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For Menstruating Girls/Women with Moya Moya (Read 1828 times)
tiomasai
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Arriba Arriba!

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Douglaston, USA, usa, 504, 106, NY, New_York
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For Menstruating Girls/Women with Moya Moya
Jun 8th, 2005 at 6:51pm
 
Hi:

This is sort of a personal question so if you don't mind replying but don't want to broadcast it on the board, you can send me a message personally.

I have always been irregular, sometimes up to 4 months, with my periods.  I have gotten several gynecologist opinions about this over the years and most said that it was okay (often they felt that stress was contributing to it). 

However, since my diagnosis, I now feel it is related to moya moya.  When I mentioned it to Stanford, they said they had never heard of such a relation but I thought I would put it out there.  Do any of you women with moya moya have this problem?  I'm hard-pressed to believe that my lack of blood flow in my brain is not related to me not 'bleeding' as often as I should be. 

(I should also note that right before when I do get them, I get massive headaches, which makes me think it's related all the more so). 

Any insight or thoughts any of you can provide would be greatly appreciated.

Thanks,
Trina
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tiomasai  
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CarasMOM
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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female
Re: For Menstruating Girls/Women with Moya Moya
Reply #1 - Jun 9th, 2005 at 1:48am
 
Hi Trina, ....thought was interesting question you asked...because I without MM....have been irregular all my life...due to autoimmune disorder...premature menopause/..my ovaries don't produce ripe eggs....all four of my kids were adopted.   And someone on the site recently said MM was an autoimmune disorder...so it could be various of things...one could have several disorders, too (mine also being diabetes and B12 defiency).   I also have observed many variations of irregular periods over 30 years too because when someone talks about it, or its in the paper...etc...I read it.   I don't think its related to MM....more related to stress, diet, lack of correct hormones rather than MM.    Many little factors ...not so sure about headaches...which could be dehydration a bit as you are losing blood, feeling yucky and may not feel like drinking as much fluids as you normally would if you felt good.   
But you are right....once you know you have MM...and every little thing (big thing) that goes wrong healthwise you will always wonder...Is it MM related or not ??  I will probably do the same with Cara as she grows up, too.

Let me know if you find out something new, discover some connection...I will do the same.  Smiley CarasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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CarasMOM
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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female
Re: For Menstruating Girls/Women with Moya Moya
Reply #2 - Jun 9th, 2005 at 2:55am
 
I need to add...as someone send me a message asking where I got the information stating MM as an autoimmune disorder.....Im still looking for where I saw it.  MM may not even be an autoimmune disorder as someone mentioned somewhere on this website...so I will research it further...until then please consider what I said was my opinion until I can find a medical expert quoting that it is.  Thanks,  CarasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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Sara
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Houston, USA, usa, 291, 279, TX, Texas
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Re: For Menstruating Girls/Women with Moya Moya
Reply #3 - Jun 9th, 2005 at 2:50pm
 
Trina:

I have had moya moya most of my life and have always been VERY regular. I do, however, get hedached at "that time of the month". My neurologist says this is just hormonal changes causing them. I would guess that the irregularity and moya moya are unrelated, but I am not a doctor...

I know the docs say we shouldn't take birth control, but I aleays have less headaches when I am on it.. You may want to ask about getting on a low dose birth control and that may help both problems.

Good luck!

Sara
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Nancy_N.
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My daughter Mandy Has
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Jasper, USA, usa, 436, 230, GA, Georgia
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Re: For Menstruating Girls/Women with Moya Moya
Reply #4 - Jun 9th, 2005 at 4:06pm
 
Mandy has had MM for 2 years and has had no problem what so ever.
              Nancy
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tiomasai
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Arriba Arriba!

Posts: 246
Douglaston, USA, usa, 504, 106, NY, New_York
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Re: For Menstruating Girls/Women with Moya Moya
Reply #5 - Jun 11th, 2005 at 4:57pm
 
Thanks all for your replies!  I am glad that the general feeling is that they are not related. 

Sara, I have a question for you - can you tell me what low dose BC you have used?  While the irregularlity may not be caused by moya moya, my biggest  concern is that I think BC that was used to initially treat me for this irregularity is what we think triggered my moya moya to begin with (I know there are no causes that are proven, but I have read medical material where a few moyamoya females felt their BC and moya moya were possibly related).  Before I took the BC (I think it was provera 10mg), I had never had any symptoms.  They all popped up a few years ago, after I had taken it for a month (and then stopped, cuz they drove me to the brink!).  SO, I'm curious to know what you were able to take...I was later given Aygestin 5mg to use as an inducer (1/day for 12 days if I went without one for too long).  I have only used it twice, and both times I had a few MM symptoms after (numbness, tingling).

Thanks for your help.

Trina
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tiomasai  
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STrantas
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Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
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Re: For Menstruating Girls/Women with Moya Moya
Reply #6 - Jun 12th, 2005 at 10:44am
 
Trina -

BC and MM are not necessarily directly related.  It's just that various forms of BC (mainly anything that would cause changes in your hormones) has a high association with stroke, in general.  MM patients are advised to stop hormonal BC because of the risk of stroke.  I've heard (haven't asked my doc ye) that progestin only BC is safer.  But I'm not a doctor....!  I'd advise that you check with your doctor about the associated risks of BC before you start taking anything to help regulate your periods.  It sucks!  I know!  I've experienced bad cramps and irregularity since I started!

-Shari
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A smile is contagious...start an epidemic!
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dinferois
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Re: For Menstruating Girls/Women with Moya Moya
Reply #7 - Aug 14th, 2020 at 8:37am
 
Many little factors ...
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