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Non-Epileptic Seizures with headaches and nausea

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Posted 2/5/2008 11:45 AM (GMT 0)
Post by Housebound:

confused  Hi I am new to this forum I call myself housebound?????? Jan of 2005 I had to have disc 6 removed in my neck the Dr. said they would go through the front of the neck because it was easier to get the disc and quicker recovery.  All went well, so I thought I had problems swallowing solid food for over a year, lost my voice to a whisper for 4 months, had to have the ballon blown up in my throat just as the meds wore off. Anyway 14 months later I had to go have the plate and screws removed bbecause of the problems we had to wait for the fusion to be right. So I go get the surgery come home feel pretty good 4 days later I went to the fridge to get a power drink & next thing I knew i was on the floor looking up at my mother & uncle.  Since May of 2006 I have had all kinds of tests because from that day forward I was haveing episodes where I would get dizzy, tired bad headaches, and that was my aura that I was going out.  I was finally diagnosed after 5 Drs. & 3 hospitals that I had NES non-epilictic seizures.  No treatment no cure I was told if I had epilesy it would be better because I could take meds & cut down or eliminate my seizures. I have 5-8 per day for 20mins -45mins.Then I get tired headaches and nausea,I can do nothing. I have had 3 concussion, fractured my collar bone 4 times took a bath & went underwater my husband was home to realize someting was wrong. I am unable to work after 3 years I got disability &lost my right to drive.  Anyone else have this diagnosis. I have lost friends & family and am home all week and get out a couple hrs on weekends with my husband & if i have a seizure I miss the ride and do not know where I am what we did I stutter. I sure could use some friends   Thanks for listerning  Housebound

Posted 2/5/2008 12:09 PM (GMT 0)

Hi there,

NES can be treated with AED's (Anti-Epileptic Drugs) such as Carbamazipine, Lamictal, Sodium Valporate etc... Was the disc removal 100% successful? It is possible that if one of the nerves was slightly damaged (as is the case sometimes in disc removal) then it is possible that it is causing abnormal electrical disturbances. I would ask your doctor if he thinks he knows what is causing the seizures.

Please keep us updated

Darren

Posted 2/6/2008 1:00 AM (GMT 0)

Housebound,

I am very sorry for what you have been going through.  Believe me, you will find many friends on this forum.  We are somewhat like a big family.  Please keep us posted as to your progress, because we do care.  Come on-line any time if you just need to talk.  There is usually someone around, if not we will get back to you soon.

Big Hugs!

Carla

Posted 2/7/2008 3:14 AM (GMT 0)
sad   sad sad sad Hi Carla Thank you very much for the feedback, I will be around more now that I feel comfortable.  I could use some family Thanks Again . housebound
Posted 2/7/2008 3:35 AM (GMT 0)
tongue    Hi Darren I was told there was no meds for me so I am on 200 mils of zolft what a waste.  When I had the first surgery the physicans asst told me out of the blue they may have clamped a nerve in the process of moving everything out of the way. I asked what could be done & how could they tell he said they would have to go in a 2nd time to see IF they clamped a nerve which one and if it could be repaired,  If it would heal itself in time or if nothing could be done depending on what one it was.  Well they did go in the 2nd time because of the hardware removal & that is when 4 days later I started this problem. I asked & he did not say much. I spoke with the physican & he said do you think strees from the surgery caused it you are the doctor you tell me?????????Another I saw him in the parking lot & he asked how I was doing & I said just as bad with the seizures his reply was do you think your neck has anything to do with it.   Then when I went last month to talk about  removal of disc 7 he said I do not usually tell my patients but maybe your seizures will go away?????????? I am going back Monday because my RIDE bus came so I could not finish the work up with him so I wrote down all questions to ask & will now include the meds . I am really glad to have some others with this problem so they know what I am going through no one understands how a seizure beats up on you mine are now 30mins to 1 hour & i can not move for 15mins to get it togetherand I have 6 to 7 a day. What made you think of a nerve damage?  THANKS to everyone for there help & support. Will keep you posted.  Wishing you all well  housebound

 

Posted 2/7/2008 10:48 AM (GMT 0)

Hiya,

I dont know really what made me think of nerve damage. I was just trying to link spinal surgery and seizures and thats what came to mind. Have you considered getting a second opinion to see what they think?

