jem15

First, Issie, sorry you had to experience that. It's gonna hurt and stink, but like the others said, no one really wants friends like that anyway, and her behavior is reflective of her flaws, not yours. Of course it hurts when we think people are good friends, and then true colors show, but unfortunately there's nothing we can do about it. We are what we are whether people want to accept it or deal with it. I see how being ill for so long wears on people around me and it's hard, but I'm starting to learn who can handle hearing about it, who cant, who I can depend on more, etc.. and hopefully all of us can at least hang onto or find some "good ones" and find comfort in that. Lieze- "One of the other members posted she hates positive people and positive people can just stick it.".. I just wanted to comment on that. It's funny, that's a big subject amongst the young adult cancer community too, as I'd imagine it is with other health issues as well. I'm sorry that member made you feel bad and wasnt so eloquent or respectful in how she phrased her comment. But, I just wanted to say I can understand the other side and see where she's coming from, though ha, i wouldnt have phrased it in a hurtful way. When I was diagnosed with cancer and going thru treatment, all people had to say was "Be positive" and it used to drive me crazy! And it wasnt that I wanted to be negative or even pessimistic. In fact I was quite hopeful, and persevered, and wanted to believe things would work out. But sometimes the way it's said to people that are sick, no matter what the illness, it implies you can just think yourself well, if you just click your ruby red heels , all would be better. It sometimes, though not always intended to, implies if the person was just "positive" all would be better, and it's their fault they're sick. Or at least sometimes that's how people interpret it. Often others just dont know what to say and offer that up to console someone, but sometimes people get pushy with it, and really try to act like that's all it takes. Also, if someone needs/wants to vent about what they're going thru, and someone tries to suggest positive stuff, it can be invalidating to that person's experience, and cause the person to feel bad. Now, not saying that is what you were doing or trying to do at all. You were trying to encourage hopefulness and help people find a way to deal with what they're going thru. But since we dont know what others have experienced, maybe that person has heard and keeps hearing "just be positive" , and so the next person that says anything remotely like that, gets told off. You don't know, or ha, that person can just be a not so nice person. Anyway, my point is, try not to take it too personally, there could be alot of other issues surrounding that statement and where that person is in dealing with her illness. And I know for me, eventhough overall I try to be hopeful and cope well, and not give up, etc... if I'm having a bad day and someone is like, oh just look on the bright side, or do this, etc.. i might not want to hear it at that time. Again, not that you were saying those things, but it could've been what the other person heard. And not to justify how she said things, she didnt have to be rude even if those were her feelings.. but I just wanted to give you another perspective on it, in case that helps you feel better bout the situation.

Thanks everyone for the info!

I know, this is what I'm wondering lately too.. If there's either another underlying cause for the POTS, like a mito disease or whatever... or just another separate condition that's aggravating it... who knows... I was diagnosed w/ Hodgkin's disease in year 13, but they say that's unrelated to any of my symptoms. Though my "POTS symptoms" worsened the year before I was diagnosed, and chemo really made everything really bad. Eventhough I've been done with treatment for over a year, I'm still not functional, and I blame it on the chemo aggravating the POTS and whatever else is going on. Ha, so frustrating to have these mysterious conditions... I just wish doctors tried more, ha, at least as hard as we do to figure out whats wrong/how to fix it;-)

