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Message started by DeborahW, Founder on 11/08/11 at 14:31:42

Title: Changes in hair
Post by DeborahW, Founder on 11/08/11 at 14:31:42

Have any of you noticed changes in your hair? I am wondering if mast cell diseases or our meds affect the hair on one's head. I used to have very thick long hair, as in I would be asked to be a hair model for hairstylists because I had so much fabulous hair.

In the past few years, though, something has changed. My hair is still long but does not seem thick and I definitely have far fewer strands of hair per square inch on my head. Before you could never see the part in my hair. Now you really see it.

Being as my hair was my favorite feature, I am very distressed about this. I really feel as if my hair is getting worse more quickly now and I can't help but assume it is due to mast cell disease. I have read that stress, such as illness, can affect one's hair.  So I am curious if I am the only one with this problem.

Looking even deeper, I wonder if this is a sign that I am not as healthy as I believe I am. Maybe I need to have all the blood tests and make sure things look good. It's kind of worrisome....

So any suggestions of how to help one's hair? I have read that biotin is a good supplement for hair, but I don't know how that would affect mast cells. I have probably been really hurting myself because I stopped taking vitamins years ago because they made me ill. Any suggestions for a multi vitamin that any of you has tried?

Thanks everyone for any tips!!

Title: Re: Changes in hair
Post by m0xie on 11/08/11 at 15:54:31

Hi Deborah,

Like you, my hair has always been thick. I started to notice a difference about 18 months ago, it's slowly been thinning. Because it was thick to begin with, it hasn't been as noticeable as if I'd had thin hair, but I can definitely notice the difference (I can even see more hair coming out on my comb when I comb it, and I just had my driver's license photo taken over the summer, and can see the difference between my new photo and my one from four years ago.)

I have heard that anesthesia can cause hair loss in some people, and I've had several surgeries in the past two years. I'm not sure if I should attribute the thinning of my hair to the anesthesia or to something mast cell related, but I have experienced the same thing.

Title: Re: Changes in hair
Post by Joan on 11/08/11 at 17:25:01

   I've had a similar problem.  My hair was always fine, but I had a lot of it.  Over time it's gotten thinner, but that comes and goes.  In my case I think the causes are stress, including the stress of mast cells degranulating, hormones (lack of), and an auto-immune thyroid problem (Hashimoto's Thyroiditis).

  I quit taking multi-vitamins because I flushed from them, probably from the niacin.  Haven't found one without it, so take individual vitamins.  I have a bottle of Biotin in my drawer that I haven't had the courage to take yet.  If I'm brave tomorrow, I'll try it.  I don't really think it'll cause a problem, but I'm afraid anyway!   :-/  My hair dresser swears it will help.

  Mayo Clinic's website has a section on Hair Loss:  

http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes


Title: Re: Changes in hair
Post by kimtg68 on 11/09/11 at 02:18:19

Deborah, I too have been concerned about my hair loss. I started noticing a thinning directly in front and center at my hair line above my forehead about 1 1/2 years ago. No one else could really tell but me. Also after a shower not only was there more hair in the drain filter but when I would comb it I would not only find an increase in the hair remaining on my comb but I could then gently pull my hair together as in a pony tail and pull clumps of hair from the bottom of my (long) hair. When I pulled my hair up into a pony tail I noticed my scrunchy was getting looser and eventually got to where what once was two loops around my hair became three loops. NOW I can still get the extra hair in the drain and off the bottom of my hair after combing and that thin spot above my forehead IS very noticable to others. You can actually clearly see the outline of my head through my hair when you stand in front of me. Over the summer I stopped blow drying my hair after shampooing it and I noticed that the thickness started to return. My very thin spot however has not filled back in. I'm back to two loops with my scrunchy. So as for the thickness in my hair, I think that because of the mast cell disorder I have just enough of a deficiancy that it made my hair VERY brittle and dry and easily broke off. I was not taking any anti histamine type medicines when all this started. Infact I only started taking them back in July and my thickness has returned. I don't attribute the medication to that but the not blow drying.

So that's my experience with the changes in my hair. Hope you figure something out that helps!

Kim

Title: Re: Changes in hair
Post by summerfields on 11/09/11 at 03:12:55

I was interested to read this, because it's been happening to me, too.

I also have always had thick hair.  I needed heavy duty brushes, and it would take a long time to dry.

