My doc thinks there is a negative outcome from taking birth control pills and having MM. Have any of you ever been asked to stop taking it? Are any of you taking it? I have been having a lot of headaches and he is taking me off to see if the headaches go away. Of course, I don't knid... DOC'S ORDERS... We'll see if it makes a difference.

As far as birth control goes the docs told my daughter who was on the pill at the time she would never be able to take it anymore so I would research before using them or continuing them. As far as others I don't know. Good Luck!  Nancy :) ;;D

I was told by every doctor I have gone to that absolutely DO NOT take birth control pills.  They may cause stroking.  I used them for years until my diagnosis and all said to quit immediately.  I would recommend using another form of b.c.  Ask your gyno. and neurologist.  They will probably concur.

I did not like that answer either, but I followed that instruction.  

I was told to stop taking birth control pills also.  Birth control pills cause strokes.  They say if there's a history of stroke in the family you shouldn't take them at all.   My gyno will never prescribe them again (I didn't like that answer either). - Shari

Hi Sara,

I too was immediately yanked off of birth control pills with the diagnosis of MM.  Unfortunately though I wasn't taking it for it's intended purpose but to help treat an adrenal disease I have also.  With MM you have to worry about a lot of medicines.  For example, over-the-counter cold/sinus pills are a no-no.  Also, regarding headaches, we MM people should not take Zomig, Imitrex and several other well known headache meds.   However, my neurologist put me on Amitriptyline and Verapamil for the headaches which helped some.  I also take Butalbital as needed.  

Good luck with the headaches!
Lisa

Lisa,
        I didn't know over the counter sinus medicine was a no-no Mandy has been taking them for a week now, her neouro. doc said she could but I think that was from an interacting with her other meds kind of  thing now that I think of it. He's not real familiar with MM. Wow I'm glad I read this.
                                         Nancy  [smiley=huh.gif] >:(

Hiya Nancy!

There is a certain ingredient in most cold/sinus medicines (the name of which escapes me right now but I'll check on it) that raises your blood pressure and constricts the blood vessels.  There is one name brand that doesn't have that ingredient in it (again the name escapes me) but that brand really didn't help me at all so I take nothing at all.  It says right on the package of the "good" brand that says something about it being safe for people with blood pressure problems.  It seems that the ingredient that MM people should avoid is the one that really makes cold/sinus medicines effective so it's a catch-22.  I'll get back to you later about the "bad" ingredient and also the one brand I've found without that ingredient.  Let me clarify that my neurosurgeon is the one to tell me about all this and it seems to make sense but maybe other doctors have a differing opinion on this?  You know how most everything "the experts" say about MM is hit and miss for the most part!   DJ and others, what, if anything, does Dr. Steinberg about meds to avoid?  I'm very curious.

Happy Valentine's Day everybody!
Lisa

Lisa - Thanks for the information on the OTC cold/sinus meds.  I'm meeting with Dr. Scott for my 8 week post-op appointment on March 3rd and that was going to be one of my questions.  Do you know anything else we should avoid??  I'm a coffee drinker and I've been careful about consuming too much...I know caffeine  opens up blood vessels (that's why it helps with a headace) but I don't if it's bad to drink.  I know it's kind of a silly thing...but I was just curious!

Hi Lisa,
           Thanks for the info. on the sinus meds. I was gonna ask you who told you but you answered that, I was thinking the same thing the Docs are new to the MM so they don't always know the most about what to and what not to take and do. Crazy question for anyone out there in the not so great to belong to MM club, has anyone been told about salt I know for heart problems to avoid because of narrowings but the brain? [smiley=huh.gif] :-/ [smiley=huh.gif]  Let me know know if anyones heard anything. Thanks guys.
                                  NANCY

OTC cold/sinus meds----I found the info about what to avoid in a sinus/cold medicine.  It is Pseudoephedrine which, according to the FDA, acts as a vaso-constrictor and contra-indications include hypertension (meaning it raises your blood pressure) and vascular disease.  The only OTC cold/sinus med I could find without pseudoephedrine is Coricidin but it doesn't help me at all.  Does anybody else know of any other OTC meds to try for my sinuses without the Pseudoephedrine?  Maybe something herbal?

Coffee--- I've never been told to avoid caffeine but then again I don't drink coffee or even soda.  I drink strong tea though when I get migraines.  I really hope you get a chance to ask Dr. Scott about this and other things to avoid with MM.  We need a Moya Moya guidebook!

