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michbud90
Regular Member


Date Joined Nov 2003
Total Posts : 34
   Posted 2/17/2005 11:02 AM (GMT -7)   
I am getting ready to go to a neuroligist specialist today. I never knew they had other neuroligist.I guess this one is someone who will do what test nessary to find out what to do next. I have been on dilanton, tegratol, carbatrol, lamictal, keppra, thebest one so far is keppra.although I am on 200mg of lamictal and 1000mg of keppra..... so needless to say I don't know how I feel or think any more...lol so it has been 15yrs and my memory is shot, and for all I know I probably had them all my life (complex partial) just did'nt know that all the time I spaced out reallybad withshallow breathing, it might have been???? Now that I am more educated in the fact with a few grandmal under my belt....I am feed up. I just want to remember things again!!!! I have a 10yr old daughter and a 15 yr old daughter and a husband for 15yrs, they are my memory!!! I just want to remember how the holidayswere....you know.
So here I go to san fransisco,2hours away,(not driving) and see what he has to say...keep your fingers crossed and pray!!!!!
Thank you for being here for me to share my thoughts!!!!!!
huggggggggggggsssssssssssssssssssss..............................
                                                 michelle

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/17/2005 1:50 PM (GMT -7)   
Michelle, best of luck. I hope the appointment goes very well and that there is help for you!!

c.michele
Regular Member


Date Joined Feb 2005
Total Posts : 32
   Posted 2/17/2005 8:14 PM (GMT -7)   
Hi Michelle,
I sure can relate to "wishing I could remember". I think I miss that the most. It's hard to hear your kids tell story's of your life and you can't remember all the details. My family and husband have been very supportive, which makes all the difference in the world. I can honestly say seizures have robbed a little of my confidence as well. I have always been very sharp minded and creative, which has greatly deminished since all this began. Although, I have read about some people becoming more creative with seizures. Surprisingly, I started to write poetry and have had 2 published. I've yet to write anything about seizures.

About the medications..... I know lots of neuro's like to use combo drugs for better control. I've tried Depakote which sent me into outer space for 2 days with my first dose. Topomax made my face feel numb and as silly as it sounds, while I was on it I felt like someone was pulling my face off along with it giving me headaches. The most safe and effective drug for me has been Lamictal and I see you're on it also. I'm now at 700mg and as of a few weeks ago was controlled. But uncontrolled for the last few weeks so dose has been bumped up to 750mg.
I found it interesting to hear someone on the site say how barometric pressure changes have caused seizures, because we've had some crazy weather here in the past few weeks.

Hope all goes well with your visit!
cm

michbud90
Regular Member


Date Joined Nov 2003
Total Posts : 34
   Posted 2/18/2005 12:21 AM (GMT -7)   

Thank you all for the support!!!! Well after a long day.... and lots of questions later, we are going to wait for ins. approval to do a series of test that will take 3 to 7 days. During this time I will be at a hospital in S.F that is designed for this thing. He says it will be like home, just very monitored. He wants me to have at least 3 seizures while I am there, by tapering me off my meds. This wayhe can find what side of the brain they are from.He says because of the memory problems, it is most likely the temeral lob which affects the memory. Then we will or he will decide if I am a canidate for brain surgery or vns theropy. Basically enough meds, now lets fix things.... yeah, finally some doc's in my life who are here to help me and not just medicate me!!! Yes don't get me wrong I am scared and nervous @ all areas of what is to come, but to be seizure free and able to think clearly.... well I think that speaks for it self!!!!

Once again, thank you for being here!!!! You are my support system!!!!! I will keep you posted, and please do the same!!! I like to here how your doing....

lots of huggggggggggggggsssssssssssssssss..............................

                                           michbud90@hotmail.com

                                                          michelle xo


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 2/18/2005 6:21 AM (GMT -7)   
Glad things went well and hope everything works out with your insurance. HUGS to you. Tracy
 


Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 2/18/2005 7:10 AM (GMT -7)   
Hi Michelle,
 
Glad you are moving forward... Your story sounds so much the same as mine.. 15 years, and here we are looking into brain surgery !! But I feel the same as you... I am tired of having my kids and husband think for me.... as far as the damage being done in your temp lobe... that is where my problem is... it is in the left temp lobe.... I was on the same meds as you also over the 15 year span... except dilantin..that is one I never tried,.,but there was others besides that I have,... tegretol was the best for me for 10 years , but it really screwed up my memory....It is known for that,,...
 
