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It's Been a Long Time... Hello Again
mysngs2u posted:
Hello WebMD Community,
And hello Candi, so glad to see you are still a constant on this board. You may not remember me but I certainly remember you. I believe it was you who got my name about 10 years ago when we did a "secret" santa one year on this board and you sent me some very cute elephant figurines.
I've been in and out of this board over the past 13 years. When things have been really rough I found great solace in my friends here. And so I come to you again now.
Amazingly enough I had been seizure free for the past three years and off my medication for the past two up until this past July when my auras returned. (I have partial complex seizures that affect my right arm. They happen usually in my sleep or in the early morning and last about 15 seconds. Doctors have never been able to tell me what causes my seizures.) About a month ago I had a seizure while at the airport and discussed this with my neurologist about two weeks ago. He suggested I go back on my Topamax which was the last drug I was on and the one which had worked the best for me. I have now worked my way up to 100mg twice a day in the past weeks.
I immediately noticed side effects of stomach bloating and IBS type symptoms as well as dry mouth and just constantly feeling thirsty. In hindsight these side effects occurred when I was previously on the medication but I never realized they were actually a side effect because it took them quite a while to develop. (about a year)
I think for me what is the most frustrating is that for a couple years I actually thought I outgrew the seizures and that they were a childhood disease. I'm just now coming to terms that this is something I have to manage for the rest of my life.
At any rate I just wanted to check myself back in to the board here and for any newbies out there let you know you aren't alone and that this board is a great resource and support system.
-Lauren
And hello Candi, so glad to see you are still a constant on this board. You may not remember me but I certainly remember you. I believe it was you who got my name about 10 years ago when we did a "secret" santa one year on this board and you sent me some very cute elephant figurines.
I've been in and out of this board over the past 13 years. When things have been really rough I found great solace in my friends here. And so I come to you again now.
Amazingly enough I had been seizure free for the past three years and off my medication for the past two up until this past July when my auras returned. (I have partial complex seizures that affect my right arm. They happen usually in my sleep or in the early morning and last about 15 seconds. Doctors have never been able to tell me what causes my seizures.) About a month ago I had a seizure while at the airport and discussed this with my neurologist about two weeks ago. He suggested I go back on my Topamax which was the last drug I was on and the one which had worked the best for me. I have now worked my way up to 100mg twice a day in the past weeks.
I immediately noticed side effects of stomach bloating and IBS type symptoms as well as dry mouth and just constantly feeling thirsty. In hindsight these side effects occurred when I was previously on the medication but I never realized they were actually a side effect because it took them quite a while to develop. (about a year)
I think for me what is the most frustrating is that for a couple years I actually thought I outgrew the seizures and that they were a childhood disease. I'm just now coming to terms that this is something I have to manage for the rest of my life.
At any rate I just wanted to check myself back in to the board here and for any newbies out there let you know you aren't alone and that this board is a great resource and support system.
-Lauren
3 Replies |Watch This Discussion | Report This| Share this:It's Been a Long Time... Hello AgainHello WebMD Community,<br /><br />And hello Candi, so glad to see you are still a constant on this board. You may not remember me but I certainly remember you. I believe it was you who got my name about 10 years ago when we did a "secret" santa one year on this board and you sent me some very cute elephant figurines. <br /><br />I've been in and out of this board over the past 13 years. When things have been really rough I found great solace in my friends here. And so I come to you again now.<br /><br />Amazingly enough I had been seizure free for the past three years and off my medication for the past two up until this past July when my auras returned. (I have partial complex seizures that affect my right arm. They happen usually in my sleep or in the early morning and last about 15 seconds. Doctors have never been able to tell me what causes my seizures.) About a month ago I had a seizure while at the airport and discussed this with my neurologist about two weeks ago. He suggested I go back on my Topamax which was the last drug I was on and the one which had worked the best for me. I have now worked my way up to 100mg twice a day in the past weeks.<br /><br />I immediately noticed side effects of stomach bloating and IBS type symptoms as well as dry mouth and just constantly feeling thirsty. In hindsight these side effects occurred when I was previously on the medication but I never realized they were actually a side effect because it took them quite a while to develop. (about a year) <br /><br />I think for me what is the most frustrating is that for a couple years I actually thought I outgrew the seizures and that they were a childhood disease. I'm just now coming to terms that this is something I have to manage for the rest of my life. <br /><br />At any rate I just wanted to check myself back in to the board here and for any newbies out there let you know you aren't alone and that this board is a great resource and support system. <br /><br />-Lauren
dancer86442 responded:
Hello Lauren! Welcome Again! And of course, I am Still Here! 