Darren

Posted 2/8/2008 9:44 PM (GMT 0)
sad   sad sad sad sad sad sad sad sad sad Hi yes I am going to the doctor that did the surgery on Monday and have him answer all my questions then in a couple of weeks I am going for the 2nd opinion.  Very sad day today  bad headaches I was hoping for more respones to this problem.  But oh well see what happens mon   Housebound sad sad sad sad sad sad
Posted 2/8/2008 11:22 PM (GMT 0)

Hiya,

I would love to here what your doctor says. You will have to keep us up to date. RE: People replying... sometimes people dont respond because they simply dont know what to say. Other members often are also looking for help and only look at their threads for responses. Please dont be disheartened. I suppose thats one of my jobs, no make sure nothing goes without a response. Although not a MOD for epilepsy, Carla is always around and does a good job as well.

Darren

Posted 2/9/2008 1:36 AM (GMT 0)

Homebound,

I don't think your lack of responses is because people don't care, I think it is because they have no knowledge of your situation.  I don't either, but I wanted to let you know I am thinking about you.  I think Darren is right about you getting a second opinion and didn't I tell you that he knows a lot about epilepsy and seizures. 

I hope I'm wrong, I really hope I'm wrong, but if this doctor did something wrong during your surgery, he may not want to investigate it because of the possibility of malpractice.  This is just my unprofessional opinion.  But, if you get a second or even a third opinion and find out that is the case, maybe it can be corrected.  So, maybe there is a light at the end of the tunnel.

I hang around in the epilepsy forum a lot because this is where I first found help when I was diagnosed with epilepsy about 18 months ago.  Darren and the others helped me so much.  Without them, I would have thought I was going crazy, so I try to give back a little.  I still need their help from time to time also.

Please continue to keep us posted and know that we care about you.

Take care!

Carla

Posted 2/10/2008 3:29 AM (GMT 0)
:-)  Hi Carla     thank you sooooooo much for the feedback.  I just get down & out now & then and that was a bad day with episodes every2 hours for 1/2 to 45 mins.  I know a lot of people do not know much about NES heck even I do not,  I will keep you posted and will be getting a second opinion because I REALLY believe there was a error when the physicans assisstant told me they clamped a nerve in error,   now whants to do more surgery and tells me I do not usually tell my patients but maybe your seizures will go away or lessen. Does that tell you something.  # times he said maybe it is your neck causing the seizurse do you think it could be the neck causing the problem you are the doctor you did surgery you tell me. Thanks for everything will let you know what happens Monday     Thanks for caring :-) :-) :-) :-)   Sherry
Posted 2/11/2008 2:56 PM (GMT 0)

Hi there. I cant believe I just came on searching to see if ANY information may be on here about NES and here I find your post. I am so happy I could cry, t find someone else out there with the same issue. :-)


I am an RN, worked in critical care fo 12 years and I've been diagnosed with fibromyalgia now for about 3. I have alot of chronic pain and I recently found out I have 3 herniated discs in my neck. I had been having tic and body spasms, dizziness and confusion epsodes for severl months when in March of '06 I had my first migraine. It lasted over a week. I was treated and worked up for that, had many tests but only an MRI showed anything, a pineal cyst about 1x1 in size, but it was dismissed as trivial. Noncontributory to my condition.
Any way, around Dec of '06 I started having staring spells, where I would completely zone out. I told the doc's about it, went to a specialist, had multiple tests done eeg's were negetive.... By Jan of '07 I started having tonic/clonic type seizures, but through some of it I m aware of whats going on around me, but its all surreal.

I went to University of Pennsyvania as an inpatient to there speciality unit in dec of '07. I was told I'd be there a week and get a whole workup. They weaned me off the dilantin I had been on, I had 2 seizures and they came in and said these are NES have you ever been physically or sexually abused. Uh WHAT??? WOW, I was flabbergasted at the lack of professionalism and tact. This doc (who shall remain nameless  skull  ) said , you should get therapy. Boom Im done, discharged in after one day as a patient. They took me off the dilantin and sent me on my merry way.

