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Hey everyone...

For the last couple weeks i've noticed that my hair is falling out alot easier and in bigger quantities than ever before. But i've been ignoring it. But i just got out of the shower bawling because it came out handful after handful. It's not normal. It's funny... i've been taught how to cut/style people that are losing there hair and how to support them and be encouraging, but now that it's me i don't know what to do. I know it doesn't help but i just want to be done with this whole thing, like i'm sure all of us do. But this is def. my breaking point. I don't think i can deal with losing my hair!

Sorry to complain and sorry it's long, but has anyone experienced this?

Hillary

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hi hillary -

i can definitely relate with how much of a shock hair loss can be.

i have had it occur twice - for different reasons & to different degrees - so have a couple of thoughts/questions for you...

first, as upsetting as it is, it's probably nothing "dangerous" per se. that does NOT mean that it can't mean something is going on & you should definitley talk with your doc about it....

second, have you started any new meds recently? there are many out there that can cause issues with hair loss. if you've started anything....even if it was weeks ago, even if it's something "natural", even if it's something you took in the past, etc....it's something worth looking into. sometimes pharmacists know more about unusual side-effects than the docs themselves & of course you can look up info online too. NOT as a replacement for talking with your doc but for some info/fact-finding (since your doc probably isn't open in the middle of the night!)

third, has there been any major change in your eating habits in the past few months? or major GI problems? diets? rapid weight loss? nutritional issues - whatever the cause - can cause hair loss....

and a few other options....

-stress - especially the physical stress of illness - can cause hair loss in some people. not "oh no i have a test tomorrow that i didn't study for" stress but more lasting stress.

-thyroid. you've probably had the bloodwork done, but if not, thyroid problems (as well as other endocrine issues) can cause hair loss.

personally, the first time i lost my hair i lost almost all of it in a matter of days. i had viral meningitis & it was either a reaction to the high dose of steroids (not typical but supposedly possible) or the high fever or a combo or who knows what. the kids i coached the next summer called me fuzzy wuzzy as my bald head started to acquire a bit of fuzz again. (as in the "fuzzy wuzzy was a bear, fuzzy wuzzy had no hair. fuzzy wuzzy wasn't fuzzy, was he?....) :) i didn't "like" losing it but as it happened about the same time that i started to feel better (from the meningitis) i was so relieved that i think it bothered me less. and i realized that i was lucky to have it happen mid-college versus at the end of college while interviewing for jobs, etc....i was working at a pool & as a pretty traditional/type-A gal made the most of many folks back home thinking i'd totally gone punk & had

shaved my head. it wasn't all that easy & growing it back was pretty awkward at certain stages, but i experimented (and liked) much shorter hair that i ever would have ventured previously & made the best out of a not-so-great situation. several years later i even chopped off the grown-back hair & donated it to locks-of-love

the other time was just this past year and was not nearly as drastic. i have (had) super thick hair (both before & after losing it post-meningitis) and this past year, when super ill in the winter/early spring i lost between a third & a half of it. but b/c it started out so thick it simply thinned out a lot & wasn't noticable to those who didn't know me as well, esp. if i kept it back. but my ponytail holder had to be wrapped around twice as many times as before & i definitely noticed the thinning, despite trying to ignore it at first. this time the loss was more gradual & more spread out (versus in clumps) and was likely due to a combo of my body being stressed from illness, surgery, nutritional issues (as i was having major GI issues, weight loss, etc), and the like. i had a lot of skin issues around the same time & while there was no specific "answer" for the hair loss no one seemed too surprised in light of everything else that was going on. b/c of everything else going on it was sort of the "least" of my concerns...i was more concerned about other things...but it still bothered me, and concerned me in light of what it meant in relation to everything else of course. as i was able to eat more regularly again the hair loss decreased/stopped & it's thickening up again (despite the fact that much of my body is still quite a mess!) so...no fuzzy wuzzy this go around:-)

bottom line....i would definitley talk to your doctor but try not to worry too much. i know that's easier said than done, and can only imagine that it's more so with the type of school you're in.

hang in there,

:blink: melissa

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Hello

Sorry to hear that your hair is falling out. Do you have another illness that would cause such a thing to be happening? I'm not aware of orthostatic problems causing severe hair loss. Could it be due to some type of nutrient loss? I do know that certain meds can do this as well as certain other health problems (illnesses). I can understand the anguish you feel, our daughter who has UC and during when her illness was at it worst and while taking high doses of Prednisone etc lost about 75% of her hair. It came out by the handfuls also. Maybe question your doc about your medications side effects, if you are taking any, to see if that might be causing it to fall out.