A few years ago it started falling out in a hurry.  While I still wear it long, it's extraordinarily thin and wispy now, I can't believe this is me.  I could blame it on my getting older, but this does not run in my family, no matter how old anyone got to be.  So I knew it was health-related, but I hadn't thought of it as mast-cell-related.

The first thing I noticed was that it was hurting my head to brush my hair -- the bristles are painful --  and the sun started burning my scalp any time I was outside. If I scratch my head, I'm shocked every time, to feel no hair resistance.  It's like someone came overnight and cut down most of the trees in the forest.   There's so little left up there now, that sometimes when I glance in the bathroom mirror at the right angle of light, I just see a curved bald scalp shining through.  

Being as how it's more of a vanity issue, and I have more critical health worries to deal with, I try not to dwell on it.  But you can't help but feel kind of bad about it.  I can say that for me, this long debilitating illness has taken away "myself" steadily by bits and pieces, and this is just another bit that is making me unrecognizable as to who I "used to be".

My hairs are not only greatly reduced in number, but each hair is damaged, twisted, uneven in texture and shape.  Maybe we should have hair analysis done, but who would know what to make of it?


Title: Re: Changes in hair
Post by DeborahW, Founder on 11/09/11 at 04:05:45

I am finding the responses here very interesting. I am going to email Dr. Akin and ask about it as well. We shall see if that brings any information. In the meantime, I am going to go check out the biotin supplement....

Title: Re: Changes in hair
Post by Patricia on 11/13/11 at 13:47:25

Hey my husbands hair was thinning dry and you could see holes...he had hashitmoto so I feel like the thyroid is a culprit as well in his case.

What has worked wonders is the neuroprotek...his hair became shiny and soft and is much fuller...another amazing supplement that he takes is hyularonic acid (dr theo recommended for his connective tissue and tendon pain) I started using it becasue it said it can help ur eyes, hair, skin and my hair and nails are off the charts. We use these drops that u put under ur tongue for 10 seconds every am...the brand we use is synthovial seven www.hyalogic.com I would highly recommend both these products.

Title: Re: Changes in hair
Post by Julie M. on 11/14/11 at 12:53:27

Great question Deborah!

Similar story here too.  Last year at this time I started what I can only call "acute shedding" of hair.  I had never dealt with this issue previously and always had a full head of hair that was healthy.  I would estimate that I lost about 30 to 40% of my hair volume during the 6 week episode.  It really hasn't come back since that time. :(

The shedding got bad enough that I went to the dermatologist and had a scalp biopsy and yes, I asked them to also stain the specimen for mast cell count.  The specimen came back totally normal but I feel sure the hair loss is somehow related to the larger mast cell issue.  Perhaps from the malabsorption, anemia, Vit. D deficiency, etc.   The gastro says it's not his problem and points to the hematologist; the hematologist says it's not his problem and points to the gastro.  And the dermatologist says "well you can always get a hair transplant." Sheeeshhh, real helpful!

I've learned to live with the hair loss because I don't really have another choice.  The thing that makes me most sad about this is that the hair loss makes me look sickly.  I try my best to give my hair some life, but thin is thin, and there's only so much you can do to mask the reality.

I hope Dr. Akin can shed (no pun intended) some light on this issue. I'm eager to hear his thoughts.

Julie

Title: Re: Changes in hair
Post by kimtg68 on 11/14/11 at 13:13:17

I wonder if it's more of a mediator released by the mast cells. Dr Afrin showed me hundreds and hundreds of them. Since i am diagnosed with MCAD/MSAS I know most of my symptoms and problems are from the mediators themselves.

Title: Re: Changes in hair
Post by Joan on 11/14/11 at 13:34:25

I asked my haircutter about this, and he said that residue from all the meds we take can affect the thickness of the hair shaft, as well as might have side effects including hair loss.  

His suggestion was to use a product that strips the medicine from the hair, such as Nioxin.  It's available through some of the mall hair product stores or online.  They have several strengths.  The products include shampoos, conditioners, etc.  I've used the shampoo and conditioner, but only 1-2 times/week.  Will let you know if it helps.


