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.

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.

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

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

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?   Let me know know if anyones heard anything. Thanks guys.
                                  NANCY

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   ;

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

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.
                                       -Nancy

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


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.

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!    

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

Sara- Welcome to the smokers' closet that I have been hiding in!    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?  )  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

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!!

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