NON Electrical Seizure Disorder

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jims56
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 10/1/2007 11:38 AM (GMT -7)   
Hello, I have some sort of a seizure disorder that all of the DR's I have seen for 45 years have NO IDEA on what I have.  At age 4 or 5 my mother noticed that I would lose my balance and was kinda in a daze. I was taken to the GP and he said I had hypertension.  After a few months went by the symptoms persisted and I was taken to to the hospital and it was decided that I had peti mall seizures (Epilepsy) for years they put me on (excuse spelling) phenobarbital and other epilitic meds. Nothing seememd to work.  Here are my symptoms.  When I wake up in the morning (or anytime that I wake up , could be a afternoon nap) my eye turns in and I shake giving the appearance of a seizure. I loose my equalibrium and bright light seems to bother me. This happens EVERYDAY OF MY LIFE!This lasts form 45 minutes to 2 hrs depending on the day.  I always had to wake up an hour or 2 before the school bus would pick me up or later in life and hour or 2 before I had to be at work. I DO NOT pass out like most people that have Epilepsy. I always know my whereabouts and can answer when spoken too.  For years I saw Nuroligists and even went to Strong Memorial Hospital and went in for what they called LTM(long term monitoring)  where I was hooked up to EEG and had a video camera on me 24-7 to monitor any seizure activity.  My seizures are real people! They said that after reviewing my EEG that there was no electrical activity showing up when I seized.... I was hooked up for 5 or 6 day the first time and went in again and had the same test done again because the Nuroligist said the equipment was better and still after all the pain and suffering you go through NOTHING! ALL of the Dr's , specialists are baffled. I have been on every type of SEIZURE MED out there. NOTHING seems to work. Currently they have me on Tegretol.  After 29 years I finally lost my job because I always either took a vacation day if I was having a bad day or told them that I had migrains and after an hour or so would go back to work. But 3 years ago I had a really severe seizure where it lasted 7 hours, went to the hospital and still no help from the Medical prof.  I have applied for SSD and after 3 years still nothing! All I want is to be able to control what ever it is I have. I have always told the DR's that I can't be the only one out there with this type of seizures.  PLEASE , PLEASE, if you or anyone else has something even remotely similar I would appreciate any and all information. Again let me mention   I DO NOT BLACK OUT! I can carry on a conversation if I have to. They start out very mild and then get to where it feels like I get zapped with a bare electric cord. Sometimes my left side shakes more than right ,sometimes they both shake evenly.  I become very HOT and sweaty. The shaking happens roughly every 20-30 seconds and can usually lasts around 45-90 minutes ,but can last as long as Hours! Its not panic attacks nor pseudoseizures! This has controled my life for 45 years and I cannot and will not settle that I'am the only person out there with this disorder.  I would be so grateful if someone that had any idea or had something similar to this please contact me , thank you for listeneing! jim

Post Edited By Moderator (djdaz_1985) : 2/5/2008 2:48:21 PM (GMT-7)


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 10/1/2007 2:56 PM (GMT -7)   

Hi Jim,

I gotta admit, that if the medical profession have not come up with anything after 45 years, its unlikely that an epilepsy moderator is! tongue . I have read your post several times, loking at all the details in it and nothing really comes to my mind, except for the fact that you have not mentioned anyone looking at your ears. There is a tiny shell shaped structure called the Cochlea in your ear and it is full of fluid. When the balance in the fluid is disturbed (through infection etc...) you cannot stand upright as your balance is well and truely shot. After a few hours, it can wear off until the fluid is disturbed again. If you have a condition that disturbs the fluid in your ear (Such as Ménière’s disease, also called idiopathicendolymphatic hydrops) this may be a cause. It doesnt sound much like epilepsy to me.