Title: Re: Changes in hair
Post by kimtg68 on 11/15/11 at 01:57:43

Thats interesting but not my case. I started losing my hair over a year ago which was BEFORE I ever started taking any meds. So for me I know its not related to meds.
Kim

Title: Re: Changes in hair
Post by iamnotalone on 11/15/11 at 06:28:36

Wow;
I can relate ! My hair has fallen out at the "normal" times like after childbirth/hormonal upheavals-but gradually stopped afterwards.
After I was diagnosed w/TMEP- I noticed my hair was falling out like crazy when Id comb it or just run my hand over it! My hair used to be so thick, I'd only comb it with a plastic pick or wide "teasing" comb. My hairdresser said stress, and so did my allergist. BUT, I'd started the antihistamine protocol around that time too... Also been "hot flashing"/flushing a lot (hormones?) SO, curious to know what you all find out.  I did find a brand of vitamin C that is pure (so they might make Biotin also?) It says NO artificial color/flavor/preserves/milk/lactose/starch/gluten/wheat/yeast/wheat/fish/sodium. Basically free of all the stuff we need to stay away from. Sundown Naturals.
Hope this helps !
lori

Title: Re: Changes in hair
Post by Futurehope on 11/16/11 at 14:59:59

Nioxin gave me a headache from the chemicals or the smell?  I couldn't use it.  Rogaine lowered my BP and caused palpitations.  Biotin 2 pills/day for years did nothing.  Specialty hair loss multivitamins did nothing.  I hadn't blow dried my hair for years, so a hair dryer did not do any damage.
I have stopped all hair products and dyes.

I look ridiculous now compared to the full head of hair I used to have.

After trying many different solutions, including sitting under a special red laser light for 30 minutes 3X/week, I'm going to get a hair restoration system, basically a well-made hairpiece.

I've tried everything.  I cannot believe I'm dealing with this in light of the fact that I never thought for one nanosecond that hair loss would ever be a problem for me.  Well it is, and I plan on doing something.

I find this totally depressing.  It's bad enough having health issues, but why does my hair have to look so pathetic?

Title: Re: Changes in hair
Post by jbean on 11/18/11 at 12:21:02

Hair loss can be due to a lot of different reasons.  Could be due to hormonal fluctuations, vitamines/nutrition, stress, etc.  We also tend to shed at different times of the years... just like those animals!!!!

Title: Re: Changes in hair
Post by DeborahW, Founder on 11/19/11 at 15:33:27

Jill,

That is definitely something to check out. I mentioned it to my doc (also my good friend since 7th grade!), and she said that I need to have a bunch of blood tests to check on things, specifically thyroid and hormones. So, that is on my to do list!

I also bought the Biotin made by Sundown Naturals (she and I found it around the same time. Funny!). It is free of preservatives, etc. Then I got some One a Day multivitamins. Now all I have to do is remember to try them (one at a time, though. It is wise to try only one new thing, such as a vitamin, at a time so that you can identify if it bothers you.)

Title: Re: Changes in hair
Post by jbean on 11/21/11 at 14:56:48

Hate to say it Deb (and I'm right in the ballpark there too), but sometimes this starts with that PM word (perimenapause).  The hard part is that checking one's hormonal levels can be a hit or miss as far as accuracy goes.  That's one for gynecology to decipher!

With hair loss, there are so many things that factor in, that it is, forgive the pun, a real HAIRBALL to figure out!

Title: Re: Changes in hair
Post by larken on 01/02/12 at 01:09:11

I had the same thing--increased hair loss and decreased thickness. The hair loss definitely turned aroiund after I had been on Ketotifen for several months.  My husband noticed that I was shedding much less (we used to question who shed more, our Lab or me!) and then I realized that yes, I had not had nearly as much hair in the shower drain or on my brush for a while.  

However, I recently switched to Nalcrom/cromolyn as my mast cell stabilizer and I think the shedding has increased again.  I'll continue to track it.

I'm curious to learn what Dr Akin has to say.   Deborah, did you ever have the chance to ask him?  

