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Newly diagnosed partial seizures, no one understands. Help!

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Posted 5/3/2011 1:06 PM (GMT 0)

I am newly dianosed with seizures. I'm scared. But then, I think I should be. My son had Down's Syndrome and was severly disabled. He attended a special work program for young adults with disabilities. He had been diagnosed with complex partial seizures. On June 28, 2008, while at his work program he had a seizure and stopped breathing.  The techs started CPR and the paramedics attempted to intubate him and initially couldn't. Long story short, he went too long without oxygen. He continued to seize for the better part of a week. He ended up with a tracheostomy. He got MRSA and pneumonia. He died on July 27, 2008. At that time, as far as I knew, his seizures were simply related to his disability.

about 4 months ago I began waking up with terrible migraine headaches, nausea, and dizziness. Then I started having off and on facial drooping on the right side. My doc freaked and thought I was having a stroke cuz the droopy thing happened in his office. MRI was normal and ruled out stroke. Over the next few weeks I developed other odd symptoms. I have periods where I stutter badly, say words that make no sense, get confused and unable to do simple tasks. More recently I've had episodes where I have difficulty walking. I saw a neurologist and she ordered an EEG. It showed seizure activity. She said I'm also seizing in my sleep. I live alone. 2 weeks ago I woke up and rolled over to discover I had been incontinent in my sleep and I was dizzy and nauseated. Doc said I'd had a seizure. Doc started me on Lamictal. She said don't swim or bathe with no one around. I asked about driving. She said she wasn't going to report me to anyone.

The man I'm seeing works in psychiatry and I do too. He thought it was "anxiety attacks" at first and told the neurologist that. He says over the 4 years we've dated, I have zoned out while talking with him. I forget things he has told me and will argue that he didn't tell me. He says I accuse him of saying things and making sounds that he didn't make. He said I've made odd facial expressions at him then denied doing it. All of these things have resulted in some major arguments in the past. He has also laughed at me when I've had trouble talking. All the arguments, denials, and "anxiety" accusations have just made me feel crazy. Tonight he finally said seizures make sense. DUH!

I'm a nurse and work in the psychiatric field. My co-workers are so-so with all of this. Some of them laugh at me when strange things happen. Some act like they don't believe it's real. My supervisor is convinced that the medication is causing the symptoms and he has outright laughed at me when I've had the speech issues in front of him.

Sorry about writing so much and sounding like I'm whining, but I'm scared and frustrated. I feel no one understands what I'm going through and why I would be so scared. I feel like the more I try to explain the crazier it makes me look and sound. Anyone have any suggestions of how to handle some of this? Anyone else have these kinds of seizure symptoms? I could use some support from someone that understands. My email is [email protected] please feel free to email. Thanks so much!

Sammy

Posted 5/3/2011 3:39 PM (GMT 0)
Hi Sammy! I too recently have started having seizures. They got worse about 3 months into my new depression and anxiety medication. I also have seizures in my sleep although I haven't been diagnosed yet. I really wonder if the medication is causing these symptoms. It's a good possibility if you're taking an SSRI drug with another drug like maxalt for migraines this could be contributing. I'm no Dr. But it's a little odd to me that both of seem to have the same issue and it sounds like you may be on one of these drugs? I'm in lexapro, it's working wonders for my depression and anxiety but it's causing a lot of other problems for me including the possibility of serotonin syndrome. Maybe look into it? I'm sorry to hear about your loss and your issues with seizures. I know how rough they can be and emotionally and physically difficult to deal with. Stay strog and keep looking! You have to be persistent sometimes to find a good dr and to get answers. HUGS!
Posted 5/3/2011 4:13 PM (GMT 0)
hi,

i have been diagnosed with epilepsy at 7 yrs old. currentl, i am 55 with complex partial seizures, never been controlled. After a seizure, i become very confused, unabe to recall where i am, what has just happened, etc.  a common side effect of epilepsy. will type more if you are interested. wishing you the best.

Posted 5/3/2011 4:27 PM (GMT 0)
please do not be afraid, we all fear the unknown and especially when the memory is effected. should this epilepsy, you are one ofthe millions who are diagnosed with the neurological dilemma. there is help for all of us, take one day at a time and research! Talk to many, this is beneficial to those of us who are battling. we all have our baggage to carry. keep strong.
Posted 5/4/2011 3:47 AM (GMT 0)
I have had three seizures in the past year. The first two were partial and my first grand mal a week ago. The first one happened four days after I ended a drug called depakote that I was taking for bipolar disorder. The second happened in my sleep and my kids witnessed, and I thought they were just concerned after hearing of the first one. The third I was in the gym and got a hot flash, and dropped to the floor and when I came back I was disoriented, scared, and confused. I couldn't name the president of the us.