Salt--- again I personally wasn't warned about salt but common sense would tell me to maybe watch it.  [smiley=huh.gif]  You're right that they tell people with heart problems to watch their salt intake so why not MM people?  I believe it would have to do with keeping blood pressure low.  

Yes, so I worry about and avoid all the so-called bad stuff and yet I still commit the BIGGEST SIN in the MM world-- I continue to smoke! [smiley=sgrin.gif]  I don't know what's wrong with me (or you either Deej!).

Lisa

Hello All: It is Sara again. I was going to ask about MM and smoking but I just chose not to because I knew I would get yelled at. I too, am a smoker. My doctor hasn't brought it up much. He has asked me before and I told him I do. Of course, I know that no one SHOULD smoke, and I am sure it is worse for MM people. BUT, sometimes it just sucks to have to give EVERYTHING UP. I am wondering how firm all of the smokers in here's docs are about quiting????

Do any of you have more TIA's or migraine when or if you smoke more?? Just Curious??

Also, about Coricidin.... I would be careful using it... There has been sort of an epidemic in young kids (high school age?) over dosing on it because it makes you halusinate (sp?). It is an over the counter abused drug... One of my best friends little borther was doing it, and it is not pretty.

So, just be sure to use it properly, PLEASE!!

Sara   ;;D

About the Caffine question. Caffine actually restricts the arteries. I was told before Tyler's surgeries to keep him away from caffine. However, the meds they put him on for his migrains has Caffine,  :-/ they said a migrain is caused by a rush of blood and the caffine restrict the arteries just enough to slow the blood down. Of course I am confused, but I keep Tyler away from Caffine except for his meds, which he seldom needs now.  [smiley=huh.gif] Did I just confuse everyone more, or am I the only one confused??????

Thanks, Rena.  I don't know what to think anymore!  I'm definitly going to run all this by Dr. Scott when I go again in March (I'm actually going to print the whole conversation).  There's actually caffeine in Tylenol and meds that are used for headaches (Excedrine).  -Shari

The caffeine- headache relationship is very confusing I agree.  I too didn't understand why they always tell you that caffeine is a headache trigger yet to get rid of the headache you take meds with caffeine. [smiley=huh.gif]  I  had this explained to me a couple of years ago and this is how I understand it.   Your walking around just fine and the blood vessels in your head are normal (not constricted or dialated).  Then you meet up with a "trigger" one of which is caffeine.  The caffeine can constrict your blood vessels but then later the blood vessels expand again, almost like spasms.  When your blood vessels dialate, this is when the pain of a headache starts.  To get rid of the pain you want to get the blood vessels to get back to normal size or constrict.  So the caffeine in many of the headaches meds help to constrict the blood vessels again.  Make any sense?   You can find information like this at the National Headache Association.  On a side note, yes cigarette smoking is listed as another trigger for headaches (among hundreds of other things!).

Which brings me back to caffeine and MM.  Regardless of a person getting headaches or not, caffeine constricts blood vessels which MM people want to avoid right?  So, I would think (but I'm not doctor obviously!) that we should try to avoid/limit caffeine unless you need it for a headache to constrict the expanded blood vessels.  Who knows [smiley=confused.gif]

Lisa

Wow!!! The past couple posts make sense but are confusing, what a complicated disease, I am also waiting for the mm handbook to be released. Is that another D.J. project (lol). I wish there was one and if these things are so detrimental why are we all not told this by the surgeons, at least the basic things. Amber a 11 yr. old was told by Mandy's same surgeon not to wear headbands, Mandy was never told but naturally she won't wear one, yet Mandy was told to never wear sunglasses but  Amber was not,  same idea because of the pressure to the temporal artery.  There needs to be a better awarness of important things not to do or eat, like when you go in for any surgery you get a paper of what to do afterwards or what to look for but I guess thats what happens with a rare and not well known about disease. >:( [smiley=huh.gif] :-/
                                       -Nancy

Hello--my name is Siri and I was just diagnosed with moyamoya last month at Barrow Neurological Institute in Phoenix.  I think you have heard about me from my Mom, Roni, who has been on this board already.  I'm afraid I've never been on a board before, so I hope I'm doing this right!  In response to today's topic of birth control pills, I took them for a few years in my 20's and wonder to this day if they had something to do with this.  I say avoid them for sure!  As for caffeine, my doctor never mentioned any negative effects from that--and they give it to you everyday in the hospital!

