Please, please share what's working for you

Discussion in 'Success Stories' started by vbauch, Mar 22, 2010.

  1. vbauch

    vbauch New Member

    I am new to this site, and to this problem of hair loss. I've been researching and reading, trying to find doctors and solve my situation for about 6 months and this site has been a mainstay.

    On the one hand, it's incredibly comforting to know there are lots of us out there and I'm not alone. On the other, I'll be honest, I have often found myself getting incredibly upset while on this site, because doing so is immersing me further into a world that frankly scares the hell out of me and there seem to be a lot of stories about the specifics of each person's individual problem, yet not as much about that individual's treatment and whether it's working or not.

    What I find, and I'm sure I'm not the only one, most useful is hearing about what's working for people, what doctors they've had success with (and which ones they'd never recommend), and how they are managing to "keep their chin up" as my mother would say. I realize this is a very individual problem. On the other hand, it's only by talking and sharing our trials, tribulations, successes and experiences that we'll gain a critical mass of knowledge that will begin to help us all sort through this.

    I know, of course, the tendency is to post and become immersed in something when it's a problem and that many of the folks who have found successful treatment are out living their lives and not posting on the Net. However, it would be great to get the full story (or as far as it is for you), given how unknown this problem is in the medical community and how obvious it is that there is a big gap in understanding, studies, and research out there.
  2. Kippy

    Kippy New Member

    Hi

    Hi! I added you to my friends list. I am more than happy to share some advice with you both on treatments and success.
  3. vbauch

    vbauch New Member

    What is working (cross my fingers) for me

    I realized that I needed to reply to my own thread about sharing treatment stories.

    I have found treatment, though it is too early to tell whether it's working for sure. Three months ago, I went to see Dr. Geoffrey Redmond in NYC. I went to SO many doctors, and I live in San Francisco, not the middle of nowhere. And in the end, I realized I knew more than they did, until I got to Dr. Redmond. He diagnosed me with androgenetic alopecia, which I already knew, and put me on Yasmin, 200mg Spiro, and 2.5mg Finasteride. I don't love taking these, though the side effects have subsided for the most part. However, I have had PCOS for 15 years now, and was pretty convinced that if my hair continued to thin at the rate it had been for the previous year, there would not be much left soon.

    Background: My thinning started a few years ago, after switching from Alesse (which I took for 7 years) to Seasonique. Of course, no one told me, and I had NO idea, that these pills were the worst options one could pick for PCOS. I didn't realize my hair was thinning for a couple of years since I had really thick hair. Though, looking back I can now see it was and that my comments about it getting "lighter" and "wavier" really meant "thinner." Then, a couple of months after I noticed my hair seemed to "have spaces between the strands", it started shedding like crazy.

    Anyway, after just a couple of months on the trio of meds, my hair seems to have stopped falling out. I hesitate to even say this aloud, or type it so as not to jinx things, but I think sharing stories is important and let's hope the Hair Gods give me good karma for trying to help others. It's way too early to proclaim victory, but at least it's not landing in my hands in the shower each day... In terms of regrowth, I was told that I wouldn't know about that for about 9 months or so, so I need to wait until the end of summer to know if that'll happen.

    In terms of ongoing treatment with Dr. Redmond. He does followup appts via phone after a couple of months and I think another 6 after that, since it's all test based anyway and I'm the best person to say whether it's getting better or worse anyway. So, he doesn't leave you hanging after one appt, which is comforting to me.

    I'll keep posting about my success/lack thereof and would love to encourage others to do the same. Good luck ladies.
  4. Dharma2

