-growing trigger list, I have most certainly seen the link between my trich and anxiety with triggers. Especially salicylates.
So crazy!!!! I am so thankful for this forum! Thanks Deborah!!

Just thinking.....I wonder if cromolyn or ketotefin have any sort of links to salicylates? I had a reaction to both medications as I do to sals.
Does anyone know? Huh

By the way, for anyone interested, it took me a long time to find a salicylate free moisturizer. I guess a lot of people with sal issues can tolerate shea butter, but not me, so I finally found a brand called theraplex that has a couple sal free items. I even had them call the lab to make sure! Lol
Anyways, it's more like a balm, like a thick vasaline I guess, but it doesn't go on greasy.
Back to top
« Last Edit: 03/21/14 at 15:22:20 by Britt »  
 
IP Logged
 
Ladybug
Ex Member





Re: Putting it all out there! :)
Reply #5 - 03/21/14 at 11:41:31
 
Britt wrote on 03/21/14 at 07:13:38:
That is crazy pjp123 and ladybug (hi Brenda:)!)
I'm not sure if I wrote this above, but I started pulling my hair when I was 8 (I'm 37, almost 38, now)
Interesting thing....the apple did not fall far from the tree, my 9 year old son started pulling his hair in second grade. He was also showing signs of major anxiety and depression in kindergarten and was always fidgiting with something on his body. biting his nails, pulling at (but mot pulling out) his eyelashes, tapping his feet...When I realized my reactions to fragrances and changed EVERYTHING in my house to fragrance free in early 2012 (laundry detergent, no dryer sheets, cleaning products, lotions etc. etc.) his pulling stopped!!!! And like turning off a light switch, he became the happiest little guy. It was truly remarkable.
I have read up on salicylate sensitivity and it was either on fedup.com or on the Royal Prince Albert Hospital website (Australia) that I read a link between salicylate intolerance and trichotillomania and mood/anxiety disorders.
Now that the ambiguities of my life have become more clear to me with my autoimmune urticaria and MCAS diagnosis's and my ever-growing trigger list, I have most certainly seen the link between my trich and anxiety with triggers. Especially salicylates.
So crazy!!!! I am so thankful for this forum! Thanks Deborah!!

Just thinking.....I wonder if cromolyn or ketotefin have any sort of links to salicylates? I had a reaction to both medications as I do to sals.
Does anyone know? Huh


Hey Brigette,

Some people react to the fillers in Ketotifen capsules that are compounded in the USA, but not the pills from the UK.  Undecided What form did you take?

This info that might be of interest. Do a word search and you'll be brought to the article. http://babygaps.blogspot.com/2012/05/putting-our-hopes-in-ketotifen.html
Back to top
 
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Putting it all out there! :)
Reply #6 - 03/21/14 at 15:42:53
 
I actually tried the liquid ketotefin from Clark's pharmacy in Washington. I should find out if there's anything else is in there. I think the pharmacist said it was just the drug in water, but I'm not certain.
Back to top
 
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Putting it all out there! :)
Reply #7 - 03/21/14 at 16:26:14
 
Pjp123, maybe you should try something other than biosilk Huh?? Or as Donnarenee said, try the baking soda (I'm not sure about the vinegar. High sal. I can't do vinegar)  Do you have issues with fragrances? Is biosilk salicylate free?
I haven't used it in a long time, so I'm not sure if its sal free, but I used to use a product called Unicure. They make a shampoo and conditioner, both fragrance free.
There is also a brand called Magik Botanicals, contrary to the name, I believe they have sal free hair products. But they do contain preservatives. Boo.
Back to top
 
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print