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Old 12-20-2007, 09:15 PM   #1
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do some neuro drs go by what family members see if all tests come back normal?

hi all im wondering if the neuro drs also go by what people witness if they cant pick up any seizure activity ? see i have had MRI ,veeg,egg all normal but i talked to my dr on the phone today and told him what happenes when i have a spell and he said by what i told him it sounds like seizures see dec 4th i had a bad one then dec 6th the 14th and another one today the 20th so they are coming closer together and heres what happened today me and hubby went shopping and i went to like 5 stores didnt use the wheelchair i felt fine walked in done fine ,then when we went to another store i sat and waited on a beanch in the mall and he went to get the wheelchair just in case well before he got back i was having a seizure my eyes were flickering i could not respond to him nothing then i fell back on the beach and laid there for like 5 mins then i got up and got in the wheelchair and felt so tired i fell asleep all the wqay home and everytime i have a spell i get so depressed and frustrated but im counting the days less then 2 weeks to see the neuro but the neuro on the phone told me if they get worse i should come sooner he told me to call the drs office tomorrow and tell them whats going on and he even told me that finding a seizure is hard to catch alot of times ,and im also going back to my old internal dr cause the one i had here left and the staff told me that if my refills run out id have to find a different dr so mim just going back to my old one he was wonderfull the only reason i changed drs was hes 25 mins away and this other dr was here in town but that dr was great he spends time with me and explins everything and never gets mad this new dr i had i only saw him once since may and i ask if they was going to run any blood work since it had been awhile they said no they only run tests once a yr wow ,well im just glad im going back to my old dr i go dec 28th and im showing him the paper my sister wrote of what she saw on dec 4th and my husband sees me fall and have seizures and he thinks its seizures too cause he saw what they told me was panic but come to find out was seizures i believe this because of how i react when i have one and i have family history plus i had seizures at age 4,im now 45 and why they came back i dont know but someone better get to the bottom of this i cant handle this and the sad part for me is i cant drive the drs didnt say i cant but im too scared too cause i never know when i will have one cause i can walk and do all that stuff then boom i fall so has anyone ever had all the tests run and be normal but drs gave you meds for seizures ???
vickie

 
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Old 12-20-2007, 10:11 PM   #2
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

Witness statements are more helpful than you can imagine. Onlookers, especially if friends or family, can explain how we act in our seizures, if there are any indications pre seizure. How we act during the seizure, if there is any verbal, wondering, mechanical motions or other. As well as post seizure, how fast it seems to be once the seizure "looks" like (from the outside) it is over. How fast balance, verbal, and cognitive come back.

This ALL helps in providing this to the Dr.

However, take into consideration one other factor based on the time of year and the increase. **stress** With holidays, all the running around this is a time of year stress is on the high side for a lot of us. Even if it tends not to play into our cause of seizures, it just may trying to prepare everything.

Often times EEG's will come back clean or not sure. Even for those of us who have seizures. MRI's look for physical abnormalities, even minute ones.

Not sure what else to say in reply to your post. I guess try and relax if you can <grin> .

--Travis

 
Old 12-21-2007, 03:38 AM   #3
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

Vickie,

I hear your frustration in all of your posts and I truly feel for you. I am in a very different situation, as none of my EEGs have ever come out normal, so diagnosing me was a breeze, even when I'm not in a seizure. Unfortunately, I don't have any answers, but I just wanted to tell you to keep pursuing answers until you get to the bottom of the bottom. Nobody should have to live like that.

Just a suggestion: How long was your veeg? Since your episodes seem to be coming closer and closer together, perhaps they'd consider admitting you to a hospital for a week (or longer) and see what's going on. They had done that with me, removed all meds and that's how they were able to document a grand mal seizure. Would that be an option for you?

Last edited by life_is_good; 12-21-2007 at 05:03 AM.