    Dharma2 Member

    Hi V,
    Thanks for sharing your story and the information about your treatments. You may have read some of my post but if not I'll provide a summary. I started thinning a couple of years ago, it may have been before that but like you I had lots of hair so really didn't notice until it got bad. I also have quite long, dark hair and very fair skin so my scalp is pretty hard to hide. I use topnik and that helps. I am almost 42 so for me it is possibly perimenopause related, hormonal for sure. I started treatment with 200/mg spiro and then later added yasmin, also I wash the DHT off daily with Nizoral 2% shampoo. The Nizoral 2% is key for me. If I don't use it daily I notice within 48 hours my hair is shedding more. Anyway that combo was working for a few months until I stopped for (4 days) to have a withdrawal bleed (cycle) and my shed increased tenfold about 10 days later. I had a prescription of Diane 35 just in case and I immediately started using it. I'm only into my 4th month on Diane 35 continuously, Spiro, & Nizoral 2% but the shedding is much better and my hair texture has improved too. For the 1st couple of months I thought I had a cure but lately I have been noticing my sheds go up and down (nothing like before but enough). It just seems like the testosterone (DHT) is not suppressed enough. I think what I eat & drink impacts my treatment too. If I drink coffee my hair seems to shed more. If I eat sugar or drink alcohol same thing happens.
    I am a pretty healthy lady for 42. I don't have any other health issues except this nasty AGA. Oh yes and I was diagnosed with AGA by a derm in Edmonton, Alberta. I have read Dr. Redmond's book and it was very helpful. I see he added finasteride to your treatment plan, did he explain why or how long you would be taking that? I'm now wondering if I had of added that to my treatment I could have avoided taking Diane 35. It's a high estrogen BCP and at my age I know I can't stay on it for long so I am trying to find out what my options are. Maybe I could go back to the yasmin with the finasteride if it can be taken long term. I hope you are on the right track with your treatment. It sounds promising.
    I keep posting about my ups and downs because I hope it helps others. These posts have really been informative I just wish more ladies would share their treatment experiences so that maybe one day we can find a lasting solution. I know lots of people have had to have success but then forgot about the site. It's so comforting when someone returns and tells their story. It's a tough journey though and I understand not everyone is comfortable sharing even unanimously. Again thanks for sharing your treatment plan I really appreciate it, especially since it is coming directly from the best doctor for this issue. :>
  5. vbauch

    vbauch New Member

    Finasteride

    I have to admit, of all the three, this one concerns me the most. They simply don't test Finasteride/Propecia in women, though Dr. Redmond assures me it's not dangerous, just untested. Which, to me means they don't KNOW it's not dangerous, they just don't know it is. The warnings on the bottle say it shouldn't be taken by women, but that's because like the spiro, you can not become pregnant on it. In fact, pregnant women can't even touch the pills. He even assured me that were I to want to have a child, I could stop just a couple of months before. Frankly, I'm not sure that feel right to me and that compounded the stress of my taking that first pill. But I did and now we'll see.

    As far as long term safety, I don't know that. I tried to look into it, but didn't find much. Men have been taking it for quite some time, but again not us gals. And the one study I did come across was for post-menopausal women who had hair loss due to loss of estrogen. They concluded it didn't work. But Dr. Redmond says he's had success on it. I was at my wits' end, having seen all these useless doctors, and so I decided I needed to trust someone. And I took the meds.

    He is expensive-- about $750. But my insurance covered half of that. And given all the money, and time, and anxiety, I wasted with other docs, it was totally worth it to see him. I do feel that at least someone is on the case who knows more than I do.

    I know at least one other woman who also takes finasteride, and it seems to work for her in combo with sprio and rogaine.

    I'd be happy to answer any other questions I can. And will post updates as time progresses.
  6. Dharma2

    Dharma2 Member

    Thanks V for the quick reply. I was doing a bit of research on finasteride when I got your message. Here's a link that you might find promising. http://news.bbc.co.uk/2/hi/health/4824348.stm. I'm grateful for your willingness to post updates. I will am interested because I know I have to come off of Diane 35 eventually. My doctor said I am ok for about two years but then she'd like to have me on a lower dose of estrogen. The results for this study done in the UK in 2006 were excellent. The majority of the women on BCP and 2.5mg of finasteride notice less shedding and many notice regrowth, now that's what we really want. I laughed at the analogy of the "Christmas tree" balding pattern. That's exactly what mine looks like (not that I find that funny). I'll keep researching this drug and let you know what I find.
    As far as dangerous to women, or men for that matter, the only information I found was what you mentioned about pregnancy and men sometimes have sexual dysfunction. I would think that the same dangerous for men would exist for women. I will ask my doctor as well the next time I'm there she is young and seems to be fairly well educated on hair loss. She told me she was trying to treat her husband for it and that she ended up educating herself as a result. She may have something to share. :>
  7. Kippy

    Kippy New Member

    Hi,

    At first I was shy to post something so personal on the boards but now I've changed my mind and think it's necessary. I really appreciated the success stories or even any stories people shared so that I knew I wasn't alone. But anyway here is my story...

    I started shedding like crazy in July. By August I realize it wasn't normal and I needed to go see a doctor. Based on the Internet, Dr. Redmond was the best doctor to see, so that is who I chose. He told me I had androgenetic alopecia and put me on medication for it.

    I went through the whole thing with trying to figure out how to keep my chin up and all and it was hard. I found out I had this condition the same day I moved into college, so it was a lot at once! There were times I'd be sitting in class and have to hold back tears. I had break downs on a daily basis and it was awful. One day I fainted at the doctor's office from thinking about my hair. However, I all of a sudden lucked out and became very busy--I was on a tight schedule. I was either studying, at the gym, horseback riding, or out with friends. I soon realized this really helped me keep my mind off it so I intentionally tried to minimize my time of just sitting around doing nothing because that's when the breakdowns would start. This helped a lot and I'd suggest you try it. Let yourself cry but then keep as active as possible.

