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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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    I've been lurking these boards looking for answers for months, and with no progress being made on the doctor/diagnosis end... I finally find myself registering and posting. I'll try to keep the focus on only what I feel are key points, and I apologize for the length. Thanks in advance for listening.

    I'm 30 yrs old and I'm currently dealing with undiagnosed hair loss accompanied with a burning pain on the scalp which came on very suddenly. I've always had fine hair but have always had a lot of it. My mother also has fine hair but is not bald. My grandfather on her side is bald, grandmother on her side had normal hair. Dad's side... all good hair. I do have a history of alcohol abuse and "hair abuse"... I've been coloring and bleaching my hair since I was 12. I haven't had normal sleep patterns in probably 10 years or normal bowel/digestive for just as long. My memory is pretty terrible and I have trouble focussing on things for long. Other than that, I [typically] eat a pretty balanced diet with tons of fruits and veggies and a variety of meats and starches. I'm fairly fit and have never really had any major medical issues aside from depression. The only surgery I've had recently was wisdom teeth about 2 years ago.. I think it was June 2010.

    Admittedly I've been a little obsessed over my hair loss, and I've gone to such lengths as logging my loss and major events in my life in the last couple years in a desperate hope to find a source. I don't know if it will help at all but it at least gives a time reference. So here goes...

    August 2010: Someone I loved very much was diagnosed with a terminal illness. it wasn't my child, but i compare the loss as such as i was his primary care giver and it affected me much the same. Over the next 4 months I grieved constantly over the inevitable. Going from appointment to appointment and finding no hope. My husband had just started a new job and had no time off, so I had to pretty much go through everything alone... getting the bad news alone.... going to all the doctor's appointments alone... getting up in the middle of the night constantly to help him (he couldn't walk well) so my husband could sleep... It was very hard on me and certainly my body was under a lot of stress emotionally and physically. After the initial diagnosis I was so distraught I was overcome with sickness and couldn't eat without feeling nauseous. I didn't eat for 4 days and pretty much did nothing but drink to numb the pain. I cried every day hysterically.... was hardly sleeping... drinking far too much....

    December 26th 2010: My loved one passed away. I was hit again with the nauseating sickness and didn't eat for another 3 or 4 days, only drinking my sorrows away. Still not sleeping well and still crying hysterically constantly.

    Somewhere around this time I did notice a lot of hair shedding but it wasn't noticeable on my scalp and quite frankly I was too consumed with my grief to care.

    Jan 2011: I noticed my hair looked thin and flat in a photo from a friend's birthday.

    March 2011: Hit with another devastating emotional blow. Still grieving daily over the loss of my loved one.

    May 2011: Was in a wedding and noticed for the first time that when my hair was styled, lines of my scalp showed through.

    End of May: Got a puppy and she brightened my spirits. Things felt ok finally after months of torment. It's amazing what the love of a dog can do for your soul...

    End of June 2011: Puppy is very sick. I'm scared to death that I will lose her. It takes a good 2 months until she is finally stabilized. I'm a wreck.

    July/August 2011: Husband's truck is stolen in our neighborhood. We lived in a bad part of town and I was scared because they had his keys and knew where we lived. I'm scared.. stressed. Hardly sleeping at night again and can't sit still at work for fear that something is going on at my home.

    We start house shopping.

    Nov. 2011 through mid Dec 2011: We close on our first home. Stress level calms down as I feel like there's a light at the end of the tunnel finally. There's lots of work to be done and we spend the next 30 days working on the house day in and day out. I also have my hands tied with my small business and I'm working essentially 2 jobs in addition to working on the house.

    Jan 2012: My husband is involved in an explosion at work. He's physically unharmed but it shakes us both up as we recognize the dangers of his job.

    Feb 2012: I finally feel like my hair loss isn't improving and it's time to seek the help of a doctor.

    March 2012: PCP orders blood work. B12 and Folic Acid are on the low side of normal. She has me start B12 and Biotin supplements... in addition I start taking a multivitamin (prenatal for hair), fish oil, and start using Nizoral 1% shampoo on my hair because I hear it helped with hair loss. Doctor starts me on Paxil 10mg for my anxiety and depression. I start takign my health into consideration and try increasing my water intake and decreasing my alcohol intake...
    This was also the last time I colored my hair to date (which I've been doing since age 12)
    Doctor recommends I schedule with a dermatologist to get a 2nd opinion on my hair issue. She doesn't really seem to care about it and is more concerned about my alcohol consumption.

