How to Handle Alopecia - A Vent and a Cry for Help

shaydufblu

Highlander
(Here's a link to I've Got a Bald Spot so you can catch up on the story.)

My hair appeared to recover a little from that point, but upon closer examination it looked as though those thinner areas were spreading. I got worried, but didn't feel going back to the same derm would help because I wasn't really feeling her. So I went to another dermatologist and got my results yesterday. The doctor who examined my scalp biospy (I had to have another one, grr) said it looks like the beginning stages of scarring alopecia.

The best choice for me is to go natural again. My reasoning is I would rather have hair than struggle to hold on to a relaxed style; besides, I was natural for two years, two years ago. So I'm not too torn up about going natural. I am, however, a tad bit upset that I've grown attached to my relaxed strands. After going through so much to learn how to take care of it and getting it back to a length that I like (just a little beyond shoulder length), I have to cut it.

The reasons for my alopecia may be partly hereditary, because my mom's hair is kinda thin too and she used to have a full head of hair back in the day. However, none of her sisters have this issue as far as I know and my grandmother used to have bra-strap length hair well into her 80's. So maybe it's hereditary from the perspective that my mom used to straigthen her hair with a hot comb for the longest, and did the same to my sisters and I until we all got perms. Maybe that's the gene -- the "I've got to have straight hair and no one around me knows enough to tell me that cells and follicules in my head are just like any other part of my body - they deal with what I put them through, and then when they can't I'll get a disease or ailment" one. That lack of information gene. :wallbash: I'm pretty darn cute with a short natural too (if I do say so myself), so I wish I would have known much earlier and gave it a try earlier.

But I don't regret the decision to relax again. Wanna know why? Because I think that the inflammation really started (or got worse) while I was natural. I didn't really know how to take care of my natural hair, was combing it roughly and I let it grow a little too long for me to handle effectively. (Having a warm, tender scalp is a sign that you need to slow down.) If I didn't relax, and didn't start taking pictures of my hair, I would have never noticed those spots and if I were natural, it may have been waaay too late before I tried to seek help. I hope and pray that when I cut it, it won't be too obvious, but whatever it is I have to be strong enough to deal with it. And take the time to take better care of my natural hair.

OK enough of the vent, but my advice to the world is if you feel that something is wrong, 'tis better to get a second opinion early on than take what you're told and perhaps suffer the consequences.

My request is this. There are ladies here on the board who are dealing with alopecia and are being successful in stopping the spread of the inflammation. I found about 3 pages of scattered information when I searched for info; I would like to ask on the behalf of others and myself for you ladies who are seeing progress in dealing with your alopecia to post what you know here.

What is your treatment (via doctor)?

What do you do at home (shampoos, etc.)?

What supplements do you take?

Have you changed your diet? Did it help?

Any other advice? Rituals that work but have no explanation? :rolleyes::look:

I appreciate you guys, and even though I don't post a lot, I'm always somewhere paying attention!

Shaydufblu
 
Hey you should pm vickie id she is a Alopecia survivor. Also do a search on the subject. There are some other members that have shared about this experience. Good luck.
 
Thanks Firecracker. I'm going to pm her. I've searched and I found limited info, so I was hoping we could compile information in one place.
 
sweetie, I know you dont regret the relaxer, but I just honestly dont think its the way to go if you want to slow down or treat the alopecia, I think it would be best to leave chemicals off of your scalp all together, and learn better ways to manage your natural hair than what you were doing that aggravated it. I think its the only way honestly , personally.
 
Don't have much to add, but I wanted to say that I am sorry that you are going through this. I know how distressing this can be. :hug:

This may be useless to say, but try not to worry about it. It will only make it worse. Ask your derm about a cortisone to control the inflammation. And get allergy tested.
 
