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  • scared

    initial problem: hair loss
    it began with Elmiron
    but i have been off it for 42 days (6 weeks)
    and its still falling out.

    I taking Elavil 25mg

    I quit the Elavil for a see if the hair loss would stop
    and it truly did slow down.
    but i got bladder sick again..and went back on the elavil
    i cut them in half...its still falling out.

    So. I need to quit the make the hair loss stop
    but the thought of getting bladder scary
    and i cant be bald.

    Is the elavil causing my hair loss?
    Uro says No
    Dermatologist says No
    Pharmacist says No
    but the damn internet says MAYBE

    i know, its a small dose 25mg..but why is it still comming out.
    how long does it take to stop?
    when can i expect regrowth?
    Am I getting better or worse?
    I dont know

    i suppose i need from you ladies
    the name of another drug...that works like elavil...thats doesnt have a side effect of hair loss.
    i need it to calm the bladder
    and help me sleep

    im afraid there is none...and thats where i loose it.
    the thought of being bladder sic is just too much for me

    bloodwork is normal

    please help me
    Last edited by ICNDonna; 05-02-2007, 06:01 PM.
    Quit ELMIRON due to hair loss
    Cystoprotek ROCKS!

    find me on FACEBOOK -
    search my email [email protected]

    Current Meds:
    AM Cystoprotek & ATARAX 50mg
    PM Elavil 25mg

  • #2
    I have taking Elavil for years and never had hair loss, Please do not just stop this medicine it can cause severe depression if stopped all of a sudden.. As far as your hair falling out it could be caused from stress.. My mom lost almost all of her hair because of a severe stress in her life..

    Last edited by ICNDonna; 05-02-2007, 06:01 PM.

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      You are ok. We are here for you. It is very scary to lose your hair. Contact your uro, and get another opinion from a dermatologist. How is your diet? Are you eating enough? Do you have well water? I don't think the elavil would do it. Try to hang in there until you get some answers, try not to make all or nothing decisions for now. Tell us as much as you can so we can help you the best we can. Do you have a gp? I would call them up too, maybe something more serious is going on besides med side effects. I will do some online research. We areall here for you, and need you just as much as you need us for support. Don't throw the baby out with the bathwater...I will be intouch soon when i'm done doind research. I know its so hard right now, but be as brave as you can, and we will help you get this figured out.

      IC diagnosed officially via cysto/urodynamics 1/26/07

      Grade II Endometriosis diagnosed via lap 12/11/07

      "Fall down seven times, Stand up eight."

      "Life is a tragedy for those who feel and a comedy for those who think."

      Current Treatments:
      Interstim Since 5/25/07!
      Birth Control


      • #4
        Iron deficency and thyroid problems can cause hair loss, I just did some research. You should pack it up head to the ER and get some blood work done. Thinking of you...

        IC diagnosed officially via cysto/urodynamics 1/26/07

        Grade II Endometriosis diagnosed via lap 12/11/07

        "Fall down seven times, Stand up eight."

        "Life is a tragedy for those who feel and a comedy for those who think."

        Current Treatments:
        Interstim Since 5/25/07!
        Birth Control


        • #5
          I just googled the med amitryptyline ( elavil) it does mention hair loss as a rare side effect. Here is the info I got.

          Elavil - generic Amitriptyline - is a tricyclic antidepressant. This is a catalog of side effects for the medication Amitriptyline - brand names Elavil and Endep, which is sometimes prescribed for the treatment of bipolar disorder and other mental illnesses.