Good luck

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Hi Hillary... So sorry you are experiencing this. I have had pots for the last year and a half and have gone through a couple of cycles of hairloss. I have really thick hair and it was most noticeble for me around my bang area and sides. I had long hair and ended up getting a short hairstyle to try and hide it. Right now, it seems to be coming back somewhat again. I had thinning only, no areas of complete hairloss. I think the most distressing thing for me was not knowing how much I was going to lose or if it was eventually going to stop falling out.

You should talk to your doctor about it. Mine did more tests on my thyroid to rule things out and talked about it possibly being related to decreased circulation to my scalp/hair folicles because of the pots. Also mentioned a slight possibility of it being related to the beta blocker I was on.

As I said, mine seems to be thickening back up again (I hope I hope!) so I am hoping yours will do the same. Hang in there. All you can do is try to deal with what comes along as best you can. Laura

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Thanks for all of your advice. I really appreciate it. I'm going to contact the specialist i've been seeing in NYC, who prescribed me the meds and who has been dealing with POTS patients for a while, so maybe that will help. Thank you again!

Hillary

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Hi Hilary,

I can't remember whether I welcomed you, so here is my welcome! I'm glad you found us!

I haven't been able to read everything, but I wanted you to know that I've been having cycles where I losse lots of hair as well, but I couldn't find out why. So, I just cope with it. I did notice that my hair always grows very fast and I always get lots of new hair (you know, new growing I mean).

Corina :lol:

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Hi Hillary,

Welcome. I've been down in the POTS HOLE along with many others, so I haven't been able to welcome newcomers as I would like to. Nice to meet you.

I've been losing quite a bit of hair lately too. I have thick hair so it doesn't show yet, but it's a pain to wash my hair because there's so much hair coming out that gets all around my fingers.

However, I am pretty sure my is due to three weeks of not eating due to GI issues! I lost 12 lbs really fast and had little nutrition. Now that I'm eating a little, I'm hoping that the hair loss slows down. We'll see.

~Roselover

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Welcome to DINET. Just wanted to offer a "me too" on the hair loss. I go through bouts of this on and off. Right now I am losing some but not as much as I have in my worst times.

I take a spoonful of cod liver oil and feel that my hair loss seems to be minimal when I do this. I don't know if it's just coincidence or if the omega-3s do something for hair retention.

Amy

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I have experienced bouts of hair loss like you describe since my early 20s. I know how distressing it is. I don't know if it is related to POTS--but it certainly seems unlikely. I do have Hashimoto's, but the bouts of hair loss never occured during the time I was low in thyroid.

My hair is a bit thinner than it was when I was a teenager, but I am nowhere near balding.

Katherine

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Hi. I typically go through my "shedding" cycle this time of year, where gobs of my hair fall out and clog up the drain in my shower. I'm lucky to have thick hair. Talk to your doctor if it concerns you. As several people have mentioned, there are medical illnesses and medicines which can cause excessive hair loss. One that comes to mind is thyroid dysfunction. I hope you get answers soon.

Melly

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Hi,

I have also had fairly extreme hair loss. I have hyperadrenergic POTS and I wonder if it has to do with the fact that everything is in "hyper mode".

Anyway, after you have the doctor check for the obvious causes, if it turns up nothing, you may want to try adding a biotin supplement (my doctor recommended it). It is over the counter, and there is also a supplement called "NU-Hair" that has a lot of biotin, along with other stuff.

My hair loss is improving and I'm not sure if it is the biotin, or just time itself that is helping. Nu-hair was effective in helping my friend with cancer, too.

Hang in,

Diana

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Hi sorry to hear about your hair loss. Mine fell out in droves and handfuls last year after re starting my blood thinners. Then again just last week. It fell out alittle more than normal after my bout of POTS symptoms that landed me in the Hospital earlier this summer but it was not as bad. One Doc said everyone loses hair, the next showed a little more concern after I showed him a bag full at his office. So if they aren't takeing you seriously collect a sample after your next shower or brushing. :D Then the pharmacist and internal medicine docs attributed it to stress, side affects of the blood thinners, lack of circulation to scalp during episodes of low BP, and PMS. It did stop after a couple of months. I ended up cutting my hair that was mid back length to my shoulders and that helped.

So stay calm and relax. I cried on my mom's shoulder this past week about it (literally) and I am 32. The loss of hair to us girls is drastic and scarey and you are alowed to be upset.

Keep your chin up!

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