I am sorry to hear that... and always tell yourself that yes you have to seek for help but man o man nowadays you never know what to expect from the doctors or derms...Ive seen over 5 doctors to get a referal to see a derm when I had alopecia one of them told me oh no its nothing if you go bald it will grow back eventually one day ...I wanted to smack him so hard because he was incompetent he just didnt know. Than I saw another doctor that was clueless and said ok ...you need to see a derm. When I got to the derm he said its alopecia areata something like that..That dude injected me 10 times cortisone on my scalp slight burniing sensation...I had nothing from it ( results varies from one person to another)no results waited a while I couldnt get the shots as planned because it makes scalp thinner . My mom was using ecrinal before and I saw the vials and bought two and never looked back I used it till my hair started to grow back ,,,in a matter of few months...its was gone.. Try to be positive as you know STRESS is a nono regardless what you have ...try meditation and give your self some time and try to focus on something else to avoid that you start paranoying as I did to a certain point in the beggining .
 
Also, are you sure that you don't just have hereditary thinning? If so, there isn't much that one can do about it. I would cut all caffeine out of my diet as well. Have you gained weight recently and does diabetes run in your family? That can cause hair loss.
 
I'm very sorry about your hair loss. It is devastating. You might want to check out my Fotki hair loss link http://public.fotki.com/ctcks/hair-loss-july-2007/. The hair continued to thin out after these pics and is growing now back in. I now have the very thin longer length and the full new growth at the same time. It looks weird but I thank God for it. The Lord cares about our hair because it means alot to us. He is the one who numbers all our strands so pray! Love ya, Tracey
http://public.fotki.com/ctcks/hair-loss-july-2007/
 
Thanks everybody for your words of encouragement. SweetNic I just had all of my blood levels checked and iron is ok, it was low last year when this all started. Irressitable I am going to go back to a natural style, and this time probably keep it to a manageable length for me. We'll see. The derm gave me the topical ointment to apply to reduce inflammation and itching. It is hard when you know something is going on, but either dr's aren't taking you seriously or tests are coming back negative. That only adds to stress. I am trying to not dwell on it and reduce stress in healthy ways such as exercise and guided meditation. Diabetes DOES run in my family; in fact, I have insulin-resistance and am on metformin now.
 
Thanks everybody for your words of encouragement. SweetNic I just had all of my blood levels checked and iron is ok, it was low last year when this all started. Irressitable I am going to go back to a natural style, and this time probably keep it to a manageable length for me. We'll see. The derm gave me the topical ointment to apply to reduce inflammation and itching. It is hard when you know something is going on, but either dr's aren't taking you seriously or tests are coming back negative. That only adds to stress. I am trying to not dwell on it and reduce stress in healthy ways such as exercise and guided meditation. Diabetes DOES run in my family; in fact, I have insulin-resistance and am on metformin now.

Okay, you might want to go see an endocrinologist. You could have PCOS or your insulin control may be really off. Did you have inflammation and itching or did he just give you something to shut you up?
 
Okay, you might want to go see an endocrinologist. You could have PCOS or your insulin control may be really off. Did you have inflammation and itching or did he just give you something to shut you up?

She did an inspection of my entire scalp and said she saw scarring and inflammation and yes, I did have itching, some of which was alleviated when I washed my hair with neem shampoo and put some boundless tresses on it. I still have little itches though. This is one of those times I wish I had an extra set of eyeballs that could see my scalp to see what 'inflammation' looks like. :rolleyes: Seeing an endocrinologist did cross my mind, but I'm feeling a little hypochondriatic lately, so I dunno.:look: What could they tell me?
 
Just found this thread. I've been dealing with this for two years now. I've been thru it all--the relax/don't relax debate, the crying, the anger, at one point my thinning was so bad I couldn't leave the house without a baseball cap and even a simple ponytail took me 30 minutes of arranging.