          Common Side Effects:

          Check with your doctor if any of the following side effects continue or are bothersome:

          Dizziness; drowsiness; dryness of mouth; headache; increased appetite (may include craving for sweets); nausea; tiredness or weakness (mild) ; unpleasant taste; weight gain

          Less Common Side Effects:

          Check with your doctor if any of the following side effects continue or are bothersome:

          Diarrhea; heartburn; increased sweating; trouble in sleeping (more common with protriptyline, especially when taken late in the day); vomiting

          Always Notify Doctor:

          Less Common: Blurred vision; confusion or delirium; constipation (especially in the elderly); decreased sexual ability (more common with amoxapine and clomipramine); difficulty in speaking or swallowing; eye pain; fainting; fast or irregular heartbeat (pounding, racing, skipping); hallucinations; loss of balance control; mask-like face; nervousness or restlessness; problems in urinating; shakiness or trembling; shuffling walk; slowed movements; stiffness of arms and legs

          Rare: Anxiety; breast enlargement in both males and females; hair loss; inappropriate secretion of milk - in females; increased sensitivity to sunlight; irritability; muscle twitching; red or brownish spots on skin; ringing, buzzing, or other unexplained sounds in the ears; seizures (more common with clomipramine); skin rash and itching; sore throat and fever; swelling of face and tongue; swelling of testicles (more common with amoxapine); trouble with teeth or gums (more common with clomipramine); weakness; yellow eyes or skin

          Withdrawal Effects - Notify Doctor:

          Headache; irritability; nausea, vomiting, or diarrhea; restlessness; trouble in sleeping, with vivid dreams; unusual excitement

          Overdose Effects - Notify Doctor:

          Confusion; convulsions (seizures) ; disturbed concentration; drowsiness (severe); enlarged pupils; fast, slow, or irregular heartbeat; fever; hallucinations (seeing, hearing, or feeling things that are not there); restlessness and agitation; shortness of breath or troubled breathing; unusual tiredness or weakness (severe); vomiting

          Other side effects not listed above may also occur

          There are other meds similar to elavil such as nortryptline that can help the bladder and may have lesser side effects. I know you are scared right now and anyone would be. If you are feeling that depressed, you need to talk to someone.Call your doctor right away and tell him/her what you are feeling and what you are going through. Maybe he/she can switch your med.


          • #6
            Also, I forgot to add, you should really call your pharmacist and ask them about the drug and it's possible side effects, they know more about drugs than the doctors do. It says that the hair loss is Rare so most doctors probably have not run across any of their patients who have had this side effect, but that does not mean it is not possible. Everyone is different. I would say that if you stopped the med and you noticed you were not losing the hair as much, and then started it again and it came back, then it is a very good possibility that it is the elavil causing it. You know your body better than any doctor does.
            Again, there are other meds similar to the elavil that you can try for the bladder pain that may not cause this side effect. Please dont feel discouraged, I know that is easier said than done, I know. Like I said, i would call your uro back and ask for one of the other meds to see if it will help with the pain. Hang in there hon, things will get better.


            • #7
              I am glad that you had your bloodwork done. I am assuming that your thyroid is functioning properly, which is great news! We have PM'd each other a few times. I know that you are very anxious and worried about your hair. I have been right where you are with the fear of losing control of another part of your body and your way of life. I used to have such thick nice hair and I too thought it was so horrible to go through such a visably physical change with losing my hair. I researched everything while still keeping my fears to myself and doing everything I could to hide my hairloss. One day, I had just washed my hair and was visiting with my family in my den. I had leaned over to pick something off the floor and my mother freaked out on me about my hair. I didn't realize when I bent down, that my hair separated showing my bald spot along the back right side of my head. That was why I kept my hair in a ponytail.

              I have given you all the remedies and advice that I know of. Hairloss is so stressful. I have been wearing a wig for almost a year now and using my remedies and talking to my doctors. I am having some regrowth, but at the same time, I am still losing hair which the doctors say is normal for everyone, I had just lost so much hair, that it is taking time to regrow my hair. I had hairloss for years after I stopped taking Elmiron. IC causes so much stress to our bodies especially if we are on so many meds to help us function as normally as we can. I know you made a comment about Elavil may be causing your hairloss. I have been off and on Elavil for many years, and I haven't seen a difference in my hairloss getting better when I was off the Elavil.