    Eventually I also told some of my closest friends about my problem and it really helped that they were so supportive.

    9 months later and I now have baby hairs starting to grow in!!! In case you want to know my medicines (as they are working out) here they are:

    200 mg spiro
    Kariva (originally I was on yasmin but it made me sick)
    vitamin D, and vitamin B-6

    In addition, I see Dr. Orentreich. She is a top dermatologist in NYC and she gives me scalp injections every 3 months. This doesn't help solve the problem, but it is a good quick fix to make your hair stay in your head. Dr. Redmond said that while it won't do any harm, he also doesn't think it works, but it's been working for me so I'd recommend that as well.
  8. stit60

    stit60 New Member

    The 3 P's

    Hi. I'm relatively new to this forum but NOT new to hairloss or other forums! A man at another forum once said, the 3 P's are very important in treating hairloss: Photos, Patience and Persistance. He's right. Many people give up too quickly, expecting results in a few weeks or panic when their hair begins to shed after starting a treatment. The hair runs through 90 day cycles. That's 3 months! Also, increased shedding is common and actually a good sign when you start treatment. It means your body is getting rid of the unhealthy, thinner hairs so that the thicker ones can come in! Still though, all those hairs on the bathroom floor, in your car, in your kitchen, on your sweater are devastating. I KNOW!
    I started losing my hair in my 20's due to AGA and have fought the battle off and on since then. I've tried everything from plain Rogaine to rogaine w/ retinA, hair vitamins, saw palmetto, birthcontrol pills, spironolactone, wigs, extensions, weaves, and even that icky Ron Popiel instant spray-in hair! Sheesh! In 2004, I started a product called Xandrox from Dr. Lee and grew back a nice head of hair. Then, while on maintenance using it once a day, I started to lose it again. My hair started feeling course, dry and brittle too. Rather than continue using it, I quit because I thought it was no longer working. BIG MISTAKE. I lost ALL the regrown hair and now have to start all over again! Back in January, I reordered the Xandrox and started on it 2 X's/day. Throughout February and half of this month (march), I endured The Big Shed. March 3rd, I switched to a new Rx lotion I ordered from Dr. Klein in NYC. I have to use it 4 X's a day and it's hard to remember but I do it. It's called Promox. I think the minoxidil shed is just about over and I am seeing fewer hairs on my brush and on my clothes. However, the shed plus my AGA plus menopause/aging has left me pretty dog-gone thin-haired. My pony tail is almost the diameter of a pencil and when I part my hair different directions, the parts reveal alot of sparse open scalp. Pathetic. I should be really upset but I'm not. At my age (almost 50), I have started to worry about bigger issues like heart attacks and retirement. My thin hair makes me look older than ever, especially next to my boyfriend who is 4 years older than me and has a FULL head of dark brown, curly, LUSCIOUS hair! Still, he says I am beautiful and doesn't care that I am thin haired. He loves me as I am and that is a good feeling. Yesterday, I spotted some baby hairs growing at my hair line but they are not the color I want. They are GRAY. I guess gray is better than nothing. I really should cut my hair shorter. The ends of my hair are all thinner than the top. Yuk. I call it, "the AGA mullet!" LOL. Yes! I laugh at myself! What else can I do except hope and pray that 3 months from now I will be singing hallelujah.:confused:
  9. JMB

    JMB New Member

    Laser Hair Therapy

    Hi All,
    I am new to this forum. Does anyone know of a doctor in the Indianapolis area specializing in hair loss? It seems like the only places around here specializing in hair loss are the hair restoration clinics. Also, has anyone tried laser hair therapy? I was thinking about it but the cost is anywhere from $3,000-5,000 and, before I make that investment, I want to make sure it works.
    Thank you
  10. A J P

    A J P New Member

    Hi, vbaush. I will tell you what is working for me. Im 52 so I had to go off bc. In 1 1/2 I lost 3/4 of my hair. I went to Dr. Edmond Griffin In Atlanta, Ga. He put me on 100 mgs. of spiro, 5000 mcgs of biotin, 800 mcgs of folic acid and omega 3 and flax seed oil. I also eat 6 small meals a day and have 2 52 gms protein shakes a day. My hair stopped a falling out almost immediately and is growing like a weed! I don't have side effects at 100 mcgs either. Hope this Helps!
  11. A J P

    A J P New Member

    Dr. Edmond Griffin

    Dr. Griffin is not nearly as expensive as Dr. Redmond. Here is his site.
    www.dermatlanta.com
  12. A J P

    A J P New Member

    I have since lowered my dose of spiro to 25.mgs a day. Really helps with the dehidration. I drink lots of water and watch my potassium levels. Hair loss next to
    nothing. Hope this helps!
  13. oneofme

    oneofme New Member

    Nizoral shampoo and Triconium spray

    I'm just starting w this hair loss treatment thing, but the Nizoral shampoo really helps w the itchy, burning scalp I developed recently..... had to order through Amazon, out in the drug stores.

