Replies to This Discussion

Permalink Reply by Julie Koch on March 24, 2011 at 5:14pm

I have had seb derm for about a year. It is a non-stop battle for me. I think I got it when I was too scared to wash my hair because of the hair loss. I barely touched my head when the first started to lose hair so I was never cleaning my scalp. I have burning scalp syndrome as well and the pain is very bad. I am getting injections in my head on April 12th to numb the nerves and hopefully lessen the pain.

As for the seb derm... I have tried everything. I was prescribed the prescription strength Ketoconazole 2% but couldn't used it because of my sensitive scalp. I now use the drugstore version called Nizoral. I have used everything else out there, Head And Shoulders, Selsun Blue, T/Sal, T/Gel, coal tar, etc... I find that it is getting a little better now because summer is coming but it is still a pain. I don't know that I lost hair from the seb derm. They say that seb derm doesn't cause hair loss unless you scratch and pick. I think it CAN cause hair loss but I believe it will grow back when the scalp is healthier.

I use the Nizoral 1% and leave it on for a minute or two and rinse well. I use it every 3-4 days. In between I use Tresemme Biotin shampoo and conditioner. I think that if you can handle the prescription strength, it is good. I may try it again. My scalp sensitivity isn't from the shampoos, it's just an auto immune disorder. The shampoo won't hurt you and in fact, the Ketoconazole is a hair growth promoter similar to Minodoxil or Rogaine. Good luck!

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Permalink Reply by D. Brown on March 26, 2011 at 11:28am

Thank you so much for responding. My SD was also brought on after an extended time of me not washing my hair (I was super depressed for a time) and didn’t bother with anything or anybody. I didn’t see sunlight for weeks. After that bout I noticed the SD.

I have intense hair loss from SD led on by scratching. This frightens me because I do not know if it will grow back in that case. The weird thing though, I didn’t even scratch hard. I was just trying to gently remove the scales with my fingernails and the hair just went along with it. As of now, I am washing my hair once a week with a tea tree and neem shampoo bar (I’ll do it every other day once I find a nice place to get my hair cut into a bald fade). Every other day or so though, until my next wash, I massage my scalp with a mixture of essential oils and herbs… this mixture also has sulfur (I think this really helps out with the dandruff) and inositol in it.

I have extremely sensitive skin so I can’t use things like Nizoral or steroids. I am looking into other alternatives though. I will be discussing oral therapy (mineral treatments) and ciclopirox shampoo with my doctor.

Once again thanks for responding! If you’re interested I can send you some alternative information, straight from scientific literature on SD.

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Permalink Reply by Julie Koch on March 26, 2011 at 3:56pm

I was hoping that more people would have responded so that we could get some more ideas on how to control this SD. I would love it if you could share with me some or your alternative treatments...

In the beginning of my SD, I too scratched a lot but stopped out of fear of more hair loss. I still touch my head at times but never with my nails. I keep my nails really short now to avoid any mistakes of scratching. I do pick at times when I feel a thick scale but I always regret picking wondering what kind of damage I did. So, I am pretty trained not to touch my scalp.

I was diagnosed with OCD and PTSD as a result of the hair loss. I do have a tendency to always check my hair and gently comb through to see how much hair is coming out. I do this maybe every half hour and more often when my head is really hurting. I have sensitive skin as well but the Burning Scalp Syndrome is why it is so sensitive. I don't have any skin reactions to chemicals, just a constant severe burning pain. I am getting an Occipital Nerve Block on April 12th to help with the pain. This will numb the nerves for a while till the next series of injections.

My hair loss has lessened quite a bit but it's about 50% of what it used to be. I am so obsessed about my hair now that I am thinking of shaving it just to feel free from the compulsion that surrounds my hair and the OCD. I just want to feel FREE and not worry about it daily. I can't comb it or do anything with it right now because of the pain so why be preoccupied with it when it would be so FREEING to just have it gone. It's something I am thinking about doing just for my mental state. I don't care what anyone else thinks anymore. It's about me and having a sense of control and freedom.

I have tried the Cilopirox Shampoo (LOPROX) and it is very gentle. It is pretty comparable to the Nizoral and I have both of them but use the Nizoral more because of it's ability to start new hair growth.

I have tried using Coconut oil and Olive oil massages but became scared of them clogging my follicles so I stopped.

I would love to hear more about your success with alternative treatments! You can message me if you would like or just comment on this blog. Thanks and I hope you are OK!!!