              What length is your hair? Mine was below my shoulders for several years, mainly because I was intimidated about getting my hair cut. I was doing my best to cover up my bald spots by keeping my hair in a ponytail. I was trimming it myself just because I was so scared to actually show people my actual bald places. With the help of several women on this site, and my former co-worker, I got on the internet and found a wig that I liked and bought it. I just couldn't get myself to go to an actual store due to my embarrassment and my own vanity. When the wig came in, I put it on and felt so normal again. My wig is a short style, so it was very different from my own style. My hubby and I went out with my son's future in-laws that night and I wore my wig for the first time. Ann never guessed it was a wig. She went on and on about how much she liked the style. I finally told her that it was a wig and explained to her about my hairloss. I have definitely learned to be more confident because of my wig. While I am still trying everything I can to have my own hair, which is slowly growing in, I am glad that I have my wig. I do get alot of compliments on it and it does make life easier getting ready. I have cut my hair to above my shoulders (like a "bob" style) just to help talk the weight off my hair. That has seemed to help as well. My mother wanted me to shave it, but I couldn't get myself to do that.

              I have been to several doctors and have been told by most of them that hairloss in women is more common than we think, even without the stress of illness and medications. Hormones have alot to do with it as well as genetics. Alopecia may be something you need to research as well. I have been told that they don't believe my hairloss is due to Alopecia, but I do have a history of skin problems like eczema which is another auto immune disease.

              I have already said a prayer for you.

              Hugs and prayers,


              • #8
                Hair loss can also be other medical conditions , showing up. Stress is a amazing thing to the body & mind and it will show up in your hair ,nails skin etc. I know it's hard to deal with all the question why? But you will find your answers and get the apporiate treatment soon .Please do not hurt yourself , Get the help you need asap if you feel you are unable to handle this alone.
                sending Big Hugs Sandra
                "Never Give Up."

                To view pictures of my creative interests and Maine Coon kittens click here:[email protected]/

                My Photobucket Link:


                • #9
                  thank you soo much

                  thank you ladies

                  this disease is sooo much more than a bladder problem.

                  the effects on just unbelievable...i mean mind, spirit, not to mention poor boyfriend

                  i hate it
                  i am a very independant person.
                  and it just kills relinquish daily things
                  like..i used to dust my house & wash my jeep weekly..
                  i dont do any of that anymore
                  im either sick..or worried about being sick
                  its crazy

                  i have always been a stressed out indivual..which im sure got me into this mess in the first place.
                  thank heavens for this board..

                  i still dont what im going to do
                  but i searched HAIRLOSS..and emailed all of those who had it..
                  and i found some good things..

                  like 2 people..told me it took 6 months for hair loss to stop for them
                  that gave me hope
                  thank you again
                  Quit ELMIRON due to hair loss
                  Cystoprotek ROCKS!

                  find me on FACEBOOK -
                  search my email [email protected]

                  Current Meds:
                  AM Cystoprotek & ATARAX 50mg
                  Dinner CYSTOPROTEK
                  PM Elavil 25mg


                  • #10
                    I am so sorry that you're having such a rough time. I saw your post while I was at work today but it's so hard to post at work since I should actually be doing work, lol, who would have thunk it. I hope that you can figure out what is going on with the hairloss and get it under control soon. I've been on the Elmiron for about 6 months and I haven't seen it do anything, no hair loss but no help that I can tell either.
                    You are right though, it is crazy how much this darn IC affects your whole life. I used to keep my house so clean. Now all 4 kids live with us and since I'm in pain so much of the time, or if I do to much I'm in pain or exhuasted I never seem to get anything done anymore. The only time the house really gets cleaned the way it should is when my family is coming to visit and then I have to scramble to try to get it done and I stress myself out anyway. You are not alone in this. I hope you feel better soon.

                    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                    I have tried every oral medication as well as rescue instills and DMSO.

