Hi Paula-
I completely understand how you feel.  I keep telling myself it can't be the MM causing me to have these feelings, but truly nothing else in my life has changed.  Before my surgery, I had a little trouble with stress but nothing major.  I now have panic attacks, problems sleeping and severe, severe stress.  I've thought about quitting work so many times and that is not like me at all!  I feel very overwhelmed and really feel I'm struggling with my short-term memory.  I had my sugery (just one side) in November of 2004 and when I went back for my 6 month check-up, they did more neuro-psych testing but didn't find anything abnormal.  I know that what I'm feeling is real though and my husband really, really sees a change in me.  I wish I had advice but all I can do is tell you that you are not alone!!  I actually even went to a therapist and she said she couldn't help me!  I know this was one opinion and I definitely need another!! 
Hang in there and know that you are not alone.  My only advice is to take it one day at a time but I struggle with that myself!!  Glad to hear you are seeing the neurologist and therapist.
Hugs from Ohio-
Chelsie

Paula, Chelsie, Lore and everyone in this situation,

Reading your accounts of mm and surgery, strokes and inabilities really hit home with me.  Nodded YES to a lot of what you related.

Thanks for sharing that.
Thanks for letting others realize that they aren't alone.

Keep searching for decent counseling. It's helped me just to chat about how things are with me living with MM and stroke results. Finding out about MM and all it entails is a HUGE thing to contend with. As you all know!
I received counseling from Making Headway in Eureka, California. It's for Tramatic Brain Injury (TBI). Also, Adult Education here has a school for TBI folks which I attend. Having had the strokes, I am brain injured. Working to live with it as well as I can. Keep searching for assistance...and know that you aren't alone.

Linda  (LA)

Hey Paula~

I am stressed all the time and thought it is just my schedule but it could be MM too. I have always had a busy schedule but right now I work at a steackhouse on the weekends, teach ten three year olds at a preschool, and going to school full time to be an elementary teacher.

I keep wanting to quit school and have the fear that I will not be a good teacher but I dont know if it is just normal thinking or MM. I dont think it is uncommon what you are going through. Man of us probably feel that way. I hope that everything works out and you can get back to teaching. I cant wait to teach but I fear what you are going through too. Can I handle it?

Best of luck!

Christy

That what I am also, and I thought I have problem.  I haven't go online for awhile because my computer crash and my depression is very bad I don't feel like to talk to any body and I felt so lonely also, I'm glad I went back to check on my MM family, and find out that is my problem you guy have.

Doctor took me out of work when I got dx on Jan, have surgery on left side on Apr, I still don't know when I able to go back to work so do my doctor.  I have so many trips to ER for major headaches and paralized on arm and leg (ER nurse thought my name is moya moya ), even one time while I'm driving, and yes I have panish attack also, tired all times, big  time memories lost, depress, and gain about 50 lbs since Jan.  Oh boy, I'm crying right now because I'm happy that it not just me, I still waiting for 6 months check up at Johns Hopkins hos where I have surgery but I also send all film out to Dr Steiberg and waiting for his opion.

I seeing therapist right now for mental and physical, and sorry for disappear for awhile because I'm still so sick but don't have a day go by that I not thinking of you guy and wondering how every body doing, and lots of prays.

Love and hugs to you all.

Kieu

Hi everyone!
I haven't been online for quite sometime.  I had my surgeries in Mar &  Apr 2006 at Stanford.  I am getting ready to trek back up to Stanford in Oct for my 6-mo. checkup.  If everything is okay, I will attempt to return to work in November.  I haven't had any migraines, thank God.  I am a little worried about returning to work.  My doctor wisely suggested to wait until after my 6-mo tests before returning to work.  I do feel overwhelmed at times.  I'll have to wait & see how things go in the real world of working, etc.  I do struggle w/short-term memory.  Things are better than they were before the surgeries.  Today is a gift that I wasn't guaranteed to experience.  Hang in there!  We have much to be thankful for, my friends.
blessings,  Lee 

You are right.  I am thankful that I am here.  After the first stroke I had a seizure and I thought I was dying.  My wish is to see my kids grow up and getting married and see my grandkids.  Since I am been off my stress level is down and I am seeing a counselor twice a week.  I think I very got a grieve after my strokes.  I was too busy going thru rehab and such.  You are right - nothing will be the same.  I just have find how out what I want to do next.  My therapist asked me what do I do for fun.  My mind went blank.  I don't know.  I am doing to explore that. Thanks for listening (reading).