Nancy_N. wrote on Feb 18^th, 2004 at 1:24pm:

Mandy was told to never wear sunglasses

That's very odd!  I wear glasses all the time (glasses - not contacts) and I had them on the day after surgery (I had to be able to see!!)!!  Dr. Scott never said anything about not wearing them. [smiley=cool2.gif]

Now that I think of it Amber wears glasses but she didn't after surgery I'm sure she does by now a year later. Hum makes you wonder.
                                             NANCY [smiley=cool2.gif]

WOW! I have NEVER known that we MM people shouldn't wear glasses or headbands. But, it has ALWAYS given me really bad headaches. Even baseball hats give me headaches sometimes. Anyways, I am really glad I have all of you to point these things out to me! Thanks!     :D

I was told to be careful when wearing my glasses after my surgery because if they were too tight, it might put pressure on the bypass area.  I am wearing them again now though with no problems.  Tricia

Hi all!  What a great big discussion we got going here!

Sara- Welcome to the smokers' closet that I have been hiding in!  [smiley=bag.gif]  My docs say that it is the worst thing in the world for MM and you betcha they give me the lecture every single time I see a doc.  I don't know if smoking makes my TIA's and headaches worse or more frequent but I wouldn't be surprised.  I plan on quitting sometime this year (probably the next time I'm hospitalized for something) but it's soooo hard!  I also heard the addiction thing with Coricidin on 20/20.  So sad and scary that things like this are the new in thing huh?  

Glasses etc.-  I was told not to wear tight fitting glasses, tight headbands, tight hats or things like masks that have elastic.

Siri- Welcome!  I too thought that my past history of taking birth control pills might have something to do with my MM but now not so sure.  "They" say that it "could" be from BC or trauma or Sickle Cell anemia or Down's or genetics or ......... on and on.   From what I am seeing from the people on this board is that it could be all of these things or none of these things that give one MM.  For example, I know the men on this board did not take BC (hopefully?  [smiley=clown.gif])  and many of those don't smoke either.  The children didn't take BC or smoke.  What I'm saying is that as much as I look I can't find a complete connection between any 2 people with MM.  Now I just think that getting MM was in my genetic make-up and that by taking BC and smoking didn't help that any!  Did this make any sense?  LOL  Again, welcome to the MM club and I look forward to talking with you.

Lisa

My doc said that taking birth control pills probably was NOT the cause of getting MM.  However, because there is the strong association with BC and stroke we have all been told to stop taking it.  I was also tested for diabates (my brother is diabetic) because there is a strong association with diabetes and stroke as well.  As far as the not wearing tight fitting glasses, I don't know - but perhaps  the fact that a didn't have the bypass type surgery (I had the EDAS) that is the differerence in the advice about wearing glasses.  I don't know, but I do know that will be one of my questions when I go back to Dr. Scott. - Shari

I currently have an IUD because was the recommenc by my doctor. No problems so far, 6 months. I think i makes your period last longer, but get a GYN that knows about MM. My DR. is Dr Peterson his number is 713-442-1000. He is great!!

Hello my name is jenna and I had my EDAS surgery this last july, before my surgery my doctors took me off birth control right away even before I was diagnosed with MM and once I was diagnosed they said I had to stay off of them due to the stroke risks however I did just recently talk to my gyn who understands my situation and he reccomended a new half pill that is only progesterin and I ran that by Dr Delashaw at OHSU last week and he seemed to think that would be a safe alternative so for any of you that are interested you should ask your doctors.  Oh and the smoking topic my doctors also told me to completly quit smoking and caffiene a total no stimulant diet and that stopped my TIA's even before my surgery so there has to be something to it. ::)

Hi Jenna - Thanks for the info.  Could you give me the name of the pill you inquired about?  I'm interested in running that by my docs too.  Thanks! - Shari

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. ::)   :D   8)

My daughter was was told she couldn't take the pill.It may cause clots.She had the IUD put in.She has had it 2 1/2 years with no problems.The insurance wouldn't pay for it.
Carol

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 :D  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

Jenna - Thank you! [smiley=wave.gif] -Shari

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

Jenna,
         I've had an IUD for the last 21 yrs. besides when I was pregnant with my kids and have had no problem I do not have MM my daughter does but they are safe and I don't think they have estrogen thats probably why they suggested it. They are good for 10 yrs. now.
                              Nancy :)

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 :-/

Hello everyone!