The Keppra has been good for me also, as far as seizure control, but I could not go up to 1000mg, it freaked me out... I tried so many times to up the dose, and my body could not handle that amount of meds..along with the Zonegran... But the Keppra definetly makes my mind like a short fuse......I have no attention span, and very bad temper... just a very anxious, just not right.... and having 3 kids, the same age as yours about.... with one other 8 year old, a person cant be like that.....
 
Well , I just wanted to wish you the best... :-) ... Have patience..... everything can take time... I went in last year for evaluation, and it fell through, So just  go with the flow basiclly..... There are other tests that would need to be done besides the stay at the hospital, like a WADA, a neuropsychological, an MRI, maybe a MEG ....depending on your situation of course....
 
Have you had a recent MRI ???  My most recent one, was amazing how much more defined it was compared to years ago, it was so clear it was amazing !!!!
 
I am going in , the end of March for my Stay.. Horray... no laundry for 5 days !!! Sure, I will come home and it will probably still be there !!! nono ......
 
If there are any questions about the stay, ask, there really isnt much to know, but I know, there are always questions, I wish I would have asked last year !!!
You can always mail me at     Dazy1989@yahoo.com
if I can help you any....
Feel good :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 2/20/2005 12:27 AM (GMT -7)   

Hi Michelle,

I'm rather new to the forum.  I just wanted to say I can really relate to your situation.  I've had a video EEG last Sept and will probably be scheduled for another one soon, and the rest will follow....

  But you just have to keep thinking about the positive aspect of surgery - that if you have a chance of a cure - here it is.  I mean, how good is that!  A chance of a cure...I have to tell myself that all the time when I think of going to surgery.  Keep thinking positive thoughts! 

Try to do some stress relieving activities and take some nice brisk walks before you do go into the hospital.  They don't let you go too far while they are monitoring you for seizures.  Unfortunately, when I was in the hospital there really wasn't much to do.  I  couldn't really take a walk down the hall or anything.  Just ride on an exercise bike.  Not very interesting.  So get in a little exercise before you eventually go.   Good Luck with the insurance!  Glenda   

 


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/20/2005 9:22 AM (GMT -7)   
Michelle, I am so glad that the appointment went so well!! Hoping the monitoring goes equally well and you can find real help!!

michbud90
Regular Member


Date Joined Nov 2003
Total Posts : 34
   Posted 2/20/2005 2:15 PM (GMT -7)   
Oh my gosh last night was so rough.... at @ 6pm I got this pain in my right temple that traveled to the back crown area... This happened 3 times with the last one on the left side, it was so quick and painful it took my breath away. I thought I was going to have a granmal..... I then tried to not panic, after that and I cought my breath, I realized I would be ok, then the ringing in the ears started and the headache!!!! Then I stayed dizzy for a while. I don't know what happened!!! It was like I was having a seizure but the meds would'nt let it go full blown????? It sucked really bad!
Any way I think thats what happened, he has upped my lamictal 100mg so maybe that is just a side effect that will go away with time?
I was then up all night! I had anxiety really bad and could not realax!!! I took 2 baths and finally fell asleep @3:30 am. Then awake at 6am.... So now I am tired and just taking it easy today......
Just needed to vent a little. Sorry if I rambled......
Thank you for being here!!!
hugggggggggggggggssssssssssssssss..........................
                                           michelle

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 2/20/2005 6:27 PM (GMT -7)   
Michelle- you're not rambling! If you feel like the increased lamictal dose is causing you to have these symptoms, then don't hesitate to call your doc if things are not settling down and relate your symptoms. There isn't any reason you have to suffer. You are probably sleep deprived on top of everything and anxious to boot due to your recent visit! And of course, DEFINITELY relax! Maybe some herbal tea? (((((BIG HUG, Michelle)))))!!! - Glenda
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


michbud90
Regular Member


Date Joined Nov 2003
Total Posts : 34
   Posted 2/20/2005 7:46 PM (GMT -7)   

Thanks Glenda, I did some camameal(cant spell that) tea last night and will do the same tonight. I have vicodine for my other (colitis/ileostomy) and I took one of those today for some cramps and it helped me settle down a little. Wish me luck tonight...lol

lots of hugggggggggggssssssssssss..........................

                                 michelle

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