Title: Re: Changes in hair
Post by missybean on 01/02/12 at 07:04:04

I too have been dealing with hair loss. For about 8 years. I've tried just about everything. Not sure if it is related to me hormones or thyroid or what. But I have to tell you when I was dieting that was when it was realing falling out. I was eating around 1600 calories a day which should have been fine but I guess it was not enough. If your diet is limited maybe that could be it. I heard low ferritin
Level stores can cause hair loss or slow hair growth. Mine where
Checked and fine. I believe they need to be around 70 to see hair growth. Are you anemic? Seems like lots of us have the same problem. I totally understand how you feel I have had long blonde waist length hair most of my life and people always commented on how pretty it was. I had to cut, it was not looking to hot anymore.
Melissa

Title: Re: Changes in hair
Post by phyre on 01/02/12 at 15:59:15

Sadly, hairloss is a side effect of cromolyn for women after using it for a while http://www.ehealthme.com/ds/cromolyn+sodium/loss+of+hair


Title: Re: Changes in hair
Post by Anaphylaxing on 01/02/12 at 16:28:09

My sister who is ?MCAD and on no meds had hair thinning when her symptoms started

I'm starting to notice it too but am also on a lot of meds


oh the joys!

Title: Re: Changes in hair
Post by missybean on 01/02/12 at 17:08:28

I have to say , My hair loss  has slowed way down I the past six months. Maybe the meds have helped. All the short broken hairs around my face and the ones down by my neck are growing.
Melissa

Title: Re: Changes in hair
Post by DeborahW, Founder on 01/02/12 at 17:23:13

When I recently asked Dr. Akin about this problem, he said that some H2 meds can cause this and he has some of his own patients (who take Zantac) who have this problem. I get the feeling that Zantac could be contributing to it, but then again any H2 would have this effect as well. In addition to the Zantac, I also think it is the disease itself AND (in my case) a lack of nutrition due to my inability to eat healthy foods.

Thus far I have started taking a multivitamin that doesn't bother me (One a Day for Women). I also bought some Biotin, but haven't been brave enough to try it yet.

Title: Re: Changes in hair
Post by Anaphylaxing on 01/02/12 at 18:06:40

Interesting Deborah, Thanks!

Title: Re: Changes in hair
Post by larken on 01/03/12 at 08:17:32

Thanks, Deb!  Good to know.  

I am taking Zantac, but the hair loss began well before I started it.  

Title: Re: Changes in hair
Post by GodIsLove on 01/04/12 at 17:40:59

I had hair loss so bad that I had to have my hair cut short. I take 2 Zantac daily, Dexilant and Nexium for GERD, Zrytec twice daily, Singulair daily. Took the Cromolyn but was very allergic to it. Have noticed since I cut my hair off about 4 months ago that the hair loss is not as bad. I had also had the Nissan Fundolipication done twice, the last on done Feb 2011. I am now having tremendous problems with allergic reactions not to just foods but to things that I am around. I have asthma really bad and take one medication that I have found that I am not allergic too and my rescue inhaler. I am still looking for a doctor close to my home in Georgia to help me. I hope that things get a lot better for you.
Rosemary

Title: Re: Changes in hair
Post by jbean on 01/06/12 at 05:59:05

If you can tolerate it Deb, have you thought about fish oil?  I take one of those Nature Made fish oil each day (1200 mg), and my hair is thick like a Chia Pet's.  The hairdresser hates to highlight me, as she sprains her hand doing all the foils.

Plus, the omega 3 are anti-inflammatory and my cholesterol tests are smashing.

If fish doesn't bother you, that might be something to ask your doc about. ::)

Title: Re: Changes in hair
Post by MCAS and POTSMama on 07/09/12 at 17:29:24

Hi Deborah,
Add me to the hair loss group, sadly.  I just came across this thread and I don't know if it's a relief to know there are so many of us, or a worry that it won't be fixable.  Since I had my first anaphylaxis 8-9 months ago and subsequently was diagnosed with MCAS (high N-Methylhistamine, high TNF-a, but normal tryptase), I have slowly but surely watched my hair change in texture and thin.  My hair was previously my crowning glory and favorite feature (shiny, wavy red-brown long hair) and I had already noticed significant drying with perimenopause, BUT nothing unmanageable with a little conditioning until this.  Now my hair has steadily thinned very, very noticeably (my husband recently commented on it, which totally crushed me), has a texture like straw, is brittle, breaks easily, is very dull and lost all its shine, and the amount of hair in my comb, brush, shower drain is insane... as if I am a chemotherapy patient, I can tug on the bottom of my hair and a wad falls out.  Puts me in tears daily, I admit.