 
Old 12-21-2007, 10:43 AM   #4
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

Vickie;

I have been diagnosed since Junior High School, which was over 30 years ago. One of the tests I was given some years later was very helpful in my diagnosis. I was given my own hospital room, wired up with an EEG and a transmitter on my head, and then they took my meds away. There was a video camera in the room running 24/7 just so they could see what happened before the seizure and what I did during it.

The results were very, very helpful to the doctors. If certain motions always precede a seizure (such as the raising of a hand), then that tells the doctors where to look in the brain for potential trouble spots. Sometimes, instead of epilepsy, they find a brain tumor.

The doctors wanted to know several things:
What were you doing when sz started? (reading? walking? relaxing? thinking hard?)
Did something start the sz (flashing light, breathing hard, super-tired, eating a particular food)
What did you do when the sz started? (fall down, groan, cry, mutter??)
What did you do when the sz ended? (get up, lay for a while, sleep??)
By all means, what family members see when a sz starts is very, very important. It helps the dr. diagnose. And, if it isnt epilepsy (panic attack, say), it helps the drs diagnose that.

My best Neurologist had me keep a journal. Everything I ate (and I do mean everything, snacks included), when I woke up, what woke me up, what time of day the sz happened, what I was doing before it happened, how long it lasted, what happened during the sz, etc. This is a long list. Fortunately, I didn't have to do that for more than a month before the Neurologist had a good idea of what 'set me off' as far as epilepsy.

 
Old 12-21-2007, 07:15 PM   #5
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

Travis said what I was going to say- keep witness comments available to take to the doc, or if possible, have someone who's seen the episodes go with you.

And, remember, you can't do anything about having a seizure disorder besides taking the meds prescribed, and following the doc's advice....but at the same time, you can have a life. It takes time to get the meds straightened out sometimes. Everyone is different... and do as much as you can to reduce stress.

If there were spells on the VEEG, did the doc give you any indication of what he/she thought was going on?

 
Old 12-21-2007, 10:43 PM   #6
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

NEUROWRECK,AND EVERYONE ELSE,
when i went to that hospital and had the veeg i didnt stay long enough to find out i stayed oneday cause i got so depressed and cried the whole time i was there why because theses dumb psychiatrist came in and kept putting words in my mouth and when they saw i take xanax they automaticaly thought panic ,well i know my body and i have had panic and what is happening now is NO PANIC yes my sister wrote down what she saw and my husband knows what i do also sometimes when im having one of these spells i can hear but cant talk i try to my lips move where im trying to talk but cant and then when im finally able to it comes out all slurred and at times when i feel them coming which sometimes i do sometimes not like if i feel one coming what happens is i get real confused dont know what im doing and then i fall and cant move sometimes i shake sometimes not my eyes ALLWAYS flicker though according to my mother back when i was 4 she said id just be either standing or playing and id just drop and i would be totally out and said sometimes i shook sometimes not and my eyes flickered and this happened for like age 4 till i was about 9 or 10 maybe and back then the drs told my mom they thought it was either a seizure or Epilepsy ,AND MY BROTHER HAS SOME TYPE OF Epilepsy because he shakes alot and has since birth and hes 47 and still shakes and he will shake for like a hr stop thenn start shaking again but his is his hands and he cant control it he does it and doesnt even relize hes doing it .and i read up on this on internet and it said menopause can trigger your seizures see in sept 06 i was just starting meno and thats when i first had my fall then didnt get another till dec06 had 3 then then from jan07 to like april i got some here and there i wouldnt leave my house and i was also scared being home by myself then in june 07 i took a walk and blackedout on the side walk and just before i fell my stomach started hirting really bad and my head hurt horrible thats when my headaches started getting worse im taking darvacets now and thats the only thing i have found to help if i dont take one my head kills me .and when i was at my moms i was confused too i stood there and didnt have no idea what i was doing and then at the neuro drs office on nov 13th i didnt feel it coming i just droped to the floor and i wasnt even feeling any panic i was happy that day cause i had went 6 weeks without any falls and was driving and i was so proud i thought i was ok then i went in to see dr then came out to front desk and they was making arrangements for me to go to that hospital and i just fell .then dec4th dec6th dec14th and 20th i had more spoells on the 20th in the mall after we went to like 5 stores i walked all around and we did our shopping i felt great didnt feel funny or nothing ,then we go to the mall i went in to wait on husband to park the car and i got in there and was very confused i walked into target and back out then back in and sat on a bench thinking i was feeling strange which i was my husband comes in sees me and said i better get the wheelchair i said yes i think so too ,well he went back outside to get it and before he got back in i was having a seizure he tried to talk to me but i couldnt my mouth moved but nothing came out he said i started shaking and my eyes were flickering and then i fell back on the bench then i wake up i was semi awake i get in the chair and im ok but very very tired i slept all the way home everytime i have a spell i fall asleep ok like the 6th i was laying on my couch and had a seizure my hubby was upstairs and i couldnt even holler for him and according to all my family they say when i come too i make a moan like noise but the one on the 4th i made a screem like moan slurred my words was very confused and they couldnt understand anything i was saying and said i also was pointing with my arm trying to tell them someting but i couldnt talk and after each one of these spells i fall asleep ,but the dr now after i told them whats going on and that they are coming more often and closer together he believes its seizures or Epilepsy so hes going to try me on some meds and also do another MRI or CATSCAN .and maybe put me back in hospital only for a longer period of time 3 days i dont think is enough time to witness a seizure unless im having one then ,at this point i will take any test they want to try to figure it out but he must think its seizures or he wouldnt be wanting me to start meds would he the lady at his office told me sometimes its very hard to pick it up on scans so they also go by witnesses and what i do during and after and how often i have one and how long they last .plus hes switching my xanax to klonipins since its a seizure /anxiety med in one i have so much more to write but for now that will do till later sorry such a long post but i want to get everything out i can so all of you can help me understand and also my sister told me you can die from a seizure is this true shes got me scared now.
thanks all for all your support
vickie