So here I am, unable to drive, or work...Im waiting still on disability, Im losing my home cause were living only on my husbands income. My poor kids have to watch me have these seizures. I cant describe whats its like to feel yourself zone out start staring and seizing and have you ten year old son come and curl up on the arm of the chair and pet your head and tell you it will be ok.... I just cant convey the sense of loss and horror and sadness...

I am actually going to therapy and doing all they say. Its helped to be able to talk to someone, but I cant say its changed the seizures all that much. I do notice that when I have pain, they increase.... I wonder if there is a correlation there.

Im sorry for rambling and for any typos. Its nice to hear that Im not alone, yet I wish no one else had to EVER go through this. Feeling like your a lunatic who cant control my emotions, so they come out as seizures...ughhhh

I pray for the best for you.... :-)

Kate

Posted 2/11/2008 11:45 PM (GMT 0)
Wow!!!!!  

  I feel for you.  Here i am complaining about shocks in my head and body and nausea.  I am so sorry your are going through all that.  I will surely pray for you to get some relief.  gonuts

Posted 2/13/2008 6:46 AM (GMT 0)

Sherry,

You are most welcome.  We all have our down days, I know I do.  Can you believe Kate has joined us, also with NES?  I am hoping you all can share notes and maybe learn something from each other.  As I told you in the beginning, I really do not know much about NES, other than what I've looked up since I first communicated with you.

Welcome to you also, Kate.

Darren is going to be away for several days, so you guys are going to have to help me out.  I was only diagnosed with epilepsy about 18 months ago.  I am actually the moderator for allergies/asthma.  But, as I mentioned before, I would have gone nuts without this forum when I was first diagnosed.

Big Hugs!

Carla

Posted 2/15/2008 2:31 AM (GMT 0)
nono  Hi guys thank you all for the help & feedback,,,,,Well I went to my Dr & he said he would like to remove disc 7  ..fuse disc 5 to 6 & 6 to 7 He said he has NO IDEA how the seizures came about and is in AWE ,, He looke at my old scar from 6 removal and removal of hardware and said the scar looked good and he would again cut there,  I had some questions for him and 5 mins later he said he would go through the back of the neck instaed,,,very painful we will give you pleanty of pain meds and I would be laid up for 2 weeks ; I asked him why the change and he said why mess with the scar tissue again if we do not have to and he will fuse bone to bone I just said I would let him know & he said NES could be from pain & meds I started with carple tunnel 4 surgerys ulner nerve 2 times & thumb surgery2 times Pain & pain meds I am now up to percocet 10 mils 2 every 4-6 I was on the transdermal morphine path 100 mils for 2 years & brought myself with my primary cares help to 25 mils zoloft 200 mils high blood pressure meds and clozapam 3*a day duh pain and meds since 1999 this is 2008 you think it would have happened sooner..........Anyyway my son found at Dartmouth Hitchcock Medical Center Lebanon New Hampshire specialty NES I called today the had me on the phon for 15 mins just asking questions I do not get that when I pay to see a doctor Top of the line hospital she said if I had an eeg 3* in hospital a weekend out patient and 2nite stay which I only needed one then she thinks that they are right she is sending me a booklet to read & said go to a phygolist it will help maybe cut down but we have to find the root of the problem I am not crazy she said the 1st queston her & 5 Drs asked me were you ever molested I like you Kate was speecless I also lost my license & job & finally after 3 years received diabilitydo not give up you will get it plus a lum sum when you started well I will be back Kate please let me know if I can help I know what you are going through   Sherry
Posted 2/15/2008 2:52 AM (GMT 0)

I am so glad you guys are able to help each other out re: NES since I hardly know anything about it.  I also called for reinforcements while Darren is away.  Gracie's Mom has a lot of knowledge about epilepsy.  Unfortunately, they had to learn the hard way what was going on with Gracie.  I would highly recommend you taking her advice.  She knows what she is talking about.  She is also a very compassionate person.

Hugs to all!

