confusion over rogaine and telegon effluvium

Discussion in 'Rogaine (Minoxidil)' started by needhope, Apr 24, 2015.

  1. needhope

    needhope New Member

    I hope someone can help me with my confusion on rogaine and what type of hair loss it is helpful for.
    I started having sudden hair loss (coming out in huge numbers) 3 months after losing 25 pounds in a month and a half and three days after having an allergic reaction to a med for anxiety.
    Prior to this I had no thinning or shedding (abnormal shedding)
    There have been two times in the past year and a half that I thought it was slowing down and was going to stop.
    I started out with a lot of hair and the shedding was so bad it could never catch up but I did use to have at least some regrowth. My hair appeared normal (not to me beause I knew how thick it was)
    I have a severe anxiety disorder and am extremely underweight. I can't eat and my anxiety is out of control due to the hair loss. I was at the doctor today and she told me my hair won't grow back if I can't get my eating under control and anxiety. I take meds but don't want to increase them because I fear everything and anything that can cause shedding will.

    I have had increased shedding during med changes and when my mom had a stroke, aslo after being hospitalized and always when I am really anxious the shedding increases a month or so later.
    I haven't been back to the derm but the family doctor said to start rogaine, eat properly, try to lesson anxiety and supplement iron, vitamin d and some other things I am low in.
    I can see my scalp now and my loss is all over. She said she doesn't believe this is female pattern as she sees no pattern. I am confused though as my part is wider and I have loss in the top and front as well as all over?
    I see no regrowth anywhere on my head. My shedding is so bad (I stopped counting) but a shower would consist of 700 hairs. I am really scared and not sure what to do.
    This has been chronic heavy shedding that once in awhile seemed to be slowing down each month and then I got anxious again stopped eating and it is in full swing again very high.
    I don't have the hair I had to lose this much now. This happened really fast in a year and a half I have lost over 60% of my hair.
    My questions are is all loss in the top and front fp hair loss? Will rogaine help stop the shedding and regrow at least the top and front or since I am shedding so much will it make it worse.
    I am going back to the derm to see if I can get steroid shots or something for the rest of my hair. It is diffuse all over.
    I am terrified to try rogaine but want this to stop. I am working on eating and the anxiety but I am not doing to well with it.
    If anyone has any advice I would appreciate it.
    I am thinking about getting a wig because I can't stand the shedding anymore. I am terrified I will wake up with no hair in the next few weeks.
    She said no one would notice my hair loss but I wear it up every day, and it IS noticeable now.
    A few months ago it wasn't so noticeable and I didn;'t have the loss the way I do at the front and the top.
    The loss is all over and I had more hair on one side of my head then I have all over my head now.
    I don't know whether to start rogaine or not.
    The last time I was at the derm she didn't think a biopsy was necessary. It is way worse now, she said she saw some vellus hairs near my ears and temple but no where else again this was in October though. I have no idea whether to start the rogaine while I am shedding this much all over. I want to do what will make it better not worse. My derm is big on rogaine for all types of hair loss so I know that is what she will say too. thanks for reading.
  2. needhope

    needhope New Member

    also is it true rogaine ages you? I am scared of this too
  3. khikhob

    khikhob Member

    Hi Needhope,
    Firstly, hugs to you. I am so sorry to hear how much pain you are in. I can somewhat relate - I also have chronic, severe anxiety disorder along with Borderline Personality Disorder and Body Dysmorphic disorder (which has made hairloss an overwhelming blow). My hair started falling out about 2.5 years ago and I was diagnosed with CTE brought on by very low ferritin.

