shari~
         I will find out the name this thursday when I talk to my doctor here about it but for right now I know its called a "half-pill" and It only has progesterin not the estrogen which is harmfull to those of us with MM but anyways I will post that for you thursday after my appointment.       8)

shari-  the birth control I just got is called camila its the generic form but your doctor should know just by that name what it is.  All of the people that are talking about IUD's this seems odd to me because I thought those of us with MM couldn't have estrogen because of its stroke causing affects and don't IUD's have estrogen?? Thats why I got these pills they are only progesterone and have no stroke causing affects   Those of you that do have your IUD's why did the doctor think this would be ok??  that just doesn't make sense.
thanks
jenna

Hi all!  I went to see Dr. Scott this past Thursday.  Guess what???  I have to get new glasses!  He said there is a risk of wearing things too tight around your head and everyone should be carefull!

-Shari

Carol,
        I wanted to ask you something about the IUD its been 10 yrs since I got mine are you still on the board?
                               Nancy

Dear All,

Hi, I'm Roselyn and new to the website. I was diagnosed with Moya Moya in early 1990 when I was almost 9 (I'm 23). I had ECIC bypass revascularisations done in January and May 1996.

I know this conversation is old but I read with interest the various do's and don't's and thought that I would add what I've been told.

Re BC, I was advised to go on the POP - Progestogen Only Pill. The brand name of my particular one is Micronor and it's technical (or whatever the word) name is Norethisterone.

As for caffeine, I was told to steer clear of it and have done so pretty much since I was diagnosed. I don't particularly miss it - I don't mind decaff - as long as the taste is still there. Plus it's a lifestyle thing anyway - too much caffeine is bad for anyone.

With the hats and headbands thing, I find that with wearing the hats for the cold weather over here, they do sometimes give me headaches and looking back, when I was a kid, wearing headbands seemed to give me headaches too. I guess it makes sense. It was only having read this that I realised what's been going on! I was never told not to wear them. One of the only things I was told not to do (apart from the usual back then, of avoid excercise, try not to get upset - and don't laugh too much!) was swimming. I used to love swimming and I hated being told to stop. I understood why but it seemed so unfair back then. Again, the obvious reason was so that I didn't have an 'episode' (by the way, what do you guys refer to them as? I remember when I first got ill, at school, one of my friends calling it a 'floppy attack!' Glad I can laugh about it now) in the middle of the pool. I was also told it was something to do with the chlorine. I've always assumed that chlorine has the same effect on the brain as caffeine does but don't know exactly why. I asked my doctors a few years ago if I could go back to swimming and they gave me the go ahead. I only plucked up the courage to relearn how to swim last year. Have stopped again now but am determined to go back to it.

I have also been told that smoking is a definite no no. I'm lucky in that I have never wanted to smoke but do feel for those of you that do. It's not nice being told not to do something that you enjoy - as I found as a kid with my swimming. It felt like the more I was reminded, the more I wanted it.

Anyway, will sign off for now - this reply of mine is getting too long. I want to reply to a few more other posts so I'm sure you'll see my name pop up again.

Best Wishes to you all,

Roselyn

Hi, all.  I know this session is pretty old, but I'm new to the site.  I was diagnosed on July 13, 2004 with MM.  My neurologist has been consulting with a neurosurgeon from UVA in Charlottesville, VA.  The information listed here has freaked me out.  All of the items discussed (ie. coffee, BC, otc-sinus meds {sudafed} smoking, and salt) are part of my daily routine.  ARRGH!!  My dr. actually told me to increase my salt intake.  He wants me to keep my blood pressure as high as possible.     He told me the lower my blood pressure, the less blood flow to my brain.  I am calling him tommorrow!!  Dr. Johnston (from UVA) believes that I have had MM since the age of 7.  My first stroke was at birth.  My second in my teen years.  And, my third about 3 months ago.  I have had no serious damages.  Just the dumb headaches and my 'episodes' as I call them.  At this point in my life, I have only one main artery in my brain that is not occluded at least 90%.  That is one of my vertebral arteries is only 40% occluded.  I think I will stop all of it tommorrow, if it will get rid of the daggone numbness in my left side.  Sorry, so long.

Lee

i have a iud for about 2 years i didnt even know bc was not good with moyamoya but what birth controls are safe and please let me know what isnt safe cause i never knew all this.

Kristina,


Thank you for your reply.  I appreciate the support that is offered in this site.  It's WONDERFUL!!  My neurologist explained basically the same to me, so it renews my faith in him.  To be honest, he looked up the site and said the individuals on here, were more knowledgeable about the disease than he is.  LOL  I can't wait to see a specialist who can help me learn more about MM and if I'm eligible to have the by-pass surgery.  Thanks, again.

Lee

This is Becky,
My Nurologests have said that takeing a Progesterin Only Pill (POPs for short) is fine in my case but it may not be for people with more severe MM. The Progesterin tricks your overies into thinking they have already releced an egg so in essacance you don't ovulate. It is like the DEPO shot but in a pill form. I also don't get my peroids like people on DEPO. Unlike DEPO the shot that stays in your system for 1year after you stop getting the shots, the pills are in your system for only a mounth untill you get you flow back!! If I show any signs of my MM getting worse or they find out for sure it is bad for people with MM I will immetly stop taking it.  So LOOK onto POPs

This is so frustating!

I had my surgeries and still I am having problems. All of the things that were listed here were not told to me. Like the thing about birth control pills, and the sinus and cold medicines. I have terrible sinus' and have been taking meds for it. And salt, I never thought about that. I mean, thank God that I am used to eating foods without a lot of salt, but here at the college it seems to be their favorite seasoning!

The only thing I was told was that I absolutely could not go skydiving when I turned 18. I too, am waiting for a handbook. Maybe we should start one?

Jesenia

Hey,

Becky:

     Thanks for the tip on the peppermints for sinus. 

I also seriously considered having my tubes tied, but have not for a couple of reasons.  1--My neurologist said no anesthesia for at least six months post-operation.  2--What's the point?  Not supposed to have sexual intercourse for six months post-op. either.  This was just a recomendation for the severity of my MM. 

     I had my first surgery on Oct. 14, 2004.  I was only stable enough to do the right side.  The original intention was to do EC-IC on both sides.  I had the EC-IC on right side with EDAS and muscle flap.  So, I should have sufficient blood flow, right?  Wrong, the blood flow to the right side is now restricting what little flow I had on the left side.  My symptoms (episodes) are re-occuring on my right side. 

     Yes, I am very frustrated.  I would love to see a hand-book for MOYA-MOYA; but which doctor would we trust to write it.     I wish I had the money to have traveled to see Dr. Steinberg.  Hey, Jesenia;  I feel for you.  If you want to share 'war' stories, email me.  My thoughts are with you.

Lee

As far as cold and sinus meds go... We can't take anything that is considered a vasoconstrictor. I know Psuedephedrine is... Anyways, just thought I'd add to the list !!

Sara

P.S. I have never had trouble with swimming??

Hello again,

I read the post on salt  and how we probably have to watch our intake of it as it may cause high blood pressure and that is something we don't want to happen.

So when I saw my neurosurgeon on Friday i asked him about it and he told me that I probably had low sodium. He had a blood test ordered to check it out, but it really confused me. If it turns out that I have low sodium i may be taking salt tablets, does that sound odd to anyone?

freckles