I hope this helps you

Darren


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jims56
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 10/2/2007 10:08 AM (GMT -7)   

Darren, Thanks for such a quick reply!   On your thoughts about my ears. I was checked out by ENT expert also. What puzzels me is that I have these evry single day of my life! Its not like I see some people post where they have been seizure free for 2 months or so. I do think that I'm having certain side effects to the Seroquel that I'm taking for sleep though. Since I have gotten older the seizures seem to have intensified ALOT! Again , it makes me stiffen right up and lasts anywhere from 10-30 seconds. All my muscles ache like someone beat me with a baseball bat and I feel completely drained afterwards. As I mentioned before they USUALLY only happened upon wake up ,but now seem to happen at any point of the day. Last week I had one after I had gone to the grocery store and was out front talking to an old neighbor when I had one. My neighbor noticed me shake alittle and asked if I was OK. I siad I needed a minute or two and then I had a stronger one and knew that I was in for one of my really bad sessions. She brought me home and was very concerned , I told her that I needed to get upstairs ,take some medication (Ativan) and close up my bedroom to make it as dark as possible. I told her I would call her to let her know that I was better. I including this because people that never witness a seizure before become very frightened when they see one occur. I hope and pray that someone on the internet reads my post and has soemthing that maybe similar to my situation.  thank you again and if you have any other ideas please post them .........jim

 


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 10/3/2007 5:04 AM (GMT -7)   
I would expect an ENT consultant to pick up anything in your ears so I am ruling that one out. Unfortunately, now I am stumped! Have you had brain scans? (CAT, MRI, fMRI etc...) Perhaps there is a small segment of brain cortex that is damaged and it is causing a problem?

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jims56
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 10/3/2007 6:40 AM (GMT -7)   
Unfortunately I have had CAT & MRI done. The Dr's said that after all the tests done it showed NO electrical discharge anywhere they looked. Let me explain in a little different way. MOST of  My seizures happen upon waking up as I have mentioned But I believe that the root of the problem is with my eye's. I can feel a twitching of my eye when the eye lid is closed and I have a finger placed on the lid. The eye when looked at by a specialist was said to have a "lazy eye" resulting in the eye turning in and staying that way until I basically am fully awake. Again I am very coherent and alert during the seizure, I just have trouble walking and I also get the feeling of someone touching me with a bare wire to make me stiffen up then relax for a minute abd then it starts all over again!  This happened this AM and when I was looking into the brighter light of the monitor I started having the seizures. I then had to go upstairs and take an Ativan and close up my bedroom to get it as dark as possible and ride it out. I time my seizures to see if there is anything at all new that I can tell the DR when I have my visit. This one lasted around 35 minutes from the time I took the Ativan till I could come back downstairs to write this reply. Again the eye was making this fluttering type of action when I put my finger on the lid. I did get the dry heaves ,but I attribute that to nerves when I have the seizures. Question: do most seizure patients have this eye problem too? I'm just hoping that someone see's my symptoms and sees a similarity somehow..... I really think that it maybe related to some sort of eye disease or in that area. I wish you could see my video tapes from the LTM session. I seized just like anyone else having the seizure BUT was fully awake , knew who the president was , what city I was in etc. I even had the wire inserted into my cheekbone so that it would be more sensitive to any type of recording while the test was going on. And anyone that has had that test knows the jaw pain from it. Please don't forget about me here ,this is the first forum that has actually wrote back with concern. I even sent emails to hospital officals on the larger west coast hospitals and still nothing.................jim

Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 10/3/2007 3:14 PM (GMT -7)   
Jim,
 
How long has it been since you had your last in-patient 24-7 EEG?  The only reason I ask that question is since you have had this problem so long, maybe it's been some time since you've had it done and maybe the equipment has improved even more.  Just a thought.
 
Do you notice that your eyes have any sensitivity to anything? 
 
Don't worry, we won't forget about you.
 
Take care!
 
