Re: 3 and a half yrs post explant and STILL loosing hair/Jane

[Guest guest]

Jane, You did not offend me by saying the hair thing is a whole

hell in itself. I am sorry to hear you are having the same problem.

I am glad that I can at least come here and share with others that

understand this mess. Sometimes I feel so alone, as I do not talk

about my problems to others, except here. I totally are with you on

this one. I had such unique crazy, thick, spiral curly hair.

Everywhere I went, people would compliment it. Now wherever I go, I

leave hair behind!! I cry alone about it also. I am trying to

prepare myself mentally to where it gets so thin, that I cannot hide

it anymore, although I do not think one can prepare themselves for

that? When I am in a BAD flare, my scalp burns so bad I cannot even

wear a clip or touch it(although I find this happening less and

less). I read this is common in FMS. I had a family memember say to

me 'it is only hair'. Yeah, if it was them, they would be flpping

out!! I am praying that they can fix your meds to at least help your

hair. Thank you for the vent, and understanding. I fell less alone.

Hugs, and health. Terry/dimonds

>

> Also, my scalp has a " crawly " feeling. It's awful. I too take

Xanax on those " bad " days.

> As difficult as this is for some of you to hear, (I apologise if I

offend you) the hair loss for me is much worse than butchery of my

breasts and the whole implant thing (although that's another form of

hell too).My hair was my pride and joy the type of hair that people

on the street or in the mall, or at school would stop me and tell me

how pretty it was.Now to see my scalp, is just awful.

> The loss of hair on my scalp is evenly distributed, no pattern. I

have body hair loss too.I fear I'll never get my hair back.

>

> dimonds68 <Dimonds6881@h...> wrote:

> Gotta keep venting on this subject. I dont' understand it. It is 3

> and a half yrs post explant, and I am still loosing hair like

crazy.

> I am only taking .5mg of xanax per day at nite. I started taking

saw

> pametto 2 months ago, with no help. it is pissing me off. anyone

> else? thanks for the vent. Terry p.s all my tests are neg. I have

no

> weight gain.

>

>

>

>

>

[Guest guest]

Diamonds:

Hi. I can relate to what you're saying.

Do you have positive ANAs? I have two other friends with autoimmune issues and hair loss and they have what is called Burning Scalp Syndrome(BSS) too.That's an actual recognised dermatological disorder that often times accompanies chronic forms of telogen effluvium that are usually of an autoimmune nature--at least that's what two dermatologists told me.One dermatologist I went to wondered if my implants (even though they were taken out within a few weeks) triggered more hair loss than what would otherwise would have just been from the surgery. I guess I'll never know.

Have you been to a doctor about this?I went to a few endos to make sure I did not have a male hormone issue or PCOS or andrenal hyperplasia. CTE in women is usually hormonal and/or autoimmune. I never had BSS, just the "crawlies." Apparently, some docs believe that the crawlies (medical term scalp dysthesia) are a part of having TE (telogen effluvium)--so many hairs entering the resting phase has an impact on substance P nerves that cause this sensations.

I know I'm going to dump a bunch of hair about 1-3 months after surgery I get the crawlies and I know what's coming. It sux.

Diamonds, like you, I can't talk to other people about this, only here and on keratin.com. By the way, they have medical lit on hair loss and implants and all other causes too.

I know what caused my loss, I just pray I get it back, even if it's just 3/4 or half. I'll share all the info with you all I have on this subject.

dimonds68 <Dimonds6881@...> wrote:

Jane, You did not offend me by saying the hair thing is a whole hell in itself. I am sorry to hear you are having the same problem. I am glad that I can at least come here and share with others that understand this mess. Sometimes I feel so alone, as I do not talk about my problems to others, except here. I totally are with you on this one. I had such unique crazy, thick, spiral curly hair. Everywhere I went, people would compliment it. Now wherever I go, I leave hair behind!! I cry alone about it also. I am trying to prepare myself mentally to where it gets so thin, that I cannot hide it anymore, although I do not think one can prepare themselves for that? When I am in a BAD flare, my scalp burns so bad I cannot even wear a clip or touch it(although I find this happening less and less). I read this is common in FMS. I had a family

memember say to me 'it is only hair'. Yeah, if it was them, they would be flpping out!! I am praying that they can fix your meds to at least help your hair. Thank you for the vent, and understanding. I fell less alone. Hugs, and health. Terry/dimonds> > Also, my scalp has a "crawly" feeling. It's awful. I too take Xanax on those "bad" days.> As difficult as this is for some of you to hear, (I apologise if I offend you) the hair loss for me is much worse than butchery of my breasts and the whole implant thing (although that's another form of hell too).My hair was my pride and joy the type of hair that people on the street or in the mall, or at school would stop me and tell me how pretty it was.Now to see my scalp, is just awful.> The loss of hair on my scalp is evenly distributed, no pattern. I have body hair loss too.I fear I'll never get my hair back.> > dimonds68 wrote:>

Gotta keep venting on this subject. I dont' understand it. It is 3 > and a half yrs post explant, and I am still loosing hair like crazy. > I am only taking .5mg of xanax per day at nite. I started taking saw > pametto 2 months ago, with no help. it is pissing me off. anyone > else? thanks for the vent. Terry p.s all my tests are neg. I have no > weight gain. > > > > >

[Guest guest]

Jane, I do not have a positive ANA. Infact, my bloodwork is normal,

except a few years back a Dr. found a glich in my immune system.