    So, firstly you had your iron levels properlyly checked, not just ferritin but also saturation level/total Iron Binding capacity? If you are very thin and undernourished it would be advisable to have as much blood work done as you can to establish if you are deficient in vits/minerals.
    If your iron is low I can strongly recommend IronSmart by Lorna Vanderhaeghe - I have NO affiliation with the company, just have found it the most tolerable form as I also have IBS. If you have metabolic issues as I do then it is a very gentle, liposomal iron that is easily absorbed if you are finding it hard to eat etc. Pricey but I guess you have to weigh up where you wish to concentrate your efforts.
    If you are able to get a referral to an endocrinologist to test your cortisol levels (stress hormone), DHEA, total and free testosterone and other hormone values that might be helpful too. However, it sounds like the nutritional issue is probably of primary concern.

    As far as Rogaine is concerned, opinion is divided as to its success rate - some medics say as low as 40% or less. It seems that a good proportion of people are genetically 'immune" to its active ingredients. For my part, I used a 5% (men's formula), liquid, not foam, upon my first dermatologist's recommendation. It's non-prescription so not covered by any med insurance. I used it religiously for 18 months and saw no new growth and continued shedding so I suppose I am one of those for whom it doesn't work. It also causes hair to look greasy which just seems to cause hair to look thinner still. It's efficacy can be increased by a combination of a shampoo containing ketoconazole, which is found in some anti-dandruff products and acts as a DHT inhibitor, but this would only be relevant if the hair loss was DHT related (ie AGA). Rogaine is reputed to cause so-called 'smoker's face' - aging of the skin caused by collagen depletion. I can't speak to that because I smoke, and I'm not about to quit as my anxiety would go through the roof! Double-edged sword?

    I spent the first two years convinced I have AGA - I'm 45 years old so perimenopausal. However, my 'pattern' is like yours, no real pattern. I was more convinced of AGA because I had, like you, thinner top and my temples, particularly my right, have been very hard hit. But I also have diffuse, severe thinning at the back and was losing similar quantities to those you describe which sounds much more like CTE. I also have lots of hairs at all different lengths - my hair is long - and a 'halo' of short, baby-like hairs - again suggestive of CTE. See if you can get a second opinion and have some more blood work done. I've seen 5 dermatologists over the last 2.5 years and not ONE of them would give me a biopsy. I think many derms reserve biopsies for cicatricial (scarring) alopecia and scalp disorders so perhaps they will not recommend one in your case.

    Two months ago I saw a new derm put me on low dose of Spironalactone and who referred me to a clinic to have Platelet Rich Plasma (PRP) treatment. It is a very costly treatment and I have had one session. I have definitely noticed a decrease in shedding over the last three weeks or so - a dramatic decrease. Of course, now I don't know if it's the Spiro or the PRP which has helped. I'm not sure that's something you would be able to consider but just wanted to give you as much info as I can about the only things thus far that has worked for me.
    I am surely not the first person to say this to you but stress plays a very prominent role in hair loss and so whatever you can do to manage your anxiety will only help. It might be an idea to do some internet research on the meds you are taking and see if hair loss is a category one side effect, and if so to discuss with your prescribing doctor an alternative. One of my psyche meds is an SSRI which may cause hair loss but I have been on it for 25 plus years and am not prepared to trade off it's benefits for my mental health - again, double-edged sword.

    Sorry for such a lengthy post but since you say you are new and in need of info I thought I would spread the net wide and tell you what has - and hasn't - worked for me. I'm not a medic and can't endorse any one treatment or another - just have done a tonne of research on this subject as my somewhat obsessive personality would dictate! I hope at least some of it proves to be helpful. Do let me know how you get on, and here's another hug 'til then. All the best x :)
  4. khikhob

    khikhob Member

    PS did your derm actually give you a definitive diagnosis? If you have shedding that spikes up and down as you describe and seens to cycle in tandem with stress it sounds to me - again, not a doctor! - more like CTE. Rogaine can be used for CTE as a means by which to theoretically 'kick start' the hair out of the telogen and back into anagen phase and then discontinued when shedding tapers off. x
  5. needhope

    needhope New Member

    Thank you so much for your reply. Big hugs to you too! I am so sorry your are suffering yourself. I can't believe you have bdd also. Yes this feels like suicide for me. I know that sounds dramatic but it is how I feel everyday. The anxiety will not stop. I just made an appointment with a bdd specialist to help me cope with this. It has affected my whole family in the last few months. I can't function and I don't leave the house except for the doctor. I should see an endo I think I wish I did that when I had more hair. I wasn't leaving the house much then but much more and it was n't noticeable then. I don't seem to get any regrowth anywhere now.