I know the hair thing is just vanity, but I feel like this illness has taken so much else away from me already, that this is the last indignity ... I've already lost a lot of my energy level/vitality, my confidence to try some new things or travel to new places for fear of running into perfumes or scents that will fell me, I no longer can have the joy of eating or of a good glass of wine, and I don't feel well enough some days to do all the things I want to do with my kids.  But after being so debilitated and practically housebound at first, I was finally able to get to a stable enough point on meds where my symptoms are enough under control that I am back to work, can drive my kids to places they need to go, keep the house clean, etc, and I'd accepted my limitations in some of these other areas... then this hit - - and I feel very depressed about it. At this rate, I won't have any hair left in a couple more months.  I told my husband we better go get another family pic taken before I'm bald, as I won't take pictures after that...

In my case, I don't know if it's the illness, the meds, the stress, hormones (I had mine checked shortly before the anaphylaxis and I was low on progesterone and testosterone) or the diet.  I was on the meds for about 6 months before the hair problem started, and my illness got more under control with the meds even before the hair problem (although I do note I still break out in bumps on my scalp at times when I'm having a low-level anaphylaxic/anaphylactoid (?) reaction).  And I feel much less stressed EXCEPT for the hair thing, which is stressing me mightily right now I admit.  I read online somewhere that Singulair might be an issue too (hair loss is not listed as a side effect, but I came across a forum where people said that it was a factor for them, and that their hair recovered when they got off of it, so I may try to drop it and see what happens, but I get wheezy without it sometimes).  I take 2 Zantac daily, 3-4 hydroxyzine, Benadryl as needed, 1 Singulair and 1 Allegra daily right now.  I have tried every conditioner/hot oil treatment, blowdrying less, etc., to no avail.  So I think it's either the illness itself or my limited diet as most likely culprits, since I am clearly not eating nutritiously.  I do take a multivitamin though (2 Solaray children's chewables that are dye-free), and I take extra D-vitamin (I had my D and B vit levels checked recently, and I was fine on both, after having previously been very low on D).

Anyone else have any success with any treatment?  Deborah, are you doing any better on the biotin and multivit?  I bought Neuroprotek from Dr. Theo's company and it is sitting on my counter, but I've been a little afraid to try it since I'm still so reactive to every food I try. Has anyone ever had a bad reaction to it? I used to take Omega 3 fish oil, but I'm afraid of trying that again too.
Thanks for listening,
Carol

Title: Re: Changes in hair
Post by MCAS and POTSMama on 07/09/12 at 17:30:31

Hi Deborah,
Add me to the hair loss group, sadly.  I just came across this thread and I don't know if it's a relief to know there are so many of us, or a worry that it won't be fixable.  Since I had my first anaphylaxis 8-9 months ago and subsequently was diagnosed with MCAS (high N-Methylhistamine, high TNF-a, but normal tryptase), I have slowly but surely watched my hair change in texture and thin.  My hair was previously my crowning glory and favorite feature (shiny, wavy red-brown long hair) and I had already noticed significant drying with perimenopause, BUT nothing unmanageable with a little conditioning until this.  Now my hair has steadily thinned very, very noticeably (my husband recently commented on it, which totally crushed me), has a texture like straw, is brittle, breaks easily, is very dull and lost all its shine, and the amount of hair in my comb, brush, shower drain is insane... as if I am a chemotherapy patient, I can tug on the bottom of my hair and a wad falls out.  Puts me in tears daily, I admit.

I know the hair thing is just vanity, but I feel like this illness has taken so much else away from me already, that this is the last indignity ... I've already lost a lot of my energy level/vitality, my confidence to try some new things or travel to new places for fear of running into perfumes or scents that will fell me, I no longer can have the joy of eating or of a good glass of wine, and I don't feel well enough some days to do all the things I want to do with my kids.  But after being so debilitated and practically housebound at first, I was finally able to get to a stable enough point on meds where my symptoms are enough under control that I am back to work, can drive my kids to places they need to go, keep the house clean, etc, and I'd accepted my limitations in some of these other areas... then this hit - - and I feel very depressed about it. At this rate, I won't have any hair left in a couple more months.  I told my husband we better go get another family pic taken before I'm bald, as I won't take pictures after that...

