I'm Back! Here's an Update.

Discussion in 'Support' started by OnceUponaTime, Sep 29, 2015.

tinnitus forum
    1. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      I am back and still have T. Back in Dec. 2014 I was going to start Retigabine but I couldn't. I still have the little bottle of pills staring at me every night on my night-table. (sigh) It turns out that my beautiful long hair started to fall out. That's when the stress of T shift to the stress of hair loss. :(. I went to the doctor and after some blood tests I found out I was severely deficient in iron. In other words anemic. I was tired all day and short of breath, dry skin, brittle nails, often feeling cold and never could warm up and the worst thing that can happened to a woman.... my hair was falling out. I could not start Retigabine because I was anemic. I still am. I am taking Iron ferrous sulfate, Lysine and Vitamin C to bring my ferretin (blood cells that store proteins) level up to at least 70. Here is the thing: Here in the USA Ferretin levels are "normal" between 18-250... well I had 18! My dermatologist told me that anything below 70 causes hair loss. So the research on hair loss began together with all the "not so joyous" anxieties and more stress it brought to my life.

      How can these two things happened to me? Completely out of my hands...I have no control over it. I shake my head. I cry. Yet I still have to get up everyday and be a Mom to my two beautiful daughters, homeschool, run my home, take care of my husband and do it all with a smile on my face. Quietly. I bear my cross and God gives me strength and grace to face each day. For those who do not know, my T is probably 8 out of 10 (hizzing, static, hum, both ears & head), 24/7, 4 years now. I live with T, (habituate) but I can never get used to it (at this level, who can?) I bear it. I suck it in ( like my husband would say) I deal with it. It gets to me every now and then...but it will not defeat me! I won't let it. I hold on tight to the good in my life and resist the awfulness of T and hair loss. I hope for a cure for T and I hope that after I bring my iron levels up my hair will regrow again. It will take time. I must confess. I rather be bold and not have T.... but still the thought of going bold is not pleasant.

      I hope I can spend more time around here and be of support and help to others... God bless you all. I wish you all happy days.. :)
       
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    2. billie48
      Sunshine

      billie48 Member Benefactor Hall of Fame Ambassador Team Research

      Location:
      Vancouver, Canada
      Tinnitus Since:
      03/2009
      I admire your strength. You have been dealt with two tough challenges and you survive them and you do have some sense of humor there choosing between baldness and T. I remember years back watching Star Trek Voyager and saw the actress playing an alien with bald head, and yet she was beautiful to behold. Besides, beauty in the inside counts much more than the outside. Otherwise you won't see so many beautiful models, singers and actresses divorcing so many times. Talking about Star Trek, do you know both Captain Kirk (William Shatner) and Spock (Nimoy) have had bad tinnitus due to an unexpected pyrotechnic explosion too close to them in a Star Trek set. Now you have the leaders of the Starship Enterprise going 'eeeeeeee' in their ears all day while exploring the cosmo, lol.

      Thanks for returning to give us a nice update. We sure love to have you giving support and help to the newbies.
       
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    3. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      I have the same kind of T you do, and I am not anemic. I understand about the distress of hair falling out! I'm sure your docs are doing everything they can, and I hope your hair finds a healthy balance again. Stress can make hair fall out, too, unfortunately. To make it feel thicker, try Avalon Organics with Biotin B-complex. It works for me. :) At Amazon: http://www.amazon.com/Avalon-Organics-Thickening-B-Complex-Packaging/dp/B0016BC2BM/

      How were you lucky enough to be prescribed retigabine? What kind of tests did you have to undergo before your physician said okay to prescribing it?
       
    4. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      Cheza. No tests... I just have a great Neurologist here in NY who is young and willing to try new things. He only prescribed me a low dose.. 30 pills at 50mg 1 per day. My insurance even covered it...though I had to pay a partial copayment.

      Thank you for the recommendation, I will take a look at Organics with Biotin B-complex. :) Thankfully, so far no one has notice a thing... but I need to stop this asap..lol



      Billie48. Oh Lord! As much as I love my hair...I rather be bold than live with T...lol. I can always wear a wig or a hat!!!!!! :) Funny thing is...my husband is going a lil'bold on top and we are panicking together...hahaha... He also has mild T due to his firefighting job.....oh well...we'll grow old and bold together!!!! Hysterical!
       
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    5. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      If it's any help, my younger daughter had her hair falling out due to iron deficiency and after few months of taking iron it was all back to normal.
       