 
Old 12-22-2007, 06:20 AM   #7
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

Well, let's just hope these seizure meds the doctors are letting you try do the trick in keeping these episodes under control. Good luck and keep us posted.

 
Old 12-22-2007, 11:03 AM   #8
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

May I make a VERY distant observation?

Not knowing your case, not being there. Having said that this is my observation.

The "blackout" part is most likely your seizure. When you start remembering and have visual and or auditory that most likely is called post-ictal (after the seizure).

My seizure recovery time could take 15-30 minutes back when after a gran-mal. I could see, hear, and understand what was going on around me just fine, but I could NOT speak due to the after effects of my seizure. Only time would allow me to speak again There was nothing the Emergency Room could do. Best way to communicate was to ask simple yes or no questions so I could shake my head. I could pull out medical and ID from my wallet. So obviously I understood what was going on. Just verbal was impaired for a duration.

This is perfectly normal with seizures. The symptoms people experience vary in range from acting a younger age, to removal of clothing (seen both happen with others) to loss of bladder (I've done that!) increase of strength, reciting texts they have read (done that only TWICE myself).

Does that help you with understanding at all?

Not everybody "blacks out" with seizures. Some have "stare offs" as if daydreaming or deeply thinking, but never a loss of consciousness (or fall down). Every patient is different.

--Travis

 
Old 12-22-2007, 11:45 AM   #9
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

Mine sound similar to Travis'... when I start to wake up, I can make out what people are saying (slowly- at first it's very hard), and yes/no questions help a lot. I remember the aura part ( a strange, non-painful feeling in my stomach and mid chest- different for everyone), then nothing, and am told my eyes blink, mouth 'chews', and my left arm gets stiff. I don't really shake- just some mouth tremors at times (with the auras, there are times when I feel my jaw getting stiff). I don't have generalized (grand mal in the old lingo) seizures, but complex partial, so don't remember the seizure part... For a time, I wore incontinent underwear, since I didn't know when the seizures would hit- during a time when different meds were being tried. I don't lose bladder control all the time, and mostly it's when I have sleep seizures. I wake up "chewed" in my inner cheeks and tongue, and feel stiff, and 'hit by a bus' and tired, even though I'm just getting out of bed.