I tried herbals, I tried the shots. What has given me some regrowth is Rogaine 5%; I also take spironolactone, b12 and biotin. And I gave up on trying to go natural after a very miserable year trying. I had a terrible time with breakage, sore scalp... it may be the best way if you can manage it, but my fine but very kinky hair was more than I could work with. I now relax no sooner than every 4 months with a very mild product I leave on just long enough to get some loosening, comb only when wet and use my fingers the rest of the time. I don't love relaxing, just choosing between evils for me and I have seen no issues, but I'm extremely careful and willing to assume the risk, mostly because repeated attempts to go natural were absolute disasters and I have to do SOMETHING. I have seen a good deal of improvement, can wear my hair however I want now that I've had some regrowth at the crown and really don't think about it that much anymore. In the beginning tho, I obsessed. But I stuck with Rogaine and altho it took some time and there was a bad shed period I'd read about but still sucked, it grew my hair in. There's no way I'd EVER stop using it and it's not any more inconvenient than the rest of my grooming routine.

Wishing you well on this journey. It does get easier, your situation can absolutely improve with the right care and treatment and you will feel better about it all in time as you discover your new successful regimine.
 
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Thanks Blu. I am in the process of compiling info to come up with a plan. The BT and ointment are keeping the itchies at bay for now. Guess I'm gonna have to get me some Rogaine....
 
I am sorry to hear that... and always tell yourself that yes you have to seek for help but man o man nowadays you never know what to expect from the doctors or derms...Ive seen over 5 doctors to get a referal to see a derm when I had alopecia one of them told me oh no its nothing if you go bald it will grow back eventually one day ...I wanted to smack him so hard because he was incompetent he just didnt know. Than I saw another doctor that was clueless and said ok ...you need to see a derm. When I got to the derm he said its alopecia areata something like that..That dude injected me 10 times cortisone on my scalp slight burniing sensation...I had nothing from it ( results varies from one person to another)no results waited a while I couldnt get the shots as planned because it makes scalp thinner . My mom was using ecrinal before and I saw the vials and bought two and never looked back I used it till my hair started to grow back ,,,in a matter of few months...its was gone.. Try to be positive as you know STRESS is a nono regardless what you have ...try meditation and give your self some time and try to focus on something else to avoid that you start paranoying as I did to a certain point in the beggining .

What is ecrinal...do you need a prescription? I would like to get this...are you still using this? Please PM me...sometimes i can't check the boards....

TIA
Br*nze~
 
Thanks Blu. I am in the process of compiling info to come up with a plan. The BT and ointment are keeping the itchies at bay for now. Guess I'm gonna have to get me some Rogaine....


STOP do not get Rogaine...if you start and then decide to stop the remaining hair you do have will shed violently!

Whew! This happened to me....i do not recommend Rogaine to anyone...this has happened to many others...you have to be one in like 1,000,000 people to not have this HORRIBLE, HORRIBLE shedding after coming off of this product....the doctors don't tell you that! You will have to use it FOR LIFE! PM me for more info...just trying to help, not scare...i'd hate for anyone to go through what i went through...that's a promise i made to myself.....:wallbash:
 
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Hey there shady,

There is a laser treatment that you can have 3 times a week that should cut down on the inflammation. Doesn't hurt at all. Ask your derm about it.
 
So sorry you are going through this. My mother has alopecia. She has parathyroid problems which her doctor attributed to the alopecia. She has had several bald spots over the years. Some dime size and others the size of 50 cent pieces. All of the have grown back. She sees a dermatologist for steroid injections. The injections allow the hair to grow back. The hair normally starts growing in as gray and then darken up later. I hope this helps.
 
What is ecrinal...do you need a prescription? I would like to get this...are you still using this? Please PM me...sometimes i can't check the boards....

TIA
Br*nze~

I wondered what it was too...

Thanks for all the advice ladies. I've decided to do one thing at a time so I'll have a better chance at knowing what works. Right now I am taking biotin and using the topical treatment the derm gave me. Sunshinelady, I'm going to look into an endocrinologist. The question probably sounded a little rhetorical but I seriously wanted to know what info they could tell me. :brainfog:
 
STOP do not get Rogaine...if you start and then decide to stop the remaining hair you do have will shed violently!

Whew! This happened to me....i do not recommend Rogaine to anyone...this has happened to many others...you have to be one in like 1,000,000 people to not have this HORRIBLE, HORRIBLE shedding after coming off of this product....the doctors don't tell you that! You will have to use it FOR LIFE! PM me for more info...just trying to help, not scare...i'd hate for anyone to go through what i went through...that's a promise i made to myself.....:wallbash:

THANKKKKKKK YOU...........
 
