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Month 8 Alopecia Areata update

Discussion in 'Women's Alopecia Areata' started by AmyCE, Sep 29, 2012.

  1. AmyCE

    AmyCE Established Member

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    I don't let myself check my head too often these days--have found it's mentally healthier if I just don't focus too much attention on it. But after a few months of feeling like I was "in remission," I figured it was worth a look (and really, I was hoping to check in here today and say I was still doing well, since I know not too many folks come back to these boards with good news). Sadly, I have another nickel-sized spot on the back of my head. I count my blessings still that my spots have never grown very large (the biggest, original one was about three inches long) and that they are still underneath the top layer of hair and very easily concealed. But as usual, the panic sets in that it's "just the beginning" so for me, I've chosen to respond medically to make me feel like I'm being proactive about it. I'll be making an appointment with my derm to get injections in the new spot and have started applying the topical steroid that I still have on hand from my last treatment.

    I'm a little disappointed in my reaction to this, immediately getting scared and angry, when I thought I had tackled the emotional side of this a few months ago. I thought I had gotten to the point of reacting to the situation I'm in without freaking out about potential doomsday scenarios in which I'm dealt something much worse than what's actually happening to me (which, admittedly, is a very minor bout of Alopecia Areata). But there I go, crying and panicking again. So I still have some personal growth to work on! I'll continue to keep you posted as I go.
     
  2. Joann

    Joann Moderator

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    Hi Amy,

    I'm sorry to hear about the new spot popping up.:thumbdown2: The topical plus injections should get the regrowth going. Try to keep all the positives of the last eight months foremost in your mind. Alopecia Areata will sometimes act in this way before it settles down completely.

    Don't be too hard on yourself and your reaction to this newest spot. I think it's a very normal one. I'm in the process of seeing my eyelashes starting to go again. I'm finding it hard which has taken me by surprise because in the back of my mind I kept telling myself not to get to attached to them. Easier said than done especially as they have stayed for over a year with no loss.

    The very nature of this condition is one that is fraught with fear, uncertainty and disappointment for those diagnosed with it. It can even affect long time sufferers like myself who think they have gained the upper hand over it only to find it can still tease and taunt them.

    A day at a time is the best way to approach an uncertain condition like Alopecia Areata. It's not easy to do especially when that new spot appears but I still hold on to my premise that's there room for hope of regrowth and spontaneous remission than worse case scenarios.

    Keep us updated.

    Hugs,
    Joann
     
  3. AmyCE

    AmyCE Established Member

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    Hi Joann,

    I'm sorry to hear about your eyelashes. It does seem that Alopecia Areata likes to mess with our emotions, doesn't it? One day at a time is the best advice, thank you. I especially need to focus on that since the hair loss itself has always been nothing compared to the emotional aspect for me. I've been extraordinarily lucky so far in minimal presentation of Alopecia Areata but the fear and uncertainty is the real disease for me.

    Thanks, as always for your great support,
    A
     
  4. dancer

    dancer Experienced Member

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    Hi Amy
    I too am sorry to hear a new spot has appeared but having good growth else where is really good news :)

    Like Joann I have just lost my lashes, they started growing very slowly at about christmas time last year, as I said in another post it really has upset the equalibrium I had manged to achieve over the last 15 /20 years without them, so even us veteran ( !!!) alopcians still get affected! No matter how many times I tell myself for goodness sakes this has happened many times before those nasty emotions keep popping up. I do believe however as time goes on the emotional upset is not so severe and you pick yourself up a little quicker ( havent got there yet but I am hoping it will be soon :) ) I think being upset is part of the healing/ accepting process, therefore dont beat yourself up that those feelings of insecurity have resurfaced.

    Best wishes and good luck with the shots
    Hugs,
    Sara x
     
  5. AmyCE

    AmyCE Established Member

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    Thanks Sara. You're right. And I'm sorry that you're going through this up and down (down now) too. I do hope it gets easier with time, even if I still have my fingers crossed that I won't have years to develop a thick skin about it because it will just go away and never come back! :)

    I had injections today (so happy to get an appointment so fast) and my derm found another spot I had missed. Although, like last time, I was already regrowing hair in both new spots. I count my lucky stars that I seem to spontaneously regrow before I even find the spots in the first place--this seems really encouraging. Feeling much better today.