 

I went to er and was immediately put on dilantin. I am still unsure of what is wrong. I am waiting a couple of weeks to get into the neurologist. I never saught medical attention the other two times because i found out the first one was caused by stopping the depakote suddenly and I didn't think the second one actually even happened.

 

In the last several years I have experienced increasing memory loss and anxiety and a new sleeping disorder that I never had. I believe the dilantin is at a toxic level in my blood. The side effects are massive. I have been slightly confused, irritable, thought I had some funny eye movement today, itchy skin (no rash), grumpiness, anxiety, sleepiness, slight headaches, nausea, loss of appetite, and some others. It is almost unbearable.

 

Can anyone help. I cannot stand waiting to get to neurologist. I am scared. I am a heavy drinker and have always been and I know that I shouldn't be, but stopping isn't possible for me right now. The er doc new this, and he put me on it anyway. I understand the liver risks, but what is going on here. Should i go back to the er?

Posted 5/4/2011 6:32 AM (GMT 0)
Kath51 I'm interested in anything anyone has to say that may give me insight.
The neurologist said she thinks my seizures are familial. My sister said but who did you get them from. Our parents were both severe alcoholics. They frequently drank till they passed out. I told my sister if someone is drunk, unconscious, and pees on themselves it's kind of hard to tell if they're pissy-@ss drunk or having a seizure. Neither my mother or father were big on doctors.
Went to the movies with two friends tonight. Twice during the movie the picture appeared to vibrate to me. My friends said that didn't happen. The second time this happened I started having a seizure. I felt my facial muscles, and arms start to spasm, my head jerked slightly. Next thing I remember is my friend tapping my cheek saying my name repeatedly. She said I lost consciousness for about a minute and continued to jerk. They wanted me to go to the ER. I said no cuz I'm already taking the lamictal, it's just not in a therapeutic range yet. I'm also taking welbutrin (which lowers the seizure threshold), synthroid, premarin, singulair, nexium, and lunesta. Doc wanted me to stop welbutrin. Told her I needed a non-SSRI for my depression. She said the welbutrin wouldn't MAKE you have a seizure. It just increases the liklihood of having one if you already have them. She let me continue to take it. I've been on it 3 years. This was the first time I've completely lost consciousness. Should I have let them drag me to the ER? When I wouldn't go they wanted me to stay at their house. I said no to that also. I told them I have to learn how to deal with it on my own cuz I live alone. I did let them drive me home. For those of you that have been dealing with this for a while.... should I have gone to the ER? I tried to downplay the whole event.
Posted 5/4/2011 6:52 AM (GMT 0)
VMR1981 quiting drinking will never be an easy thing if it's something you are addicted to. However, given the damage that alcohol does to the liver, combined with how hard seizure meds are on the liver, it may be time to make some tough choices. If your area has a behavioral health facility that has dual diagnosis treatment you might be able to address both the seizures and the alcohol at the same time. If you are a very heavy drinker, stopping on your own can bring about seizures in some people. This is why I suggested a dual diagnosis facility. They can provide medication when needed through a standard detox protocol. The doctor can consult a neurologist to address the seizures. You can discharge from treatment with the alcohol and seizures under control. I see it happen all the time. I work in behavioral health with adult psych and dual diagnosis patients. If you choose not to pursue this sort of treatment, please be sure to tell the neurologist about your drinking, how much, how often, and if you tried to stop recently. Best of luck to you, no matter which path you choose. I will keep you in my thoughts ~ Sammy
Posted 5/4/2011 12:12 PM (GMT 0)

Sammy Sunshine said...
Kath51 I'm interested in anything anyone has to say that may give me insight.
The neurologist said she thinks my seizures are familial. My sister said but who did you get them from. Our parents were both severe alcoholics. They frequently drank till they passed out. I told my sister if someone is drunk, unconscious, and pees on themselves it's kind of hard to tell if they're pissy-@ss drunk or having a seizure. Neither my mother or father were big on doctors.
Went to the movies with two friends tonight. Twice during the movie the picture appeared to vibrate to me. My friends said that didn't happen. The second time this happened I started having a seizure. I felt my facial muscles, and arms start to spasm, my head jerked slightly. Next thing I remember is my friend tapping my cheek saying my name repeatedly. She said I lost consciousness for about a minute and continued to jerk. They wanted me to go to the ER. I said no cuz I'm already taking the lamictal, it's just not in a therapeutic range yet. I'm also taking welbutrin (which lowers the seizure threshold), synthroid, premarin, singulair, nexium, and lunesta. Doc wanted me to stop welbutrin. Told her I needed a non-SSRI for my depression. She said the welbutrin wouldn't MAKE you have a seizure. It just increases the liklihood of having one if you already have them. She let me continue to take it. I've been on it 3 years. This was the first time I've completely lost consciousness. Should I have let them drag me to the ER? When I wouldn't go they wanted me to stay at their house. I said no to that also. I told them I have to learn how to deal with it on my own cuz I live alone. I did let them drive me home. For those of you that have been dealing with this for a while.... should I have gone to the ER? I tried to downplay the whole event.

