I've also posted on other E forums and no feedback/replies yet, so here goes. I really am seeking thoughts on medications for SPS and if worth the bother. My sole seizure experience is that of a sensory nature-sudden onset of a burning smell. Once I have the seizure, the burn smell persists all day. I have never lost awareness during a seizure, no motor symptoms, just olfactory, which then affects taste too. But no other type of seizure, solely SPS. In March this year, I was started on Keppra and currently I am on 3000 mg daily/I initiated a seizure log, and I have had periods of "moderate" reduction of episodes which made me ponder that the Keppra might be helping, including a September total of 13 seizures (as opposed to my usual 15-20, though more like 19-20!).Neuro now pushed me back to every 3 months from every 6 weeks, maintaining me on the 3000 mg dose, - next appointment is January. Well, my number of seizures has jumped right back up and in fact for November, I am at my worst ever high of 22! And already two now in December-just had one 5 minutes ago. I am not in overt distress, and this is more "quality of life" territory as in the burn smell gets annoying and I do get more fatigued on my "seizure" days. But if this was the way it was for the rest of my life, it's not like I couldn't get by. My seizures are non-progressive at this point and contained to this tiny focal area only. But I still am not thrilled with the fact that I am having frequent seizures. and again, not the end of the world, but I don't like smelling a burnt smell all day either like this. It sometimes gives me vague headaches too. I am not hugely worried about the seizures progressing, but it can't be marvelous to have any type of seizure on a regular basis, even contained ones like mine! Anyone with SPS only on medications that have been helpful? Is it worth the bother to ask about another medication or a med combo?
Medications to address SPS only-worth the bother???
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There are other meds to try with SPS, like Carbamazepine and Lamictal, but all meds run the risk of causing short- and long-term side effects. Being unmedicated carries the risk of allowing your seizures to progress. So your decision has to weigh one against the other. Since you've been keeping a seizure diary, have you noted any particular trigger for your seizures? In the ideal situation, you would be able to reduce your seizures by isolating and avoiding any seizure triggers. There's also the possibility that using diet or neurofeedback might help -- if these are options for you they're worth considering.
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If you don't do anything to get the seizure activity under control, it could lead to a process known as kindling and a worsening of the seizure activity (including new seizure types, clustering, increased frequency and/or intensity, etc.).
There are more options than just AEDs. See the chart linked in my signature for more info.
There are more options than just AEDs. See the chart linked in my signature for more info.
seizingbeauty
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Hey K2, I have T/C's and am on 2000mg Keppra, I've never done the double vision but I know about the sleepiness and the aches. I also understand the "quality of life" issues. I got diagnosed in 1998 and got bounced from doctor to doctor for awhile. The drugs they were giving me made me feel worse on a day to day basis than any of the seizures ever did. I decided in 2003, after being put on yet another med to deal with the side effects of the 3 other meds to "Screw it". I was more willing to deal with the seizures than I was losing myself a little bit at a time to the meds. Like you said "it's not like I couldn't get by". I was doing okay for a while like that. Seizures wern't too bad and didn't have to deal with the side effects.
In 2008 I had a bad seizure, nearly killed my self in front of my daughter. Thats when I went back to the doctor and started on Keppra. The side effects, in comparison to some of the other meds, were not nearly as bad. It took about 2 months for the worst of the drowzyies to go away. My only problem is that my seizures have been more frequent recently. The doc just added Topamax so we'll see.
It took alot to make me go back to the meds. I'm still not sure if I made the right choise. But for the sake of my daughter and family I have to try...
In 2008 I had a bad seizure, nearly killed my self in front of my daughter. Thats when I went back to the doctor and started on Keppra. The side effects, in comparison to some of the other meds, were not nearly as bad. It took about 2 months for the worst of the drowzyies to go away. My only problem is that my seizures have been more frequent recently. The doc just added Topamax so we'll see.
It took alot to make me go back to the meds. I'm still not sure if I made the right choise. But for the sake of my daughter and family I have to try...
thanks for the feedback:
Nakamova-I have noticed intermittent triggers at times, mostly ones that cannot be avoided. I'm a non-smoker, and if I enter a room that has smoke, or on someone's clothes, it will sometimes trigger a seizure, but not always. Sneezing is another one that sometimes does it too! As well, sometimes when some food item is being fried. These are never consistent though, so I can't pin them as 100%, but there has to be some degree of trigger mechanism since I've noticed it at all. But I sneeze all the time like anyone else, and certainly this does not cause a seizure all the time, just sometimes. But I cannot avoid any of the above, and I have tried to counteract by putting jasmine oil under my nose to no avail.
Bernard: I have an idea of kindling and my neurologist has bounced that term around before. I'm not sure the exact definition, but in my case, I think it's still not certain why I smell the burn smell all day long, as in is it one prolonged post ictal effect, or is it continuous auras/seizures all day. (and since the smell is the only indicator, once the smell is there, I can't discern if I am having more auras or not. I just count the first of the day as one for lack of really knowing for sure). I am exploring alternatives like the oils (no success yet), but will take a look at your links. Thanks!
seizingbeauty: point taken about saying the heck with it.
And all three of you have basically echoed that untreated seizures even my simple partials, have the potential to progress. So, yeah, it IS worth the bother, because I don't want them to progress, spread, etc!
Nakamova-I have noticed intermittent triggers at times, mostly ones that cannot be avoided. I'm a non-smoker, and if I enter a room that has smoke, or on someone's clothes, it will sometimes trigger a seizure, but not always. Sneezing is another one that sometimes does it too! As well, sometimes when some food item is being fried. These are never consistent though, so I can't pin them as 100%, but there has to be some degree of trigger mechanism since I've noticed it at all. But I sneeze all the time like anyone else, and certainly this does not cause a seizure all the time, just sometimes. But I cannot avoid any of the above, and I have tried to counteract by putting jasmine oil under my nose to no avail.
Bernard: I have an idea of kindling and my neurologist has bounced that term around before. I'm not sure the exact definition, but in my case, I think it's still not certain why I smell the burn smell all day long, as in is it one prolonged post ictal effect, or is it continuous auras/seizures all day. (and since the smell is the only indicator, once the smell is there, I can't discern if I am having more auras or not. I just count the first of the day as one for lack of really knowing for sure). I am exploring alternatives like the oils (no success yet), but will take a look at your links. Thanks!
seizingbeauty: point taken about saying the heck with it.
And all three of you have basically echoed that untreated seizures even my simple partials, have the potential to progress. So, yeah, it IS worth the bother, because I don't want them to progress, spread, etc!