I know how you feel. Frustrated with Western Medicine, I looked to "alternative" or "complementary" forms of medicine. Everything from naturopaths who had me take different herbs,supplements, and homeopathic remedies, to MDs specializing in nutrition/holistic medicine, to energy therapists who did things like acupressure, Reike, etc.. to internists who did "integrative medicine" .. all kinds of elimination diets, no processed foods, no gluten, dairy, sugar, wheat, etc.... you get the idea;-) Anyway, I really thought it'd be my answer, some of it made sense to me. And I saw some who were more "quacky" than others. Over the years, I've tried to only go with more "reputable" ones.. and really search for more "legitimate" practioners but it's hard. Some I feel are legit, but still have never been able to help me. Unfortunately, it's just been a lot of money and no difference, or sometimes I've even felt worse. Ha, so I'm about equally frustrated with both Western and Eastern medicine at this point, but I don't necessarily think it means to stop trying. I'm pushing more with Western stuff now in light of the recent POTS diagnosis and visual vestibular dysfunction. But I still have some alternative stuff to try too, and actually today was just given the name of some local yogi type guy that does acupressure and various healing type stuff, from some social worker at a hospital. She swares by him and said her patients have found relief too. I'm so distrusting and skeptical at this point, but I guess that's the same for "regular doctors" too. Ha, anyway, I've known some people to really do well with non-traditional medicine, I think it just depends on the person and the practioner. If it's working for you, then go for it. But if you feel something is not right in your gut, trust it. I do like that he said he cant cure you right off the bat. Ha, not that I dont want him to cure you, but my experience is when I go to these people and they insist from day #1 that they know what to do, and i will be cured, I NEVER am. So over the years, I kind of sense those people to be more of a scam. It's hard to know who to trust, but now I learned enough to go with my instinct. Especially when they do stuff that hurts or feels harmful. They'll make up excuses for it, and I can tell now it's just shady. But when you're young and so desperate to feel better, you want to believe them. Ha, now I'm a little older and more bitter;-) so a little smarter;-) Did you ever see Man in the Moon with Jim Carrey? When he goes to some place for this wierd cure of cancer I think it is, and he really believes it, until he sees the guy do something fake and he's kinda devastated but then he just starts laughing at himself, that he got so desperate to believe it. Ha, I feel like that when i try some of this stuff. Anyway, good luck with it. I hope it brings you some relief. And if I ever try out that new local guy and find anything he's dong helpful, i'll let you know.

I wonder myself if heart rate always has to be correlated with severity of symptoms... I've been sick for 15yrs and my symptoms get worse each year. Right now they are the worst where I'm unable to function or drive. However, my heart rate hasn't been that high. Even in the past, it'd be a bit higher than normal, but nothing crazy, usually under 120, maybe a little over when standing. But now, it's been the lowest it's ever been, maybe because I've forced exercise over the past year, and even though I dont feel any better from it, maybe on some level, it's working to overall lower my HR. Also, my recent tilt just came up with a 29beat HR increase, instead of 30+, so more borderline. I've heard you might not always "catch" the HR increase, but either way, my symptoms are the worst they've ever been, and my resting/standing heart rates are much lower than they've been, and really fairly normal. So I don't know what that means.... my symptoms are still very "POTSY", and the drs still seem to think POTS is the cause, even with the borderline HR increase, so I don't know if the HR dysfunction is just one sign of autonomic dysfunction, and that even if the HR isnt high, that doesnt necessarily mean the rest of your body isnt still out of whack.. ha, if that makes any sense?

thanks for the helpful info. Wow, a lot to consider with this mito stuff. ha, of course everything has to be so complex, i never anything easy to test for;-) I'm hoping if I bring some of this info to drs, they might know what to do with it, or where to start. ha, though i won't hold my breath, so far, it seems I just have to be my own doctor. They never know or look into anything. I'm wondering though, when the info mentioned some drs just treating the condition, even w/o testing confirming it, what that involves, and if there's any site that elaborates on that. I feel like every other treatment I've tried has just been guessing, so if the mito treatment is not harmful, why not try it too? I'm guessing maybe it might not be that easy, or maybe the treatment differs based on the type you have? Anyone find further info on that?

I've heard people mention mitochondrial disease as a possible cause of POTS and I was wondering what tests are done in order to figure out if you have a form of mito. or not? Anything I can ask my dr. to screen for? In the past, before I knew about the POTS, someone else mentioned mito. diseases to me, and even though alot of times they are severe, and you'd know if you have it, supposedly more mild forms present kind of like a chronic fatigue/pots type syndrome. I have had bloodwork for some sort of mitochondrial antibody in the past, but it only was one type, so I don't know if there's more or that's it. I'm just curious cause my symptoms only seem to get worse from year to year and I haven't responded to exercise or any other treatments yet. Don't know if that's just typical for POTS or if there's another condition thrown in there.