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Permalink Reply by D. Brown on March 26, 2011 at 6:12pm

Since I am in the beginning stages of this I am trying to find what works for me as quickly as possible. Since I already know I am very sensitive to harsh chemicals and drugs… I know that steroids and Nizoral are not viable options for me. In the scientific literature that I have read thus far, some of the treatments mentioned were mineral therapy and calcineurin inhibitors. The literature indicates that these treatments are not only effective but also safe for long-term use unlike steroids for instance.

Also, I have read that leaving rosemary oil, neem, and or tea tree oil on your scalp for up to an hour and then washing your hair as usual can have good results as well. Rosemary oil in particular is a known hair growth stimulant; I will stay away from Rosemary though because it can cause seizures and I have a history of epilepsy. Each of the three oils has anti-inflammatory, anti-bacterial, and anti-fungal properties. They all help with itching, scaling and dandruff. The oil that I use does not contain olive or coconut oil. Those oils clog my pores.

Oh and I’m not nearly as depressed like I was. I am doing much better. Thanks for asking ☺. I’m trying not to slip into that again but this is making it awfully hard. Right now I am in the process of finding a barber I am comfortable with. I think getting a bald fade would disguise the balding I’ve had until my hair grows back… if it ever does.

Let me know how your injections go. I think we should keep this blog going. We can’t be the only ones with SD. I’m sure of it.



Some sources to read: http://cat.inist.fr/?aModele=afficheN&cpsidt=13528434
http://www.ingentaconnect.com/content/adis/derm/2009/00000010/00000...

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Permalink Reply by Julie Koch on April 14, 2011 at 9:31pm

How is your seb derm treatment going? Mine seems to be getting slightly worse at least with the flaking and itching. I was just hoping you could share if you found something either prescription or alternative treatments that may have been helping you! I am so desperate to find a way to get this under control since I guess it can't be "cured". Please let me know how you are! I think we're the only ones on this subject!!! :)

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Permalink Reply by D. Brown on April 15, 2011 at 12:16am

I’m still in the process of trying to find a barber that can cut my hair into a bald fade. Once I do that I will be washing my scalp every day or every other day. I think that more frequent washing will help me out tremendously. I noticed that the flaking, scales and itching starts around the time I need to wash my hair. Around the third or fourth day, for me, that’s when I notice all these symptoms so I figure that more frequent washing will keep my SD at bay.

I still have to go to the doctor and get a referral to see a derm so they can run tests and tell me if this balding is permanent or not. I guess I have been putting that off in fear of what I might be told.

Have you given more consideration into cutting your hair into a buzz cut and washing more frequently? For one, your medicated shampoo will be able to penetrate the scalp more since it will exposed and you won’t have to worry about clumps of hair falling out with every wash or hair manipulation.

How did your injection go by the way? I hope that went well and helped with the scalp pain.

I have really been researching literature for alternative and medical treatments and haven’t found much more yet unfortunately. Having said that though, I really think you should think about using a gentle tea tree oil shampoo in between your medicated shampoo sessions. I believe tea tree oil has helped me out a lot. Also, ask your doc about calcineurin inhibitors like Protopic and Elidel. They are antifungal like (Loprox) but they are also anti-inflammatory and that can help out with flaking and itching as well. It’s probably time for you to introduce more treatments since it seems the benefits are wearing off from the Loprox shampoo. From what I have been reading, rotation of treatments is essential.

I know it seems like we are the only two people with SD on this site but I recall another gentleman having this and having to cut all his hair off. I wonder what happened to him?

Anyway, we will just help each other out in this struggle.

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Permalink Reply by D. Brown on April 15, 2011 at 4:12pm

So.... I am going to the doc on the 25th and he will give me a referral to a derm. I hope that will be no more than a week after our appt.

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Permalink Reply by Julie Koch on May 9, 2011 at 6:12pm

Hey there... Sorry I haven't replied sooner...

My seb derm got pretty bad. It got to the point where I would want to throw up when I felt the scales. I have always been a perfectionist especially about my appearance and I was disgusted with myself. I have been using the Nizoral 1-2 times a week but it doesn't help much. I was given some Extina Foam which is a Ketoconazole foam that is easy to apply on the bad areas. It seems to work better than the shampoo. I am also going to be starting Accutane to decrease my oil production. I have been on Accutane 2 times in my teens when I had bad acne. It has been good until I got the seb derm. I am hoping it will help slow the oil production in my scalp and decrease the seb derm. I read several posts that it has helped others.

How are you doing? How did your appointment go?

