Re: Citicoline

[Guest guest]

I would guess the diarrhea would hit if you took to much Citicoline.

Diarrhea and having to pee all the time is a sure sign your body can't use all

of what has been taken.

Today someone told me I looked steadier on my feet. I feel steadier, I am glad

someone noticed.

[Guest guest]

Here's my info on it so far:

I've been taking it about a month, maybe just a bit less. So far I

notice some of the same things as I did when I first took Neurontin - a

clearer mind, colors seem brighter (more vivid) and my libido is

stronger. I take 500 mg about mid-morning because if I take it any

later in the day, I can't sleep at night, it has really increased my

daytime alertness, but if taken later - it seems to make me restless at

night. Besides the not sleeping and restlessness, the only other 'side

effects' I have seen while researching it are elevated body temperature

and diarreah, but I haven't experienced that.

I did start swimming 5 days a week, instead of 3, and my trainer says

my kick is stronger, but it's hard to say if this is from Citicolone or

just from more practice.

Bev

[Guest guest]

Holli,

Have you had any side effects? I just noticed the last 2 days that I have had

headaches and a little nauseaus. Not sure if I am coming down with something or

if this is a side effect from the Citicoline.

Jackie

[Guest guest]

Jackie, I have not had any side effects at all on Citicoline. Nausea

and headache are not among the listed, expected side effects, which

are mostly not being able to sleep. I would guess you're coming down

with something.

I have been achy and sore all over. Feeling week and noticing

fasciculations increasing in my hands and upper thighs. I'm starting

to think that this isn't doing any good for me. I have been really

good about taking it everyday.

Do any of the women experience worsening of symptoms correlated to

your menstrual cycle? Or notice that your cycle affects the waxing

and waning of symptoms?

Holli

[Guest guest]

I do find on the days I take it, I have headaches, but also on these days seems

to be when I do not have my coffee in the morning. I will see what happens

tomorrow.

I definately have more weakness and clumsier during the beginning of my

menstrual cycle. I also have a friend who had a spinal cord injury and during

her menstrual cycle, she has greater spasticity and is overall more tired and

weak.

Jackie

[Guest guest]

Holli,

I was reading your post about Citicoline. I just got it myself four or five days

ago. I am wondering if it will help too. But, not even having tken it a week, I

want to give it the benefit of the doubt. in here says it's been

helping her a lot. , how's it going? I'm planning to take it till the two

bottles are gone anyway; hoping it helps.

Dawn

[Guest guest]

Hi Dawn,

I don't mean to be discouraging. I'm just reporting what I am

experiencing so hopefully, there is a balance of reporting the good

and the bad and the neutral. I guess I would say for me it's been a

neutral. I'm feeling better the last couple of days, but it has been

just that long since ending my last cycle and I'm wondering if that

is the reason. I plan to start keeping track. I have one more bottle

to go (bought 3, thought if it was going to help, I'd see it by

then). I'll finish that one before I decide if it's worth buying

more.

I'm just trying to be very objective and reporting what I feel

for those who are considering it but want to see how others do first.

I'm really glad is doing so well. I'd like to be feeling the

same... oh, well. I hope you end up in the positive effects catagory

too.

Holli

[Guest guest]

I am happily surprised how well it is working for Spencer and myself. I am still

not sure about my younger kids. Spencer and I have a noticeable about of new

muscle growth. Spencer marked his velcro strap on his AFOs when he first started

Citicoline. His strap keeps moving little by little. Mind you he still has

really small legs, but we see muscle now. The other day someone told me that I

seem steadier on my feet. My husband seems to think without CMT I may have

become a WWE wrestler.

[Guest guest]

Holli,

Adam is taking his all at once during the night time. I remember you said you

were taking your Citicoline all at once also. I am wondering spreading it out

during the days helps or if the does needs

to be adjusted? I don't see a difference with Adam and he hasn't mentioned

anything to me at all. Although he has been told by all of his guitar teachers

how much better he is doing. Spencer mentioned that he can play video games a

lot better now that his hands are starting to work. I hope the same is happening

for Adam.

[Guest guest]

Holli,

Thanks for the input. I've just been sitting on the sidelines, watching to see

how this is working for people, so it is very helpful to hear pros and cons

before I make a decision of my own.

I want to thank all of you who are trying Citcoline for being my guinea pigs

Defman

[Guest guest]

,

Glad to hear it! I'm on my second week and have been having doubts about taking

it but this helps! Also, I believe it about the wrestling thing! My muscles that

are not affected are pretty strong and I have a lot of endurance. My ex-husband

just told me something similar yesterday; that I would be running marathons and

bungee diving, etc. if it were not for my affected nerves with the CMT! I wonder

if we have this endurance b/c of the disease and wanting to keep strong what we

do have.

Dawn

[Guest guest]

Defman,

Might as well be guinea pigs; what else can we do? Anyway, I am only in my

second week with it but I feel my hands are slightly easier to use now. I don't

know yet as it hasn't been that long using it. Really, I will keep posting

regarding this too.

Dawn

[Guest guest]

Holli,

I bought two (Each having 60, probably the same). If nothing different by the

end of two, I won't be spending any more on it. Right now anyway, I can't afford

to. I'm going to keep posting too re: Citicoline.

Dawn

[Guest guest]

Big news for me today. I was able to use the tweezers with one hand.

[Guest guest]

I am just having fantastic results from Citicoline. My older son looks

wonderful and has a lot more muscle all over. I think we are type CMT 1A. I am

wondering if the type of CMT makes a difference. My legs actually have muscle

definition. I can lift my left foot up and down a little more now. I can move

it side to side. the best thing is that I haven't had to wear my ankle brace in

2 weeks. I went to Costco and Target all in the same day. Usually I can only do

one store then I need to go home. I am just waiting for Adam and to

notice a difference. They are a few weeks behind Spencer and I.

[Guest guest]

YES! YES! Keep us posted.........

[Guest guest]

Hey Jennie,

I am so thrilled for you!! Curious point about wondering if different types are

helped by it too. Will have to see what results other types are having.

Thanks again for giving it a try and keeping us all posted.

Carmella

[Guest guest]

Looking forward to hearing more!!!

JoAnn N.

Newfoundland, Canada (originally from NJ)

[Guest guest]

,

This is amazing; I wonder if it does have to do with the type of CMT. Certainly

worth having the medical doctors looks closely at this as they have begun to do

with Vitamin C.

So happy for you and your children that this is working.

Jackie

[Guest guest]

Oh wow ...I'm going to tell my doc about that.

[Guest guest]

Can't wait to hear more

[Guest guest]

I am very excited to show my doctor what is going on. He is a skeptic so I am

waiting until he just can't deny it before I go in. LOL

[Guest guest]

,

When is your next appointment?

Carmella

[Guest guest]

Carmella,

I don't have an appointment. But next time I take one of my kids in I will show

off my new muscles.

[Guest guest]

,

I completely understand. That is why I kept my use of the ankle supports instead

of the braces under wrap until I could prove to myself and others that they do

indeed work. It's all about faith.

Dawn