Hi again to whoever may read this question;;I noticed some messages re being tired all the time.
Lydia is always tired and can sometimes put herself to bed during the day and sleep for hours.

As her medication has put on weight, i try to encourage her to be active, but if she runs or walks average distances, she goes very hot and flushed,and her legs go wobbly and she loses all energy.

do I have to limit how much excercise she does?
i also notice she cannot cope with hot weather and has a low tolerance to noise, so I am always trying to keep her enviroment calm, is this also common to MM or just lydia being Lydia?

:)

Before I had two surgeries I noticed that I had worse effects with MM during hot weather. During a PE class I lost control over my entire body, collapsed, and hit my head on a metal bar. I'm not sure if other people with MM experienced the same things during hot weather but I know it was worse for me.

I know that when I experience any type of over-exhertion, I become somewhat dizzy and my legs feel like they are going to give out.  It can even happen if I run up the stairs really quickly.  I am only 28 and very healthy and in average shape.  I hope this gives you a bit of insight.  
Stephanie

Hi Louise and Lydia,

Don't know how to advise you on your situation, so can only pass on my experience to you.
I was never affected by MM in the hot weather, but have always had cold hands and feet!!.
As far as excercise goes, I had STA-MCA Bypasses to both sides in June and November 2001, had my second child in 2003 and have joined a gym.
I do 2 weight training sessions for an hour each on Monday and Wednesday, a Cardio Class (1 hour) on Tuesdays, a personal training session on Thursday and a circuit class (1 Hour) on Fridays. Also do 20 minutes treadmill, and 10 minutes cross trainer after every class!!
I find that I manage to cope fine with all of this and have no effects from my surgery.
I am just really motivated to get as fit as I can so I can so I can keep up with my 2 year old!!
Everyone is different and I have probably gone to the  extreme, but I was also never on steroids after my operations. Hope this helps
Moira

I've noticed that the "do's and don't's" are different for each person. I guess each individual has to listen to their own body accordingly and go with the signals, but most importantly it's imperative that anyone with moyamoya keep hydrated.

[smiley=twocents.gif]  

Mar :D

Hi Louise,

I'm with Mar on this one.  Just pay attention to the signals that her body is giving out and keep Lydia hydrated.  Although, it is not uncommon for those with MM to have an intolerance to the heat or a lot of sensory input, such as noise.  That's how it was in my experience.  I had to eventually quit (until after my surgery anyway) many social functions because the noise just overwhelemed me.  I also had to quit doing such things as mowing the lawn, vacumming, running etc. because those types of things made my head feel like it was going to explode.    No one told me to stop anything (except limit what I lifted to 10 lbs) but I listened carefully to my body.   I also had put on weight but not because of medications but because I was simply not as active as I once was due to the MM symptoms.  The weight started coming off after my surgery as I felt better.  

[smiley=hug.gif] to both you and Lydia!
Lisa

[smiley=twocents.gif]It is interesting to read how active one person is - my MM, though it was caught before any major strokes occured, is quite "advanced" according to my neurologist.  She has told me to AVOID intense aerobic activity, since it would increase carbon dioxide in my brain and interfere with the blood flow to my brain, which is severely compromised anyway.  Not sure if that explanation is right or not, I just know she told me to really watch my heart rate and slow  my activity way down if I start to feel like I'm breathing too hard.  I usually attend a swim class for older adults with arthritis or walk on the track at the Y for 1-2 miles 3-5 times a week, though I'm down with a foot injury right now.  I'm also type 2 diabetic, not on medication or insulin, and it's getting to be hard to manage it without aerobic activty to get the heart pumping.  I also want to try to work in some strength training.  That's important, especially the older I get (soon to be 41...) :o

I too am very noise sensitve.  I cannot talk in the car with the radio on; or have the TV on and talk to my husband.  He drives me crazy because he will be playing a game on his computer (with all the fighting noises going on) and listening to an old radio show at the same time!   :(  To give him credit, he does turn it off when I come into the room to talk to him.

I suffer even more from the heat than I used to, too!  It's supposed to hit the upper 90s today in Minneapolis / St. Paul, with high humidity YUCK!!

[smiley=cry2.gif]

Anyway, just my thoughts,

ginabean in mn

[smiley=wave.gif]Thanks guys for all your feedback.Will def watch Lydia drinks lots of water, interesting how MM affects everyone in a different way, guess will go with the flow with Lydia and let her set the pace

Ginabean (in MN!),

That is so funny that you are noise sensitive as I have been like that for many years.  After my surgeries, I made everyone in our hotel room watch TV with the captions on and the sound off! (It didn't help that my dad is hard of hearing and would be blasting it!!).  I never understood/understand why but loud noise makes it very hard for me to concentrate.  

Trina (in NY!)

Thank you for posting this discussion.  My son who has MoyaMoya is also sensitive to noise.  In addition, he can't do much of anything outside when it's hot except swim.  His head hurts him terribly when he exercises a lot and it's more intense when it is warm.  

I knew the headaches from exercise and heat were related to his MoyaMoya, but I did not know the noise sensitivity was also related.

The more we know, the better we can help our loved ones with MoyaMoya....

My son, Kota (10 yrs), was diagnosed as MM last Oct and had surgery on both sides last Nov.  He was sort of noise sensitive, too.  Especially flushing the toilet. :o  But seems like he became less sensitive after the surgery.  The frequency of TIAs is much less than before the surgery.  

He was able to play little league baseball moderately this spring with some care, such as no long distance running, more rest than other boys, be well hydrated, and so on.  But he could even pitch occasionally. :D

Cotadad