      • Helpful Helpful x 1
    6. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      That dose likely won't help you. See the retigabine thread for info on the dosage to ramp up and then taper down after you've been on it a while. Since your neurologist is young and keeps an open mind, maybe send him a link to the thread, too.

      May we all have beautiful shining hair for as long as it lasts :)
       
    7. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      Valerie. Oh that is wonderful!!!! I have been on Iron 8 months now and the shedding continues. :(. Yesterday was a very sad and bad shedding day.... more than usual which puzzles me. I AM TAKING IRON!! WHY IS STILL SHEDDING!!!?? Had to let that out... grrrrrrrrrrrrr. The T has changed a bit. The humming has been a little more noticeable and bothering me for like a week now.I could not hear the hum outside and now I can. I thought it would go back to its normal but it hasn't. Only thing I can think of was a bad case of allergies I had when it got more noticeable. SIGH.

      Cheza. I did gave him hard copy of all the information that was given to me here. That's how he came to know of Retigabine for T. He wanted to start me with a low dose and take it from there.... been cautious, I guess. I was the first patient he ever prescribed Retigabne for T. Anyway, I couldn't start the treatment so we just postponed it.
       
    8. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi Onceuponatime,
      You have had a lot to deal with and hope now your more settled and iron levels build up your hair will be as beautiful as ever ....stay strong and keep your head held high....lots of love glynis x
       
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    9. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      You've got a good and caring physician. Maybe he was planning to ramp it up after a month, but based on what everyone who has tried it has written, it won't offer any relief at a 50mg dose. On the other hand, maybe your physiology is different.

      Do I have to go to New York to find a doc who will prescribe this for me? :banghead:
       
    10. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      Cheza. If I may suggest: Find a few "young" neurologists in your area that your insurance cover. Make copies of the article that "attheedgeofscience" posted here. Write a letter stating your condition and what kind of treatment you are seeking and ask them if they would consider taking your case. Send it all together. (This so that you don't have to go from doctor to doctor and spending the money) Just be straight forward and honest. You are actually shopping for a doctor. Tell them that doctors in NY are prescribing it!! If all fails come to NY...lol. I'll take you to my doctor. :)
       
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    11. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      My tinnitus is severe enough that I can no longer work, because my job was audio transcription. I have no insurance, and there are no neurologists in my area. Closest one is 200+ miles away. I never thought the tinnitus would be this bad for this long, or I would have sought treatment while I was still working, even though I wasn't covered then either. Unfortunately, I probably would have started with an ENT and wasted my time and $$$.
       
    12. Robb09
      Alienated

      Robb09 Member

      Location:
      Canada
      Tinnitus Since:
      3/2015
      Cause of Tinnitus:
      buzzing shaver/laptop fan whine/pellet gun/music/caff/wax/ eardrum red
      attheedge has soo many posts, what did you use to show the doctor?

       
    13. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
    14. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      Cheza. It hurts my heart terribly to know that there are so many of us suffering from this condition and not one single pill that will relieve it for a few ours. I am sorry about your situation. I can only pray for you. Maybe you can try to get another job?? It may help you focus on something else rather than on T. all day.


      Valerie. The times when I forget about T, and I am myself again, is when I am the most busy. Homeschooling my children has helped me tremendously. I focus on preparing the lessons and materials and then during the day I am so busy teaching the girls that T. gets pushed to the back. It is always there, just not a priority at the time. We do homeschool Co-Op, after school programs and all the fun stuff. Although I did not signed the girls up for any music/instruments classes for obvious reasons. lol. ;) I just keep busy. Here in NY is none stop. We have four seasons and there is always something to do, something to clean, to fix, to decorate, to put away, to take out...... yada yada yada. I also crochet, which helps me tremendously. I do gardening during the summer, I go to church, I read, I cook , I talk on the phone with family and friends, in other words: I just stay busy. Which right now is very tiring because of my low iron levels.

      I also have a couple of air purifiers and fans, dehumidifiers, humidifiers running in the house all year long just to block the hum. I also enjoy camping. It really helps me to forget about T. This summer, we went on a few camping trips and it was great therapy for me. I felt free, liberated. I didn't want to come back home. When I am doing what I enjoy is when T. has to move to the background. Oh how I wish I had more time to go camping and hiking. SIGH

      And yes, there are other times when I just want to stay in bed and not see the world. When I desperately need a break from this noise!!!!! Ultimately, I cope with God's grace to me. (which is His divine help that I don't deserve or have earned). Wishing you good days in Australia. :) We have a good friend from Australia who just came to visit us. Be well Valerie.
       

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