Sometimes I think they are missing something, or I get paraniod like

what if down the road I develop Lupus or something? My health has

improved alot, but then again..I never know what will be down the

road. I am so thankful to have come this far. It is strange also,

because I don't catch alot of colds and such(maybe once a yr).

I saw your post about the XANAX. I take .5mg at nite to sleep(I

have been taking it for a few years, and it still works great).

Sometimes if I need it, I will take and extra half, here and there.

I do believe for me, getting a good nites sleep(using the xanax),

helped me improve alot.( I used to take Restoril a few yrs ago,

which is a sleeping pill(as well as the xanax) , but find I no

longer need it!!) ALSO, the first 2 years I had anxiety so bad,it

truly saved my sanity!! Have you posted your implant story in the

files? Thank you for the juice plus link, I will check it out. I

wish you everything well!! hugs TERRY/dimonds

- In , Jane Doe <oceanlilly_csu@y...>

wrote:

> Diamonds:

> Hi. I can relate to what you're saying.

>

> Do you have positive ANAs? I have two other friends with

autoimmune issues and hair loss and they have what is called

Burning Scalp Syndrome(BSS) too.That's an actual recognised

dermatological disorder that often times accompanies chronic forms

of telogen effluvium that are usually of an autoimmune nature--at

least that's what two dermatologists told me.One dermatologist I

went to wondered if my implants (even though they were taken out

within a few weeks) triggered more hair loss than what would

otherwise would have just been from the surgery. I guess I'll never

know.

>

>

> Have you been to a doctor about this?I went to a few endos to make

sure I did not have a male hormone issue or PCOS or andrenal

hyperplasia. CTE in women is usually hormonal and/or autoimmune. I

never had BSS, just the " crawlies. " Apparently, some docs believe

that the crawlies (medical term scalp dysthesia) are a part of

having TE (telogen effluvium)--so many hairs entering the resting

phase has an impact on substance P nerves that cause this sensations.

> I know I'm going to dump a bunch of hair about 1-3 months after

surgery I get the crawlies and I know what's coming. It sux.

>

> Diamonds, like you, I can't talk to other people about this, only

here and on keratin.com. By the way, they have medical lit on hair

loss and implants and all other causes too.

>

> I know what caused my loss, I just pray I get it back, even if

it's just 3/4 or half. I'll share all the info with you all I have

on this subject.

>

>

>

> dimonds68 <Dimonds6881@h...> wrote:

> Jane, You did not offend me by saying the hair thing is a whole

> hell in itself. I am sorry to hear you are having the same

problem.

> I am glad that I can at least come here and share with others that

> understand this mess. Sometimes I feel so alone, as I do not talk

> about my problems to others, except here. I totally are with you

on

> this one. I had such unique crazy, thick, spiral curly hair.

> Everywhere I went, people would compliment it. Now wherever I go,

I

> leave hair behind!! I cry alone about it also. I am trying to

> prepare myself mentally to where it gets so thin, that I cannot

hide

> it anymore, although I do not think one can prepare themselves for

> that? When I am in a BAD flare, my scalp burns so bad I cannot

even

> wear a clip or touch it(although I find this happening less and

> less). I read this is common in FMS. I had a family memember say

to

> me 'it is only hair'. Yeah, if it was them, they would be flpping

> out!! I am praying that they can fix your meds to at least help

your

> hair. Thank you for the vent, and understanding. I fell less

alone.

> Hugs, and health. Terry/dimonds

> >

> > Also, my scalp has a " crawly " feeling. It's awful. I too take

> Xanax on those " bad " days.

> > As difficult as this is for some of you to hear, (I apologise if

I

> offend you) the hair loss for me is much worse than butchery of my

> breasts and the whole implant thing (although that's another form

of

> hell too).My hair was my pride and joy the type of hair that

people

> on the street or in the mall, or at school would stop me and tell

me

> how pretty it was.Now to see my scalp, is just awful.

> > The loss of hair on my scalp is evenly distributed, no pattern.

I

> have body hair loss too.I fear I'll never get my hair back.

> >

> > dimonds68 wrote:

> > Gotta keep venting on this subject. I dont' understand it. It is

3

> > and a half yrs post explant, and I am still loosing hair like

> crazy.