Carla

 Epilepsy, asthma, GERD, depression, hypothyroidism


jims56
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 10/3/2007 6:37 PM (GMT -7)   
Hi Carla,  thank you too for replying. I went in twice for the LTM. First time was back in 1992 and the second time was 2003. Both times I got similar test results. As far as any type of light sensitivity, none other than when I first wake up. The light seems to make my right eye turn in when I first wake up and this may go on for up to 2 hrs like it did today. Tonight I'm lying on the couch with a heat pack on my neck from tensing up so much this AM when I had the seizure. I'm trying to think of anything else I can write down so that maybe it might jar someone's memory or maybe someone has heard of someone with similar symptoms.. Anybody????? Thank you, Jim

affected as well
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/7/2008 10:54 AM (GMT -7)   
hi jim, I to suffer from the same thing you do and have many tests and have been told that I am as healthy as a horse and they can not find anything wrong but agree that the seizures are real but not epilepsy!!!! I have been ill since feb 14/07 and this problem hit me on my way home from wor. I am a nurse at a local hospital where I live and for two days I was complaining of left sided ovarian pain. The first day they gave me morphine to help, which I have had several times in the past and thenest day when it started to flare up again they gave me a supository of tylenol and ibuprophen, just to get me home. On my way home I stated to feel very ill and around one hour latter I was in full grand mal seizure. We checked for a med error, but if there was one no on came forward and since then I have not stopped seizuring. Mine last from 10 min to 3 hours and just like you I feel like someone is electicuting me! Mine are so strong at time I can dislocate my hips or shoulders and my muscles burn in pain from the stress of the shock feeling. I to am awake and can communicate but I stop breathing durring a severe seizure. Iam at a loss as well, I have lost my job, my right to drive, my fiends, my car and can not get any kind of social assistance because my husband works but we are a two income family living on one now and it is getting that we may loose our home is something doesn't give. I am maybe going to see an endocrinologist and hope they find something but have lost all faith in the health care system. We are just a number and because we are a mistery no one has the time to spend on us. Anyone reading my story, can you please help me, so I can get my life back?

jims56
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 1/7/2008 11:48 AM (GMT -7)   
Affected as well:
          You are the FIRST PERSON that I have ever known to have symptoms similar to mine. I have had mine since the age of 4 though. (now 51) I would love to talk with you about this issue and if you sent me your email address I would really like to talk to you. I have been on almost every type of seizure medication that is out there and nothing has helped. The only thing I take now is Tegretol and they really don't thnik that it is doing any good taking it ,but when I try and go off of it after taking it for 25+ yrs I seem to have more of the seizures. I have them every morning upon waking and they last for about an hour or so until I'm wide awake. friday I awoke around 1:00am having them and they lasted 3 1/2 hrs.  I live alone and almost called the ambulance they were so bad. I took my usual dose of Ativan and finally fell asleep about 4:30am.....I was so wiped out that I never woke up till my daughter came home from school at 2:30 PM and was still out of it and my muscles just ached all over from the tensing up.
 
I pray daily that someone will see this and reply, you so far are the only one! 
 
Reason for edit:
 
I have taken your email address out for your own safety and protection. If you want other people to email you, you can add your email address to your profile through the CONTROL PANEL at the top of the screen. Darren
 

Post Edited By Moderator (djdaz_1985) : 1/8/2008 3:00:23 AM (GMT-7)


unknown seizure disorder
Regular Member


Date Joined Sep 2007
Total Posts : 25
   Posted 1/7/2008 3:12 PM (GMT -7)   

Hi

just read your post now and i too am experiencing some of the problems that you have been facing, and i am sooo fed up and i have onli been going through this for 16months soo i really do sympathise with you as yours has been going on much much longer.

Although i have what is described as a typical grand mal seizure, e.g. i typically loose contiousness, stiffen up shake violently during this i may stop breathing i always bite my tongue or the inside of my mouth and sometimes i am incontinent.

my problems with seizures started out of the blue when i was 19 years old, i am now 21 years old, i have had numerous tests done  such as mri, ct scan, two 1 hour eegs as an outpatient and a 48 hour eeg while an inpatient. so for dr havent given me any answers all i seem to get is if's but's and maybe's.

the first eeg which i had done showed some non-specific abnormalities (slowing apparently) about 2 hours after i had this test done i had a seizure and was brought back to hospital where i was diagnosed with epilepsy and started on lamotragine. i then continued to have seizures so i was given another drug called clobazam aswell as the lamotragine. i was on an increasing dose, after falling down all the stairs in ma home and hitting my head numerous times after loosing contiousness, i had two seizures one after the other without fully regaining contiousness, so again i was taken back to hospital.

I was admitted for observation (which turned out to be a two week stay in hospital) while in hospital i continued to have seizures and my medication was upped faster than it should have been, on one day i had about 17 seizures, dont realy remeber much of it though all i no is that i was given lorazepam or diazepam to stop them. i was taken for an eeg and apparently during this eeg i had a seizure and there was no abnormal brain activity recorded, so drs decided that i didnt have epilepsy and that they were non-epileptic attacks due to a chemical inbalance in the brain. (i was glad that i didnt have epilepsy but was still confused as to what was causing these seizures) i was discharged from hospital and they said a referall would be made to see another dr to discuss the cause of the seizures. but never recieved an appointment, after about 4 months of having seizures they stopped, and i was seizure free for about 7 months.

then one night i was out drinking with friends in a club after going to a party when i suddenly collapsed and had 2/3 seizures. i did not regain contiousness following these seizures and when i was taken to hospital i was so uncontious that the drs decided to put me on a life support machine and i was taken up to the intensive care unit. the drs initial thoughts were that someone had put drugs into my drink and i had reacted badly but that wasnt the case the toxocology reports came back clear, but i had already been discharge before the results so again no follow up was arranged.

about two weeks after i came out of hospital i had another seizure while driving luckily i had onli just got in my car and was turning round on a back street so i didnt crash and no one was injured. again i was taken back to hospital and kept in for another week, where again they wasnt really able to give me any clear answers only say what they think it may be and i was supposed to be referred to see another dr but never recieved the referral.

eventually we decided to pay to get a second opinion because it was taking so long on the nhs, finally i seen a dr who decided that i may have epilepsy and that it is possible to have epilepsy and non-epileptic attacks and it is also common. (oh forgot to mention the atacks which i had while in hospital were different from the ones i am currently having)  so he arranged for me to have a 48 hour eeg done, which i had done and the results came back normal but i was told that this can be the case because i didnt have a seizure while being recorded, so still no further on but i am now waiting to see a dr who specialises in epilepsy and a cardiologist.

to make things worse i cannot drive, go out alone for fear of ending up back in hospital, i am not allowed to work because i am deemed a health and safety risk, and to top it all off i was told today that i may loose my job so all in all its actually ruining my life and the drs cant make up their minds i dont no how much longer i can cope for either, any suggestions of what may be causing these seizures would be helpful.

good luck to you all with findin a diagnosis, but i recon the health care system has gone mad and i no longer trust dr's


affected as well
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/10/2008 11:47 AM (GMT -7)   
Hi Jim, thanks for writting me back. I agree, yes we have very similar symptoms, but mine just started out of the blue, not at an early age that I am aware of. I am 41 and find it so odd that this could just come so suddenly. The only explanation I can come up with is a drug reaction from the morphine and whatever they gave me the next day. I feel so lost and too dependent on others to help me do most things I use to be able to do. I have three children that I scare every time I have one and can never be left alone D/T my tongue going down the back of my throat will block my airway and untill my gag reflex gets involved I can breathe again. I can hold my breath sometimes up to 30/45sec. It really scares me and I have been told by a neurologist that if this continues I could very well stroke or cause an anurism in my brain.......aren't those great thoughts to think of during this. I'm scared, feel nausea all the time and tired, could sleep or lay around all day. I have lost 25 pounds in 5 months and yet I just lay or sit, no exersice at all because if I get exhausted from too much I will seizure. I can walk about 100ft...50 to and 50 back and then I am pooped and get shakey. I used to be very athletic before this, everyone teased me"Do you ever sit?" Now I can barely muster up enough energy to bath or try and tidy my house. I take clonazepam which is in the ativan family and live off gravol and advil for pain and nausea...no wonder I am tired but if I miss a dose of the clonazepam I seizure for sure. I received a callled today from a asstant service that may help with finacial problems and they denied me, said that there was no reason they felt from my doctors reports that I could not work.....isn't that a joke! We just can't seem to get a break anywhere and I feel it's all my fault ,but not because I can't stop these seizures.....when is anyone going to find out what is wrong with us. Where do you live, I live in Ontario, Canada?

