I just found out I have seizures a few months ago. My only seizure symptoms are memory loss and word finding difficulty. I went to the doctor because of these 2 symptoms. The EEG showed that I was having seizures in the area of the brain that is responsible for those 2 things - the temporal lobe. I don't have any other symptoms other than that: no muscle jerking or staring spells or anything, so it's very hard for me to believe the diagnosis of partial complex seizures. I'm not on any anti-epileptic drugs now because I couldn't tolerate Oxtellar XR 600mg 2x daily or Keppra so my PCP took me off them until I can get in to see a new neurologist because I had such bad reactions to them. After reading about others experiences I realize I have a lot to be thankful for. Have you ever heard of anyone who is supposedly having seizures but doesn't have any symptoms? What's strange to me is that the Dr. said I'm having seizures "all the time". I wish I understood this better.
Just diagnosed with Partial Complex seizures
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Hi Peridot21, welcome to CWE!
When you get in to see the neurologist, you should ask him/her for a second opinion, so you can feel more confident that the diagnosis is correct. The neuro should also clarify what "all the time" means. It's unlikely that your brain is seizing 24/7 -- even with non-convulsive seizures that would be a very serious health issue. He may mean that you are having more seizures than you are aware of. Some kinds, like absence seizures, can happen without the person being aware that they've experienced them. Other kinds, like simple partial seizures, can take forms that you might not associate with epilepsy -- symptoms like tingling or nausea, feelings of dread or anxiety, phantom smells, etc. To read more about those, check out: http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
It's also possible that "all the time" refers to abnormal brainwave activity, not actual seizure symptoms. The EEG might have shown a characteristic pattern that is associated with epilepsy when someone is between seizures. That's the case for me -- I've never had a seizure during an EEG, but the brainwaves generated are "spike and dome" patterns that mean I am vulnerable to seizures. Those patterns will show up if I'm not on anti-seizure medication. In other words, those patterns are there "all the time", even when I'm not seizing.
Hopefully you can get in to see the neuro soon to get a better handle on what they think is going on. In the meantime, it's a good idea to keep a symptom diary so you can track how frequent your symptoms are, how long they last, and if they are changing in any ways. Even if you're not sure something is a seizure, you might make a note of it, just to be on the safe side. When did your symptoms start? For the brief time that you were on the medications, did the treatment seem to help?
When you get in to see the neurologist, you should ask him/her for a second opinion, so you can feel more confident that the diagnosis is correct. The neuro should also clarify what "all the time" means. It's unlikely that your brain is seizing 24/7 -- even with non-convulsive seizures that would be a very serious health issue. He may mean that you are having more seizures than you are aware of. Some kinds, like absence seizures, can happen without the person being aware that they've experienced them. Other kinds, like simple partial seizures, can take forms that you might not associate with epilepsy -- symptoms like tingling or nausea, feelings of dread or anxiety, phantom smells, etc. To read more about those, check out: http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
It's also possible that "all the time" refers to abnormal brainwave activity, not actual seizure symptoms. The EEG might have shown a characteristic pattern that is associated with epilepsy when someone is between seizures. That's the case for me -- I've never had a seizure during an EEG, but the brainwaves generated are "spike and dome" patterns that mean I am vulnerable to seizures. Those patterns will show up if I'm not on anti-seizure medication. In other words, those patterns are there "all the time", even when I'm not seizing.
Hopefully you can get in to see the neuro soon to get a better handle on what they think is going on. In the meantime, it's a good idea to keep a symptom diary so you can track how frequent your symptoms are, how long they last, and if they are changing in any ways. Even if you're not sure something is a seizure, you might make a note of it, just to be on the safe side. When did your symptoms start? For the brief time that you were on the medications, did the treatment seem to help?
Hi, Peridot21 and welcome!
If it does turn out to be epilepsy, try not to be discouraged by your adverse reactions to the first two medications you tried. It is important to keep in mind that it can take several weeks for the body to adjust to a medication (either a dose increase or a new medication). Also, there are many medications out there to try.
Also for some people it is necessary to increase the dose of a medication more gradually than the usual rate of increase in order to reduce issues with side effects. This is the case with me and perhaps for you as well, and you may want to ask the new neurologist to issue a prescription allowing you to make dose increases more gradually.
