Hair loss w/ TN? Shot in the dark question, had to ask

General General TN & GPN (Old Site)
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Hi Everyone,

I've been an on again off again member for a while - I spent a number of years active on here when the board was still young, I was going through neurosurgery after neurosurgery, and all of the short-term and long-term disability stuff....anyway, through all of that neurosurgery, my head got shaved in different spots over and over and over again, and, finally, since late 2011/2012, I was able to grow my hair out to my shoulders, it was like freedom, to have hair again, and then.......

Around last August, it started falling out - coming out in my hands in the shower, raining down around the sink as I got ready over it, just coming out everywhere, and, there is no new hair growing in to replace it. About half of my hair is gone. It is so thin. As a woman this is terrible. My TN is is the upper 2 quadrants, so I cannot wear hats or head coverings because the TN runs up into my scalp and over to my ear.

My initial diagnosis was Telogen Effluvium, where hair suddenly cycles through one stage of the hair growing phase all at once, but that can't be the case now, because new hair is not coming in,

They have ruled out hormonal causes. I am in touch right now with my PharmD doc that was overseeing my titration down off of methadone, she is checking to see if a medication is doing it.

I am taking all of the vitamins that are recommended for hair, including biotin.

HAS ANYBODY EXPERIENCED THIS IN RELATION TO TN?

I am truly desperate for answers, without stressing, because I know that stress will only exacerbate it.

Thanks so much,

Lily

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Hi Lily,
I’m so sorry to read of your recent hair loss, although I haven’t heard of hair loss associated with TN, I had a good friend who developed Alopecia years ago.
Alopecia can be caused by many factors, meds, hormones etc and there are different types.
My cousins husband experiences it on and off.
I would look into and research Alopecia.
I hope this helps, or at least directs you to alternatives …
Best of luck to you, (( hugs )) Mimi

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I have not heard of this with TN, but have you had your thyroid checked? I have hypothyroidism and my hair falls out really bad when I need an increase in medication. Thank goodness I have done well on my current dose for quite a while now, but sometimes my levels will yo-yo and I will have to go down, up, down, up on my meds.

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Thanks Mimi, thanks Donna, good things to consider...I'm right in the middle with my thyroid levels. My HMO had changed everyone's thyroid medication mfgr shortly before it started happening, so I pushed my (resistant) doctor to change me from generic to non-generic because I didn't trust it. It did help a little bit, for which I am thankful, but it just slowed it.

I am very afraid of the idea of alopecia. Oh gosh you guys, it is just so hard emotionally, to have gone through all of those years of cranial surgeries, from 2007-2011, with various versions of short-short or shaved head, and then FINALLY when I get it grown to my shoulders, it was a real milestone for me, it just started falling.......I just want to bawl my eyes out, but then I keep telling myself, it's just hair, it's just hair, it could be so much worse........I vacillate between those two emotions....

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Lily, that’s completely understandable, it’s only hair, BUT if you’re anything like me, hair looks good, we feel better, that being said, keeping your stress under control is the main thing, and although its hard, you do have control over that. So try real hard sweetie, even if it is a form of alopecia, your hair can still grow back!!
Our bodies go through so much with these meds and procedures, maybe your body is just getting ready to come back better!
Positive thoughts my friend, don’t get discouraged.
One of my friends sells NuSkin products and they have a handheld device that you can use on your head to initiate regrowth, it works, it’s also very popular for keeping the face wrinkles away, but with our TN and triggers could be a problem on our faces.
Huge ((( hugs ))) and keep me posted, thinking of you… Xx

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Hi Lily,

Since taking all the different meds to treat symptoms of pain and numbness, my hair has NEVER been the same. It falls out, is thinner than it has ever been, and is not healthy looking. I would like to share with you a piece of good news - I found a product that I love. It is by Aveda and is called "invati". I use the entire line; shampoo, conditioner, and scalp treatment.

Let me know how you like it and hope it works for you, too.