jims56
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 1/10/2008 12:12 PM (GMT -7)   
Well , I feel your agony as well! I too lost 70 lbs ,but believe that it was because of the medication. They (Dr's) had me on Klonopin(the DRUG from HELL) I have been trying to get SSD now for almost 4 years and still have not been approved. I can't work either because I have these anywhere , anytime of the day and also rely on friends and family to cart me around too. Like I just told my DR yesterday, I would rather be classified as having Epilepsy and have my seizures controlled by medication. At least that way we could carry on a somewhat more of a normal life as long as we took the meds. It has crushed me financially too. I hope that some DR or someone period see's these posts and can help us non electrical seizure disorder patients........jim

unknown seizure disorder
Regular Member


Date Joined Sep 2007
Total Posts : 25
   Posted 1/10/2008 12:19 PM (GMT -7)   

hi thnks for the reply i live in the uk.

yeah i no with weight issues i have lost some weight although i am only slim anyways and i dont go out or do anything for fear that i may have a seizure and end up back in hospital again!!,

i too cant work, because of health and safety reasons not only will my employer not let me work until my seizures are under control, my dr has decided that i shouldnt work too, i now fear that i am going to end up with depression on top of the seizures (what fun).

the tiredness that you described i do get tired quite easily which is unusual for someone of my age  i am obviously more tired after i have had a seizure, when i was taking medication the clobazam and lamotragine for the seizures i practically slept my life away i was very rarely awake and i felt sick all the time and i couldnt eat but i am guessing that they were side effects due to the drugs.

if i have more than one seizure in a day it usually takes me a while to recover from my body aches all over for days, but if i only have one seizure then i usually recover in about a day.

these seizures are controlling my life and i cant do anything about it drs are questioning wether i have epilepsy now again because i dont fint the description of non-epileptic attack disorder. hopefully they will find out what is going on soon before i loose my job. i have been off sick now for nearly 4 months so my employer is getting a bit uptight about it.

 


affected as well
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/10/2008 4:19 PM (GMT -7)   
do both of you think that anyone will find us and be a Dr and and give us some answers? I think with all of us living in different countries that maybe one of us could find some answers to give to each other or some glimmer of hope and take that back to our own Dr's to investigate. Jim you asked for my email address I feel uncomfortable with giving it out like this just incase someone who doesn't have the same objective in mind as we do. Not sure how to do it but this way being the only way to talk. It was just by fluke I even found this site, but glad we can comunicate, to unknown seizure person, I don't think we have the same symptoms. I have never been incontinent and have never blacked out. I have never even gone into remission for more than a couple of days and that is because I am sleeping. I never siezure in my sleep!!!!only when I am awake which some days makes me wish I just slept all the time....kidding. I will admitt that my pain even if only one depending on the length determines how long it will take my muscles to repair. I can feel my muscles tearing as the seizure persists and sometimes they just burns from the shaking convultions that last for way too long. well thanks for listening gentlemen, my name is susan.

unknown seizure disorder
Regular Member


Date Joined Sep 2007
Total Posts : 25
   Posted 1/10/2008 4:32 PM (GMT -7)   
well susan i agree with you, i think that amybe if one of us does eventually get some answers than maybe we can help each other. i too would like to chat more maybe we could go in the chat rooms on this site just a suggestion?

