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so.... here I am. hair loss/pain

Discussion in 'The Undiagnosed' started by DonnaL, Jun 4, 2012.

  1. DonnaL

    DonnaL Established Member

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    Sorry to hear you have the sun sensitivity too.

    On the exclamation hairs... I thought they were supposed to be short too. As you can tell, all the hairs I'm shedding are long, about 6-7 inches, which is the length of my hair now... these are substantial hairs that I've had for a long time. I may be wrong, but aren't exclamation point hairs temporary and shed in a few months?
     
  2. DonnaL

    DonnaL Established Member

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    Well, I thought I would post a quick update since I haven't been on here much lately. I can't say I've made much progress as I'm still shedding like crazy and still having pain. I recently purchased a full wig to have on the backburner but I hope I never have to use it. I have made one small victory... I am having more mild pain days than excruciating (level 8-10) days, whereas a month ago I was having almost all level 8-10 days and maybe one moderate/mild pain day per week. I have no idea what caused it but here are things I've done in the last few weeks:

    - I'm completely off Paxil... which has really been testing my personal strength as I just found out my father has stage 4 lung cancer.
    - I'm weening myself off the Neurontin after going up to a 400mg/day dose. I didn't feel like it was helping enough to warrant taking it and noticed no change in the pain level when increasing my dose.
    - I'm eating healthier. I've been researching diet a lot and have been limiting wheat products, simple carbs, sugars, and processed food in favor of nutrient rich veggies, fruits, and meats. I never ate poorly to begin with but I probably ate way more pasta and potatoes than any person should. I've greatly increased the variety of foods I eat and even started eating foods I really don't like that are nutrient dense (such as sweet potatoes & fish).
    - I now only wash my hair every other day as I was having more pain on days I washed my hair. I found that if I wash my head in cold water I don't have the pain issues. Not sure if it's water temp or the pressure of the shower, or both, that upsets my nerves.
    - The supplements I'm currently taking are 1 krill oil/day (note: I read that most fish oil supplements turn rancid in storage and are therefor of little benefit. Krill oil has a longer shelf life), still taking B12 and Biotin (though I don't know that it does any good), and I am taking a high quality probiotic to try to get my gut health back into shape. Sometimes I take vitamin C as well but I try to get that from food instead.

    As I already mentioned I'm still losing a ton of hair, but I hope that will change soon since my pain levels have calmed down a bit. I am praying that this thing has finally run it's course and is on it's way out of my system. Regrowth still appears minor to me. I see tons of short stubby hairs in the front of my hairline. I thought they were baby hairs but my PCP says they look like regrowth to her. I still have a neuro apt in August.

    OH, one thing did show up in my bloodwork, but I don't know if it's relevant at all or what it even means. I had a western blot test to check for Lymes and p41 IgG was present. You need to have 2 or more in that category to be considered as having Lyme though. I plan on bringing it up to my neuro.
     
  3. Sunflower25

    Sunflower25 Guest

    I had a friend who lost a bunch of hair from Lyme. Are there any other tests they can do for that?
     
  4. DonnaL

    DonnaL Established Member

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    Not sure, but I plan on bringing it up when I see the neuro on the 15th. I'm losing so much hair :( The front is looking so bad now. Gonna have to use that wig soon :(
     
  5. wantshair

    wantshair Guest

    Omg! We have similar loss pattern, except my frontal area is much worse than yours. I ave experienced great stress at work and home plus going thro menopause. My last period was in May this year. I shed about 2-300 on wash days. Non wash days, my comb can yield a high number. I am also losing lots of the short new growth. It's easier dead than alive to face daily hair mess.
     
  6. yvette

    yvette Guest

    I assume you have been tested for lupus? some of your symptoms sound lupus-like (which my 23 yo daughter has). Cold sores, memory loss, etc. She had minor hair issues nothing like mine. I have had major thyroid issues since I was 33. Best of luck. I wish mine looked as good as yours now but I understand the frustration!
     

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