I'm wondering if Ovation Cell Therapy or megatek work for alopecia... I believe Ovation's website mentions that it can be used for hair loss due to medical reasons. Has anyone here with alopecia tried it?
 
Hey Blu,

I want to say that I'm so sorry this is going on and it is a battle that I am fighting too. My hair began to thin over 5 years ago and it just got RIDICULOUS 2 years ago. I was at that place where a raggedy ponytail took 1/2 hour because I was trying so hard to arrange my little bit of hair so that my scalp wasn't showing everywhere. I'm not at all against derms, but 3 different, highly recommended ones offered me zip (the last not for lack of trying). Even the biopsy was inconclusive.

If you find that your current regimen doesn't produce any results, I would try Ayurveda. Since beginning to use Ayurvedic product and other herbals, I am seeing unmistakable new growth and so do others in my life. Some of my staples are Vatika and Ramirth hair oils, shikakai, amla, brahmi, and neem powders, and Products of the Earth Herbal Hair Revitalizer. Products of the Earth contains arnica, a natural anti-inflammatory. Qhemet Biologics is also a soundly based herbal company and their products contain MSM, which helps growth. All of these should be compatible with medical treatments.

I hope you get the help you need soon. In the meantime, try not to stress... Easier said than done but better for you AND your hair in the long run.
 
What is your treatment (via doctor)?

My doctor just drew blood for the Immunolabs food sensitivity tests and got me results of foods that might not agree with me. Food became a suspect when I noticed that my bald spot would itch every time I ate. It turned out that the foods I was eating regularly had somehow become intolerable for me. So I just cut them out of my diet.

What do you do at home (shampoos, etc.)?

I believe I started using all natural shampoos at the time. This was in 2003/2004 so I'm working from memory. I know Surge was a big hit at the time but when I found my bald spot, I never touched Surge. My reason was I couldn't risk anything with chemicals worsening my situation. So J/A/S/O/N, Aubrey Organics...became the lines I would use on my hair.

I also applied the Essential Oil Blend for Hair Growth every night and massaged it well then baggied. Sometimes I'd wash it off in the AM; sometimes I wouldn't. But I applied it every day. I didn't use any other products on my hair. Baggying with the Blend seemed to keep my hair happy.

What supplements do you take?

When I first joined the forum, I bought every supplement that was raved about. MSM, Biotin, B5, silica...but that was in addition to what I always took before: multivitamin/mineral, garlic, acidophilus, essential fatty acids. Since I could never remember to take them all, and since until then, I had done OK with just my 4 supplements, I stopped taking them. I guess I also worried that they might've had something to do w/ my hairloss. (Silly thought, but you know how you discover something you had never ever seen and then start looking at your life to see what you'd changed....). So IIRC, I went back to my tried and true multi, acidophilus, garlic and flax.


Have you changed your diet? Did it help?


(See my first answer.) Changing my diet to eliminate the foods the tests showed were bad for me made my bald spot stop itching when I ate.
And yes, myhair did grow back too
. One of the things I kept in mind is every time I ate a food that was not of benefit to my body, it was taking the place of some other food that would have been of benefit and thus depriving my hair follicles of the nourishment they need. That kept me from eating junk that might've worsened the situation.

Any other advice? Rituals that work but have no explanation? :rolleyes::look:

I think the diet, Blend, and massages helped a lot. I read widely about natural remedies and had a positive outlook. With so much out there, I was so sure I could overcome this, and I didn't ignore anything that was natural. So I think a positive mental attitude helped a lot too. I also tried to stay calm. The fact that I had lost someone really close may have had something to do with it, although if you'd asked me then, I'd have sworn I wasn't stressed.

I do want to recommend the scalp flex exercise. Although I didn't use it back then, I do believe it can make a difference. Visit the forum on the website whose link I give below and see the difference it's made in people's lives. It might be a good idea to read the link "My Approach" first.

www.hairloss-reversible.com
 
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