Wishing you the best with your new neurologist. Hope you keep us posted on how things go.
If it does turn out to be epilepsy, try not to be discouraged by your adverse reactions to the first two medications you tried. It is important to keep in mind that it can take several weeks for the body to adjust to a medication (either a dose increase or a new medication). Also, there are many medications out there to try.
Also for some people it is necessary to increase the dose of a medication more gradually than the usual rate of increase in order to reduce issues with side effects. This is the case with me and perhaps for you as well, and you may want to ask the new neurologist to issue a prescription allowing you to make dose increases more gradually.
Wishing you the best with your new neurologist. Hope you keep us posted on how things go.
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Hi Peridot21-
To piggyback off of masterjen's point about the importance of second opinions, just wanted to share that the Epilepsy Foundation has a resource page that explains how to go about getting a second opinion which may be helpful.
I can't post links here, so if you go to epilepsy dot com then enter "When should I consider getting a second opinion?" in the search box, it's the first search result that comes up.
-MW
To piggyback off of masterjen's point about the importance of second opinions, just wanted to share that the Epilepsy Foundation has a resource page that explains how to go about getting a second opinion which may be helpful.
I can't post links here, so if you go to epilepsy dot com then enter "When should I consider getting a second opinion?" in the search box, it's the first search result that comes up.
-MW
Just diagnosed..
Nakamova, Masterjen and Caretothepeople,
Thank you all so so much for your reply. I haven't been able to write back to you all yet, but everything you all said was very good, thought provoking and useful. Please be patient with me. I want to respond and answer the post, but I haven't had a chance. My brain is misfiring. Good excuse, eh? You were all wonderful to offer help. Thank God for others in life who reach out to help people because of what they've been thru. I have more to ask and more questions I need help with. I appreciate this site.
-Peridot21
Nakamova, Masterjen and Caretothepeople,
Thank you all so so much for your reply. I haven't been able to write back to you all yet, but everything you all said was very good, thought provoking and useful. Please be patient with me. I want to respond and answer the post, but I haven't had a chance. My brain is misfiring. Good excuse, eh? You were all wonderful to offer help. Thank God for others in life who reach out to help people because of what they've been thru. I have more to ask and more questions I need help with. I appreciate this site.
-Peridot21
ilexa margareta
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Best of luck with everything. I had nocturnal tonic-clonics, absences, migraine, and drop attacks, along with strange ego-death episodes and ecstatic episodes, all throughout my childhood, but was only diagnosed with occipital lobe epilepsy, with practically every type of seizure listed off, at 16. Thankfully I am nowadays purely photosensitive, as far as I know - although I did faint after an ecstatic episode this morning. All this isn't counting the near-status I had recently whilst withdrawing from lorazepam. That was a ramble, but, what I meant to say, was - I can relate. I lose words very, very often, and am always having to ask loved ones whether words I say are real! I have dreadful memory loss, to the extent that I can't remember what happened in the morning of a day in its evening, but I put that down more to the heavy medication.
Ruth
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I will just all of a sudden have seizures without any warning. Apparently your EEG showed up a lot of spikes during the tests. high spikes are seizures. Did you realize that you were having seizures during the test? You probably didn't and that is why he/she told you.
I don't know it a lot of times when I have seizures. It's common.
Ruth,
I didn't feel a thing during the EEG. Everything normal. No lapses in consciousness. Nothing. It wasn't until several months later that the neurologist said that I had an abnormal EEG and that I had partial complex seizures. Imagine my shock, being 61 years old, and out of the blue this diagnosis that doesn't make sense to me. The symptoms that I originally went to the doctor for are memory loss and trouble thinking of the right word or thought. The neurologist put me on Oxtellar ER 300 mg twice daily and after 2 weeks bumped it up to 600 mg twice daily. For the first couple days, I did have much clearer thinking, I could speak confidently, didn't have trouble with words and my memory was good. But then the side effects began. At first it was nausea. I had an another appointment and told the Neuro about the nausea, but he said that people never have that problem on the drug. I told him I would keep taking it and see what happened. At 600 mg, the nausea gradually turned into vomiting and I had no appetite. Then I started having paranoia. Then hallucinations, delusional thinking, I got a sore on my lip, hands were shaking, insides shaking so much it felt like I was vibrating. When I laid down to sleep, my chest got very tight and heavy, it felt like my heart was pounding, I felt raw fear and fearful thoughts. I kept thinking I was dying or having a heart attack. My husband kept trying to calm me down, but I even thought at one point that he knew I was having a heart attack but wouldn't take me to the hospital because he wanted me to die.
