Need Advice about hair

    • Anonymous
      January 29, 2007 at 2:38 pm

      Hello everyone!
      I need some advice about if anyone else is losing their hair more than usual since getting GBS? I comb thru my hair and can pull out a handfull of hair. I know that is a possible sign for thyroid problems but I thought it might be related to GBS, is it?

      I’ve noticed that just doing laundry for one day really wipes me out, but before I could do laundry and clean the house all in one day. I was napping between rings of the dryer, it that about normal for everyone?

      This blog is really nice to vent out the feelings and frustrations!! Thanks everyone for listening and giving advice.

      Great news!! Today is my first day back to work for 2 hours a day for 3 times a week at first. After I am done working then I do 2 hours of PT. The PT still really wipes me out, will that ever get easier? I am walking up to 90 feet with a front wheeled walker but I am still relying on the motorized wheelchair. My typing with both hands are getting better but I can only type continuously for 2 hours and then my hands get stiff and it is hard to continue. Does anyone else have the same problem? And how do you cure it? I am a transcriptionist for a PT department in the hospital and where I get my PT also. My boss is also my therapist, that is ssssoooo cool!:cool:

      Well I better go for now so that way I can get back to work! Talk to you all later.
      Till next time,
      Teresa Rose

    • Anonymous
      January 29, 2007 at 4:07 pm

      Hi Teresa,
      I haven’t had any experience with hair loos, but I know animals loose hair when they are stressed. I don’ tsee why the strees of GBS wouldn’t have the same effect. Good luck and congrats on returning to work.

    • Anonymous
      January 29, 2007 at 5:09 pm

      When I was in the hospital, the nurses insisted on braiding up my hair and got as much of it out from under my head as possible. They said over long periods of bed rest, you can develop bald spots. Dunno if it’s related to what you’re dealing with. I agree with the stress factor, but I would definitely consider getting some bloodwork done. Thyroid sounds probable too. GBS throws your whole system out of whack.

      As for napping, yes some of the worst fatigue comes after you get released. Partly it’s the work from all the therapy. Partly that your body is still needing a ton of rest to fix itself. Partly the fact that fatigue continues to plague us all to varying degrees (though a lot of neuros don’t believe it’s completely debilitating, despite every GBSer I’ve ever talked to saying it challenges them daily). Just remember to listen to your body, though it’s annoying as heck to need that much rest. If you overdo it, your body will let you know in no uncertain terms. Don’t push yourself except under the supervision of your PT, and even then make sure he/she knows how precarious it is for a GBSer to push too hard in PT.

      Take care,

    • Anonymous
      January 29, 2007 at 8:32 pm

      Hi Teresa (great name by the way)

      Hair loss because of stress? Yes, it’s beeen around a long time. It happened to my mother in law and to my boss.

      It wouldn’t do any harm to get it checked out.

      You can ‘only’ type cntinuously for 2 hours? I wouldn’t want to do that and I’ve been typing for years. I wouldn’t even attempt to type non-stop for that length of time.

      Giod bless

    • Anonymous
      January 29, 2007 at 8:41 pm

      hi rose,

      for your fatigue, hair loss, & stiff fingers rest is v important. much rest & time will help these go away. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 29, 2007 at 10:18 pm

      hi there! i had about a year of chemo. along with i.v.i.g., so my hair loss was from chemo. it’s been 3 yrs. since my chemo. and i’m still finding long red hair in the tub, brush, pillows, etc. i just thought it was a normal aging process. glad to hear i’m not the only one. i still get all the stiffness and everything else you described. all normal residuals and rest is very important. i’m so happy for you, that you’re able to go back to work for a few hours. yea!!!! good for you. keep up the good work. keep us posted.

    • Anonymous
      January 29, 2007 at 10:55 pm

      Not enough protein in a diet can also cause hair loss! Would not hurt to let the Doctor sort it out with a few tests.

    • January 30, 2007 at 9:02 am

      Your meds can cause it too. I went thru a shedding stage where I thought I would go bald. I went off my meds and it is now growing back in so I have a mini mohawk of strands not long enough to lay down and other areas of shorter than the rest hair. My hairbrush still has hair in it, but at least I can run my fingers thru my hair without it looking as if I am losing handfuls (not sure if it was nearly as much as it seemed but any amount of extra hairloss is too much in my book).