Christine

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Bless you. Hope you get some answers soon. ((((big hugs))))

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Hair loss is not fun at all, and I would and do feel the same. I know that some of the medications for TN cause hair loss as a side affect. My hair has been coming out by the handfuls more and more. Hair loss can also be symptom of autoimmune diseases. For me the later is concerning as my family has a really strong history of autoimmune disease. I have not a clue as how to stop hair loss or promote new hair growth. Sorry I don’t really have any advice for you in this, just wanted to let you know I’m going through something similar.

On a positive note it is really great to see all the s
upportive comments and advice that all you gals have given Lily:)

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Sorry you are experiencing hair loss, I am currently experiencing the same thing myself although yours sounds more severe.
The only other time in my life I experienced similar hair loss was when I was very anemic which is not the case this time so getting the doctor to check iron levels might be worth a shot.

My GP has referred me to a dermatologist but my appointment is not till April so until then I am trying not to look at myself in the mirror. Sorry to be no help but sending you a hug.

Trish

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Your kind words brought me tears, I know that that sounds bad, but it's not, I think we all need the sympathy with this, it's so different for women, and my friends are saying, "As if you haven't gone through ENOUGH!", and that's when I minimize and say it's just hair, but it really does go deeper, and I need to validate that.

I got word back from my PharmD, she said that topomax has a 3% chance of hair loss in concentrations of 50mg or more when given for seizures. I took that to mean that of every hundred people who take it, 3 of them experienced hair loss from it, and I am taking 125mg a day currently. So I've made the decision to titrate off of topomax, which is unfortunate because it has been a big help for me.

Christine, Kari, Trish, I am so sorry that you all are going through this too - a friend of mine started taking biotin (a vitamin) after her hair started falling out post pregnancy and swore by it - in addition, vitamins D, E, Zinc, C, and, Trish, right, iron, are all supposed to support healthy hair, skin and nails. I've gone out and added all of those to my regimen, what's there to lose?

Christine, I have allergies to all kinds of synthetic perfumes - right now I use an organic line - I have to shy away from anything that just says "fragrance" or "perfume" in the ingredients - I'll take a look and see what their label says. I have seen the ads and it is based on ayurvedic (sp?) principles if I'm not mistaken (?) so maybe it is safe.

Kari, yes, the autoimmune idea came to mind and concerned me too, I hope that it is not the case for you, I feel for you, I so know how you feel to have it come out in your hands like that.

I see the dermatologist tomorrow, I am scared for a diagnosis.

many big hugs for all your genuinity and kindness friends,

Lily

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HI Lily
Just got home from the neurologist today as my hair was coming out in handfuls. They got me in within 24 hours of calling!
I just start carabamaze on December 15 when I diagnosed. He said hair falling out is definitely a side effect from meds and your body can't not tolerate what ever drug you are on. He switch me to something new to day.
Stop in at the health food store and I am going to start taking Florasil (has Silica and trace minerals in it)
The lady there said silica is very good for hair and nail growth. Just thought I would pass that on.
J
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Dear Honeybumps,'I'm so sorry to hear that you recently received this diagnosis, good for you for getting here. Thank you for the advice advice on silica - I had not heard that one. Carbamazepine is a hard drug to tolerate for many, I couldn't, but I do take oxcarbazepine. The pharmacist did not tell me that oxcarbazepine had hair loss side effects so I think I'm safe there.

I am really glad that they took that seriously and treated you quickly. So, if you don't mind me asking, did you decide to take any other prescription medications? Or are you staying strictly homeopathic for the time being?

Take care and please check back in and let us know whether your hair stops falling out - good for your neurologist!

Lily

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I saw the dermatologist yesterday, she did a very thorough workup, and we have a biopsy scheduled for next week. She mentioned chronic telogen effluvium, and, this part is so upsetting, she sees no new hair growing in. So something has stopped my hair from growing dead in it's tracks, and is causing the rest of it to fall out. I REALLY hope that she gets how serious that is - she doesn't think that it will lead to baldness, but, tell me, what do you think - if NO hair is coming in, and the hair on your head continues to rain out, what is the reasonable conclusion?

So she is doing a HAIR SPECIFIC medication workup and will get ahold of me with the results of that. I really hope that this is helpful to others who are experiencing medication related hair issues - I seriously thought that this post would sink like a lead anchor with 0 responses, so this discussion has been a surprising one, and one that I've really appreciated.

hugs to all,

Lily