    *side note* Sometime in early March I had a horrendous UTI for about 2 or 3 weeks. Took 10 days of antibiotics but it was pretty resistant to go away.

    Mid April 2012: Scalp pain flares up. It feels almost like sunburn on my scalp and I feel it only along the center of my head, from front to back (not down the back of my head though). The next day my hair starts shedding like CRAZY. I don't even have to touch it and it falls out. I keep thinking it's going to stop and it just doesn't.

    May 2012: Almost 2 weeks later I finally call my doctor and she is finally concerned because of the pain aspect. She thinks it could be shingles because I described it as burning and wants to see me asap... but once she sees me she doesn't see anything to indicate shingles. She starts me on neurontin 100mg for the pain, which she thinks is neurological. I stop using the Nizoral but the shedding continues to be bad. I'm losing around 35 hairs during my morning hair routine alone, just brushing and blowdrying (and who knows how many on the floor that I didn't get to count).

    I am now currently taking the Neurontin for the pain 2x/day (which starts helping about a week into it), fish oil 3x/day, B12 & Biotin, a probiotic, and Paxil.
    The pain for the most part is reduced to a mild annoyance that I can feel, but I can deal with. Some days I still have flare ups and on those days my shedding is worse. On days when my pain is mild or non-existent, my shedding is down to a normal level.

    Late May 2012: I finally see the dermatologist... 2 of them in fact... both worthless. On that particular day I wasn't having any scalp pain. Derm wasn't really getting any hairs during the pulls test and had no idea what to think about the pain I was experiencing. When I asked about a biopsy, he said it probably wouldn't reveal anything helpful because he saw nothing wrong with my scalp aside from a mild pinkness. His suggestion? Rogaine! I said, verbatim.... "You want me to put a CHEMICAL on my BURNING scalp? Are you serious????" His response... "well, it does work." I just shook my head at him and sat quiet while the nurse scheduled me for a follow up.

    At this point I was basically living in ponytails because covering up the baldness around my part was getting to be too much work. On some days my hair hurt in the ponytail because of the weight and the pull (even though they were loose). I finally resolved to cut my hair into a short bob, thinking maybe I would shed less hair... didn't really work out that way, but at least it's easier to manage.



    So that's where I am. I have an appointment with a neuro in August... couldn't get in any sooner unfortunately. I don't have much hope in ever getting answers. For the most part, my hair shed has been on the normal side, but I don't really see any positive changes in the overall look of my hair. I think my hair loss has been throughout my scalp, but it looks most noticeable at the part for obvious reasons. I can move my part left or right and it looks the same. I have slightly more hair loss down the center of my scalp which is where the burning is.
    For the most part the pain is kept at bay to a minor annoyance. On occasion I get a bad day where it flares up. I have tried to find a trigger by keeping a log but I gave up after several months showed no connections.

    Some other things that may be noteworthy....

    - I have been on Yasmin for years. Then on Yaz, and now on the generic form of Yaz (gianvi). I have been meaning to find out what month I started the generic because I can't remember and wonder if it has anything to do with this, though I doubt it. I plan on bringing up my issues with my OBGYN when I see him in a month or 2.

    - Cold sores. I started getting them about 10 years ago but only got 1 about every 2 years or so (usually after bad stress). In the last 2 years however, I have been getting them every few months. This was a sign to me that something was not right within my body... stress, immune system, or other... something is clearly wrong.

    OK.. that was very long and I'm so sorry, but I feel like a thorough explanation is important in perhaps finding an answer??? Maybe not. My doctor seems to think it's something neurological. My Thyroid has tested fine and on my last blood work (1 week ago) my B and folic acid levels were back up to where they should be.

    Here are some photos of my hair as it currently is. I had to lighten some of them because it was hard to see. It is very damp and muggy out today so my hair looks especially bad and frizzy. It doesn't look so bad from the front. It's the top and rear views that are upsetting. I haven't colored my hair since March, so you'll notice some weird tones as my hair is naturally brown and I colored it black. I have about 1.5 inches of roots.

    This is a week or so ago. It doesn't look so bad but if light/sun shines through you can see my scalp.
    [​IMG]

    This is today.

    My part
    [​IMG]
    [​IMG]

    My sides. As you can kinda see, My thinness seems to be all over the head. I should note that I never had super dense hair. As I mentioned, it was always pretty fine, so if you pulled my sides back with a barrettes you would still see some scalp.