    • Anonymous
      January 30, 2007 at 12:44 pm

      Hi Confused Rose,
      I havent had any sign of hair loss…it might be the meds that your still on. Goodluck at work, have some fun…it looks like your battling with GBS very well:).
      Take Care

    • Anonymous
      January 30, 2007 at 3:06 pm

      my hair has been doing the same thing, but i havent been stressed here latly and they ran all the tests possible I feel like we are chasing our tails. so no more tests just watch hair fall out for now. If you come up with something please let me know. rest is very important and laughter is still the best medicine!!!!

    • Anonymous
      January 31, 2007 at 10:08 am

      I am using a shampoo/conditioner developed especially for chemo patients. It is full of natural ingredients which stimulate the scalp. It is called “Nioxin” a Bionutrient Actives, Scalp Therapy product. I began to notice a slight “thickening” in my hair in less than 2 weeks. I found out about this product thru my best friend who is being treated for ovarian cancer. It is an expensive product so I hesitated sharing this but atleast you can check it out for yourself. Any beautician or beauty supply store will know about it. Also you can check it out at
      I wish for you the best in finding something that works for you 🙂

    • Anonymous
      January 31, 2007 at 11:31 am

      I remember when I got out of the hospital, I too experienced hair loss. I truly believe that it was the meds I was on that was doing it. Stress was a possibility as well.

      Congrats on going back to work. Keep moving forward.

      Jen/GBS 2003

    • Anonymous
      January 31, 2007 at 2:05 pm

      All the advice that everyone has offered has really helped. I will just keep an eye on the loss for now to see if it gets better. I have enough hair for 2 people so a little hair loss won’t show much on my head:)

      I do have another question about how to or what will help the legs with burning and the sensitivity to the sheets? My muscles every once in awhile get to jumping all the time all over the body, its kinda like little spasms all over the body. What does everyone take to get the muscles to relax, to keep your body from jumping all over the place?

      My day at work went great. It was really nice to back amongst coworkers instead of looking at the 4 walls in my house. Today is my 2nd day and is going great also.

      Well I better go for now so I can do something for work. Talk to you later.
      Thanks again for the encouragement and many more to everyone else who needs the ENCOURAGEMENT!!
      Till next time,
      Teresa Rose
      PS Teresa Anne, what a great name also. My middle name is Ann also but without the “e” on the end.

    • Anonymous
      January 31, 2007 at 2:08 pm

      Gosh Teresa! You are doing so well! Congrats on starting work, but just remember not to push yourself to the limit. You are doing so much already, your job, PT, and household chores, all of that only 2 months after being diagnosed with GBS. As everyone said before, you will be fatigued, almost unaturally so …. this is normal and it will probably take a very long time to feel vaguely ‘normal’ again.

      As for the hair…. I didnt have any problems while in hospital, except for VERY dirty and tangled hair. However, the last few months have been some of the most stressful in my life, and I have been worring about the amount of hair loss I have at the moment. Everytime I wash my hair, every 2nd day, handfulls of hair seem to come out in my hand. So I guess my answer, after such a long explanation, would be that it could very well be stress related.

    • Anonymous
      January 31, 2007 at 9:56 pm

      Hi T.A. Number 2!

      Congrats on going back to work, but like everyone else has said, try not to overdo it! What a great set up you have with your boss!

      My fiance Ben had GBS two years ago and has been losing hair for about three months now. It’s probably because of some new meds he went on because he had tons of bloodwork done, and the only thing that came back low was his magnesium level. I’m going to look up that Nioxin stuff Judi mentioned and will probably get him a bottle of it.

      I also wanted to let you know that around the same time his hair started falling out, he also started having uncontrollable full-body spasms. He is now taking 325 mgs. of Quinine twice a day, and that seems to do the trick. You can also get Quinine in Tonic Water, but I hear it has a bitter taste.

      Good luck to you! I’m rooting for you!


    • Anonymous
      February 3, 2007 at 7:09 pm

      Hi confused Rose

      I was lucky and didn’t get hair fallout with GBS, although I was expecting it as apparently, your hair falls out less whilst pregnant and catches up afterwards and I had a baby 6 weeks before the GBS came along.

      Anyway, I mentioned my mother in law previously. She got hair loss and no particular reason was found. That’s why I believe stress plays a part – actually, I think it has been shown to do it. I don’t mean mega new stress but the routine type that we all think we can cope with whereas our bodies might have a different idea.

