I just took Mandy to a new neurologist as her old one left the practice and we are weening her off of carbatrol a seizure med and he said not to let her take baths as opposed to showers and not to be in high altitude, I thought that was interesting. Of course we're flying to Arizona Sat. for the NFC playoff game once in a lifetime thing E. A. G. L. E. S. anyway sorry got side tracked, we almost never travel so she will go to her regular dosage until she returns, what timing, on the other hand he told her she has MM and had strokes because she's overweight. :o He has 10 patients he has seen before and they have all been stroke free since they're MM diagnosis because they have been watching they're diet, Mandy has been stroke free for 6 yrs. he said thats good! I drove an hour each way for that so we could get a prescription refill.I didn't know if I wanted to laugh in his face or punch him in it, I just said I disagree and we left, it was the end of the 15 whole minute appointment anyway. My point in posting this is for the people that come to this website that have had doctors telling them nothing can be done and basically giving them incorrect information. If it doesn't sound right to you and your gut doesn't feel like the info. you been given makes sense or doesn't feel right question it and above all get another opinion.
                                        Nancy

Nancy, I'm confused.  Did your daughter have MM surgery?  

Donna

Nancy,

Are you weaning her off her seizure meds because this new doctor said to or what?? I sure hope not, from what you just explained, I’d be afraid to listen to one word this doctor had to say as far as MM goes. Mandy was not over weight when she had her strokes (IMO) so this guy is way off.

You also said this doctor had 10 MM patients and they all have been stroke free since they're MM diagnosis. Do you mean they’re stroke free without surgery, and it’s because they are dieting? You’ve got to be kidding me! I really heard some lu lu’s, but this one takes the cake. I know your diet plays an important role for good health, but to say it prevents stroke with MMD is ludicrous, IMO. I certainly hope you’re looking into yet another neurologist for Mandy. There’s got to be one decent neuro down there that can monitor her case.

Mar

Sorry Donna I'm an old timer I've been on here since this site started but haven't posted on in a long time cause we bought a buisness and it consumed our lives but we've sold it so I'm back. Yes Mandy had surgery in 2003 by Dr. Steinberg in Ca. after having 4 strokes. No Mar I decided with Mandy's Botox Dr. to ween her cause I don't think she needs it anymore she only had one seizure 4 yrs ago and it was a mild one. I would't take advise from that Neuro. for all the tea in china, I fought to not have to go see him cause I knew what would happen. He didn't say if the other patience had surgery or what I didn't really care to be honest I just wanted to get out before I got myself in trouble. She still takes gabapentin which is a mild seizure med so she still is taking something. The carbatrol just has such herrific side affects I would rather take her off if she really doesn't need it. Sorry I wasn't clear I was so ticked off when I came back and posted.


                                        Nancy

Happy to report Mandy has done well and is off her seizure med and has had no affects thank God! So far so good, one less pill. ;D
                                                   Nancy

Hey Nancy

Glad to hear Mandy is doing so well after your decision to take her off some meds.

From what you mention here, the Dr who suggested dieting could control mm sounds wrong. None of my research indicates this. This just highlights the need for moyamoyaers to see Dr's with moyamoya experience.

Maybe you should name this doctor so others don't waste their time and risk their lives?

Strength to Mandy
Mark (Luca's Dad)

Hi, my name is Claris and I had two surgeries ( October 6 and Nov. 24, 2009) after having been diagnosed with MM while I was studying in Glasgow, Scotland.  We found a neuro-surgeon in Berlin who has done such kind of surgery for MM patients.  I went backk and recovered in California for 4 months. I'm now back in Glasgow working on my dissertation but I started experiencing TIA again.  Is this an expectexc post surgery episode?

Hi Claris,

I’m not a doctor and I’m not an authority to say whether you should or shouldn’t stay on certain seizure medication, but I can say that over the years I’ve seen so many MM patients suddenly have a wide variety of different types of seizures that can come out of nowhere. I don’t know why, but some are prone to seizure activity, and they come in all forms, so it could be dangerous to go off seizure meds. Also, it’s important to note that in many cases some patients don’t even know they’re having a seizure. You can have them in your sleep; they could simply be a stare or a change in vision or speech and only last seconds. There are so many different types, and they can come on suddenly for different reasons, perhaps from an infection of some sort, stress, dehydration, other medications etc and not to mention surgery and MMD itself. Follow-up testing to make sure everything is as it should be is a must as well.

You can discuss your concerns and the side effects you’re having with your neurologist who knows your specifics and MMD. Perhaps another seizure medication may be a possibility, but please keep all that in mind before you consider going off any meds by yourself.

Mar

Hello to all~

Tis is just my recent experince, it may not be the same for everyone.

A week ago I saw my neurologist about possibly getting off the anti seizure meds.
Ten years past first stroke, plus a date with Dr. Steindberg (2000), with no obvious seizures (Mar is right about 'hidden seizures') and only one odd time of loosing my time/space awareness for about two minutes (terrifying minutes back in 2007)) that sent my husband and I trotting back to the neurologist  ---where he upped my anti seizure meds, I decided to find out about withdrawing from the anti seizure meds.   Icky side affects, etc...I constantly feel 'stupid, but maybe I actually am!!!

During our recent discussion it became clear to me (and Jack) that since I have a history of migraines (there may be a connection to seizures, in my mind), presented only 1/2 a functional brain to Steinberg, had surgery, the black out time, and mm  affects are  still so unknown, it wouldn't be prudent to go off the meds. I cold change meds or lover them a bit,,,,,,, Since I am a functional person who can drive, etc, I decided not to jeopardize all I am able to do.

Came away with a strong and positive feeling of who I am, what I can do, and knowledge of how life is for me. I'm happy and please and proud to still be alive and on this mm path with you all, stupid or not!



Linda (LA)

Linda,

I personally can’t imagine how seizure meds must make a person feel, but I figure even the slightest side effect must be frustrating with all you’ve been through with your strokes and all, and yet through all that, you fought back like a warrior. That’s amazing and brilliant in my book, so I can positively state you’re far from stupid!! Your wise reasoning of why you stay on your seizure meds only proves my point. I couldn’t have said it better myself. You go girl!

Mar