This is My Home! 
WOW 10 yrs ago??? Seems a Lifetime. I guess since you have been 'Lurking' maybe you know we have only had 1 other 'secret Santa' event. And Yes, if you got Elephants, they were from Me! BTW: I found Heather (who Started that event) on FB & she started an EP Land Group for Me. Such a Great Lady!
I hate to hear that you are experiencing problems Again.
As for the Side Effects of the Topamax, well, you Do Know you Don't have to Tolerate this! But, IF it is controlling your seizures, then I do have a suggestion. Start noting, Daily, what you Eat or Drink! I was experiencing the same problems, a few yrs ago. I discussed the IBS w/ my Neuro & found that there is such a thing as Abdominal Seizures. So, I started Watching what I ate/drank. I Thought Sour Cream was My Trigger. A small amount was OK. But, I was mixing it to use as a Dip for chips. When I added Ranch Dressing, I had some really Bad experiences/ Problems. But, eating too much Sour Cream Dip, mixed w/ onions, triggered them, also. Just not as Bad. It was sooo awful, I couldn't even Stay on the Throne. I would feel Nauseated to the point where I felt I was gonna fall off the throne. I laid down in the Tub to avoid a mess on the floor. It seemed like Gallons of Liquid Poured out of me. These 'episodes' would last 45 min to an hr. Then all I wanted to do was Sleep. Exhausted!
Was your seizure at the airport a CP or Gran mal/Tonic-clonic?
Lauren, I am worried about my Son, now. He has been experiencing muscle Spasms & tics/twitches in his Left arm. And when bagging groceries he throw things to his rite hand & Drops them. I am hoping/praying that he has just Pinched a Nerve. But, My Gut says UHUH! He hasn't seen a Doc yet. Gotta get Dad to call & see if he is Still on our Insurance. Then I will Insist he gets a Full workup! Gonna be Tough to Do! He is 23. Gonna be 24 on Halloween. And Most Men Just Don't Like to Admit they have Problems that Require Medical Attn!
Lauren, Thank You for re-joining us. I Know you already Know Support is the Best way to deal w/ Epilepsy. Know I am here for You! HUGS!
Love Candi
This is My Home! WOW 10 yrs ago??? Seems a Lifetime. I guess since you have been 'Lurking' maybe you know we have only had 1 other 'secret Santa' event. And Yes, if you got Elephants, they were from Me! BTW: I found Heather (who Started that event) on FB & she started an EP Land Group for Me. Such a Great Lady! I hate to hear that you are experiencing problems Again.
As for the Side Effects of the Topamax, well, you Do Know you Don't have to Tolerate this! But, IF it is controlling your seizures, then I do have a suggestion. Start noting, Daily, what you Eat or Drink! I was experiencing the same problems, a few yrs ago. I discussed the IBS w/ my Neuro & found that there is such a thing as Abdominal Seizures. So, I started Watching what I ate/drank. I Thought Sour Cream was My Trigger. A small amount was OK. But, I was mixing it to use as a Dip for chips. When I added Ranch Dressing, I had some really Bad experiences/ Problems. But, eating too much Sour Cream Dip, mixed w/ onions, triggered them, also. Just not as Bad. It was sooo awful, I couldn't even Stay on the Throne. I would feel Nauseated to the point where I felt I was gonna fall off the throne. I laid down in the Tub to avoid a mess on the floor. It seemed like Gallons of Liquid Poured out of me. These 'episodes' would last 45 min to an hr. Then all I wanted to do was Sleep. Exhausted! Was your seizure at the airport a CP or Gran mal/Tonic-clonic?
Lauren, I am worried about my Son, now.
He has been experiencing muscle Spasms & tics/twitches in his Left arm. And when bagging groceries he throw things to his rite hand & Drops them. I am hoping/praying that he has just Pinched a Nerve. But, My Gut says UHUH! He hasn't seen a Doc yet. Gotta get Dad to call & see if he is Still on our Insurance. Then I will Insist he gets a Full workup! Gonna be Tough to Do! He is 23. Gonna be 24 on Halloween. And Most Men Just Don't Like to Admit they have Problems that Require Medical Attn! Lauren, Thank You for re-joining us. I Know you already Know Support is the Best way to deal w/ Epilepsy. Know I am here for You! HUGS!
Love Candi
Report This| Share this:It's Been a Long Time... Hello AgainHello Lauren! Welcome Again! And of course, I am Still Here! <img src="http://img.webmd.com/community/images/wink.gif" align="top" border="0"> This is My Home! <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> WOW 10 yrs ago??? Seems a Lifetime. I guess since you have been 'Lurking' maybe you know we have only had 1 other 'secret Santa' event. And Yes, if you got Elephants, they were from Me! <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> BTW: I found Heather (who Started that event) on FB & she started an EP Land Group for Me. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> Such a Great Lady! <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> <br /><br />I hate to hear that you are experiencing problems Again. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> As for the Side Effects of the Topamax, well, you Do Know you Don't have to Tolerate this! But, IF it is controlling your seizures, then I do have a suggestion. Start noting, Daily, what you Eat or Drink! I was experiencing the same problems, a few yrs ago. I discussed the IBS w/ my Neuro & found that there is such a thing as Abdominal Seizures. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> So, I started Watching what I ate/drank. I Thought Sour Cream was My Trigger. A small amount was OK. But, I was mixing it to use as a Dip for chips. When I added Ranch Dressing, I had some really Bad experiences/ Problems. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> But, eating too much Sour Cream Dip, mixed w/ onions, triggered them, also. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> Just not as Bad. It was sooo awful, I couldn't even Stay on the Throne. I would feel Nauseated to the point where I felt I was gonna fall off the throne. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> I laid down in the Tub to avoid a mess on the floor. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> It seemed like Gallons of Liquid Poured out of me. These 'episodes' would last 45 min to an hr. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> Then all I wanted to do was Sleep. Exhausted! <br /><br />Was your seizure at the airport a CP or Gran mal/Tonic-clonic? <br /><br />Lauren, I am worried about my Son, now. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> He has been experiencing muscle Spasms & tics/twitches in his Left arm. And when bagging groceries he throw things to his rite hand & Drops them. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> I am hoping/praying that he has just Pinched a Nerve. But, My Gut says UHUH! <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> He hasn't seen a Doc yet. Gotta get Dad to call & see if he is Still on our Insurance. Then I will Insist he gets a Full workup! Gonna be Tough to Do! He is 23. Gonna be 24 on Halloween. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> And Most Men Just Don't Like to Admit they have Problems that Require Medical Attn! <br /><br />Lauren, Thank You for re-joining us. I Know you already Know Support is the Best way to deal w/ Epilepsy. Know I am here for You! HUGS! <br /><br />Love Candi
Haylen_WebMD_Staff replied to dancer86442's response:
Hi Candi - I can understand your concern about your son! Just got an email that a new article published about pinched nerves if you'd like to do a little research: Causes, symptoms, and treatment of a pinched nerve, aka compressed nerve .
Please keep us updated and give him a "Happy Birthday" from the Epilepsy Community! A Halloween baby - what a special "treat"!
Haylen
Please keep us updated and give him a "Happy Birthday" from the Epilepsy Community! A Halloween baby - what a special "treat"!
Haylen
Report This| Share this:It's Been a Long Time... Hello AgainHi Candi - I can understand your concern about your son! Just got an email that a new article published about pinched nerves if you'd like to do a little research: <a href="http://www.webmd.com/pain-management/guide/compressed-nerves">Causes, symptoms, and treatment of a pinched nerve, aka compressed nerve</a> .<br /> <br />Please keep us updated and give him a "Happy Birthday" from the Epilepsy Community! A Halloween baby - what a special "treat"!<br /> <br />Haylen
Haylen_WebMD_Staff responded:
Hi Lauren -
I'm the community moderator here and am constantly blown away by how smart and supportive this board is - welcome back!
Please let me know if you have any problems posting or if you'd like me to research somthing for you. I don't have ep and am not as smart as Candi but I'm a master at locating resources
Thank you for your message to the newbies!
Haylen
I'm the community moderator here and am constantly blown away by how smart and supportive this board is - welcome back!
Please let me know if you have any problems posting or if you'd like me to research somthing for you. I don't have ep and am not as smart as Candi but I'm a master at locating resources
Thank you for your message to the newbies!
Haylen
Report This| Share this:It's Been a Long Time... Hello AgainHi Lauren - <br /> <br />I'm the community moderator here and am constantly blown away by how smart and supportive this board is - welcome back! <br /> <br />Please let me know if you have any problems posting or if you'd like me to research somthing for you. I don't have ep and am not as smart as Candi but I'm a master at locating resources <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> <br /> <br />Thank you for your message to the newbies! <br /> <br />Haylen
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