      I think you are doing really well -to be back at work so soon. I know that recovery is different for us all. I would suggest however that when you go to bed at night, you are not totally whacked out. Keep a little in reserve. It is so easy to say ‘I can do it’ and actually push yourself more than you would if you had not encountered GBS.

      Shannon, tonic water is not particularly bitter. I drink it every night mixed with red wine. My sympathy to your fiancee getting full-body spasms. I get twitches in my feet and legs when I am fatigued and hit the couch, but I’m 13 years on from GBS. Mind you, I don’t hit the couch all that often and the twitches tell me that resting is working and things are improving. It’s good to hear that the quinine is helping him.

      I’m not sure, but I think a good source of magnesium is bananas (well I know they are a good source of something!)

      I know that guys don’t like losing their hair. On the other hand, right or wrong, bald guys can be rather sexy/cute (come on girls, it’s true!). Also, some guys go bald young.

      God bless

    • Anonymous
      February 4, 2007 at 9:52 am

      Hi TA!

      I agree, I’ve seen some decent looking bald guys in my day; however, Ben isn’t threatening to go bald on me! He has as much hair as I do! I guess whatever he’s losing is growing back because I don’t see any bald patches or anything! He looks very handsome and gorgeous as ever!

      I think bananas are known for their potassium. I make sure he has pumpkin seeds lying aorund the house though because it’s the only thing I can get him to eat that has any magnesium, and he did test low on magnesium.

      If tonic water isn’t all that bitter, then I’ll buy a bottle of it next time I’m at the store.


    • Anonymous
      February 4, 2007 at 8:51 pm

      Ali, Shannon, and Rose,

      Don’t know if this is helpful, but my hairdresser tells me that human hair goes through growth and shedding periods, each period lasting about 3 months.

      The subject came up before I got GBS, because I noticed that I seemed to be seeing an awful lot of hair on my pillow, in the drain, on my hairbrush, and hair would come out when I ran my hands through my hair etc., and I was a little worried. It was especially noticable I think, because my hair was dark brown and long. I have lots of hair, so I didn’t notice any thinning, but was still afraid something was wrong. He reassured me that this was normal. Since then, I’ve been paying attention to these cycles, and I’ve realized he’s right.

      What you are experiencing may be different, but perhaps it’s part of the normal shedding cycle, and you are more aware of it since we are all sensitive to changes in our bodies after GBS? Just a thought.

      Ali, I thought of you today. I’ve never had the metalic taste you described until a friend had made some 7 layer dip and served it with tortilla chips this afternoon. The first bite I took gave me the weirdest metalic taste. The 2nd and 3rd bites did too, but when I swallowed, the taste went away. After that, I ate a few more bites, and my mouth tasted normal. Very strange. I have no idea what caused it because nobody else had the funny taste.

      GBS is such a peculiar disease – it seems like anything is possible. Hope you find the answer to the mystery.


    • Anonymous
      February 7, 2007 at 5:18 pm

      Teresa Rose,
      How are your nails growing? If they are growing, then it is probably not a lack of protein. IF you want to check for an under active thyroid, get some iodine and draw a one inch square on your inner arm and then see what happens over the next few days. If it disappears, then your body needs iodine for your thyroid. I would take kelp instead of pharmaceuticals. If you are not taking any B complex for the nerves, then I would do that. I take capsules of 100 mg B complex – four of these a day. It has helped prevent fatigue and foot pain. I did not do any PT and wonder if that prevented foot pain also. I waited until my body was strong enough to walk….and it worked. I use my intuition. It just seemed illogical to walk on feet that weren’t ready. It was a leap of faith, but it worked for me. This week ends 4 months of recovery and I am using a walker and getting stronger.
      I love OSLO…..spent a week there. Loved Frogner/VIgland PArk….also took the train at night to Bergen……what a wonderful country you have!

    • Anonymous
      February 10, 2007 at 7:39 pm

      I too have had hair loss, and since Gbs in 2000 my hair is brittle and dry. I look at my old pictures and say,”Where did it go?” It’s not sheding any more just balah!!! I’ve tried everything to get it back but nothing seems to work. I think it has something to do with cortisol levels according to my naturopathic doc, but I guess this is something I’ll have to deal with the rest of my life. Fine, thin, dull, hair. Oh what a blessing GBS brings. LOL. xoxoxox Roxie

    • Anonymous
      February 10, 2007 at 10:31 pm

      Unfortunately I believe my hair loss is due to genetics rather then meds. :rolleyes: