Guest guest Posted July 17, 2012 Report Share Posted July 17, 2012 Barbara, do you know if narcolepsy is related to TC at all? I was dx with TC August 2010, surgery November. Narcolepsy summer 2011. I'm sorry about your diagnosis, and hopefully you continue to get better. ------------------------------ > > >Good luck Barbara! > >I was recently diagnosed with epilepsy after a 48 hour video EEG. I had a few strange episode over the course of several months where I would find myself somewhere and have no idea how I got there or what I had been doing. I didn't really think of seizures, but maybe a spike in " brain fog " or something... My neuro wanted to rule out seizure activity and I obliged, not thinking much of it but ruling it out... > > I was quite shocked by the amount of activity that I was totally unaware of! (Partial (Focal) simple seizures lasting 2-3 seconds where I would just appear to be staring off into space.) At night, the activity was intensified. I began to have some convulsive episodes shortly thereafter. Another VEEG confirmed left temporal lobe epilepsy. I was diagnosed with intractable epilepsy, partial complex seizures and partial simple seizures. I was quite shocked. > >I've been on medication since April and we are hoping to be able to manage the seizures once we get the right " cocktail " and dosage in my system. While I still have some activity (hence, intractable), I have begun feeling better and the number of complex focal seizures has decreased in frequency. I'm optimistic that we can figure this out with medication and not have to consider surgery. > >Am I the only one that continues to be frustrated with the growing list of " related " conditions commonly found with Chiari and Tethered Cord? It just seems to keep growing. > >Best to you, and let me know if I can help in any way. > >Sara > >CM1 - Decompressed 2010 >Tethered Spinal Cord - Surgical Release 2010 >Syringomyelia - diagnosed (syrinx first visible on MRI) 2009 >Epilepsy - diagnosed March 2012 >All the fun little " extras " that come with those. > > > >> >> On our way to WCHOB for my 6 day VEEG monitoring. Please say prayers & wish me luck that they get to the bottom of this, preferably in less than 6 days!! >> >> Barbara >> >> Sent from my iPhone >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2012 Report Share Posted July 18, 2012 , I do not know. Sent from my iPhone > > > Barbara, do you know if narcolepsy is related to TC at all? I was dx with TC August 2010, surgery November. Narcolepsy summer 2011. > > I'm sorry about your diagnosis, and hopefully you continue to get better. > > > > ------------------------------ > > > > > > > >Good luck Barbara! > > > >I was recently diagnosed with epilepsy after a 48 hour video EEG. I had a few strange episode over the course of several months where I would find myself somewhere and have no idea how I got there or what I had been doing. I didn't really think of seizures, but maybe a spike in " brain fog " or something... My neuro wanted to rule out seizure activity and I obliged, not thinking much of it but ruling it out... > > > > I was quite shocked by the amount of activity that I was totally unaware of! (Partial (Focal) simple seizures lasting 2-3 seconds where I would just appear to be staring off into space.) At night, the activity was intensified. I began to have some convulsive episodes shortly thereafter. Another VEEG confirmed left temporal lobe epilepsy. I was diagnosed with intractable epilepsy, partial complex seizures and partial simple seizures. I was quite shocked. > > > >I've been on medication since April and we are hoping to be able to manage the seizures once we get the right " cocktail " and dosage in my system. While I still have some activity (hence, intractable), I have begun feeling better and the number of complex focal seizures has decreased in frequency. I'm optimistic that we can figure this out with medication and not have to consider surgery. > > > >Am I the only one that continues to be frustrated with the growing list of " related " conditions commonly found with Chiari and Tethered Cord? It just seems to keep growing. > > > >Best to you, and let me know if I can help in any way. > > > >Sara > > > >CM1 - Decompressed 2010 > >Tethered Spinal Cord - Surgical Release 2010 > >Syringomyelia - diagnosed (syrinx first visible on MRI) 2009 > >Epilepsy - diagnosed March 2012 > >All the fun little " extras " that come with those. > > > > > > > >> > >> On our way to WCHOB for my 6 day VEEG monitoring. Please say prayers & wish me luck that they get to the bottom of this, preferably in less than 6 days!! > >> > >> Barbara > >> > >> Sent from my iPhone > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2012 Report Share Posted July 18, 2012 , I am epileptic. Ut dr band my Neuro in atlanta said it was not related. The neurosurgeon at Emory said the same. Mine are grandmal. Good luck. I am mostly frustrated by the episodes of not being able to drive. I have a daughter with developmental delay, epilepsy,asthma, chronic pneumonia. Anyway, it is really tough to get the medical stuff done why i cant drive. Sorry to hear this. Happy 4th of July. Sharon > , I do not know. > > Sent from my iPhone > > > > > > > > > Barbara, do you know if narcolepsy is related to TC at all? I was dx with TC August 2010, surgery November. Narcolepsy summer 2011. > > > > I'm sorry about your diagnosis, and hopefully you continue to get better. > > > > > > > > ------------------------------ > > > > > > > > > > > > >Good luck Barbara! > > > > > >I was recently diagnosed with epilepsy after a 48 hour video EEG. I had a few strange episode over the course of several months where I would find myself somewhere and have no idea how I got there or what I had been doing. I didn't really think of seizures, but maybe a spike in " brain fog " or something... My neuro wanted to rule out seizure activity and I obliged, not thinking much of it but ruling it out... > > > > > > I was quite shocked by the amount of activity that I was totally unaware of! (Partial (Focal) simple seizures lasting 2-3 seconds where I would just appear to be staring off into space.) At night, the activity was intensified. I began to have some convulsive episodes shortly thereafter. Another VEEG confirmed left temporal lobe epilepsy. I was diagnosed with intractable epilepsy, partial complex seizures and partial simple seizures. I was quite shocked. > > > > > >I've been on medication since April and we are hoping to be able to manage the seizures once we get the right " cocktail " and dosage in my system. While I still have some activity (hence, intractable), I have begun feeling better and the number of complex focal seizures has decreased in frequency. I'm optimistic that we can figure this out with medication and not have to consider surgery. > > > > > >Am I the only one that continues to be frustrated with the growing list of " related " conditions commonly found with Chiari and Tethered Cord? It just seems to keep growing. > > > > > >Best to you, and let me know if I can help in any way. > > > > > >Sara > > > > > >CM1 - Decompressed 2010 > > >Tethered Spinal Cord - Surgical Release 2010 > > >Syringomyelia - diagnosed (syrinx first visible on MRI) 2009 > > >Epilepsy - diagnosed March 2012 > > >All the fun little " extras " that come with those. > > > > > > > > > > > >> > > >> On our way to WCHOB for my 6 day VEEG monitoring. Please say prayers & wish me luck that they get to the bottom of this, preferably in less than 6 days!! > > >> > > >> Barbara > > >> > > >> Sent from my iPhone > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2012 Report Share Posted July 24, 2012 Just wanted to add my experience with this. I had grand mal seizures....several during my first MRI. It was these seizures which brought me to get the help I needed. In my case I have had NO seizure activity, at all, in the 21 years since my decompression. I have to believe there was a connection... Sally R......Decompression,'91...VP shunt....2 revisions... doing OK, on NO meds, in Pennsylvania <g> Ps...My " story " is available at http://www.chiariconnectioninternational.com/goodstories2.html Scroll down to " Sally " Re: Re: Possible Seizures , I am epileptic. Ut dr band my Neuro in atlanta said it was not related. The neurosurgeon at Emory said the same. Mine are grandmal. Good luck. I am mostly frustrated by the episodes of not being able to drive. I have a daughter with developmental delay, epilepsy,asthma, chronic pneumonia. Anyway, it is really tough to get the medical stuff done why i cant drive. Sorry to hear this. Happy 4th of July. Sharon > , I do not know. > > Sent from my iPhone > > > > > > > > > Barbara, do you know if narcolepsy is related to TC at all? I was dx > > with TC August 2010, surgery November. Narcolepsy summer 2011. > > > > I'm sorry about your diagnosis, and hopefully you continue to get > > better. > > > > > > > > ------------------------------ > > > > > > > > > > > > >Good luck Barbara! > > > > > >I was recently diagnosed with epilepsy after a 48 hour video EEG. I had > > >a few strange episode over the course of several months where I would > > >find myself somewhere and have no idea how I got there or what I had > > >been doing. I didn't really think of seizures, but maybe a spike in > > > " brain fog " or something... My neuro wanted to rule out seizure > > >activity and I obliged, not thinking much of it but ruling it out... > > > > > > I was quite shocked by the amount of activity that I was totally > > > unaware of! (Partial (Focal) simple seizures lasting 2-3 seconds where > > > I would just appear to be staring off into space.) At night, the > > > activity was intensified. I began to have some convulsive episodes > > > shortly thereafter. Another VEEG confirmed left temporal lobe > > > epilepsy. I was diagnosed with intractable epilepsy, partial complex > > > seizures and partial simple seizures. I was quite shocked. > > > > > >I've been on medication since April and we are hoping to be able to > > >manage the seizures once we get the right " cocktail " and dosage in my > > >system. While I still have some activity (hence, intractable), I have > > >begun feeling better and the number of complex focal seizures has > > >decreased in frequency. I'm optimistic that we can figure this out with > > >medication and not have to consider surgery. > > > > > >Am I the only one that continues to be frustrated with the growing list > > >of " related " conditions commonly found with Chiari and Tethered Cord? > > >It just seems to keep growing. > > > > > >Best to you, and let me know if I can help in any way. > > > > > >Sara > > > > > >CM1 - Decompressed 2010 > > >Tethered Spinal Cord - Surgical Release 2010 > > >Syringomyelia - diagnosed (syrinx first visible on MRI) 2009 > > >Epilepsy - diagnosed March 2012 > > >All the fun little " extras " that come with those. > > > > > > > > > > > >> > > >> On our way to WCHOB for my 6 day VEEG monitoring. Please say prayers > > >> & wish me luck that they get to the bottom of this, preferably in > > >> less than 6 days!! > > >> > > >> Barbara > > >> > > >> Sent from my iPhone > > >> > > >> Quote Link to comment Share on other sites More sharing options...
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