Ha, liked the "potshole" reference. That's a good one, I'll have to use that:-) As for the "remissions" I've never seemed to have that, I'm always symptomatic, and things have just gotten progressively worse for 15yrs, but I went from being able to have a half normal life and "push thru " and manage things while just feeling awful the whole time, to now being unable to push and out of work /unable to drive. I just go from times where I'm at my "normal baseline" for that year and then times when it's even worse. I'm still wondering if a spontaneous remission of sorts is possible cause I only recently got diagnosed, and wonder if it's possible to hit on the right treatment, though I havent found anything to work thus far, i'm still trying to stay hopeful. I can understand how frustrating and scary it must be to get a glimpse of "healthy life" and then have it taken away again. Sometimes I find the worst part about this is all the unknown and that you just never know what your body will/wont be able to take. It not only emotionally messes with you but I'd think financial/security wise too, like w/me, if i suddenly felt better to work for a few months and then think i can hold down a job, only for that to leave once you get started, that'd have serious implications... anyway, hang in there, though I dont have the remissions, i have days where things are just dreadful for no good reason, and that's always frustrating to cope with. I find my hope lessens on those days, but in general how I cope is I give myself some time to be angry, sad, etc about it..I just try not to get stuck there for long. then I just give myself a break and realize when I get that bad, I have to just do nothing and let my body rest, otherwise, for me it seems I cant get out of the "potshole". I'll just stay worse. It is tricky to know when to push, when to just rest. Ideally I try for a balance of both, and try to push, but not to the point where it knocks me out for days or week after, that's usually too much. If i push and can return to my baseline by the next day, then that's an ok push level for me. And my "push/rest" guidelines have changed from year to year. The same strategies that used to work, don't anymore. So for me it's been constantly learning and accepting that I have to adjust/adapt to the "new level of sickness" and trial/error for figuring out strategies.

Wow, that's great you found them cheaper. I looked around, but couldnt find much, ah well. Maybe cause it was for the actual vest and stuff, not just the packs? And yea, I was thinking of carrying a little lunch cooler to keep spare packs, didnt know if it'd work, worth a try though!

Thanks, good to know it seems like it's just another POTSY type symptom. Ha, well not good, but you know what I mean.

Typically I have a huge heat intolerance which worsens all of my usual symptoms (dizziness, faintness, nausea, fatigue etc). But sometimes, more recently I've been getting overall muscle weakness throughout my body too. Where I feel weaker than usual and my arms/legs feel heavy to lift and I feel the "burning" /tiring feeling, as if I'd be working out, but haven't, and it's just from like raising my arms, or lifting my leg to get up or something. Basically with the heat round 100 yesterday, even though i was indoors w/AC (just doesnt work that good), I felt so weak and floppy, and like i had all these weights on me anytime i had to move a muscle. I've had chest heaviness/pressure that's been worse too. Just wondering if it's part of the whole heat aggravating things.. even if I usually dont experience the muscle weakness to that level typically.

I know doctors stink a lot of the time and can cause more stress, ha, believe me I deal with it on a constant basis, as I'm sure many others do on this site... but, with this symptom, if it was me, I would push your doctor(s) to listen to this complaint. From what I've heard in regards to those weird olfactory sensations or "hallucinations"-though youre not hallucinating;-) it's just to mean the smell really isnt there... anyway, there can be a variety of causes, some more minor, like sinus infection or migraine, or sometimes something you'd want to have addressed. And I don't want this to scare you at all cause it really can be nothing much at all, but I think it's something worth investigating at least. Your signature lists different cranial/brain things going on.. so it's possible it could just be related to that, sometimes it's neurologically based. Phantosmia is the term given to olfactory hallucinations, if that's even what you're having, it may not even be. But here's a link to a brief article on it from Mayo Clinic http://www.mayoclinic.com/health/phantosmia/AN01684

I didn't want to spend the $180($160+shipping) for the Cool Sport phase change vest right away, so I first just bought their neckerchief thing for about $32($20+shipping) and it wasn't as cool as I thought it'd be. I guess it's better than nothing, just to have a little spot of cool on you, but it warms up quickly, and since it's not ice, doesnt get that cold. I dont know, maybe I'd need to wrap another round my waist or something to notice more of a difference. Then I found this link http://www.activemsers.org/tipstricks/choo...oolingvest.html and it compares the different types of cooling vest options out there. After reading that, and comparing more prices.. I decided to try out the ice vests instead of the phase change, in hopes it would be cooler. I did hear they can get wet as the ice packs melt, and take a longer time to freeze, but since I wasn't loving the phase change neck thing, I decided to give the KoolMax "ice vest" a try cause it was $110($110+shipping)from MSsolutions, so a little cheaper. I also figured I could try putting the ice packs in ziploc baggies and even line it w/ a papertowel if needed, inside the vest pockets, and see if that helps the wetness. I only tried the vest once, without any baggies/towels, and some wetness occured, but not too much, but the pockets were lined on one side to absorb some of it, and I mightve only had it on for an hour. I had to take off the vest cause one of the ice packs was leaking, had a rip in it. They sent replacements which I just got, so I'm gonna try the vest again soon. I'll see how it goes and if my "baggie theory" helps at all. It seems that the ice vests are supposedl to have the greatest cooling capacity, but the phase change is better if youre skin gets sensitive from the cold and want to maintain a consistent temp., or if you want to recharge quicker in ice water, or not worry about any wetting through. Other evaporative vests work by putting them in water , but those supposedly are the least cooling, and kinda annoying to do. But I guess it depends on what your preferences/priorities are, what youre looking to get out of it. We'll see if I wind up liking the Koolmax vest...