Paula 8)

I am so glad Paula wrote this post.  The timing couldn’t have been better.  I printed the thread out and showed it to my family, to try to help them understand. 

My story:

Before I was diagnosed with Moya Moya, I had one major anxiety attack (around the time we think my moya moya, which I probably have had my whole life, was triggered by the taking of birth control pills).  That attack was real bad, as we didn’t know what it was. 

Once the Moya Moya diagnosis came 3 years later, it was an “AH” moment.  I thought my anxiety attacks were a thing of the past, a one time thing.  I had surgeries bilaterally (direct) and for six months, I did alright (tired, but alright).  Then, my anxiety started creeping up again. 

Now realize, I’ve always had anxiety…a little here and there (it runs in the family I think, my parents are both worriers).  But I never had an attack until my moya moya was triggered.  The stress coping had been ok, but I definitely now think something is different b/c of the diagnosis/surgery, whatever it is.  Especially hearing all your stories.  The treatment for this anxiety may be the same as for one without Moya Moya, but there is comfort in knowing that I’m not crazy when these things didn’t happen before.  There must be some correlation!  So many of us have short term memory issues (I have seen few complain of long term memory loss, though possible), sensory overload, anxiety, etc.  I feel tingling, then feel anxious.  The other day, my anxiety was so high I couldn't function, then I out of nowhere I had a pounding headache for about 10 minutes,  then all of a sudden all gone.  No anxiety, no headache.  Weird, but I definitely believe some correlation to Moya Moya (given the little research available with this disease, how do we know it's not correlated, right?!).  Still frustrating to have, but less frustrating, nonetheless. 

Anyway, I am so thankful for everyone’s support on this board.  I am grateful especially to those who have called or written to me in the last month, knowing I’ve been struggling at work for a few weeks (a story I’ll post about later).  While it’s getting a little better, it’s still difficult some days, and I’ve debated going on disability (we’ll know better, given how the next month or so goes). 

And shout out to our SI friend who hasn’t been following the board but going through the same issues…I hope your appt. goes well today.  We’re all with you.  Talk to you soon. 

Hugs to all,
Trina

  Its nice knowing Im not alone in all these funky feelings... problems coping, tingling, crying jags, panic, short term memory loss, etc.

  I pray it will be at least a wee bit better after surgery in a few weeks.

  We'll see!!!

  Thank you all 4 sharing this..... blessings 2 all.

  ~annie

   

Hey Ladybugz,
Concerned about your post - if you are still experiencing tia's after you have had surgery, you need to get it checked out as something isn't right.
You should be concentrating on recovering fully before you push yourself (you say it has only been 5 weeks since surgery). If you have to delay finishing school at this point then do it - it will give you a better focus if you wait a little while, and if I had a boss like you have I'd find another job!!
You have to put yourself first at the moment until things settle down from your surgery then the sky is your limit - you can achieve anything you want to.
Hugs 
Moira

Hi,
I can relate to your feelings.  I had my surgeries when I was in the middle of nursing school and only missed the day of surgery.  I would have a 2 week break from school so I would schedule my surgery for the last day of the quarter; have the surgery and be back in school in the next 2 weeks.  I am now woeking, but am having to go part time because I feel outdone quickly.  I feel like I can't keep up with people my age like I did before the surgeries. 
I assure you that you ARE NOT ALONE!!!
It's jsut so hard because those around just don't quite understand even though they may  try.
Hang in there!!!

Hi All Problem copers,
          I have just finished doing some reseaech, myself
I have had to stop my teaching career as a Pre=school teacher,  I have a hard time dealing with depression, anxiety attacks, and have actually tried all but two types of anxiety meds. I am currently on Zoloft and Xanax, and am still a wreck.I dont have the patients for much of anything these days.  I went to the National Stroke Association and eapecially for mm sufferers ther is a condition called IEED.  (involunyart Expressive Disorder)  I occurs when there is damage/injury to the brain that controls normal expression/emotions.  It causes a "short circuit" that disrupts the correct brain signals.  You actually feel like you are loosing control of yor life,  It very frustrating to you those around you who don'really understand this process. I can create feelings of isolation, as well.  At this time,there is no cure ortreatment approved by the FDA.   so go to NSA's website and check it out.     I thought I was actually going crazy when nothing seemed to help.  It is also a good idea to find a good counselor.    I'm not a Dr. but after I resd this  I felt that at least it made a lot of sense.
          I wish you all the best of luck in finding answers.God Bless and keep you all!
                                                           kathy a