    I was told telegon effluvium but I think she thinks I have some fp as well. I used to get regrowth I don't now at all. I look for it. It seems it disappeared. The loss is all over my head and the nape of my neck is hit badly as well as all over. Have larger parts all over and down the back of my head. I have to go back to the derm. The front and top of my head and parts concern me. Well it all concerns me. It consumes me. The amount coming out is awful.

    The doctor I just saw was the family doctor, she said she doesn't see a pattern. I fear she is telling me what she wants me to hear because of my mental illness. I do see a pattern, yet the loss is all over and the length of my hair is so thin as well as the sides.
    I had some levels checked awhile ago and was low in ferritn, and vitiamin d
    It has never stopped the shedding but it has slowed down twice for a couple of months and I thought it was finally stopping. I do have some stomach issues and wonder if I am absorbing vitamins.
    I am terrified of shedding more on the rogaine as If you double what I am losing even for a couple weeks I don't see how I will have hair left.
    I started out with a lot of hair and I think I did have regrowth for awhile (it just couldn't keep up)
    I had hormone dhea tests etc awhile ago and they came out ok. I had lower estrogen at one point then taken again it was higher. The testosterone and dhea came out ok and testosterone on low side.
    Do you have bigger parts and loss on top as well. I noticed in the last few months where my hair was thicker in the hair line bangs and up top is now seeming sparser. I brush it now and the hairs from the length are all over too.
    I don't know what to think, I hope it is just cte but I can' t see how I can ever grow back over 60% of my hair and it is still falling out.
    I do notice when I stress, the next month the shedding gets worse. It wasn't so noticeable a few months ago now its awful. I also just got the weirdest worst hair cut that makes it look even thinner. that set me off too. I can't look at pictures of myself from before this and even a few months ago I was calmer as it looked halfway normal and I thought it was stopping I als0
    get severe burning on my scalp and in my eyes I don't know what that is. I just wish it was not noticeable it was livable a few months ago. I also can't color it.

    I am really scared. Nothing seems to help the anxiety. It is physical all day long and unbearable. thanks for your reply. Do you think with me shedding this much the the rogaine will help or make it increase?
    my family doctor said I may have to use it for life as hair falls back out if you stop so I am confused. I would love to get the prp just don't know about the cost. I guess I have to go back to the derm. I am just scared because of the change since the last time I was there. They all don't understand my rogaine fears either, Thanks again and I am sorry you are going through this yourself. I am glad you are having regrowth, Do you think because I am not now that is not cte? Thanks again I so appreciate your help and detailed response. x
  6. needhope

    needhope New Member

    I see no regrowth anywhere and I can see so much scalp. it really scares me.
  7. petey3

    petey3 Member

    Hi. I'm so sorry you are going through hair hell too. Something about your post struck me. I have also been hit hard at the nape of the neck too. It hasn't shown any improvement at all either. My hair loss started with TE caused by a change in birth control pills. Because the TE was prolonged, 10 months before we found the cause, it kicked in Androgenic Alopecia. Seriously?! Apparently, that can happen. Honestly, what woman in their right mind would take birth control pills if they knew it could trigger female pattern hair loss...any way I digress.

    You mentioned your Vitamin D and Ferritin level are low. There is a board on here titled "Holy Moly My ferritin has skyrocketed" or something like that, that may provide you with some useful information to help with that. If you have stomach issues, taking sublingual vitamin D drops may absorb better than pills. I went to a naturopath and she recommended that delivery method to me.