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Permalink Reply by D. Brown on June 5, 2011 at 2:56pm

I must have missed my e-mail notification…

Well, I went to the doctor and have been officially diagnosed with SD. I knew I had this all along. He wanted to give me steroids but I declined and so he wrote me a blank referral to a derm. The sad part though, the dermatologist that I want is booked for the entire month of June and the July schedule is not out yet supposedly. So until I get a prescription for Ciclopirox I have been washing my hair with the same tea tree bar. Just last week I decided to try T/Sal and it has definitely cleared the scalp build up. My scalp has not been this clear for months. It has not cleared completely but the build up that did come back is less severe. I suspect that I will get better results when I cut my hair. That way I will be able to wash more often. New Symptom: I have lost all pigmentation (I have brown skin) along my hairline and a little along my forehead where I have hair. Hypopigmentation is normal and should return over time. Up to a year from what I have been reading. Apparently, the inflammation and yeast inhibit melanin production. That sucks though… having a new symptom. I still have not gotten my haircut. My hair does seem to be growing back slowly. My doctor doesn’t think the hair loss was permanent. At this point, I’m more annoyed by the SD rash behind and in my ears. I have a tiny rash along the front portion of my ear that isn’t really visible but it is rough and I can feel it. I’m a little down by all of this but there’s literally nothing I can do but continue to be proactive and hope that I find a routine that, at the very least, keeps this ailment in remission with little to no flare ups.

How are you doing? Have your symptoms improved? Did you get your course of accutane yet? Just hang in there. This ailment sure does take a chunk out of your esteem but we have to find some way to cope. I either talk to my mom or watch a comedy or something. The weird part about this disorder is that stress exacerbates the condition but the reason many are stressed out, in most cases, is due to the symptoms. I’m still trying to figure out my way around this reality.

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Permalink Reply by Julie Koch on June 5, 2011 at 3:21pm

I'm sorry that it is taking so long for you to get into see a derm. I was prescribed Loprox again and tried it last week. For some reason the antifungals like Nizoral and Loprox seem to make my SD worse! It's very frustrating but I am going to give it another fair chance. It makes me itch really bad and I seem to get more waxy build up then when I don't use it.

My head was awful yesterday and have been applying a Loprox Gel and Extina Foam which is a 2% Keto solution. I don't know if they help or not, but they don't seem to hurt to much besides some burning.

I cut my hair short as well. It used to be to the middle of my back but got ugly when I lost half my hair. I keep going shorter now. It's about chin length right now and it is much easier to apply the shampoos and comb through. I kind of like it shorter better...

I was denied the Accutance by insurance. I had been on it 2 times when I was a teen but the government regulates it now and they are very strict. I am going to try to fight them and see what happens. I am just so fricking oily!

I also am starting a different birth control this week. I went from Seasonique to Trinessa (ortho tri cyclen) to try to help with acne and oil production. The Trinessa made it worse so now we are trying Cyclessa. It's supposed to be good for acne and oil secretion. We'll see! There's always that wonderful risk of hair loss...

I used Coal Tar last night and my head doesn't feel too bad today. It feels better than it has in a while and I think that it may be better than the Loprox and Nizoral but it takes time to tell...

I had to laugh when you mentioned that stress makes this worse! I too am ONLY stressed out because of the SD and the constant itching, flaking and burning. I work full time, go to night school and THIS is what stresses me out. It is so annoying and it brought my self-esteem down to the point where I was having really bad thoughts and am thinking about going into the hospital if things don't improve mentally.

The T/Sal is pretty good but I prefer the T?Gel with the coal tar. I don't know why but it seems to keep the itching down better.

Well, hang in there and keep me posted! I would love to know if you find something that helps!

Permalink Reply by Julie Koch on June 5, 2011 at 5:30pm

Thank you Daniel! It's nice to hear from someone new and get some more information. I have it on my scalp and the T?Gel seems to help the most. I also take Biotin and lots of it. I had started taking it when I started losing my hair from the Chronic Tellogen Effluvium. I don't know if it helps but i'm pretty sure it has had no effect of my seb derm.

I don't drink much water but have been trying to. I drink A LOT of diet soda and am trying to substitute it with lemon water. I tend to take hot showers and I agree that it can aggravate the condition. I check my hair all the time and am also working on that. This is such a mess!

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Permalink Reply by D. Brown on June 6, 2011 at 2:32pm

I eat pretty well. I can make some improvements by drinking more water and eating more vegetables though. I don’t really eat sweets or a lot of processed foods. I think stress gets the best of me though. I have to work on that. Funny you should mention eyebrows. I was washing my face a few days ago and realized that my eyebrows were thinning on one side. So, I just compared my eyebrows to past pictures and concluded that might not be the case because I don’t have scaling in my eyebrows but I do have little spots that are only noticeable to me apparently. It comes and goes. I just put some glycolic acid 10 % on it. I am still looking for a barber that I am comfortable with so I can cut my hair and wash more often. Every 4 days like you would suffice… I think.

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