I am 99% sure that IUD's have estrogen :)

Sara

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

In response to Roselyn's post about caffine.  Pattys rehab  doctors at Florida Neurological Institute limit her to one cup of coffee a day, either regular or caffine free.  

We limit her to one a day -- but she likes really likes her coffee either leaded or unleaded.  Does anyone have more information on this?

Janice  

:o

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.   [smiley=huh.gif]  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 :-[

Hi Lee!  My name is Kristina and I was diagnosed in November 2001 when I was 28.  Just had  both surgeries done and still at home recovering.  I look forward to going back to work.  

I wanted to tell you that
my doc explained that it was good to have high blood pressure until you have the surgeries and once completed that it was very important that you do not.  How he explained it was if your bp was low, then it would be even more difficult to get the blood flow to where it needed to be.  But once you have a successful surgery (my blood flow went from something like 4 to 45 on my left side and normal blood flow is 28-30 as was told to me) you do not want high blood pressure  because it can cause damage to the lining of the blood vessels and cause a stroke?  I am not sure if I am helping you or not.  Unfortunately, I have a family history of high bp (my dad passed when he was 38 suffering from his 3rd heart attack).  I take Zestril as needed for high bp and probably will indefinately.  

As for the BC, I have severe pimple parties  :-[when I take them so have restrained from them.  I have just used condoms.  

I was also told not to wear sunglasses or even a snorkeling mask!  The doc did not want to put pressure on that area.  I am praying that we find another alternative to the snokeling mask; me and my husband love to snorkel.  But then I read in this topic that some docs advise not to swim?????   Never heard of that one!  Will have to ask Dr. Steinberg.  

I was never told anything regarding caffeine but advised to quit smoking.  Sara had asked if there any of us had more migraines or TIA' s when smoking.  After surgery, I did quit for a little while but no to Sara's question.  The sinus meds etc, not told anything about staying away from them and it is ok to take my decongestant(sp?).  

Sorry this is so long.  Take care.  Kristina  :)

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.

No BC that involves hormones is safe for MM.  The fluctuation in hormones make you at risk for stroke.  If you ever see the commercials for BC pills they say if you have a history of stroke you shouldn't take BC.  

Now - someone, I forget who, mentioned a BC pill with only progesterin - not estrogen.  It's sort of a half pill.  I haven't been to my doctor to ask about it yet.  When I was first diagnosed, I had called my doc to let her know what happened and to say that I was going off the BC pills I was perscribed.  She said, you'll just have to rely on condoms.  Bottom line, I would be VERY careful with the BC methods you choose.

-Shari

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 :)

My daughter had the IUD for 2 1/2 years and never had any problems.She had it taken out in Jan. and now I just had a new granddaughter.Everything went wonderful.Do you live in Houston Yoki? You have the same area code as I do.This is my second granddaughter so there is no reason you can't have kids.
Carol

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

When I was younger I was taking the pill.When I got complaints my mother and I asked the docter many many times if I should stop. NO they said, It  won't be a problem. The day they discovered that I had moyamoya she immediately said I should stop. And I never got to take it again for the rest of my life!!
It would be extremelu dangerous and could cause more strokes.

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

If you are haveing sinus problums. Suck on peppermints or chew extreemly minty gum. That should help dry out your sinus.  :)
Becky

P.S. I don' t think anyone will ever know what Oral conrtaseptives, Shots, inplants, will be better suited for MM people. It is better to be safe then sorry so go with a diphram, condoms or if push comes to shove get your tubes tied.

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

   

I was told to give my son only those cold products that could be taken by people with high blood pressure.  For colds/flu etc., my son now takes Coricedon HBP.  Look for the ones with HBP because there are other forms of Coricedon that are not for people with high blood pressure (HBP).  

Sorry but my spelling of Coricedon is probably a little bit off.  

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??

Daisy,
       Six months why is that! Has anyone else been told this?
          Nancy

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

I'm really glad that I read all these responses.  I never knew that glasses or goggles could be bad for MM patients.  My 10 year old son gets headaches every time he swims.  Now I'm thinking that it's probably because he always wears tight goggles and practically lives under water.  I'll have to change that next summer.  THANKS!