    Hugs to you,
    A
     
  6. dancer

    dancer Experienced Member

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    Glad your feeling better , that seems really positive hair is already growing, and thankyou for your kind words :)
     
  7. AmyCE

    AmyCE Established Member

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    Ug, I'm really being tested this week. Just found another, bigger spot. Still, thank God, at the bottom, underside of my head, but twice the size of the one I had injected yesterday. I should have asked for a once-over but I thought I had been pretty thorough on my own. Does anyone know how quickly spots can form? Is it possible for this to have happened sometime over the last 3-4 days? I'm trying to trick myself into thinking I've had it for awhile and not that I am developing new spots every day...for sanity's sake. Even if it's not true. When this started in February this year, I had one large spot that had already started growing hair by the time I discovered it. I didn't get another spot for a couple of months after that and that one was pretty small. Then nothing for three months. Wondering what the pattern is...not that there ever is one, right? :(
     
  8. dancer

    dancer Experienced Member

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    I think each person is very different, but in my experience my hair has always gone very rapidly,( I had orphasis loss to begin with) and also years before any regrowth first time it was 2 years the second time 6 years and then nothing since I was 21 on my head :(

    I am really sorry you found a new spot try hold onto the positive that it is regrowing quickly and it may be just be taking its time to settle down.

    Hang in there :)

    Sara x
     
  9. AmyCE

    AmyCE Established Member

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    Thanks Sara! I will remind myself that I've shown very positive signs before and know that's not always the case. I went in again for injections today (I swear, I'm putting my dermatologist's kids through college at this point) and she found 3 more spots. So I'm just reacting as they pop up and will just do my best not to obsess over how many more will spring up. Still the worst part of it.
     
  10. dancer

    dancer Experienced Member

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    This is a crazy condition so I think we are allowed to act a little crazy too! ;) I think what has helped me the last few days is not telling myself I should be reacting in a certain way , so if I feel down or I feel better I just go with it, that way I am not fighting my emotions. A friend said to me the other day, when I mentioned I was bit down over loosing my eyelashes, well just be grateful its not life threatening etc etc !! YES I am grateful its not life threatening etc etc ( btw I teach disabled people so I do see first hand how that affects their lives and yes I am lucky) BUT I still have the right to feel the way I do and most certainly I will not be made to feel guilty that I do feel sad!! I couldnt tell you how many times I have heard those kind of comments, I dont believe they are intended to be hurtful, there are those people who really dont understand what it is like to live like this every day. At the end of the day it is all relative to whats going on in ones life at any time . So whilst I think it is important to be positive it is important to let those emotions do what they have to do!!

    For me the loosing the hair was the worst as you are in limbo land, I really do feel for all the women who are tormented daily by the unknown.
     
  11. AmyCE

    AmyCE Established Member

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    I have tried every day to tell myself that I should feel lucky for being healthy, that this is only cosmetic, etc. but we can't discount the psychological effects of this disease. It's devastating. And you're so right: we are entitled to these feelings, whatever they are. If we give ourselves license to feel whatever we're going to feel, that's one less thing to worry about. I've been very down today, having to look at my head twice a day to put my topical steroid on and see how much hair I've lost this time (twice what I was dealing with before) and not entirely sure when I lost it or if it's still happening. And this is the first time all week I've let myself wallow...because I guess I needed it today!
     
  12. AmyCE

    AmyCE Established Member

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    10 month update. Found another spot and can't see any regrowth in the others but I'm only 2 months in on injections for this go-around. Mentally, I seem to be dealing with this bout a lot better than when this started, keeping some perspective in mind as much as possible. Tonight my head is itching like crazy, I feel like I'm shedding a ton, and having just discovered a new spot near the largest one, I did have a moment of my stomach dropping but I quickly pulled my hair back and left the bathroom before I could go into a tailspin. Progress, of sorts. I go back to the derm in 2 weeks so leaving things as much of a mystery back there as I can for now.

    I'm loving my new Great Hair Day concealer and just having that in my arsenal (this is the first time I have needed something cosmetic for my Alopecia Areata) makes me feel a little more prepared for additional loss if that's the way this is going. Hoping it remains manageable though and hoping the regrowth continues on its previous path.

    In other news, I've started acupuncture, not in hopes that it can help with my crazy immune system, but to connect me more to the day-to-day emotions and stress that have been a constant challenge. I'm not sure how I feel about it but it's only been one session. As always, I'll keep you posted.
     
  13. Joann

    Joann Moderator

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    Hi Amy,

    Thanks for sharing your updates with us. I do feel that anyone starting out in a panic about being diagnosed with Alopecia Areata will be able to derive comfort and hope from them. Finding a new spot is a bummer but this one can regrow just as the others have. I know it's hard to keep calm and not fret when this happens but you certainly are maintaining the right attitude in not letting your mind wander to the "what ifs"

    It's great that you like the concealer you've found. I know a lot of girls here like Great Day. I could have certainly made use of a product like this myself had I known about it. It's great that we all share and learn about products etc that make the hairloss a little easier to cope with.

    Do keep us posted on the acupuncture. I didn't realize it could be used to help de- stress.

    Remember we're here if you need to share highs or lows.