I tried it once, but right away felt really sick on it, so my doctor stopped it. That was years ago, I haven't tried it again though, who knows if I'd have a different reaction now.

Heat makes things 10x worse for me always. Ha, and I'm from your area too, so yeah, not loving the weather! I get much more faint, weak, dizzy, nauseous, fatigued, etc.. even indoors, my AC isnt the greatest and I just cant do much at all. I did just recently buy a cooling vest, so hoping maybe that'll help. I haven't found anything to work for it, except ha, not being in the heat. I need cold AC otherwise I'm a mess.

Though I"m not sure why it's happening, I know some people's POTS symptoms get worse after eating, especially bigger meals. I want to say it has something with the blood flow going to the abdomen to aid with digestion, but don't quote me on that. Anyway I've been hypoglycemic for years, and every once in a while it'll randomly get worse for some reason, and even if I ate something seemingly appropriate, sometimes my blood sugar drops quickly and need to eat something else. Sometimes, if youre waking up in the morning with already low blood sugar or on the way down, depending on what you eat in the morning, it might not be enough or might aggravate things. Sometimes it's lowered from the night before , and sometimes can get "nocturnal hypoglycemia" which happens overnight. Usually they'll say to eat a small snack, with protein and complex carbohydrates at night.. like maybe a whole grain slice of bread w/ peanut butter or something.... that may help you last through the night and keep your level more stable in the morning. Depending on my reflux issues, sometimes I do that at night, but sometimes dont have to. If it seems to not be going away, I'd maybe get a blood sugar monitor so you know its that for sure. I eventually did and it's helpful sometimes when I cant tell if it's hypoglycemic faint or POTS faint, though usually I can. You can get the monitors sent to you for free from some companies and they usually include sample needles and test strips. Also check with your insurance about which brands have the cheapest test strips/needles. Some are cheaper, some are more expensive, some I think you can get OTC,but I've gotten some thru Rx to from my doctor since it's cheaper. I got a free Contour monitor, but the strips were too expensive. So I switched to FreeStyle lite cause it was cheaper.... They sent a free monitor/kit... as does One Touch I believe... I'm sure you could google it. If indeed your sugar is low or borderline, maybe due the hypoglycemic diet thing(smaller meals/snacks in between), or at least try it in the morning.. try eating every 3 hours or so and adjust it as needed...One nutritionist said to do about 30g carbohydrates for breakfast or meals, but not too much higher than that, and 20g for snacks. You always want high protein with it. And you want to go for complex carbs instead of just regular that more quickly converts to sugar. I'd stay away from all sugar, syrups ,etc in the morning, even if it's only "a little".. and even if it's combined with protein. With me, I cant have a sweetened yogurt in the morning, evethough there's protein and even if i add more protein to it... my blood sugar drops quickly after. Bagels are generally high in simple carbs and could be too much for you in the morning. If you still want to try it, maybe only do half, or a quarter of the bagel. Peanut butter is good depending on the kind, it might have too much sugar for you if you're not doing the natural, just peanuts/salt kind, it might help to switch. protein bars sometime have too much sugar too, so that might not be the best option depending on the bar. Oatmeal has some protein, but I know for me, I cant just have oatmeal, or my blood sugar drops too quickly.. 4g or so isnt enough for me, so I have to add egg whites or something else with it. Eggs/bacon should be fine, I'd just add a slice 100%whole wheat/ whole grain bread.. you need a "good carb" in there, just not regular. Fruit may or may not be ok for you.. If I do a small amount of fruit in the morning, I just need to make sure I have enough protein to balance it out, and count the fruit towards my 30g carbs. And then of course, make sure you eat a protein snack/good carb 3hrs or so later. That should help prevent getting hypo.(the protein/good carbs) If you already have low blood sugar, to quickly get it up, that's when you'd have regular sugar, just to get it stabilized, then the right food to maintain it. Ha, you might know/be doing all that already, but figured I'd share my experience in case it helps

firewatcher--- that's good to know about the lightbox. and ha, funny your sleep dr was the one to start noticing things too. sue1234--the previous sleep dr I went to did the sleep study differently, since I told him not only do I not sleep during the studies, but typicallly sleep late anyway. He ordered it so that I could just go to sleep and wake up whenever I want, I think I didnt fall asleep till something crazy like 7am, and maybe slept til 9:00, then tried to fall back asleep again... I think I stopped it round 11:00. But maybe something to ask your doctor about if you or your doctor think it'd make any difference with the results.