    [​IMG]
    [​IMG]
    [​IMG]

    I have tons of short hair all over. I call the stuff towards my part my mohawk because it's like a group of hair and when the wind blows I can feel it going this way and that. All the hair that is shedding has been "bulby" hair, not breakage, so this is all new growth I guess. Of the hair shed, I shed long and short hair- even some newly grown short hairs that are only an inch or 2. I'm not sure if this is normal, or less than normal or what. In my heart I am hoping this is a good sign, but I really haven't seen any visual improvement, so I'm cautiously optimistic on some days... cautiously pessimistic on others :/

    [​IMG]

    You can kinda see all the shorties here on the side of my head where my hair is flopped over:
    [​IMG]
    [​IMG]

    Mirror shots:
    [​IMG]
    [​IMG]
    [​IMG]

    Anyways... I originally thought that the stress I was going through for such an extended period caused a bout of TE, but then the pain started and now I don't know what to think. I've been dealing with the pain for nearly 2 months now and there have been days where I have been downright suicidal over the pain and the hairloss. It has crippled me and I feel like I'm getting nowhere with my doctors. I just don't know what do to :shakehead:
     
  2. Sunflower25

    Sunflower25 Guest

    I understand the pain. The pain I had when I lost the hair was horrendous. I was in tears sometimes when the wind would blow. It was like a constant sunburn on my scalp. It only stopped when the hair started growing back in. As far as I can tell, some people get the burning and some do not. :-/
     
  3. DonnaL

    DonnaL Established Member

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    I don't understand.. pain seems common enough, or at least common enough that when I research it I can find other sufferers. Why didn't my dermatologist think there was a correlation? He gave me a handout on hairloss and basically said "read this" (like I hadn't already read everything on hairloss 20x over before my appointment).

    Was your pain on the top of your scalp or just at the site of your hairloss?
     
  4. Sunflower25

    Sunflower25 Guest

    My derm thought that the pain may have been a fungus or something (if I remember correctly). He didn't understand why my head hurt either.

    I also got a pamphlet. I'm pretty sure I just left it there.
     
  5. mythreeboys

    mythreeboys Guest

    ..............
     
  6. DonnaL

    DonnaL Established Member

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    Wow... 6 years......

    .......

    I seriously have tears in my eyes. I cannot fathom dealing with this pain for YEARS. I cannot even wrap my brain around living day to day with this pain for that kid of length of time. I too have been laid up on the couch with an ice pack on my head desperately seeking relief. I am thankful that the neurontin at least provides me with more good days than bad. Were you on any meds for nerves? I'll have to check your older posts since it sounds like you've been where I am. My PCP basically said if the nerves in your scalp are causing all kinds of chaos, it creates a bad environment for everything, including your hair. So I've been focussing on trying to get this pain to END, thinking that if I can just get the pain to stop just maybe my hair will grow back??
    She doesn't think it's Hoshimotos (I've asked). She doesn't think it's any kind of thyroid issue in fact. I found a couple cases online where the individual had the burning pain and hair loss and eventually were diagnosed with Lyme's Disease, of all things. I do live in an area where Lymes runs rampant. She doesn't think it's that either but I have blood orders to get tested for it if I want. I guess I'm just trying to rule things out. If I spend enough time online I could probably come up with a laundry list of things to test for and it probably wouldn't get me anywhere. I try like heck to not spend too much time researching because even on a good feeling scalp day, I'll stress myself out and get sore (doing right now, bah!).

    The thing with auto immune problems is it seems so many of them have the same symptoms (tiredness, memory loss, pain, IBS, etc) and I have all that. I understand that if blood work doesn't point to any obvious problem that doctors have little to go by. But it also seems so bizarre to me that so many people just "accept" this pain. It is not normal to be in pain and something must cause it. I am convinced that all of us who have pain must have some underlying reason. Maybe I'm just still in denial, but I am convinced there is a needle in this haystack, so to speak.

    As for my eyebrows, they've never been bushy or dense. Both my mom and I have less than perfect brows... we also pluck (but not so much the ends). I actually went through a phase where I was obsessed with perfect eyebrow shape and seriously overplucked them to the point where i HAD to draw them in or they looked terrible. Thank god I got over that. They grew back completely to how they've always been.
     