I had been trying to call the doctor for a whole week, but he wasn't returning my calls. I told the receptionist everything that was happening, but still no call back from the doctor. So I stopped taking the medicine because I'd hardly eaten anything. Then came withdrawal. The symptoms of withdrawal were like the side effects I was having, but stronger. One night I made my husband take me to the emergency room. I thought I was having a heart attack, because my chest was so tight and felt heavy. My heart felt like it was pounding and racing and I felt like I wasn't getting enough air in my lungs. But the nurses and instruments showed my heart rate was only slightly elevated and I had plenty of oxygen. I just THOUGHT that my heart was pounding and I couldn't breathe. My thinking was very exaggerated and delusional. Also, it seemed like my husband was bored and didn't care what was happening to me. And the nurses seemed like they were talking badly about me. Everyone's eyes looked scary and black - the whole iris looked black - and people seemed like they were angry. It was like hallucinations I think.
Finally they knocked me out with something intravenous and I fell asleep. After an hour or so, they sent me home. They told me I was having withdrawals from the Oxtellar and nothing else was wrong. I asked them if they thought I was having seizures and they said no. Still no word back from my neurologist.
The next day was Saturday and my husband took me to a walk in clinic. The doctor there said that I would need to dose down gradually off the medicine. He prescribed 150 mg. The following Monday, I went to my family doctor. The withdrawal was no better, so he switched me from Oxtellar to Keppra. But it didn't help the withdrawals and made me extremely sleepy, so weak I could barely walk and my legs and arms felt like I barely had the strength to move.
A couple days later, I went back to my doctor, he said that the medicines were doing more harm than good, so he told me to stop taking them. He made an appointment with another Neurologist, which isn't until January. It took 2 months for the withdrawals to completely stop. And I'm not on any seizure medicine. I'm back to having word finding problems and memory problems, but this is much better than the side effects if the horrible medicines.
To be honest, since I don't have lapses in consciousness, staring spells, etc., I have to wonder why the 1st neurologist said that I have partial complex seizures. Wouldn't it be simple partial seizures? Nakamova on here encouraged me to look up symptoms of simple partial seizures and I'm wondering if any of the following could be a seizure:
My ears ring all of the time. But all of a sudden the ringing gets loud for awhile, almost like someone turned up the volume suddenly.
Out of the blue, I'll feel fear or sudden sadness for no reason.
I sometimes get goosebumps - skin crawly feeling - on my cheek.
I can be somewhere and things look weird or unfamiliar to me. Then that feeling goes away.
Sometimes when people talk I can't understand what they are saying. I know the words, but I can't understand the implication. (Or that might be from my pain medicine. I have neck/back injuries, fibromyalgia and arthritis all over from getting hit by a vehicle on my bicycle some years ago. I sustained a head injury in that accident.)
Sometimes my head feels very full and I can feel my pulse in it. This began right after the head injury.
Anyway, this was very long. Part of this is my story that I wanted to tell. Thanks for listening. If anyone has any more comments, I do appreciate them. People on here are so respectful. Being someone with so many health issues and chronic pain for longer than 10 years, I've heard it all!