It's frustrating to not know what's going on. Yours didn't sound like panic to me. It's good your husband is cued into your symptoms so he can get a wheelchair if needed. I hope these meds help you. You've been through a lot with this.

I had to see a psychiatrist when I was going throught the disability application process- it was scary to have to see someone who could make a decision that I was nuts, when I knew that I wanted more than anything to get back to my normal life (with seizures every few months, not several a week, back then- down to 5-8 a month now, which is an improvement, but not 'employable'). I can understand being afraid that the shrink would make some diagnosis that you didn't have. At the same time, they can make diagnosis that help you with the seizure work-up by saying that you're NOT likely to be having anything but real seizures- but it is frightening, and frustrating to have to deal with all of the stuff done with seizure work ups......

Your witness statements will help a lot- it's good you have those. Mine were only from my former boss and co-workers, and a therapist (seeing because of frustration of losing my old life to all of this). My general doc also sent me out of her office twice by ambulance from her office- so her observations helped too. Those observations you have from family will help a lot.....

Good luck with the neuro appt and medications- let us know how it all goes.

 
Old 12-22-2007, 04:59 PM   #10
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

Quote:
Originally Posted by neurowreck View Post
Mine sound similar to Travis'... when I start to wake up, I can make out what people are saying (slowly- at first it's very hard), and yes/no questions help a lot. I remember the aura part ( a strange, non-painful feeling in my stomach and mid chest- different for everyone), then nothing, and am told my eyes blink, mouth 'chews', and my left arm gets stiff. I don't really shake- just some mouth tremors at times (with the auras, there are times when I feel my jaw getting stiff). I don't have generalized (grand mal in the old lingo) seizures, but complex partial, so don't remember the seizure part... For a time, I wore incontinent underwear, since I didn't know when the seizures would hit- during a time when different meds were being tried. I don't lose bladder control all the time, and mostly it's when I have sleep seizures. I wake up "chewed" in my inner cheeks and tongue, and feel stiff, and 'hit by a bus' and tired, even though I'm just getting out of bed.

It's frustrating to not know what's going on. Yours didn't sound like panic to me. It's good your husband is cued into your symptoms so he can get a wheelchair if needed. I hope these meds help you. You've been through a lot with this.

I had to see a psychiatrist when I was going throught the disability application process- it was scary to have to see someone who could make a decision that I was nuts, when I knew that I wanted more than anything to get back to my normal life (with seizures every few months, not several a week, back then- down to 5-8 a month now, which is an improvement, but not 'employable'). I can understand being afraid that the shrink would make some diagnosis that you didn't have. At the same time, they can make diagnosis that help you with the seizure work-up by saying that you're NOT likely to be having anything but real seizures- but it is frightening, and frustrating to have to deal with all of the stuff done with seizure work ups......

Your witness statements will help a lot- it's good you have those. Mine were only from my former boss and co-workers, and a therapist (seeing because of frustration of losing my old life to all of this). My general doc also sent me out of her office twice by ambulance from her office- so her observations helped too. Those observations you have from family will help a lot.....