    Hugs,
    Joann
     
  14. dancer

    dancer Experienced Member

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    Hi Amy sorry to hear about new spot but you sound as though you are keeping yourself together :)

    I had acupuncture for a year for gynea problems.She also did the cups and a massage as part of the hour session. It really helped with the pain and other symptons and as a side result I fely very calm and I was able to deal with problems much better. I saw results very quickly I think about three sessions although I would always feel quite ill and tired the day of treatment and the day after, which is quite normal but then I would feel loads better. I reallly hope it helps you, I strongly believe a lot of holistic therapies give us quite time to get in touch with our bodies and listen! I was dissapointed when the lady moved back to China and there was no other acupuncturist near where I live. :(

    Best of luck keep us posted how the acupuncture goes as well as derm appointment :)
    Sara x
     
  15. AmyCE

    AmyCE Established Member

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    Thanks Joann--managing the "what ifs" is definitely the biggest challenge for me. I think I'm finally getting there. :)

    Sara: thanks for the feedback on acupuncture. I had one session a week ago with about 50 needles all over (head to toe) left in for 45 minutes. It was intense. I am terrible at relaxing (I don't even enjoy massages) so I laid there kind of holding my breath and freaking out the whole time...not the most relaxing! But I did get the sense that these things take time so signed right up for my next treatment, which will also involve cupping. I'll let you know how it goes! I'm sorry that you don't have someone to go to near you. I agree that these holistic approaches are wonderful for getting in touch with our bodies. I especially wanted to start focusing on my physical self in a way that wasn't tied to negative emotions about my hair. Do you do yoga or anything else like that?
     
  16. neencali

    neencali Guest

    don't beat yourself up over your reaction. This thing really does suck. But that said, don't let it get you down for long. I think the stress makes it worse on every level. Good job taking a proactive stand.

    I too thought I was in remission of it but still about once per month I find a small spot. My original spots were 4 inches around and I lost the whole nape of my neck and my crown. Now I get little dime size spots that are concealable. I still freak a little each time but I know now that it doesn't help and that all of my spots grow back. I think knowing that it grows back has made it easier for me.
    Best wishes to you and Happy Thanksgiving.
     
  17. dancer

    dancer Experienced Member

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    I am trained in reflexology and sports massage although I only practise on family now due to pain in my hands. Reflexology is good for relaxation and feeling of well being, even if you are tickilish the pressure is quite firm so within a few mins its ok! A good practitioner will be able to tell you problem areas. In any treatment (especially when you are paying!) is really important to find someone you can trust and make them aware that you feel tense during sessions. Perhaps now you know what it is about you will enjoy the next treatment :). I think yoga would be really helpful as you learn techniques to relax, the deep breathing exercises are really good and maybe you would find that helpful when having acupuncture so you would gain maximum benefits.

    I teach exercise mainly for the older age group, many have health issues so I do a lot of relaxation and stretching. I do yoga at home. If you are thinking about taking classes check what the class entails as there are many types of yoga, some are more power yoga and some relaxation, however whichever class ever you choose all exercise promotes endorphines, the feel good factor, and so it about enjoying what you are doing and liking the instructor. I know in our area Dr are prescribing exercise for depression.

    Hope this helps :)

    http://www.reiki-for-holistic-health.com/

    This is another form of stress relief, of course it depends what you believe in and if you are inclined to believe in natural therapies. I had a friend who treated me this way for hip bursitis I was pretty impressed at the results.
     
  18. AmyCE

    AmyCE Established Member

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    Thanks neencali--I've been trying to really focus on that too, that my spots have so far always grown back. I don't know why it took me so long to notice, but a couple of nights ago, I was looking at the back of my head to find my latest spot to put Clobetasol on and found this long, curly tuft of hair, about 5 inches long. Took me a minute to realize it was the regrowth from my first patch back in February. I guess I had stopped thinking about it past the point where I had enough regrowth there that it wasn't a round, bald patch anymore. It kind of surprised me to see this long strip of hair there. Curly (which the rest of my hair is not) and going strong 10 months later!

    - - - Updated - - -

    Thanks for all the helpful info! I've been doing yoga sporadically for about 15 years but I've never made it a real part of my life, which I should. I do find it enjoyable but again, still can't ever let go completely. I'm usually planning dinner in resting poses. :) But I do always feel relaxed and happy afterward so I know I should stick with it. I'll look into Reiki healing as well. I live in San Francisco, so natural therapies are very easy to come by and I'm getting more open to it. As crappy as Alopecia Areata is, it's been a wake-up call for me in many ways to work on my emotional stuff and take better care of my body in general. While I'm happy with my medical treatment at the moment (can't say for sure it's the steroids making my hair grow back but it's enough to keep me going back), I know I can benefit a lot from holistic approaches to handling the stress and emotions that come with it.
     

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