    I wish I could be of more help. I'm in the same boat with the fears about Rogaine (I haven't started either) and I've also seen a Doctor about PRP and am considering it too.
  8. NMMama

    NMMama New Member

    First of all, hugs to you. I'm so sorry for what you are going through. I, too, have suffered with a combination of anxiety and hair loss. I was never an anxious person, but had my first panic attack early in my second pregnancy (2008) and the anxiety continued throughout the pregnancy, as well as a bit after. I had the normal postpartum hair shedding, but it just never really stopped until my third pregnancy (2012) then resumed once again after my baby was born. My anxiety was relatively ok after that pregnancy, but really amped up as my shedding continued. To add to it all, my marriage was VERY miserable (discovered my husband had been having a prolonged affair, lovely). I am now, thankfully, going through a divorce, but between the stress of everything and hormonal upheaval, my shedding continued and brought on panic attacks once again. I started cymbalta in September. It helped a bit at first, but eventually caused worse symptoms- anxiety, horrible, depressive episodes, with suicidal thoughts. I decided to get off of it without switching to another med. I did so very gradually, but now feel vastly better. I totally get that feeling of being trapped in a vicious cycle. Anxiety, stress, hair. After several derm visits, I've started Rogaine (2%, just once a day at her recommendation), but it's too soon to know if it's working. Some things that have helped my anxiety have been acupuncture, getting off of cymbalta (I'm not advising you to get off your meds, but it's what I needed to do), and a couple of books- Hope and Help for Your Nerves (Claire Weeks) and Buddha's Brain (Rick Hanson). They obviously don't address hair loss, but gave me some valuable tools to deal with my anxiety. Also, there is a program online called Panic Away. I haven't spent any money on it, but signed up for emails and took advantage of what's available for free. Also helpful. A lot of that program seems to be based on the Claire Weeks book. At this point, I honestly don't know what will happen with my hair, but do feel like I'm handling it better, that it's not consuming me the same way. This may sound really silly, but seeing other women on YouTube sharing their experiences, young women who wear wigs and it's no big deal for them now, it just helped me to gain some perspective. I'm not wearing a wig and hope I'll never have to, but seeing them and heating their experiences, especially the young women, has been a tremendous reminder that I'm not alone and that life can go on, happily. It's not ideal, not at all, but making peace with it makes life more livable. This doesn't mean I've stopped trying to fix my problem (supplements, hair products, research, research, research!), but all these things have really helped me to feel a bit more alive. If you are able, please go out, if only for a walk. Try not to isolate yourself. And you are far stronger and tougher than you realize for having gone through this journey. I know that for me, this has all made me a much more understanding and sympathetic person. I'm sorry to have been so long-winded, but wanted to share in the hopes that something here would be helpful to you or anyone else reading this. I really do hope that your anxiety and hair improve! Take care!
  9. needhope

    needhope New Member

  10. needhope

    needhope New Member

    I am sorry you are going through this too, Thank you for your reply. I will look at the link you suggested about the vitamins. Weird you have the nape of the neck thing too. My derm says its part of the severe TE. Oddly I had a birthmark there I never knew I had as it was covered with hair before. I think I am going to try the rogaine. She did say I could put some in my nape area too, but I don't know if I will.

    I am so sorry you are going through this as well. I know you are right about the bc pills, if they would warn women this could happen they would at least be able to make the decision to take that risk.
    Thank you again!
  11. needhope

    needhope New Member

  12. needhope

    needhope New Member


    Thank you so much for your reply. I am so sorry you have been going through this as well. You have had to deal with a lot of stress. I agree the anxiety causes a vicious cycle. Thank you so much for the recommendations of books and the anxiety program you mentioned. I think I am also going to start rogaine as well.
    I am also trying to make peace, as well as try to work on treatments for my hair.
    I am hoping to come to some peace with this, so far I have not. I am looking into wigs at this point, I just can't stand looking at it anymore and the amount that Is coming out. That is a whole new set or anxiety for me.
    I will try to find the books you mentioned and take it one day at a time. I hope you continue to find peace.
    Thank you again!