-Peridot21
I didn't feel a thing during the EEG. Everything normal. No lapses in consciousness. Nothing. It wasn't until several months later that the neurologist said that I had an abnormal EEG and that I had partial complex seizures. Imagine my shock, being 61 years old, and out of the blue this diagnosis that doesn't make sense to me. The symptoms that I originally went to the doctor for are memory loss and trouble thinking of the right word or thought. The neurologist put me on Oxtellar ER 300 mg twice daily and after 2 weeks bumped it up to 600 mg twice daily. For the first couple days, I did have much clearer thinking, I could speak confidently, didn't have trouble with words and my memory was good. But then the side effects began. At first it was nausea. I had an another appointment and told the Neuro about the nausea, but he said that people never have that problem on the drug. I told him I would keep taking it and see what happened. At 600 mg, the nausea gradually turned into vomiting and I had no appetite. Then I started having paranoia. Then hallucinations, delusional thinking, I got a sore on my lip, hands were shaking, insides shaking so much it felt like I was vibrating. When I laid down to sleep, my chest got very tight and heavy, it felt like my heart was pounding, I felt raw fear and fearful thoughts. I kept thinking I was dying or having a heart attack. My husband kept trying to calm me down, but I even thought at one point that he knew I was having a heart attack but wouldn't take me to the hospital because he wanted me to die.
I had been trying to call the doctor for a whole week, but he wasn't returning my calls. I told the receptionist everything that was happening, but still no call back from the doctor. So I stopped taking the medicine because I'd hardly eaten anything. Then came withdrawal. The symptoms of withdrawal were like the side effects I was having, but stronger. One night I made my husband take me to the emergency room. I thought I was having a heart attack, because my chest was so tight and felt heavy. My heart felt like it was pounding and racing and I felt like I wasn't getting enough air in my lungs. But the nurses and instruments showed my heart rate was only slightly elevated and I had plenty of oxygen. I just THOUGHT that my heart was pounding and I couldn't breathe. My thinking was very exaggerated and delusional. Also, it seemed like my husband was bored and didn't care what was happening to me. And the nurses seemed like they were talking badly about me. Everyone's eyes looked scary and black - the whole iris looked black - and people seemed like they were angry. It was like hallucinations I think.
Finally they knocked me out with something intravenous and I fell asleep. After an hour or so, they sent me home. They told me I was having withdrawals from the Oxtellar and nothing else was wrong. I asked them if they thought I was having seizures and they said no. Still no word back from my neurologist.
The next day was Saturday and my husband took me to a walk in clinic. The doctor there said that I would need to dose down gradually off the medicine. He prescribed 150 mg. The following Monday, I went to my family doctor. The withdrawal was no better, so he switched me from Oxtellar to Keppra. But it didn't help the withdrawals and made me extremely sleepy, so weak I could barely walk and my legs and arms felt like I barely had the strength to move.
A couple days later, I went back to my doctor, he said that the medicines were doing more harm than good, so he told me to stop taking them. He made an appointment with another Neurologist, which isn't until January. It took 2 months for the withdrawals to completely stop. And I'm not on any seizure medicine. I'm back to having word finding problems and memory problems, but this is much better than the side effects if the horrible medicines.
To be honest, since I don't have lapses in consciousness, staring spells, etc., I have to wonder why the 1st neurologist said that I have partial complex seizures. Wouldn't it be simple partial seizures? Nakamova on here encouraged me to look up symptoms of simple partial seizures and I'm wondering if any of the following could be a seizure:
My ears ring all of the time. But all of a sudden the ringing gets loud for awhile, almost like someone turned up the volume suddenly.
Out of the blue, I'll feel fear or sudden sadness for no reason.
I sometimes get goosebumps - skin crawly feeling - on my cheek.
I can be somewhere and things look weird or unfamiliar to me. Then that feeling goes away.
Sometimes when people talk I can't understand what they are saying. I know the words, but I can't understand the implication. (Or that might be from my pain medicine. I have neck/back injuries, fibromyalgia and arthritis all over from getting hit by a vehicle on my bicycle some years ago. I sustained a head injury in that accident.)
Sometimes my head feels very full and I can feel my pulse in it. This began right after the head injury.
Anyway, this was very long. Part of this is my story that I wanted to tell. Thanks for listening. If anyone has any more comments, I do appreciate them. People on here are so respectful. Being someone with so many health issues and chronic pain for longer than 10 years, I've heard it all!
-Peridot21
Welcome Peridot,
You have come to the right place. People here are very kind and caring and supportive. We have all walked in your shoes and can appreciate your pain. I am sorry that you can only get to see the dr. in Jan. These neuros are waay too busy. Trying to find the right meds for us is the biggest problem. Since everyone reacts differently to meds it's all a big experiment. I wish you luck.