In my case, I don't know if it's the illness, the meds, the stress, hormones (I had mine checked shortly before the anaphylaxis and I was low on progesterone and testosterone) or the diet.  I was on the meds for about 6 months before the hair problem started, and my illness got more under control with the meds even before the hair problem (although I do note I still break out in bumps on my scalp at times when I'm having a low-level anaphylaxic/anaphylactoid (?) reaction).  And I feel much less stressed EXCEPT for the hair thing, which is stressing me mightily right now I admit.  I read online somewhere that Singulair might be an issue too (hair loss is not listed as a side effect, but I came across a forum where people said that it was a factor for them, and that their hair recovered when they got off of it, so I may try to drop it and see what happens, but I get wheezy without it sometimes).  I take 2 Zantac daily, 3-4 hydroxyzine, Benadryl as needed, 1 Singulair and 1 Allegra daily right now.  I have tried every conditioner/hot oil treatment, blowdrying less, etc., to no avail.  So I think it's either the illness itself or my limited diet as most likely culprits, since I am clearly not eating nutritiously.  I do take a multivitamin though (2 Solaray children's chewables that are dye-free), and I take extra D-vitamin (I had my D and B vit levels checked recently, and I was fine on both, after having previously been very low on D).

Anyone else have any success with any treatment?  Deborah, are you doing any better on the biotin and multivit?  I bought Neuroprotek from Dr. Theo's company and it is sitting on my counter, but I've been a little afraid to try it since I'm still so reactive to every food I try. Has anyone ever had a bad reaction to it? I used to take Omega 3 fish oil, but I'm afraid of trying that again too.
Thanks for listening,
Carol

Title: Re: Changes in hair
Post by PamH on 07/10/12 at 05:07:06

My hair loss started before I knew I had a mast cell issue. I think it is better now. I wear it really short so don't notice it as much.The teen multi vitamin from GNC doesn't have salicylates and a good one to try. Its called Mega Teen.
Pam

Title: Re: Changes in hair
Post by DeborahW, Founder on 07/10/12 at 08:23:40

Well, I can report back on the hair change issue. I asked Dr. Akin if anything mast cell related could be affecting it. He didn't think that the disease was doing anything, however, he told me he has seen seen hair thinning as a side effect of some medications, most notably H2 antihistamines such as Zantac. He suggested other causes could be thyroid disease or hormonal and nutritional changes. He thought that a multivitamin would be helpful as well.

Given that information, I found a multivitamin that doesn't bother me (One a Day for Women) and started taking that. I had been taking a high dose of Zantac per day (600 mg). So, BECAUSE I WAS SO STABLE, I decided to very slowly taper down my Zantac to just 300 mg per day. It took at least a month to reduce the doseage, because I did it so carefully. I had been taking a 300 mg Zantac in the morning and another at 4 pm each day. I started reducing by purchasing 150 mg Zantac pills. Then I took the 150 mg  in the morning and my normal 300 mg pill at 4 pm. I did that for about 2-3 weeks. Feeling fine with that, I then switched the 4 pm Zantac to 150 mg as well. I remained feeling fine, so I was happily able to reduce my H2 med in half. (Important to note that I am very stable and have been for years. I would not reduce my meds if I was still sick all the time.)

So, how is my hair since I cut my Zantac to 300 mg per day rather than 600mg per day? Well, I THINK that it is actually better! It still isn't my abnormally thick mane of hair, but my hair is finally looking full and voluminous again. (It has always been long, but I think it is starting to look thicker again.) I also used to have my eyelashes breaking, which drove me crazy because I always had tons of long eyelashes as well. Well, they no longer break, so I think that is a good sign as well.

In regard to dry hair and skin, you definitely need to drink tons of water, and keep trying conditioners from your hairstylist. They might be better quality and help resore life to your hair. I currently use a pricier one from my salon, but it works great at restoring moisture and shine to the hair. It is called "It's a 10" Hair Mask, and I also use their "Miracle Leave in" Spray on my hair. I now have super shiny and soft hair. I just googled it and apparently you can order it from Walgreens! (Cheaper than my salon, hmmmm). Here is a link if you are interested: http://www.walgreens.com/search/results.jsp?Ntt=Its+a+10&x=34&y=8&ext=gooBeauty_GVB_Exact_Its_a_10&sst=3536f5a1-3adf-3c09-13c8-00007385b209

Now, I also get my hair highlighted/colored with a glaze put on by my hairdresser. I wonder if that adds to my hair shine....don't know for sure.