                    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                    Also proud mom to the best Bullmastiff on earth, Claus


                    • #11
                      I just wanted to let you know, although I have IC, PFD and chronic pelvic pain, the doc has never prescribed meds which cause hair loss, BUT stress has caused my hair to fall out by the hand fulls and clog the drains. The wonderful women of these boards have given you excellent advice and support, which you can use to solve your worries. It will be hard to know if the hair loss is due to the drugs or stress, even hormones can contribute. I wouldn't agonize over the cause, just let your body relax and take care of yourself. Stress will make IC symptoms worse too.

                      Please put this in perspective if these meds are helping you and give you back your life even if you do loose hair, what is more important? There are beautiful wigs and hair pieces as well as extensions. (If a salon it too much with all the medical bills, go to a local beauty school for the extensions. It will save you a boat load of money.) I would go bald to have meds, which would give me back my life and enable me to work again. The journey of chronic disease makes us review our priorities and rearrange them. Hair loss is no reason to consider suicide, you are too important and precious for that kind of severe action. Your boyfriend would probably rather have you with less hair and in better health. I know it traumatic and no fun, but it will pass, and enjoying life again is most important.



                      • #12
                        You are too important, with or without your hair. We need you here. Please don't do anything so drastic. The hair situation will probably resolve, once you can relax a little more, although it may take longer than you'd like to wait. But YOU are not your hair; it's only a small part of you, and there are beautiful, completely natural looking wigs that you can try in the meanwhile. It might even be fun, choosing the style and color, maybe even more than one wig.

                        I really think you need to get some counseling. You are so tense and anxious, it comes through in your posts, and you deserve to have help with that. IC is a royal pain, and if you are already an anxious kind of person (like me) it can throw you into a tailspin. So, please do what I did, and find a counseler or a psychologist or a psychiatrist or someone that you can talk to, who can help you learn to relax. Tension only makes the pain worse too. There are people who can help; I never really believed in that until I met my current shrink, but she's made a huge difference for me. Please, please, just do that one thing for yourself, it's so important. And you are important, you matter to us, we need you here as Erika said. Please take care of yourself.
                        Last edited by Berkshire Road; 05-02-2007, 06:27 PM.
                        Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                        Wishing you happiness and good health, and all the best out of life.

                        Peace, Carolyn

                        Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

                        On the Beach with IC


                        • #13
                          I strongly encourage you to see a professional counselor to help you deal with the fact that you have interstitial cystitis.

                          Stay safe

                          Elmiron Eye Disease Information Center -
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                          Have you checked the ICN Shop?
                          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                          Patient Help:


                          Diet list:

                          AUA Guidelines:

                          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          Anyone who says something is foolproof hasn't met a determined fool


                          • #14

                            so..i called my health network..listed under mental health.
                            they are supposed to call me back..see if they take new patients.

                            ive always been sceptic about these head shrinks
                            because the problem i am having is NOT IN MY HEAD

                            you know what it mean. its a real problem...if my bladder is fine..and my hair is fine...i would be fine.

                            actually my problem.its ON my head (the hairloss) .not in my head

                            Anyway, maybe they can help with it better.
                            i don't know. but i guess it couldnt hurt.
                            Quit ELMIRON due to hair loss
                            Cystoprotek ROCKS!

                            find me on FACEBOOK -
                            search my email [email protected]

                            Current Meds:
                            AM Cystoprotek & ATARAX 50mg
                            Dinner CYSTOPROTEK
                            PM Elavil 25mg


                            • #15
                              I think it is a good idea for you to talk to someone. But like doctors, some shrinks are good and some are not. Dont worry, they are not going to say your pain is all in your head. Heck, the first physcologist I went to, after I told him all the pain I was in and how sick I was ( this was before my IC, but when I was sick with my other health issues), the shrink told me that he could not help me, that I had a medical problem and needed medical help not physcological!
                              I then went to talk to just a counselor, and she was great. She even wrote to some of my doctors pushing them and telling them they needed to Sh** or get off the pot and get me some medical help as far as my health was concerned. That got them going. So I think it is a good idea, and maybe it will help you. Good luck hon.