I have/had a couple of weird visual things too. The ophthalmologists say my eyes look good, and just chalk up the images to occular migraines, where you get the visual disturbances, but without any headache. Usually if its the occular migraine, it'll go away in about 30min or less. I've had kinds that look like what you drew, the bright images, once it looked like triangles or like looking thru a prism of sorts... that kind went away within 30min, so I was assuming that was an occular migraine. I have floaters so I know what they are, and the images I see are not that. One of the other weird things I've had for years is there 24/7, and its like constant irridescent squiggles/sparks shooting back/forth across my visual field, they move on their own, not with my eye direction. And yea, they're most pronounced against light backgrounds, like the sky or computer.. sometimes if it's a darker background, like a rug, it'll look like somethings moving, like a bug, then I realize it's just my stupid eyes. Doctors have no idea what this is, and just deem it "visual disturbances".. after learning about the POTS/Dysautonomia, it seems that might be an explanation, but I dont know if we'll ever know for sure. Funny though, that you mention about it sometimes looking like the aftereffect on when you look at a light, or camera. sometimes I get that and it goes away, so I think just, the occular migraine. But recently i've noticed a small spot like that and it seems to be lasting days. Depending on the background , it's not always noticeable, but I"m now realizing it's still there and been there for a while.. I've taken to ignoring my other visual stuff, but it's bothersome when a new one pops up. I just had my eyes checked recently though and by different drs, and doubt other doctors will have answers or take it seriously. You're right, they say youre too young or think youre crazy... or what I get more now is doctors believing me, they just dont know and so they just say I'm very atypical and weird, and an enigma, but dont do anything about it. Oh how I wish the medical system was different... a magical world where doctors collaborated, had the time/desire to research if they didn't know answers, and/or at least try to figure out problems that aren't easy.

Yess!!!!! All the time, every morning, since I first experienced symptoms 15yrs ago. It made it incredibly difficult to work, cause it'd take hours before I'd be able to "push thru" better, and now I can't push through it anymore, and it'd be impossible to work. Waking up early is the worst! My symptoms are herendous and I feel after effects all day. It always was if I sleep later and wake up naturally it'd be better, I'd still have my daily symptoms, but it wouldnt be so tortorous. Now though, since I've been really sick, even waking up late, I feel worse. But it's still 10x worse than that, when I wake up early in the morning/before I'm ready to naturally wake up. The nausea, lightheadedness/dizziness, and fatigue are the most awful at that time. I havent' found anything to help it yet. Curious to hear other's suggestions....

Yea, I'm still hoping to find that magical doctor that will actually try hard and fight for me or with me. We'll see.. And funny, when you mentioned AChr, it sounded familiar, a few years ago I was tested when they thought I had myasthenia gravis, but didnt. But yea, so much to try and figure out. I know doctors cant create miracles, but at least give it a good try. And I've tried the whole alternative/integrative route over the years, but never had much luck. I was really hopeful for it, I really believed that would be my answer, but no luck. I dont have Celiac, and did all kinds of elimination diets, gluten , dairy, yeast, processed foods, sugar, etc. and never felt better, and sometimes felt worse. I know initially you can til your body adjusts, but i'd never get better, just continue to worsen, so I stopped with that stuff. I tried naturopaths, energy therapists, tons on herbs /supplements... more recently tried "integrative medicine" docs who are actually "real" internists, but also know about integrative/alternative stuff... still no luck... usually just a lot of wasted money. the one i've seen this year, is kinda out of ideas and she seems very knowledgeable, she's a "real " internist and runs the hospitals integrative med program. Listens, etc.. but havent gotten anywhere with her either. the last thing she was gonna try was the adrenal testing. i have the kit, but am waiting on insurance clarification.. but I wonder sometimes if i'm just wasting more money, since "real" doctors dont consider adrenal fatigue a real conditon anyway... who knows.. ha, "real" doctors have sucked a lot too. i dont know who to believe at this point, but I'll go with whoever honestly puts forth effort and whoever can get me to feel even a little bit better. Hasnt happened yet from anyone, but hoping it will one day. the new vision/vestibular therapy is something new I'm trying, hoping that might help. Dizzysillyak, that's awesome you've had some luck with it though. Whatever works! Glad you found something that makes a difference:-)

