Hi Alisa,

Wow, your recent incident at the gym sure sounds frightening. I'm glad, for the most part, it wasn't something very serious; although, I do believe that our bodies give us warnings that we need to take heed to.  I know you had an EEG which was normal, but I recently read in another post that someone else had a normal EEG, but she did experience a seizure or seizure like activities.  I would ask about any other types of tests that can be done to see exactly what it was that you experienced...and then, (I know I sound like broken record), I would send them to MM specialists for their opinions.

Hmmm..I'm just wondering, does raising anti-seizure medications for brief periods of time help prevent seizures?  I would think that one would have to stay on the increased appropriate dose to prevent further seizures.  I'm thinking, if he discontinues the extra 125 mg of Keppra, then you'll be back on your regular dose right?  Would that make you at risk of having another episode?  I'm not too familiar with seizures, but I'm sure many here are...let's see what others have to say..

In the meantime, I would ask your doctor if there's any other test other than the EEG to find out exactly what it was that you had, and also a good reason to follow-up on your surgery.  Have you had an angiogram or any other follow-up tests since your surgery in 04?

Take care,
Shan

Alisa Marie wrote on Sep 29^th, 2005 at 1:16am:


I really think it depends on the person. My MM symptoms were only TIA's.

Are you remaining hydrated through your work outs?
Just a thought....

-Shari

Hi Alisa,

I wanted to look up your question more, so to "Google" I went and found the following below.  I guess the answer to your first question, if I'm reading this right, is that TIAs could be a symptom of MM.  Before I was properly diagnosed, I was clueless of what a TIA was and didn't realize that the tingling and numbness in my hands and face were actually TIAs!    I read that you also mentioned your "legs failed you."  Did your legs become weak just at a moments notice with no warning?   Hmmm.

Well, in my quest to help find answers to your question, I've come across the following sites that may help...

and


As the vessels narrow the brain receives less blood.  This can result in temporary symptoms such as:

Headaches
Numbness or weakness in the extremities
Difficulty speaking
Stroke
Symptoms

Children typically have symptoms including:

Strokes (sustained weakness or numbness in an arm or leg, difficulty speaking, visual abnormalities or problems walking)
Transient ischemic attacks, or TIA’s (temporary stroke-like symptoms that don’t last long)
Headaches

Progressive cognitive or learning impairments
Children also often experience temporary weakness in one or more of their extremities during strenuous physical activity or when crying.  Adults can also present with brain hemorrhage causing neurologic symptoms in addition to nonhemorrhagic strokes, TIA’s and headaches.


Black out
Confusion
Deafness/Sounds
Electric Shock Feeling
Loss of consciousness
Smell
Spacing out
Out of body experience
Visual loss or blurring
Fear/Panic
Chewing movements
Convulsion
Difficulty talking
Drooling
Eyelid fluttering
Eyes rolling up
Falling down
Foot stomping
Hand waving
Inability to move
Incontinence
Lip smacking
Making sounds
Shaking
Staring
Stiffening
Swallowing
Sweating
Teeth clenching/grinding
Tongue biting
Tremors
Twitching movements
Breathing difficulty
Heart racing

Just remember, this is all textbook information, and we may all have different symptoms from one another, as our individual situations differ.  However, I think it is good to know what the symptoms are. ;

I agree with Stephanie's way of thinking about taking meds.  Hey, "whatever works" is good for me. I'm all about preventive medicine, if possible.  By the way, I   reading your posts, Steph, and hate when you say "I will stop."    I'm thinking in my mind...no, keep going!..continue!  ;

Hope this helps Alisa.  Take care,
Shan

STrantas wrote on Sep 29^th, 2005 at 9:22am:


The whole episode was before I even started working out. So I don't think lack of hydration was an issue; because I drink at least two of those huge Nalgene bottles a day.

You're very welcome Alisa. I myself am learning a lot while trying to help others.  Anyway, I'm thinking that the episode you recently had at the gym sounds a little like what you experienced prior to being diagnosed with MM and your sugery.  To be on the safe side, can your doctor offer you any tests to find out more about what exactly what it was that you experienced?  I know he increased your Keppra, but did he order any tests?  Have you had any follow-ups tests since your surgery (i.e. angiogram, MRI/MRA, etc?)  I don't want to scare you or anything...I'm just wondering.  Your incident frightens me too, and I'd rather be safe and look into what triggered it, that's all.  

Take care,
Shan

Thanks for all your advice Stephanie.