Carla

Posted 2/15/2008 3:17 AM (GMT 0)
Hi Kate I went to watch TV & thought about what I said about taking so long to get disability but I had prior issues for diability then along came the seizures.you will probably get it quick I hope everything goes ok with your house we lived on my husbands income for 3 years but we just rent.......I can feel for you as I have  a 7 year old grandaughter & 15 year grandson & they so hard to be strong when they are over or we go out I fell in my house & the two of them somehow got me on the couch so I would be comforable.... I sometimes have & aura lately I get very tired my body is drained & then the headache dizzy and nauseas I also tend to just stare I am not aware my memory is going  what exactly happens to you and for how long thanks again Sherry This is my relaxation from 9:00 to 1:00 all day seems chaos & I am alone with my new puppy but I may have to give him up to much work with the seizures my husband goes to bed at 8: so I do what I have to then hit TVO I am going to try to read again before I would pass out after 2 pages anyway hope you fell better and all goes well for you God Bless & know there are friends here to help I just staryed & i am starting to fell better just by talking to people here everyone has some input that can help.  Like gracies mom I have to see what she has to say to me  G-nite all Sherry
Posted 2/15/2008 10:43 PM (GMT 0)
hi homebound,

just read you post, i think that you should take the advise of other people on here and go and get as many medical opinions as needed until you feel that you have the correct diagnosis. If you dont believe that what dr's are telling you is correct then please dont sit back and let it all continue just because you feel that what a dr says goes, they are human beings and can sometimes get things wrong although they don't like to admit it.

I too have seizures, which started when i was 19 years old for no apparent reason, i was initially diagnosed as epilepstic and then after taking, anti-epileptic medication i was diagnosed with non-epileptic seizure disorder. I too just decided that maybe that is what was wrong maybe my seizures werent caused by epilepsy and infact they were something to do with stress etc (although i did no that i had no past history of stress or emotional/psychological problems.

It was only a trip to intensive care that made me think maybe i should get a second opinion maybe the seizures werent cause by stress.

anyway to cut the long story short, i got a second opinion, and i am now on the right track to a diagnosis, even though i feel it maybe one that i dont want to know such as epilepsy, at least i know that it can be treated and im not just going to be left to continue having seizure without any actuall diagnosis.

i recieved a letter from the hospital today saying that they think that a few of the seizures which i had while in hospital 16 months ago were infact non-epileptic seizures (which lead to the diagnosis of nes) however it says on the letter that there is medical evidence in my hospital records which are very suggestive of true epileptic seizures.

it has taken 18 months to get this far, but i am glad now that i did go for the second opinion, and im not just being labeled as crazy because thats how the dr's make you feel.

please dnt give up, do get other medical opinions until you feel satisfied with your diagnosis.

 

Posted 2/16/2008 1:38 AM (GMT 0)
Hi thanks for all the feed backI was told by my dr when he removed disc 6 that he wanted to remove 7 but it was not too bad now after my MRI he said it is worse & I have bone chips & the mobility in my neck is limited and the pain is still there I can live with all this  but now he is not saying he thinks maybe the seizures will go.  My husband picked up dinner I was out of it when he came home & took me an hour to come out of it I could not take it I was so tired does that happen to anyone I feel so drained I can not even get off the couch well I had to take and hour nap & now I hav a wicked headache. I am going to look for a Dr but Rhode Island is small and my Dr is affiliated with 3 of the hospitals chief of one I have to watch who I go too I am thining of going to St Josephs in New Hampshire they are wonderful and I get to see my son & his wife at the same time I was there befoe foe an eeg and it did show activity then I was thinking of going to Yale New Haven in Conn , That is where I took my son for his ears because R I could not help and at least told me we can not help you should go out of state.  He had tubes in and out of his ears 20 plus times 4 mastoid operations and then a radical mastoid since he was 3 & now at 27 he is losing the hearing in one ear and his ear drum is just about collasped but we have a wonderful Dr and I think if I started with him it would have been different but now he is trying so hard to look for the best for me .....him and I where in Boston Childrens for 2 weeks every 4 months having surgery me sleeping on a lounge chair next to his bed but we left because they just kept doing surgery after surgery so we did Yale anyway enough about that I know I am not crazy but when they all tell me it is physgological stress truma what is up with that well keep in touch will keep you posted Carla, Gracies mom  Kate wish you all well and luck in finding cures for your own illness.  I WILL NOT GIVE UP
Posted 2/16/2008 3:57 AM (GMT 0)

Gracie's Mom,

I just need  you for back up support while Darren is away.  You have been dealing with epilepsy so much longer than I.  I really do appreciate you dropping in to help me while he is away.