Good to know, my symptoms started after a flu-like virus when I was 16, now 31. My symptoms have gotten progressively worse over the years. I'm not sure if that's typical for POTS to have that progression, or as you said, maybe due to the underlying cause, if there is one? Does it list anywhere what possible autoimmune causes it can be? I've been screened for some of the basic ones, lupus, etc... but autoimmune stuff runs in my family, my dad has spondylitis, cousin has Chron's, and I got Hodgkin's lymphoma, which isnt autoimmune, but considered an immune disease... when I got the Hodgkins 13 yrs after initially getting sick, some drs said, maybe you have some rare autoimmune disease that caused this... i always wondered because Hodgkin's is technically considered a rare disorder, and I was sick for so long before getting it, wondering if it's really I just have bad luck;-) or if there's some sort of immune dysfunction going on... ha, will probably never know... doctors have really been so useless, i've seen soooo many, and none of them put forth much effort, and it took 15yrs just to get the POTS diagnosis, and now they just want to sit back and not do much more than have me take Mestinon for treatment, I'm fine with experimenting with that, but there's no other push for things to do/try.. it's always me that has to ask, what about this? what about that? how much salt should i get? is my exercise routine ok? they just have no idea....most of what happens with my care is from my own research. ha, just sick of being my own doctor.

thanks, interesting to know... I guess it just depends more on if you have a doctor who's willing to try different things and put forth some effort. After 15yrs, it was a neurophysiologist who's an "expert" in sleep medicine, that happened to diagnose me. But other than trying Mestinon, doesnt seem to have any other ideas for treatment, and kept saying "go to Mayo".. Not everyone can do that, so it's frustrating. Though after reading some of the responses, I wonder if it would make much of a difference anyway.... argh! why does it have to be so difficult to find a doctor willing to help? I feel like I know more about treatment just from googling, than any of them. Scary...

I keep reading about the importance of knowing your POTS subtype and what's specifically "off" in you, in order to guide treatment better. It seems Mayo or Cleveland Clinic do this, but what if you can't get/afford there? My insurance wouldn't cover it, and I can't image how costly a week of testing at Mayo would be. Ha, is it only rich people that can get help for POTS or are there any other facilities that can do this or tests you can ask your doctors to order? I'm particularly looking for resources in the NY/NJ area. I thought being close to NYC would help and something would have to be there, but so far I havent found anything. I got tilt/autonomic function test at Columbia, but that's all they did. I know Dr. Kauffman is in NY, but he doesnt take insurance, and not sure if he has the specialized testing anyway.

I've been shedding a lot more hair for years now. There are many causes, but still dont officially know mine yet. I'm surprised it's not that noticeable to others yet, considering how much I lose. I did start out with a very thick amount though. It's definitely over the typical 100hairs a day. I first noticed it when I was changing around my birth controls, so I thought it was related to that. And it could be sometimes. But then even after I stopped the birth control for about 6mo, it was still happening, so then it seemed to not make a difference whether I was on/off or what type I was on. I supposedly have PCOS, ha, which sadly makes your hairy, but you can also lose your scalp hair. Ha, it's pretty evil. The dermatologists/gynecologists did blood work, but didnt see any other causes, so they blamed on that and the fact my dad is bald. They said "oh you're probably just balding due to family history/PCOS".. ha, it was so ridiculous how nonchalant they were about it. I tried taking Biotin supplements for a while, but didnt notice much of a difference. Then I got diagnosed w/cancer, and lost most of my hair with chemo. I didnt think it was going to grow back given my previous history, but it did. It's still thinner than it used to be years ago, but people don't find it that noticeable anymore now that it's getting a little longer. When it was real short, you could still kinda see through to the scalp a bit. Now I don't think people can tell, but I still went back to losing a lot of hair like I did before the chemo. So I don't know if that's just what happened to me as I was getting older, it thins, but regenerates a little too? or if it is connected with being sick for so long.. it's been 15 years for me now, since I was 16, and maybe the last 5-6 years I noticed the hair loss getting alot worse. I wonder if POTS in particular can do that, or if it's just being sick with any illness for a period of time can do it? Maybe it's the physical stress on the body? Who knows.. but interesting to know that others have found the same thing.