Nothing working - please help me out!!!

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PBABYG81
New Member


Date Joined Jan 2005
Total Posts : 10
   Posted 1/27/2005 1:50 PM (GMT -7)   
Hello Everyone!  I have had complex partial seizures for as long as I can remember but did not know what they were and was not diagnosed until 2001 when I got into a car accident.  Since then I have gotten into 3 more (nothing to injure myself or anyone else believe it or not)!  Just some trees!!!  Aside from that I also have Diabetes and hyperthyroidism which might have something to do with it all but who knows.
 
But anyways, since then I have been thru 2 doctors and at least 5 different meds.  Right now I am on 200mg of Topamax a day and 400mg of Lamictal.  And even at these doses I am still having sparatic seizures.  NOTHING IS WORKING!
 
SO...here is my situation at the moment...I am 24 years old...getting married April 2, 2005. I cannot drive which has been putting my life in hell - Having to inconvience my parents and my fiance everytime I needed to go somewhere.  And when I WANTED to go somewhere I couldn't. I have been isolated in my house.  The question of where am I going to work when I get married is still an unsolved mystery b/c I do not have my retired father to escort me around. 
 
I just do not have an answer to anything....Sorry I just had to vent there for a minute.
For those of you who do not drive how do you do it?  I cannot do anything!!  Where my house is there really is no public transportation.  I need to get these seizures killed!  Is there anyone out there who had success with anything?
 
 

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/27/2005 2:38 PM (GMT -7)   
HI and welcome! Vent anytime! It is frustrating when seizures change you life so much! The good part is that you seem to have a supportive fiancee and parents! I know it is tough to have to rely on them for rides, though. Hang in there.

Have you tried seeing an epilepsy specialist? If you can see an epileptologist, sometimes they are able to help get things better controlled.

Look into surgery or the Vagus Nerve stimulator? FOr some people these can bring controll when nothing else does. Other people have some luck with trying a modified DOCTOR RUN Atkins program.

Phoebe
Regular Member


Date Joined May 2004
Total Posts : 21
   Posted 1/27/2005 11:22 PM (GMT -7)   
Hello, What kayakmom wrote about the Epileptologist is great! Since the meds have not stopped your seizures, there is little chance that any of them will based on the statistics. Once one med fails to stop the seizures, there is less than a 15% chance that any of them ever will. That is a known, proven fact. They only decreased the quality of my life and didn't stop my seizures. My diagnosis is the same as yours.  I had surgery 6 years ago but had seizures for more than 30 years before I learned there were specialists who treated nothing but Epilepsy. A Comprehensive Epilepsy Center at a major Medical Center is where you will find Epileptologists. The fact that you have the medical problems you do tells me you really need a good Medical doc right in the middle to determine if there is a Medical cause for your siezures. That is possible since there are so many different causes. One cause I remember has to do with the inability of the glucose molecules to cross into the brain cells. Also, when you have an EEG, it is good to have an EKG at the samw time to see if there is a connection. Some people have seizure activity due to a cardiac reason. There are treatments out there such as the VNS as was mentioned and surgery too. If you are a candidate, you stand a good chance of becoming seizure free or may enjoy a much better quality of life. I sure did. If your doc is a general neurologist, tell your Medical doc, your PCP, that you want to be referred to a Comprehensive Epilepsy Center. You choose the one you go to and base it on the quality of care they provide only. They are not all the same. Your doc will receive reports from the Epileptoogust for havinf rferred you. He needs to know what is happening since what his treatments also can affect your seizures. The general neuro will probably not refer you and may try and deter you from going. It is your life though, not his/hers. I hope this helps, and I know how you feel. I am glad you do have the support you do. I have not lost consciousness due to a seizure since surgery and recently started college again to finish what I started years ago. Phoebe

Post Edited (Phoebe) : 1/27/2005 11:28:44 PM (GMT-7)


DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 1/30/2005 6:58 PM (GMT -7)   

((Hugs))  I can relate to your frustrations.  I'm 34 and had my first grand mal when I was 1 that ended me up in the hospital.  I had no other sz's until I was 6 and started having complex partials.  Mine went years untreated because the neuros my mom took me to could never catch any sz activity on an eeg and they were hesitant to prescribe any meds without an abnormal eeg.  So I went years suffering sz's without any treatment.  When I was 19 I had another grand mal sz and finally got on meds.  When I was 22 I had my third grand mal and ended up in the hospital again.  At that point they took my license.  That was awful.  My husband had to drive me around everywhere and I had to rely on friends and family for everything.  I've had two brain surgeries to control my sz's and as of yet nothing medically has been able to get my sz's under control.  I also have 3 girls who are 10,7 and 4 and it makes life difficult sometimes because of my inability to drive.  And an Epileptologist is definitely something you should look into.  I never got any help until I found mine 7 years ago.  He was a lifesaver.  He's the first Dr that ever aggressively pursued getting my sz's under control.  He recently retired and til the last day he saw me he continued to want to help get my sz's under control.  There are so many more treament options available now but alot of times it takes getting the right Dr to make those options available to you.  I hope you're feeling better and just know that we all can definitely understand  what you're going through.

Christine

   


michbud90
Regular Member


Date Joined Nov 2003
Total Posts : 34
   Posted 1/31/2005 3:27 PM (GMT -7)   

I just wanted to add that I too never knew there were special docs that only delt with this problem. I have went for years with nuroligist's just saying I don't know why you have seizures, here take this..... Well 4 docters later and 5 meds and lots of years, I have a nuroligist that has helped me more than ever. First he to has taken his turn putting me on diffrent meds, but my apt last week he said that we have pretty much tried all the meds we can try, right now all we are doing is ruining my memrey( i can't spell either)!!!!!!So he said he was sending me to a specialist!!!! I was shocked, he said that nuroligist can only give you meds, they really can't go farther that that. So I have an apt with a specialist on feb. 17th, to discuss vns theropy and surgery. So maybe you should ask your docter @ vns theropy... if you look it up on line there is even a phone number for a consult and info on vns theropy.

lots of huggggggggggggssssssssssssss..........................

                                                     michelle

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