Hugs!

Carla

Posted 2/16/2008 4:03 AM (GMT 0)

Homebound,

Please don't let that doctor do any more surgery on you until you get more opinions.  Who knows how you might end up.  I guess you can tell we care about you here.  :-)

Big Hugs!

Carla

Posted 2/16/2008 12:49 PM (GMT 0)

Hi Homeward Bound,

I agree with Carla on this one. Surgery is a serious option for anyone... and spinal / brain / heart surgery is amongst the most serious. Get all the options you can and get a second opinion if you feel you need one. There is nothing wrong in getting a second opinion... it simply means you get a better view of the situation.

Darren

Posted 2/16/2008 10:30 PM (GMT 0)
hi gracies mum,

well i am not too sure why this new information has come out, i do think that the epi dr has looked through my medical notes and then drafted a letter based on what she found, not knowing exactly what other dr's have said to me.

I have had a feeling all along that dr's were making  a false diagnosis, simply becuse i proved to be a challenging case to them, if the cannot find a cause then why not put it down to stress, even if the patient clearly states that they are not stressed.

Dr find it so difficult to admit that they made a mistake.

On a number of occassions dr's failed to look at my medical records properly, and the results of the numerous eeg tests which i have had done. If id didnt know to mention what i have had done and understand the results somewhat then i would still be getting nowhere now.

my medical history isnt that complicated for them too over look the results surely the only past medical history i have is psoriasis and migraine oh and viral meningitus.

I have lost all faith in the healthcare system, i believe if you want something sorting you have to sort it yourself.

the epi dr hadnt really looked at my notes, she was briefly reading through them while i was sat that and trying to piece everything together abouth what had been happening and i was trying to fill in all the gaps, so after i left i think she may have then looked at my medical records in more detail and found out more info about my seizures and the tests which i had done.

well been scheduled for urgent sleep deprived eeg so g the impression she may be somewhat concerned that i have been left this long without treatment, and on the letter it says if there are any abnormalities on the eeg recording the she will insit i start taking aed's as i am reluctant to do so.

 

Posted 2/18/2008 3:18 AM (GMT 0)
redface  Hi everyone thank you all for the feedback I am going nuts trying to figure where to get a second opinion?????I have been to a New Hampshire hospital St Josephs&  Darthmouth Hitchcock on the phone did nothing for me Rhode Island Hospital Roger williams & nerologist is at both of tem I need a neuro dr I am having trouble  can one tell the other I was there.  I sound so stupid  but I feel like I am going to lose it soon. sad sad

Sherry

Posted 2/19/2008 3:29 PM (GMT 0)
Hi to everyone, and thanks for all of your comments,input and support. I cannot tell you how very greatful I am. I have had a rough week so I apologize for not responding sooner. Gracie's mom... I did have at least 2 lyme titers done and both came back neg. I also had 2 other tick borne disease titers done, of course I cant remember what hey were called, but they were apparently neg as well, along with many other labs. Negative seems to be the word for me....ugh I actually changed my GP because I have seen her for over 10 years and NOTHING has changed. I still have the same pain, the same problems and no new direction. So I changed to a new guy who is supposed to be really great....we shall see. I forget who said this, but I too am losing faith in the health care system.
Homebound I feel for you. I went through 3 neuro's already...No wait make that 4, and I am contemplating moving to another if I dont get some better answers. I understand you fear of the "boys club" where they will just talk to each other and blow off your case. My biggest fear was having a psych label on my chart. Once its there many doctors dont bother looking past it and trying to look deeper into the case. Oh and I agree with everyone, please get a second opinion before getting surgery again. Once they cut into you there is no going back....make sure there are no other options left, physical therapy, chiropractic, massage, acupuncture/acupressure etc... many of these are also covered under insurance as well.
Im havinga hard time finishing this, so ill come back later. Ive been off all morning, feeling woozy and dazed. I have been staring and tired all morning. I had such a bad seizure last night, It lasted almost 30min. I was in and out of it, went into a tonic/clonic with my poor son sitting and holdingmy hand. He's only ten....
Posted 2/26/2008 7:51 AM (GMT 0)
Housebound can you see another neurologist...? It is my opinion that you really should...they do not sound like psychogenic to me...
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