I also just returned from a week in Hilton Head. We pretty much spent the entire week in the salt water pools, and my skin became so soft and not dry!! In all of the restaurants there, they have sea salt scrub for your hands in the bathroom. I noticed that using this also kept my normally dry hands super soft. So, I bought some to bring home and I checked out their website and plan to order a product for the face as well. (secretoftheislands.com)

So, that is my latest info on my hair investigation and my meds! Hope my experiences might help some of you.

Title: Re: Changes in hair
Post by MCAS and POTSMama on 07/10/12 at 09:02:26

Pam and Deborah,
Thanks so much -- your responses give me hope! I mean, I went in 6 months from luxurious thick shiny hair people admired to about 50% thinner (no kidding, I've lost that much), and completely dull and lifeless and brittle and terribly ugly hair (I can't look in the mirror without feeling sad), despite trying every deep hair conditioner on the market to add moisture back in (to no avail).

But my diet has been VERY restricted for the last 6-8 months and I have started thinking that I need to take a better multivitamin daily AND drink more water.  I also think I need to add essential oils back into my diet - - and if I find I can tolerate it, I'm going to take some Omega 3 and Neuroprotek too.  And yes, go to my hairdresser for help (appointment tomorrow, but I worry about how the smells in the place may affect me so I will take a mask and pre-medicate with Benadryl just in case!).  

I used to color my hair myself with a semi-permanent rinse and that always made it feel plump and soft, but I had been afraid to do it due to the anaphylaxis risk until two days ago.  I found one that didn't have the hydrogen peroxide or PPD chemicals (a natural rinse) and used that without too much itching, so thinking of trying more soon since that will only last for a few shampoos.  But I will also ask my hairdresser if there are any very natural products they have or recommend.  I am only on 300 mg Zantac/day (150 mg in morn and 150 in eve), so don't think I will mess with any of my meds just yet but try the other things first ... because I am MORE stable (haven't had an anaphylaxis beyond low-level symptoms in many months, I'm back to work and able to go most places), but not completely stable yet (places with chemical smells, women's perfume, or when I try a new food - - all make me flare).  

A nurse I work with told me that sometimes sudden weight loss of >15 lbs shows up as hair loss 3-6 months later, and I did suddenly lose a lot of weight when I first came down with this since I couldn't eat, so that timing seems right too.  She swears that once I eat more nutritious food, I'll be better -- but of course she has no idea what a chore it is to try to find nutritious food I CAN eat without reacting.  

So hard to know what is the cause!  I do think I'll go in for a thyroid exam soon too, in case that's a factor.  I did have my D and B12 levels checked and they were fine.

Yes, I'm vain, I admit it! But I'm a 53 year old mom to girls aged 12, 12, and 9 (two of them adopted) and I don't want to look like their grandmother due to limp, graying, thin hair! :0

Thanks all, I'm a little less blue this morning than when I wrote that first reply last night.  I am not giving up! :)

Title: Re: Changes in hair
Post by texan1960 on 07/10/12 at 13:41:10

Debra
Found a website that listed medications that may cause hairloss and h2 antihistamines were in list along with many other meds. Anyone who also has ic elmiron is known for hairloss. Also we do tend to lose hair as we get older. I have a ton of hair still too much but I have noticed it being down to a more manageable amount. I took elmiron for over a year knowing it can cause clumps of hair loss in a few people but while it didn't work for me neither did it cause my hair to fall out. At that point I was in so much pain I would have worn a rainbow clown wig to get myself out of it...so I've tried to stay philosophical about the hairloss thing. :o

Title: Re: Changes in hair
Post by MCAS and POTSMama on 07/10/12 at 17:40:39

Texan, Would you mind posting that website? Thanks.

Title: Re: Changes in hair
Post by texan1960 on 07/11/12 at 00:58:12

Here is one about zantac

http://www.medicinenet.com/script/main/mobileart.asp?articlekey=861&page=4
I found a general listing...will see if I can find it again and post it today but as I recall it was specifically a hairloss site
Found it
http://www.womenshairlossproject.com/hair-loss/drugs-that-can-cause-hair-loss/

Title: Re: Changes in hair
Post by MCAS and POTSMama on 07/11/12 at 16:06:41

Thanks, Texan - - that's a great site!
Carol

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