> > I am only taking .5mg of xanax per day at nite. I started taking

> saw

> > pametto 2 months ago, with no help. it is pissing me off. anyone

> > else? thanks for the vent. Terry p.s all my tests are neg. I

have

> no

> > weight gain.

> >

> >

> >

> >

> >

[Guest guest]

Hi Diamonds:

Do you have hormonal symptoms such as acne or hair growing in odd places? Have you had all hormones checked for an imbalance?

From what I gather, one can have negative ANAs but still have an autoiimune issue so who knows. My ANAs are very low.dimonds68 <Dimonds6881@...> wrote:

Jane, I do not have a positive ANA. Infact, my bloodwork is normal, except a few years back a Dr. found a glich in my immune system. Sometimes I think they are missing something, or I get paraniod like what if down the road I develop Lupus or something? My health has improved alot, but then again..I never know what will be down the road. I am so thankful to have come this far. It is strange also, because I don't catch alot of colds and such(maybe once a yr).I saw your post about the XANAX. I take .5mg at nite to sleep(I have been taking it for a few years, and it still works great). Sometimes if I need it, I will take and extra half, here and there. I do believe for me, getting a good nites sleep(using the xanax), helped me improve alot.( I used to take Restoril a few yrs ago, which is a sleeping pill(as well as the xanax) , but find

I no longer need it!!) ALSO, the first 2 years I had anxiety so bad,it truly saved my sanity!! Have you posted your implant story in the files? Thank you for the juice plus link, I will check it out. I wish you everything well!! hugs TERRY/dimonds- In , Jane Doe wrote:> Diamonds:> Hi. I can relate to what you're saying.> > Do you have positive ANAs? I have two other friends with autoimmune issues and hair loss and they have what is called Burning Scalp Syndrome(BSS) too.That's an actual recognised dermatological disorder that often times accompanies chronic forms of telogen effluvium that are usually of an autoimmune nature--at least that's what two dermatologists told me.One dermatologist I went to wondered if my implants (even though they were taken out within a few weeks) triggered more hair loss than what would otherwise would have just

been from the surgery. I guess I'll never know.> > > Have you been to a doctor about this?I went to a few endos to make sure I did not have a male hormone issue or PCOS or andrenal hyperplasia. CTE in women is usually hormonal and/or autoimmune. I never had BSS, just the "crawlies." Apparently, some docs believe that the crawlies (medical term scalp dysthesia) are a part of having TE (telogen effluvium)--so many hairs entering the resting phase has an impact on substance P nerves that cause this sensations.> I know I'm going to dump a bunch of hair about 1-3 months after surgery I get the crawlies and I know what's coming. It sux.> > Diamonds, like you, I can't talk to other people about this, only here and on keratin.com. By the way, they have medical lit on hair loss and implants and all other causes too.> > I know what caused my loss, I just pray I get it back, even if it's just

3/4 or half. I'll share all the info with you all I have on this subject.> > > > dimonds68 wrote:> Jane, You did not offend me by saying the hair thing is a whole > hell in itself. I am sorry to hear you are having the same problem. > I am glad that I can at least come here and share with others that > understand this mess. Sometimes I feel so alone, as I do not talk > about my problems to others, except here. I totally are with you on > this one. I had such unique crazy, thick, spiral curly hair. > Everywhere I went, people would compliment it. Now wherever I go, I > leave hair behind!! I cry alone about it also. I am trying to > prepare myself mentally to where it gets so thin, that I cannot hide > it anymore, although I do not think one can prepare themselves for > that? When I am in a BAD flare, my scalp burns so bad I cannot even

> wear a clip or touch it(although I find this happening less and > less). I read this is common in FMS. I had a family memember say to > me 'it is only hair'. Yeah, if it was them, they would be flpping > out!! I am praying that they can fix your meds to at least help your > hair. Thank you for the vent, and understanding. I fell less alone. > Hugs, and health. Terry/dimonds> > > > Also, my scalp has a "crawly" feeling. It's awful. I too take > Xanax on those "bad" days.> > As difficult as this is for some of you to hear, (I apologise if I > offend you) the hair loss for me is much worse than butchery of my > breasts and the whole implant thing (although that's another form of > hell too).My hair was my pride and joy the type of hair that people > on the street or in the mall, or at school would stop me and tell me > how pretty it was.Now to

see my scalp, is just awful.> > The loss of hair on my scalp is evenly distributed, no pattern. I > have body hair loss too.I fear I'll never get my hair back.> > > > dimonds68 wrote:> > Gotta keep venting on this subject. I dont' understand it. It is 3 > > and a half yrs post explant, and I am still loosing hair like > crazy. > > I am only taking .5mg of xanax per day at nite. I started taking > saw > > pametto 2 months ago, with no help. it is pissing me off. anyone > > else? thanks for the vent. Terry p.s all my tests are neg. I have > no > > weight gain. > > > > > > > > > >