Shedding like a dog!!

[Lovely101]

Hi all!

I'm curious if any other Chiarians have a shedding Problem?!? This may be completely un-related to Chiari... but i figured it was worth asking. For about the last year I have been shedding to a crazy degree! When I shower I each time I run my hands through my hair, I get Handfuls! This morning when i dried my hair.. i actually started crying afterwards cuz there was sooooo much hair laying on the sink!  Some days its a little better than others. Just curious if anyone else has had this......

[Lddesign65]

Hi, thank you for the reply. I figured with this thread being so old, I may not receive any responses. Happy that you did but I will go ahead and start another. I have not had the decompression surgery, my doctors feels it should be done but said that due to another illnesses and my age (52) I am not a good candidate. However, the bolt test that I had was referred to as a brain surgery. The doctor did have to cut my scalp then drill into my skull where he placed the wires that would read the pressure in my head for 24 hours. I'm not sure if this also could cause it to fall out the the decompression surgery. I just hope I can figure it out before it's all gone. Thank you again. Lorene

[selmaS]

I had surgery two months before turning 50...so not sure if age is a reason...not sure what other medical issues you have to prevent one....

[Lddesign65]

I was diagnosed is 2010. In 2016 I had the bolt test done to check the amount of flui pressure. It's seems that within days of that procedure my hair started falling out like crazy, I am so upset over it. This also the same time that the neurosurgeon started me on high doses of diamox. I know one of the 2 has to have something to do with it. Is anyone else loosing their hair that is also on diamox? Thanks

[selmaS]

Hi and welcome to the Chiari forum.

May I ask, have you had the decompression surgery? You may want to create a new thread to get more replies to your questions. I had only had my hair fall out post op.....it was due to the trauma from surgery and it did not amount to much in the long run......

[4inline]

I have shed hair for years more than normal, but it didn't affect the thickness of it.  I had really thick hair and it didn't make a difference.  Well, my Chiari symptoms kicked in about 7 months ago and I noticed sometime after that that my hair is coming out in droves.  I just pull it out by the handful.  From meds or what, I don't know.  It's growing back in though and the reason I know that is because it's just little fuzzies all over my head from the new growth.  I can't tame it.  No matter how I wear it or what I do I have the fuzzies.  So although no real bald spots, I can tell my  hair has thinned like when I put it in a ponytail.  Make sense?

[dkdean]

I am shedding a ton, but was thinking it was med related...not sure if it goes along with neurontin or not, but that's when I really noticed a difference.  But, no bald spots AND my vision is better--so, no complaints!!!

[redkim]

I always lose hair around this time of year, each person does have a shedding period where they will lose about 10% of their hair.  I saw a demotoligst who told me to look for the white bulb on the end of your hair.  If it's there it means your haif follicle isn't damaged and you will still grow hair there.  I hope this helps.

[EmiBug]

Lovely-

I have lost so much hair since my surgery! It is normal though- so don't fret.
Your body is like in shock (sort of) from the trauma of having surgery, so your hair falls out.

It also happens when you're under an immense amount of stress.

Hope you feel better!
Love,
Emily

[Danaan]

I used to shed hair every fall growing up. I lost 50% of my hair on Topomax- it wasn't helping my headaches, I stopped taking it,and my hair came back in.

In addition to CM I am hypothyroid (& under treatment), and I still had bouts of hair loss.  I saw on a thyroid info site how some women's hair shedding is helped by taking evening primrose oil (EPO):
http://thyroid.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=thyroid&cdn=health&tm=12&f=00&su=p726.8.336.ip_&tt=2&bt=1&bts=0&zu=http%3A//www.thyroid-info.com/articles/hairloss.htm

I started taking EPO in the same manner as the author stated in the webpage above, and my hair shedding stopped! Of course YMMV, and there are lots of reasons why excessive hair shedding occurs. So check out this site, and as always check to be sure any new supplement won't clash with your current medications, supplements, or diet. Hope this helps!

Dana

[Lovely101]

Selma,
I have not been tested for the thyroid issues. I brought it up to my PCP.. but he is like "chiari... can you spell that... i need to google it"      So he really wasnt helpful. My neurologist says chiari is the neurosurgeons problem and my neurosurgeon says unless im scheduling surgery... it is the NL's problem.  HAHA  So yea my local circle of doctors isnt helpful and I gave up on them and havent been going. Im looking into the WI Chiari Center and when i called they said they do a blood panel and look at the thyroid/b12/etc so I'm hoping if i go up there they will look at all those issues!   My most annoying symptoms is these strange feelings in my throat that are there 24/7... which ive found can also be thyroid. hmmm... interesting!

[soccero]

I have really thick hair but I loose sooooo much of it I always have but ever since I've been on topamax it's been really bad luckly since my hair is so thick it is not very noticeable.
Molly

[selmaS]

Hi...yes, and after surgery this can increase as the trauma of the surgery can cause this to happen as well, but I think if u r having hair fall out, u may have an autoimmune issue with ur thyroid....once medicated it does slow down.

When I still got my monthly, I would experience it around that time too....I no longer get that time of the month to deal with , but I still have issues with my hair falling out...but it is still thick...and not thinning at all...so, until  my thyroid meds r where they need to be, I may continue to experience this.

Have u been tested for Hashimoto's?

"selma"

[taylapj]

Do u know the horrible thing, when my alapecia started I joked to my bf by saying oh it's something inside my head feeding off my hair lol really bad I know, It's alapecia, vitamin deficiency and stress that causes it isn't it, I don't need any medicatio for it, I've even noticed a bit on the left side of my head but only if I wear my hair up, soooo don't wanna loose all my hair tho.

[Lovely101]

I am not on any meds. I have been offered them.. but I HATE taking drugs! The only thing I take is over the counter Ibuprofen/Tylenol on days that I wanna cut off my head! LOL
So I know its not a side effect thing! I first noticed it throughout 2009. It woudl come and go.. I woudl shed for a week or two then stop for a month or two. All hell broke loose January 2010 and my chiari symptoms started. Since then.. the shedding has been consistent!  Seems like too many of us experience the problem for it to be totally not chiari related!

[taylapj]

How bizarre, check the pic on my profile, after i noticed it one day that's when EVERYthing started. My baldy patch.

[lu7997]

I do. But only fom the topamax.  I have been off of it for about 8 months now and finally starting to see an improvement in the hairloss.    Are u on any meds?    Hairloss is a common side effect for many.  

[emza1910]

OMG - i do... but ive not been told yet that i hav chiari actually ive had no answers jus fobbed off. you can see where im losin it too, took ages for it to grow back and yet again its fallin out again. its got to the point now where i dont brush it i jus run me fingers through it, washin it i get clumps of it too. i was told its normal after havin children but come on - my youngest has jus turned 4yrs old.

[northernstarmn]

I also lost a lot of hair,esp right after symtpoms kicked in high gear--- since decomp & having my entire head shaved as hair grows back it seems thinner ( i had very course hair b4) and healthier....

I cant says its related to Chiari but it sure seems like it..