 

Absolutely go to the er. I have passed out from alcohol many many times and never peed the bed. I did pee myself when I had my seizure. The thing that happened in your brain I do not think is normal. If you do not go to the er, definately get a neurology appointment. If you have a bad grand mal seizure it could kill you. I was choking on my saliva and thank god my boyfriend was there because we were the only two in the gym. Also, thank god i was not driving. These conditions are serious and life threatening and I think something is wrong with you. Whats more, I think there is a connection with phyc discorders, phyc meds, and seizures that puts you at higher risk long term to develop them. Im not an expert, but have been doing a lot of research. Hope you go.

Posted 5/4/2011 12:33 PM (GMT 0)

Sammy Sunshine said...
VMR1981 quiting drinking will never be an easy thing if it's something you are addicted to. However, given the damage that alcohol does to the liver, combined with how hard seizure meds are on the liver, it may be time to make some tough choices. If your area has a behavioral health facility that has dual diagnosis treatment you might be able to address both the seizures and the alcohol at the same time. If you are a very heavy drinker, stopping on your own can bring about seizures in some people. This is why I suggested a dual diagnosis facility. They can provide medication when needed through a standard detox protocol. The doctor can consult a neurologist to address the seizures. You can discharge from treatment with the alcohol and seizures under control. I see it happen all the time. I work in behavioral health with adult psych and dual diagnosis patients. If you choose not to pursue this sort of treatment, please be sure to tell the neurologist about your drinking, how much, how often, and if you tried to stop recently. Best of luck to you, no matter which path you choose. I will keep you in my thoughts ~ Sammy

 

Sammy, thanks for the feedback. I understand the tough spot I am in now, and appreciate the encouragement.

Posted 5/4/2011 1:20 PM (GMT 0)
i am so sorry hearing such news this morning, i will provide my info to the best of my knowledge. alcohol will deplete the necessary consumption of meds in the system. i do not consume alcohol -- gives me a headache with the anticonvulsant meds. whenever a seizure occurs, do you experience tiredness, headache and the need for sleep? Prior to the seizure, is there an aura? warning feeling prior to the seizure activity? classic symptoms of the epileptic seizure, i expeerience. my aura is a fearful feeling in my chest and as, i am slipping away from reality.

i apologize, this notation is short, but i will return later with additional comments.

kath

Posted 5/4/2011 2:45 PM (GMT 0)
through the years, i doctored with many neurologists. early 60's dilantin and phenobarbitol were the trendy drugs. as a child, my aura was a funny feeling in my chest, then a so called staring spell transpired with loss of awareness for a few minutes. years passed with different drugs -- no control to this present date. after a complex partial, i get a terrible headache, tiredness and a confusion lasting for 15 minutes to 24 hours. there are times when i need to call someone to recall the day. i had one grandmal in my sleep, chewed up the sides of the mouth, body jerking, with no recall of activity. lost control of the bladder only once. the drs prescribe high doses of meds to start -- easy, we should glide gently in to the doses. i think, they are so smart, they are stupid medicating a person to the point of bouncing off the walls. living proof, here.
Posted 5/4/2011 3:04 PM (GMT 0)
no family history of epilepsy. seizures occur weekly. taking dilantin, keppra and tranxene. convulsed as an infant from high fever and my mom had a difficult delivery.at three yrs old, i fell down a pair of steps resulting a scar on the brain- healthy until 7. get a few opinions and LIKE your doctor. many idiots out there. i was told by the doc, you will grow out of these, i am waiting - nearly 50 years later. hope this helps. stay strong, stay smart and forget the past events -- tomorrow will be a brighter day! remember, the public can be rude - laugh it off - what goes around - comes around... have a great day!
Posted 5/4/2011 6:01 PM (GMT 0)
VMR1981 ~ I have a follow up appt with the neurologist in about 3 weeks. She put me on the lamictal. My friends felt that even though I have just started the meds, I should have gone to the ER after losing consciousness because that had never happened before. Stubborn, as always, I didn't listen. My EX read me the riot act this morning. He said, "you want what happened to Zack to happen to you?" (Zack was our son. As I stated in a previous post, Zack died from complications that were secondary to a seizure) That was kind of a wake up slap when he said that. Thank you for the reply! =o)