    The Triconium spray through Amazon helps w the itching and makes my hair a lot fuller; is supposed to cut the male hormone thing and help w hair loss and growth. I like both.

    Don't want to start the Rogaine I bought bc of the side effects..... and having to continue it forever; also, have some new peach fuzz and don't want a new massive shed. Only thing my derm. suggested.... she is more into skin.....
  14. Chele

    Chele New Member

    I can share a kind of positive experience. I have an extremely stressful work. Because of that I sometimes experience problems either with skin, or with hair. This summer the hair loss has become frightening. Previously it used to happen seasonally, but this year it was more than ever. I’ve started to take a dietary supplement Hair Gain Formula. It was developed for military people, and now it is also being sold to others. (I was just curious, do the soldiers really suffer from hair loss? :) Anyway, I am taking it for 2 months, and yesterday I first detected a lot of short hair on my head. Probably, my case was not too hard, but this supplement seemed to help.
  15. oneofme

    oneofme New Member

    Where to get Hair Gain Formula

    Chele, where do you get the Hair Gain formula? Anyone can answer....it sounds like a good supplement!
  16. Chele

    Chele New Member

  17. socalrunner

    socalrunner New Member

    I've stopped the shedding, but it's very recent

    Just in the past week I've got the shed under what looks like total control. I mean after a shower maybe four or five hairs in the catch. Brushing after the same--only a few hairs in my brush.

    My hair loss is a combo of things:
    Topamax for epilepsy and migraines
    Low hormones (late perimenopause)
    Scalp psoriasis

    Treatment
    Scalp:
    Clobetasol shampoo (as needed now about every 10 days)
    Calcipotriene scalp solution (as needed now about every 10 days)
    Abba Gentle sulfate free shampoo and conditioner
    T-Gel shampoo (maybe once or twice a week as needed)

    Supplements:
    Biotin 10 mg/day
    Omega 3 fish oil 1000 mg (2 cap a day 2000 mg)
    Folic acid 800 mcg/ day
    B12 3000 mcg/day
    Multi Vitamin
    Iron Hema-plex 85 mg/day

    Hormones:
    Progesterone 100 mg/ day
    Menostar estrogen patch 0.014 mg
    Vivelle dot estrogen patch 0.1 mg
    (I use two estrogen patches as they are very low dose and I recently underwent surgery for removal of one ovary. After my oophorectomy, the drop in estrogen caused major hair loss among other symptoms.)

    Diet:
    Egg white omelette with spinach

    When I switched from general omega supplement to the Omega 3 1000 mg (Country Life brand) and added the egg white omelette, the shedding just stopped--and I mean stopped almost overnight.

    It's only been a week so I don't know if its long term or if my hair will grow back. I just know my shed is like it was when I was in my twenty's
  18. missy6

    missy6 New Member

    iv just joined here so i hope im not doing this rudely but what is spiro? im also doing large doses of biotin but its not helping- also doing lots of protein! thanx
  19. socalrunner

    socalrunner New Member

    Not rude at all...

    Spiro is short for spironolactone. its a prescription drug. It inhibits dihydrotestosterone (DHT). I've used it in the past, but didn't see any results.

    I've finally stopped all shedding and I'm growing hair!

    I'm doing every thing I listed in my post, but saw a dietitian who calculated my nutritional needs based on my high activity level and found my protein intake was only 24% of where I should be. So she created a meal plan for me. I'm growing hair! I think the keys for me were:
    Getting scalp healthy
    Getting hormones balanced
    Getting a very balanced diet including iron & protein increased to the right levels
  20. missy6

    missy6 New Member

    thanx! i wont try that then! my hair has fallen for 14yrs in the past and my n/path got it to stop for 2 yrs giving me doses of vitamins and minerals and 3 eggs a day! now its started again! i dont know why, maybe the shock of having a molar pregnancy last yr! or that i was having raw eggs every day in a protein shake, now looking at the raw eggs they actually grip to biotin and can make u biotin deficient which can make ur hair fall out.so i hav 3 cooked eggs a day and large doses of biotin and inositol, inositol is helping my anxiety a lot, also inositol deficiency can giv u hair loss! its such a puzzle that i hate! if only we knew what was making it fall out! im also on femme premensral 2 a day to balance hormones which isnt stopping the hairloss but giving me a much nicer tummy, instead of that huge period tummy for 2 wks! i just want it to stop its so debhilatating!