  7. Vlal

    Vlal Guest

    Ladies - Have either of you tried Alpha Lipoic Acid? I ask because some studies have shown it may be useful in controlling nerve pain. I have been using it for some time due to Trigeminal Neuralgia and have found it helpful. Previously I was totally reliant on Tegretol (Carbamazepine), which is a nightmare due to the side effects.
     
  8. Sunflower25

    Sunflower25 Guest

    I wasn't given anything for the pain, I really don't think he thought it was real.

    I think it was a little better when I switched over to baby shampoo. Maybe give that a try? I don't have the pain now with the spots. Almost wish I did though, would at least be a warning!
     
  9. DonnaL

    DonnaL Established Member

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    Thank you for the suggestion Vlal- I've never heard of Alpha Lipoic Acid, but I will look into it.

    Sunflower- I tried baby shampoo for 3 weeks or so as directed by my doctor... no changes other than the texture of my hair felt gross. I went back to using my regular shampoo (Dove) and there's no change. I also did Nizoral for a while but have stopped because the burning started while using it.

    mythreeboys- I'm glad you've been able to find the strength to deal with this and continue a pretty normal life. There are days when I come home from work, cry my eyes out, and then lay on the couch the the rest of the day because the burning is so bad. The neurontin has definitely helped but I still have some bad days. I don't think the doctors understand how crippling this is.
     
  10. Sunflower25

    Sunflower25 Guest

    My fiance uses Nizoral, he hasn't had any luck with it either. (He's thinning like his dad! haha)
     
  11. I have the same pain, did I biopsy and they say I have Telogen Effluvium but that the hair loss in the sample started after the pain onset. My hair was thick and great then I wanted it longer and tried hair extensions. They were applied improperly, my hair was also over processed, and I lost a lot of hair after removal. There was some burning pain then too. Then that went away. That was February. Then in May I let a hairdresser talk me into a low peroxide toner and it burned on contact. Then a few hours later my whole scalp started burning and it has been burning or pins, or itching since. I have seen hair fall too. Tragic after having already lost half my hair due to extensions, just when I thought it was growing back. I think you might have Telogen Effluvium too, which would explain the shedding and baby hairs. I am not sure if the nerve pain caused the shedding or if the shedding caused the nerve pain. I tried Neurontin for a few days and it helped a little but then I got leg pain?! So I stopped. I will try another drug like this. I would not suggest the biopsy because you know you are shedding and for me the biopsy was so painful! I ended up in the emergency room from pain. I am over one month into this and also have no desire to be going through this for years. It's ruining everything and I am uninsured. My Stanford doctor says hair loss doesn't come with pain... but an LA doctor said TE does come with pain... confusing.
     
  12. DonnaL

    DonnaL Established Member

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    I'm sorry you're having pain too. My doctor didn't feel the biopsy was necessary. I should mention that neuropathy usually presents itself with pain in the arms and legs (my dad has it in the legs from metal exposure from work), so it may not have been the neurontin. It took a good week or so for it to kick in for me and I'm on a low dose (100mg) twice per day. I may have to increase the dose though because I am still having some pretty painful days. I'm convinced there must be a trigger- why would I feel ok some days and be in horrible pain on others?). So I'm just desperately trying to find the trigger that causes these flares. I've been coloring and bleaching my hair for years but never had extensions or any other hair processing. My last haircoloring was in March and the pain started mid-April, so I'm not sure that it has anything to do with it, but it may.
     
  13. I was ferociously googling PPD allergies (to hair dye) before I got here to nerve pain. Have you ever had a burning sensation on your scalp when you dye your hair? I would stop coloring your hair if you have not already as if anything it stimulates the nerves. There are many allergenic chemicals in hair dye, for which you can be patch tested. Allergies can appear they say up to two weeks after contact. However earlier this year my burning started about a month after I had dyed my hair. Now, in May, immediately.

    I have bulging discs in my lower back and sometimes sciatica, but not very often (years). The leg pain has faded away since stopping the neurontin... likely not a co-incidence.

    I think some of this may involve substance P. I have an appointment with a derm today. Will share my findings. I am 33 years old btw. My scalp has been burning signifigantly 1 month.

    It is also better some days than others for me. I think this is because the nervous system is linked to our emotional stress as well. So any increase in stress mentally can make the problem worse. But that doesn't mean that mental stress causes it. Which is where, I think many doctors go astray. So, try to keep yourself calm and optimistic?
     