M
You have come to the right place. People here are very kind and caring and supportive. We have all walked in your shoes and can appreciate your pain. I am sorry that you can only get to see the dr. in Jan. These neuros are waay too busy. Trying to find the right meds for us is the biggest problem. Since everyone reacts differently to meds it's all a big experiment. I wish you luck.
M
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I agree that simple partial seizures seems a more likely diagnosis based on your symptoms. All of the ones you list are fairly common symptoms associated with simple partials, including the ringing and buzzing and the psychic symptoms (unexplained fear/anxiety/sadness, deja and jamais vu), and the autonomic symptoms (goosebumps). I hope you can get some answers from a competent epileptologist who can help you find a treatment that will be more successful. Are you tracking all your symptoms in a symptoms diary? That can be useful for your doctor, as well as potentially helpful in identifying patterns or triggers.
Nakamova,
Oh wow, no I hadn't thought to track symptoms in a diary. What a great idea! I'm going to do that. So you keep track every day throughout the day when you have anything that might be a seizure?
Another thing I remember the 1st Neuro saying is whenever my mind won't come up with a word, or when I go blank while I am talking, he said I'm having a seizure right then. Happened a lot today!
Thank you so much!
Oh wow, no I hadn't thought to track symptoms in a diary. What a great idea! I'm going to do that. So you keep track every day throughout the day when you have anything that might be a seizure?
Another thing I remember the 1st Neuro saying is whenever my mind won't come up with a word, or when I go blank while I am talking, he said I'm having a seizure right then. Happened a lot today!
Thank you so much!
Marika,
Thank you for your kind words and wishes. So I'm not the only one who has had problems with meds. It's a big guessing game what meds to use for people? And one med that works for one person totally messes another one up? Sheesh. I'm really afraid of trying another med. I really hope this next guy knows what he's doing more than the first one.
Peridot
Thank you for your kind words and wishes. So I'm not the only one who has had problems with meds. It's a big guessing game what meds to use for people? And one med that works for one person totally messes another one up? Sheesh. I'm really afraid of trying another med. I really hope this next guy knows what he's doing more than the first one.
Peridot
It's so weird that I was having seizures and didn't feel a thing. But then the partial seizures are so different - from everything I've read. I'm reading everything I can and trying to find as many symptoms as I can read about so I can understand what going on with me.
Peridot
Peridot
Peridot,
I don't know about anyone else, but for me the most frustrating part is the not knowing. I came back from Ireland with a friend last year and we were talking about our trip to another friend and she told her that I'd had a seizure while there. I was thunderstruck! I didn't even know about it. My friend said, "I thought you knew?" No! It was momentary and the only reason she knew was because she was a teacher and had seen seizures before. I have to explain to people that I don't know what is going on. I don't remember.
The Brain is a Mysterious Thing!
M
I don't know about anyone else, but for me the most frustrating part is the not knowing. I came back from Ireland with a friend last year and we were talking about our trip to another friend and she told her that I'd had a seizure while there. I was thunderstruck! I didn't even know about it. My friend said, "I thought you knew?" No! It was momentary and the only reason she knew was because she was a teacher and had seen seizures before. I have to explain to people that I don't know what is going on. I don't remember.
The Brain is a Mysterious Thing!
M
Ohmagosh! That's mind boggling! I can't imagine what that would be like. I'm still trying to wrap my mind around the idea that I'm having seizures. Because the Neuro that diagnosed me behaved so incompetently, I have lots of questions. I know I probably do have seizures, but I wonder if he was wrong about the kind. He said partial complex but I have to wonder if it's not simple. As I understand it, in simple, there are no lapses in consciousness, right? I've not ever had a lapse in consciousness. And my husband of 41 years has never seen anything like the description of absence seizures either.
You're so right. It's the not knowing that is so frustrating. I'm torn. I need my brain to work better..I can feel the deficits and am so forgetful.. I forget who I told what to and end up repeating stories to people again and again..among other things. So I want to be less forgetful, but I'm really afraid of what the next med might do to me.
Oh well. I need to sit tight until I see the new Neuro and see what he says. Maybe God intends to sort this out for me when the time comes.
I really appreciate your conversation a lot. I can't talk to my hubby about this because he thinks the doctor was crazy and doesn't think I have seizures. That's another story completely.