Kath51 ~ I'm sorry you've had such a long battle both with the seizures and the medical professionals. The seizures are a new thing for me, however, dealing with docs is not. Came across a lot of quacks with my son. I am pretty comfortable with my docs. Being in the medical profession helps cuz I get an inside track on who knows their stuff and has the best bedside manner. I also am very aware of how rude the public can be. It's just difficult not to get my feelings hurt when people I've known for years act so rudely. Every day I think I've seen it all, something else comes along to prove me wrong. But hey, life is an adventure. Gotta take the bad with the good. Thanks for sharing and for the advice! Have a great day! =o)
Posted 5/5/2011 5:59 PM (GMT 0)
Hi guys,

I have partial epilepsy since last year :)

I take meds and all but its nothing to be scared about. Just stick to what they tell you to do as I did not and have faced consequences for it.

Its not the end of the world :) Keep strong!
Posted 5/5/2011 6:58 PM (GMT 0)
faunts, wow, that is alot of keppra! are you taking any other anticonvulsants and are you controlled? i was told by a neurologist, if 500mgs of keppra isn't controlling the seizures -- a larger dose will not be any effective. hmm. i found the followig very interesting. i starting taking magnesium and was seizure free for 3 months! outstanding! thought i had it licked. unfortunately, the activity started again. what a wonderful feeling those three months. on a another note -- a friend told me, take the herb - elderberry to ward off the headache after a seizure, by God, it does work! if you search for elderberry in books or on the web and unable to locate -- look under elder.
have great day to all...
Posted 5/6/2011 11:01 AM (GMT 0)
hey,

I take 1000mg keppra a day so does not seem a lot. I only seizure now if i stay in strobes for a long time or if i drink far too much... learnt my lesson tbh. Glad you found something to help the headaches from the seizures but i am use to it now and my seizures seem now more under control then what they were.
Posted 5/6/2011 1:11 PM (GMT 0)
faunts, thanks for the update. i am happy to hear the seizures are under control. assuming you are able to drive, not the case here, however, i have a wonderful husband and mother, should the need for transportation arise, they are available for my needs. in the past, public transportation was akey for me, with the unawareness, i am skeptical now.. taking one day at a time. as for a recovery, i became use to the accivity and accept the hand of cards dealt to me... as long as they are stable, i will be content. have an awesome weekend.