But as I am very blessed to not have a very extreme case of moyamoya, and did not have any headaches or symptoms immediately after surgery. The first sign I've had of a symptom is what happened to me in August. So if I can get by on as little medication as possible I would like to. Plus, I don't want to be messing around with meds when I am trying ever so hard to get back to college in January, because I could deal with a job and taking lots of different meds, but in college you need to be on top of your game and not be taking 4 hour naps in the middle of the day, every day

Hi Alisa,

I'm curious about your experience with Dilantin, if you don't mind sharing.  I am slowly being weened off of it and am now down to 200 mg per day. (I was on 400 mg per day).  I am also taking Zonegran.

Alisa Quote:


Thanks,
Shan

Shan wrote on Sep 29^th, 2005 at 7:55pm:


Hey Shan,

I think I was taking 600 mg/day, although I can't be for sure, because my experience with Dilantin was so bad, that as soon as I switched meds I threw it all out.

While I was taking it I was extremely emotional, I would cry at anything and everything. I was depressed, very antisocial, and it makes all day nap time. I was so exhausted all the time, and I tried taking several naps a day, but often times I couldn't fall asleep. Also, I gained about 10 lbs.

I know everyone has different reactions to different meds though. People have some horrible side effects with Keppra, but I don't. Although my neurologist says that the surgeons like to use it, because it has reliable qualities, and it can be used in IVs. But he thinks some of the newer drugs have a lot to offer in the lesser-side-effect department.

If you have any more questions, feel free to shoot me a message or something.

Hi Alisa,
Just a quick word to say that I really sympathise with what you are going through at the moment and to also say that I can relate to your dislike of angios. The first angio I had done was to diagnose my MM and it was singularly the most painful frightening thing I have ever experienced, but since my surgeries I have had others done and they are not so bad, not at all painful apart from the inconvenience of having to lie flat for most of the day. Just to reassure you that if you have to have another angio done, it probably won't be as bad as the first
Moira

Hi Shan,
just replying to your post - My original experience with an angiogram was horrific! When I had to hold my breath, it hurt - it was like an electric shock going off in my head with a major firework display! I also couldn't walk without pain for at least 3 weeks because of the pain in my femoral artery.
They told me the odds of having a stroke during the procedure was roughly 10% and to make matters worse, I was transferred to another hospital to have the procedure done for the day and my husband wanted to be with me when I came out of it as I was so scared, but they told him that I was not at the hospital, and when they found I was at this hospital they made him wait in a totally different section so he was unaware that they had taken me back to my original hospital and he was very upset that he was'nt there for me!!
But when I had another one done about a year later,
there were no flashing lights or pain when the dye was injected so that was a huge plus!! I also didn't have the pain in my legs. (I had this procedure done in a private day hospital but the first one was done in a public hospital, even though I was in a private hospital for the ops)
I was due to have another one about a year or so ago now, but I stalled it off by saying I couldn't leave Chad alone for the day (my 2 year old) and would wait when he was a bit older, but saw my neurosurgeon about 2 months ago and told him I was ready to go for the angio and he told me there was no need,as he only wanted me to have it so he could gloat at his work!! and I was well and truly "cured" and only to see him if I got any symptoms.
So amen to that!!!
Kind regards Moira

Stephanie,

 Sorry,   I couldn't stop myself from ROFLMAO on that one!  

I'll remember your quote when it's time for me to have my second angio...to help "lighten things up"  and distract me ;

Thanks for the visual Steph!  ;
Shan

Hi Alisa,

Quote:


It seems to be standard practice, especially by the surgeons considered experienced in MM, to order an angio between 3 months and 1 year post-op.  It's imperative to see if the graft is patent and/or (depending on the surgery) new blood vessels are forming.  In general to see if there is improved blood flow with no occlusions.  Since you are experiencing some symptoms I would suggest you insist on having some sort of test done whether it's an angio, SPECT or MRA.

I, like others, found the angio to be a lot less painful after my surgery.  I believe it's because before surgery your arteries are occluded hence it's like putting water into a balloon that is already filled near bursting.  After the surgery, when hopefully there are little or no occlusions, the solution just flows right through as it's supposed to.  I have had 3 regular angios and agree that 2 of them (before surgeries) were insanely painful!  Another tip I have, try to get a CT Angio!  I LOVE THOSE!  But, it is a fairly new concept and not all hospitals have the equipment to perform them.  This was just like having a CT scan- no laying around all day, no pain, no puncturing the artery etc.  My hospital, University of Chicago, rarely even uses regular angios anymore since CT angios came there.  The results are just as good, if not better.  In fact, yesterday I got to see my films from my CT angio a month ago.  WOW!  Those films were much more vivid, in 3D and color than my previous angio films.  I was impressed, not to mention I was thrilled not to go through all the regular angio stuff. 

I hope this helps some and I do want to urge you to inquire about some sort of testing considering your recent symptoms.  Sometimes, although rare, the surgery fails or the MM progresses despite surgery (I am one example) so it's important to check on the status of all this if you are having any new or continued symptoms.

Lisa