Thanks a bunch.
Peridot
You're so right. It's the not knowing that is so frustrating. I'm torn. I need my brain to work better..I can feel the deficits and am so forgetful.. I forget who I told what to and end up repeating stories to people again and again..among other things. So I want to be less forgetful, but I'm really afraid of what the next med might do to me.
Oh well. I need to sit tight until I see the new Neuro and see what he says. Maybe God intends to sort this out for me when the time comes.
I really appreciate your conversation a lot. I can't talk to my hubby about this because he thinks the doctor was crazy and doesn't think I have seizures. That's another story completely.
Thanks a bunch.
Peridot
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Hey Peridot --
This CWE link talks about being proactive in dealing with seizures, including info about keeping a seizure diary and looking for triggers: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
This thread goes into more detail about different ways people like to track their symptoms: http://www.coping-with-epilepsy.com/forums/f23/seizure-diaries-6128/
It's quite possible that your bicycle-related head injury is playing a role in your seizures or seizure-like symptoms, even if the symptoms didn't show up right away. In my case I had a head injury when I was 5 which is the best guess for the primary cause of seizures that arrived 30 years later (perhaps from a tiny amount of scarring on the brain). The injury may have lowered my seizure threshold, but then there were the secondary triggers at the time of the seizures that probably pushed me over that threshold: fatigue/stress/low blood sugar/nutritional issues/aspartame (all related to a particularly difficult time I was going through).
I hope the seizure diary gives you (and your husband) a better sense of what's going on. You might want to steer him to the link about partial seizures so he understands that the symptoms can be subtle and don't involve loss of consciousness or awareness. For the most part, simple partials are all about distorted or false sensory experiences. They're called partials because only part of the brain is involved.
This CWE link talks about being proactive in dealing with seizures, including info about keeping a seizure diary and looking for triggers: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
This thread goes into more detail about different ways people like to track their symptoms: http://www.coping-with-epilepsy.com/forums/f23/seizure-diaries-6128/
It's quite possible that your bicycle-related head injury is playing a role in your seizures or seizure-like symptoms, even if the symptoms didn't show up right away. In my case I had a head injury when I was 5 which is the best guess for the primary cause of seizures that arrived 30 years later (perhaps from a tiny amount of scarring on the brain). The injury may have lowered my seizure threshold, but then there were the secondary triggers at the time of the seizures that probably pushed me over that threshold: fatigue/stress/low blood sugar/nutritional issues/aspartame (all related to a particularly difficult time I was going through).
I hope the seizure diary gives you (and your husband) a better sense of what's going on. You might want to steer him to the link about partial seizures so he understands that the symptoms can be subtle and don't involve loss of consciousness or awareness. For the most part, simple partials are all about distorted or false sensory experiences. They're called partials because only part of the brain is involved.
Ruth
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Hi Peridot 21,
I did some research on Oxtellar xr 300 mg. Here is the link:
http://www.webmd.com/drugs/2//drug-163163/oxtellar-xr-oral/details
I found this interesting:
When you press the link, press on the word EXPAND to get all of the information.
I have found through experience not to change doctors during the holidays. They are usually gone from Thanksgiving to January. So January is the soonest you can get in.
How are you doing now? Are you feeling better? Also, do not stop any medicine suddenly. It is a shock to your system. You have to get off of it slowly under a doctor's supervision.
One time my heart started pounding and I asked my doctor to refer me to a heart specialist just to be sure everything was alright. They put a halter monitor on me for 2 days. It showed up that, I just forgot. Anyway, I never had to take any medicine. It might be a good idea for you to do the same thing.
Give me or Nakamova a PM anytime you need to talk to someone. I get the message quicker. :hugs:
I did some research on Oxtellar xr 300 mg. Here is the link:
http://www.webmd.com/drugs/2//drug-163163/oxtellar-xr-oral/details
I found this interesting:
When you press the link, press on the word EXPAND to get all of the information.
I have found through experience not to change doctors during the holidays. They are usually gone from Thanksgiving to January. So January is the soonest you can get in.
How are you doing now? Are you feeling better? Also, do not stop any medicine suddenly. It is a shock to your system. You have to get off of it slowly under a doctor's supervision.