  14. I should add I am determined to not become one of those people who suffer for years. We can stick together through this. I intend to do research and find a solution whist decreasing my stress. (If that is possible.)

    Biopsy can be important if you are at risk for other kinds of hairloss which may be important to treat early. I don't know if my biopsy will prove useful, but at least I am sure that I have TE. I am submitting it to USCF for another look.

    And my theory is that what we have is overstimulated nerve endings- perhaps yours were overstimulated due to stress, mine due to physical and emotional stress. My Stanford doctor says that nerves have trouble calming down when over stimulated and need help to be reset...with drugs.
     
  15. mythreeboys
    "I experience incredible fatique, exhaustion, joint pain amoung other things." You also describe a flu feeling... have you been tested for Lyme disease? I read some people have that disease and hairloss, and that is supposed to come with a flu-like feeling which is why I ruled myself out early on... although I have been fatigued...no really like the flu.

    I might get tested for it just to be totally sure.

    I am sorry about what you have had to go through and feel your pain. I recently had a doctor I came to see once to get a biopsy say that I might need psychiatric help because I was a little, I think now, too full of questions and information... obsessed. Like you were in the beginning. I tried to explain: I am in pain. That I am not myself of course but trying to fix this pain and heal. I am beginning to resign myself to the fact that I won't feel better soon. I certainly hope it is soon, but I am less anxious to know tomorrow and settling into this reality. I feel sad because I made choices along this path which led me here. The day I had my hair dyed I didn't want to dye my hair and told the colorist so, that I just wanted to dye my clip in hair, but then I allowed her to talk me into dying it. I often ask myself what my life would be like if I had stuck to my guns. But I can't go back. This is my reality. In your situation you were stressed... a very innocent thing. I am sorry about your hair loss. But as I am beginning to learn... just because we have less hair doesn't mean we are less beautiful. Our beauty actually grows as we become stronger women who can endure anything, as we become more beautiful within.
     
  16. DonnaL "I don't think the doctors understand how crippling this is."

    No, they definitely don't. I feel like I have to spend half my time convincing doctors to take this pain seriously.

    It's interesting that there is mention that the nerves themselves cause the hairloss. I think in my case the pain preceded the loss.
     
  17. 3boys

    3boys Guest

    I don't have an answer just wanted to add that I have had this pain throughout this whole experience. First, about two months into it my scalp would burn in different places mainly on the top and nape - for about a month or two, stop and start after another month. It disappeared for most of the spring but last week I've felt just slight 'sensations' not like the burning.

    I also saw a neurologist who did nerve tests and an MRI during the bad burning and.. nothing. He also prescribed Neurontin but after a bad experience with Topamax and Klonopin, I was anti drugs at that time.

    My dermotologist who went through all of this same stuff we are going through said that her scalp was burning through the worst of the TE and minoxidil helped the pain go away some.

    My opinion is that during a TE the nerve endings do fire up somehow and 'overload' causing this sensation. I wish there was a way to make it go away as I remember how horrible it is.

    I remember that Scalpcacin (sp?) helped a lot (for a bit) on the worst areas..

    Good luck - hopefully an answer will be found and a cure!
     
  18. DonnaL

    DonnaL Established Member

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    Drat.. so your neurologist had no leads for you? I feel like the neuro is my last hope because my doctor and derm are dumbfounded. My appointment isn't until August... if I wait all this time and end up empty handed, I think i'll just be shattered :(
    I don't know if I have TE or something else. I don't understand how a biopsy can tell you what kind of hairloss it is, but my derm didn't want to do it regardless. I'm pretty sure it's not typical Androgenetic Alopecia (or at least didn't start this way) because the hair loss has been sudden, diffuse, and rapid and came immediately after the pain began. Right now my hair shed is down a bit thankfully... but I'm really not concerned about what sheds, just what grows back. I can see lots of new spiky hairs all over my head, but so far no fill in and I'm pretty sure all of us regardless of hair loss type have some kind of re-growth on our heads, so it's nothing I'm getting excited over.
    I've been trying to stay calm about it and not stress, but on the days the pain is bad I fall to pieces. I just want to get to the bottom of this. I don't think it's all entirely stress related because the period of major stress for me has been over for a little while.. things should have started to improve by now, not get worse. I do suspect that my prolonged period of distress sent something in my body completely out of whack... it's just a matter of finding out what.

    It's a little discouraging to hear that your derm went through this and found no solution. DId it end for them eventually?
     

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