Good luck with the neuro appt and medications- let us know how it all goes.
neurowreck
yes you said it all and my husband did buy me a wheelchair cause i never know when i might fall and see the reason i knew it was seizures and not panic was because of how i acted when i had one of my spells and yes i too wake up slow and i get so tired during the day even though i slept a good 9 or 10 hrs i sometimes still fall asleep i may be having some during the night but i dont know if iam or not and yes sometimes i feel that strange feeling in my stomach and then im so confused and i dont know what im doing .and with me i start freaking out and on the 20th when we went shopping i didnt know what the heck i was doing my husband went to get the wheelchair he bought and i was walking into target back into the mall back in target and i did this back and fourth thing for maybe 6 times then i get back to the inside of the mall and i stand there and i try to remember what im doing and i had no clue so i sat down cause i was feeling really strange and my stomach was feeling strange so i sat down when my husband came back in i was allready into a seizure my eyes were doing that thing again which they do everytime it feels like my eyes are going up into my head and even when someone is talking i cant stop nor talk and at the mall my body was shaking my husband told me and i was so drained out i slept all the way home i do everytime i have a spell and yes xanax dont seem to be working it did at first it helps calm me yes but i just want something with the seizure and anxiety in it and as for the psychiatrist they didnt say nothing to me about seizures they came in and said i was under too much stress and wanted to put me on klonipins but only 0.5 one a day id never make it through the day on that im not addicted i never ever take more at a time and i only take the 3 but sometimes if im more terrifed or whatever i may take 1 extra my sister has too 5 pills at 1 time and noway would i ever do that i hate taking the meds i take now plus id be freaking out if i took that many at once i take the xanax ,b/p ,and darvacets and thats it oh and my prempro HRT and my old internal med dr is sending me to a pain dr about my headaches and they may do a MRI on me but if i have nothing to calm down i cant have it cause i get too scared i cant even do a CATSCAN without crying .and if for some reason i do have to go back into the hospital they told me i have the right to refuse the psychiatrist to come in my room and yes they were all thinking me as nuts because of what was going on they kept saying panic well its not panic yes i have panic but i know the difference between panic and seizures and since i had this as a child and family history of seizures plus i went from may 06 to jan 07 going places and never fell down once till sept 06 i was driving and going to my kids activitys and there sports games i done everything then in sept 06 i started fainting and i just got worse not better and at first i thought it was panic but see i was on anti d's with panic meds in them and i was still falling and doing what im doing now and i been on several so if they didnt stop the panic then i told myself it cant be panic then i started asking around and found out panic does not make you fall and passout and make your eyes do that strange stuff and one min i would be doing just great and id get up and go to my kitchen and id fall to the floor and be out with my eyes flickering .so yes im so hoping the meds work for me and whatever the drwants me to do i will do whatever but no psychiatrist is going to tell me its panic again cause i know different .yes i will keep all of you posted and if i have anymore seizures im going to my mom's on christmas and i hope i dont have a seizure but if i do nothing i can do about it till i get the meds and if i have another i will have them write out what they see and i been keeping track of what im doing just before and the date and times and what people tell me i do during one .so wish me luck.
vickie gods

Last edited by vickie45; 12-22-2007 at 05:06 PM. Reason: ps and i been to ER many times and none have ever checked me for seizures they sent me home and said it must be panic.

 
Old 12-23-2007, 09:55 AM   #11
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

I'm glad you're going to get some medication for this. The headaches can also be a result of seizures (i almost always have a headache after mine). There are non-narcotic meds that can help, and also a seizure med (Topamax) that is approved for migraines.
Hopefully the neuro will get you fixed up with some combination of meds that works for you and gives you more good days. It's hard to have so many rough days.

 
Old 01-10-2008, 09:37 PM   #12
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Re: do some neuro drs go by what family memebers see if all tests come back normal?

neurowreck are you the one who told me your on xanax and darvacets??im wondering because i take darvacets for the headaches but they cause horrible constipation and my head feels like its getting worse i did try the klonipins but i cant take they wouldnt calm me down at all so im back on xanax .and i tried 2 pain meds from neuro dr for my head but none helped so i called my neuro dr and ask if they could call me something else in cause i like the darvacets but not the constipation and i had bad luck today i had my appt at 1pm today well we got there 20 mins late so i had to make new appt for jan 23rd which isnt too far off but i was so hoping to see him today and of course i fainted in the front office because i wanted to hurry in there so i wouldnt be late but i was allready 20 mins late and she said i had to make new appt and i fainted and got home and fell asleep .but the dr is so good he likes to spend a good hr with his patients and get all the details and symtons and your history everything so i have to wait another week so i can deal with it i suppose so neuro was it you who told me about the xanax and darvacets or was it someone else????
i will keep you posted i havent been on for awhile when kids were out for christmas and i wasnt feeling good with the horrible headaches and constipation .
vickie

 
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