One time my heart started pounding and I asked my doctor to refer me to a heart specialist just to be sure everything was alright. They put a halter monitor on me for 2 days. It showed up that, I just forgot. Anyway, I never had to take any medicine. It might be a good idea for you to do the same thing.
Give me or Nakamova a PM anytime you need to talk to someone. I get the message quicker. :hugs:
Peridot,
You are so lucky to have your husband with you. Mine passed away in 2008. Needless to say it was devastating! We were happily married for 38 yrs. I have 3 sons but they have lives of their own, so I am technically alone. It has been very difficult. Up until recently I was doing well on generic Keppra and then over the summer, (I decided to try and get off) I did have my dr. approval. 34 days after being totally off I had a seizure while in a meeting. Now I am back on the meds but am still having some breakthrus. Had 24 hr.eeg,normal. Brain MRI, normal. Now dr. wants to do 3 day video eeg. Fortunately, my eldest son is staying with me so he helps me and can report back to dr. about what the heck is going on. Confusion, disorientation and the biggest problem, short term memory loss.
I wish you well on Your journey and hope that they can solve Our Mysterious Brain issues.
M
You are so lucky to have your husband with you. Mine passed away in 2008. Needless to say it was devastating! We were happily married for 38 yrs. I have 3 sons but they have lives of their own, so I am technically alone. It has been very difficult. Up until recently I was doing well on generic Keppra and then over the summer, (I decided to try and get off) I did have my dr. approval. 34 days after being totally off I had a seizure while in a meeting. Now I am back on the meds but am still having some breakthrus. Had 24 hr.eeg,normal. Brain MRI, normal. Now dr. wants to do 3 day video eeg. Fortunately, my eldest son is staying with me so he helps me and can report back to dr. about what the heck is going on. Confusion, disorientation and the biggest problem, short term memory loss.
I wish you well on Your journey and hope that they can solve Our Mysterious Brain issues.
M
Hi,
Just to answer your question yes. It is possible to have epilepsy without "drop down seizures". I know cause I have a focal abnormality in the left frontal lobe. A focal seizure or partial/complex is when neurones are over firing in just one part of the brain "hence focal" but be warned even though you have partial seizures they can develop into a generalised seizure (all brain neurons firing at once).
Your most probably not having them "all the time" as the doctor says but everyday is possible. Complex and partial seizures come in clusters and last around 30seconds.
My symptoms were transposing words (truck for train or table for chair that sort of thing) the neuron would fire and connect to the wrong one or the path wouldn't match up so yeah very similar, memory, fuzzy brain when trying to concertrate on people's speech, trouble finding words or finishing a sentence. Very hard to explain to people.
I would go for another EEG and try to find a medication at the correct dose. Your seizures can turn to tonic clonic if not treated. One thing I will say after being on both tegretol and Keppra is that both make you feel pretty shitty for a month. My neurologist said to me whatever we try commit for a month because it takes that long for your body to adjust to any drug. Keppra is great once you wait out the irritability and nausea.
Hope this helps. Anymore Qs just ask
Kind Regards
Happy
Just to answer your question yes. It is possible to have epilepsy without "drop down seizures". I know cause I have a focal abnormality in the left frontal lobe. A focal seizure or partial/complex is when neurones are over firing in just one part of the brain "hence focal" but be warned even though you have partial seizures they can develop into a generalised seizure (all brain neurons firing at once).
Your most probably not having them "all the time" as the doctor says but everyday is possible. Complex and partial seizures come in clusters and last around 30seconds.
My symptoms were transposing words (truck for train or table for chair that sort of thing) the neuron would fire and connect to the wrong one or the path wouldn't match up so yeah very similar, memory, fuzzy brain when trying to concertrate on people's speech, trouble finding words or finishing a sentence. Very hard to explain to people.
I would go for another EEG and try to find a medication at the correct dose. Your seizures can turn to tonic clonic if not treated. One thing I will say after being on both tegretol and Keppra is that both make you feel pretty shitty for a month. My neurologist said to me whatever we try commit for a month because it takes that long for your body to adjust to any drug. Keppra is great once you wait out the irritability and nausea.
Hope this helps. Anymore Qs just ask
Kind Regards
Happy