sammysunshine -- you hang in there!
Posted 5/9/2011 10:47 AM (GMT 0)
I had a seizure at work Saturday night. The same people that have been laughing about my difficulties were right by my side making sure I was safe until it was over. I realized at that point... I work with people in the psychaitric field... we're all a little crazy acting at times! LOL I had to have a talk with my boss. He acts like he's my dad. I had to tell him not treat me like I'm made of glass. He promised he wouldn't. He just gives me that "I'm concerned about you" look. I felt really bad tonight and looked "ragged" according to the boss. He ended up sending me home a little early. I'm not sure if that's because of the recent increase in the lamictal or if I'm just coming down with the crud. I guess I'll know soon enough. I'm hanging in there! Have a great week everyone! ~Sammy
Posted 5/9/2011 1:17 PM (GMT 0)
hi sammy sunshine,
sorry hearing about the seizure, at least you were at work with the people familar with your character and dilemma. yes, they will comfort you, once they truly understand the situation. yea, i know that look, but we are just like everyone else in life - only that, we have a small problem, one which, we certainly did not ask for... as for the tiredness, maybe a icky bug or exhausted from the seizure, it can play havoc on the body. stay well! oh, as for the boss, i tend to think, we scare the hell out of them with the abnormal behavior. then again, who walks around with all of their marbles?
kath
Posted 5/23/2011 5:14 PM (GMT 0)
Hi everybody! This is the one subject that I really hate to talk about. I also have DDD and Fibromyalgia and I have no problem talking about them but my epilepsy brings out a lot of anger. Maybe because it was brought on because I was raped when I was 14. One week later I had a grand mal seizure. My neurologist had them under control and I out grew them by age 20. Unfortunately my pain management dr prescribed meds that shouldn't be taken by someone with a history of epilepsy so they returned. I am currently taking lamictal-500mg and topamax-200mg. I was seizure free for 4 yrs until the pain dr gave me baclofen which made me have a black out one day and then a partial seizure the next day. Needless to say I don't see that pain dr anymore. When I first started having seizures I was as clueless as my parents and drs. There were no symptoms and no family history. The only person on either side of the family with epilepsy was a cousin of mine but he also had other medical issues that involved convulsions. When my neuro asked me about "aura" I didn't have a clue to what he was talking about. I actually had two drs when I was a teenager. The first dr had no business or knowledge with kids or teenagers. The second dr specialized in kids up to 18 so I felt more respected than analyzed. It's scary enough as an adult, can you even imagine trying to go through it as a teenage girl in high school? I dare you! Now let's flash forward to right before I outgrow it, that's when I meet the love of my life. My poor husband has no idea what he has just signed up for! He can handle the seizures, it's the crying and "I'm sorry" after the seizures that he doesn't understand. After I have a seizure I feel ashamed and then later I have so much anger I run the risk of having another one. I think all of this is directly because of how my epilepsy was brought on. My husband and I have found that if I feel my aura he has the ability to talk me out of one. Now the pain dr has brought them back and I have three beautiful kids. Two girls and a boy,(14,12,11). I'm alone at the house with my son(11) when I have a grand mal. My kids were all told what to do and he did! I don't know why I was so surprised, he's just like his dad. Now I'm trying to concentrate on just staying seizure and stress free. My neuro said to avoid as much stress as possible, it could help bring one on. I asked him "do you leave this office and go back into the world or do you live here?" Anyway, thank you for listening to me ramble on about my history and hatred of epilepsy. But I do know that it is important to have a dr that you trust.
Posted 5/23/2011 7:33 PM (GMT 0)
kat1611 and everyone,
My situation developed at age 7 and was told, I will grow out of them, I am waiting 50 years now. If you don't laugh, you will cry.
I am not any better -- sometimes worse seizure activity with so much confusion, I don't recall issues until the next day or not at all. No family history of any epilepsy. Actually, i convulsed as an infant from high fevers several times. As for the aftermath of a seizure, I, too, feel very ashamed (like this is our fault) something, we must overcome. Yes, my husband will try and calm/comfort me, prior to a seizure, they are trying to ease our pain... You must get over the anger, it will create another seizure and create more pain in your body, mind and spirit. There is NO NEED FOR AN APLOLOGY. You have a loving man in your life - blessed with 3 beautiful children. Please - avoid stress? Life is full of stress, excitement, happiness, etc. Are we supposed to deprive ourselves of living? Yes, teenage years were tough, but we survived, those inconsiderate morons will pay the price one day, if they haven't already. Hey, any time, you want to ramble, do so... stay well, stay happy and ignore the idiots in life. Feel free to vent anytime!
Posted 5/27/2011 11:09 PM (GMT 0)
I've had the same exact same symptoms as you. I've been suffering from it for the past two years. I started having grand mals in April 2009 and about six months later I started the droopy face, numbness, and basically the same symptoms as you. My problem is since everything has been going on I've suffered from severe situational depression. I haven't been diagnosed with anything. Most doctors who see me bring into play too much of the depression side of things and seem to push aside whats really going on. But it's really frustrating. I've had EEG's that have showed minimal activity but nothing they can go off. I've been evaluated by a shrink and she said she thinks the seizures are real and I'm having problems with depression because of the seizures. I have episodes that last for days. I have a hard time finding doctors who actually want to help. I've just recently started a blog on everything that's going on but I'm still only at the beginning of the story if interested go to http://enlightenedtrav.blogspot.com. I also have the same problem of people thinking I'm crazy. I could rant on this all day. I signed up for this because I was so excited somebody else had the same symptoms as me.

Travis
Posted 6/1/2011 2:50 PM (GMT 0)
I know this is very late, but I think that this forum should have a topic on Downs Syndrome. It would initiate a lot of positive feedback for people to help eachother.
Anyone agree?
Posted 6/1/2011 5:34 PM (GMT 0)
I'm sure all you have to do is start one at the top. This website covers everything. There might be one started already. Good luck.
Posted 7/28/2011 4:33 AM (GMT 0)
Sammy, I sympathize with you in response to your epileptic symptoms and others response(s) to same.  Such has also been my experience.  When people see a man missing a leg, they don't expect him to be able to run.  When he's missing an ear, they don't expect him to hear like they do.  However.  When a persons disability is hidden by the seven bones of the skull, others see you and think you are just like them.  Some even pooh pooh your response that you are epileptic and demonstrate behaivors that they do not immediately understand.  So, I wish you the best and feel bad for you that you are experiencing what you are. 
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