Juliaa
Regular Member


Date Joined Feb 2006
Total Posts : 131
   Posted 1/13/2008 11:50 AM (GMT -7)   

Well I feel awful to hear you are going through all of this.  Have you considered the option of seeing an infectious disease doctor?  Where do you live? Is it possible you contracted Valley Fever or another virus which altered your nervous system? Causing insuring medical problems?  Has anyone looked into a traumatic brain injury as a child that had unforeseen effects. I wish you the best of luck and hope you get resolution soon.


DX:  Migraine; SLE; Diverticulitis;HB;neuropathy seizures; Sjogrens
 
Micardis, plaquenil,Prednisone, anti seziure drug, & Nsaids


unknown seizure disorder
Regular Member


Date Joined Sep 2007
Total Posts : 25
   Posted 1/13/2008 4:55 PM (GMT -7)   
hi julia thanks for ur reply, well i have never had a tbi that i am aware of or my mum is aware of the only contributing factors that i can think ov are, viral meningitus although i dont think that this is known to cause seizures after the virus has cleared although i do no that seizures can be a symptom.
 
i used to take cyclosporin which is a immunosuppressant drug (sorry about the  spelling) for a skin disorder this drug is also given to transplant patients to stop rejection of new organs, seizures is a known side effects but i am not sure wether this is a delayed side effect or instant or both.
 
i was not unwell at the time of my seizures, infact i was really fit and healthy, i never changed lifestyle or diet i wasnt under any stress so i cannot think of anything that could have possibly triggered the seizures.
 
i did read somewhere that a chemical that is found in diet coke etc can cause seizures but not too sure how true this is anyone else read or heard of this?

Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 1/13/2008 8:00 PM (GMT -7)   
unknown seizure disorder said...
hi julia thanks for ur reply, well i have never had a tbi that i am aware of or my mum is aware of the only contributing factors that i can think ov are, viral meningitus although i dont think that this is known to cause seizures after the virus has cleared although i do no that seizures can be a symptom.
 
i used to take cyclosporin which is a immunosuppressant drug (sorry about the  spelling) for a skin disorder this drug is also given to transplant patients to stop rejection of new organs, seizures is a known side effects but i am not sure wether this is a delayed side effect or instant or both.
 
i was not unwell at the time of my seizures, infact i was really fit and healthy, i never changed lifestyle or diet i wasnt under any stress so i cannot think of anything that could have possibly triggered the seizures.
 
i did read somewhere that a chemical that is found in diet coke etc can cause seizures but not too sure how true this is anyone else read or heard of this?
Do you have any documentation about the Diet Coke information?  I have drank it ever since they started making it.  How do we find more information?
 
Thanks!
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, GERD, depression, hypothyroidism, tinnitus


unknown seizure disorder
Regular Member


Date Joined Sep 2007
Total Posts : 25
   Posted 1/14/2008 9:26 AM (GMT -7)   
no sorry not got any info although if you google aspartamine and seizures it should bring up something, i started drinking diet coke alot not long before my seizures started too, maybe its just a coincidence or maybe not.
 
 

housebound
New Member


Date Joined Feb 2008
Total Posts : 13
   Posted 2/4/2008 7:21 PM (GMT -7)   
Hi Homebound
 
I have moved your post into a seperate thread called "Non-Epileptic Seizures with headaches and nausea" so that your post doesnt just get lost in the middle of another one. It will also help it get more responses.
 
Darren

Post Edited By Moderator (djdaz_1985) : 2/5/2008 4:47:46 AM (GMT-7)


jims56
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 2/5/2008 7:04 AM (GMT -7)   
Thanks Darren,I kinda wish you would change the name to "NON Electrical Seizure Disorder" though...Because thats what the DR's are calling it!       thanks jim

housebound
New Member


Date Joined Feb 2008
Total Posts : 13
   Posted 2/5/2008 8:53 AM (GMT -7)   
confused  Hi Darren thanks for the help I am VERY new to this my son found it for me and I am still figuring everything out,  Thanks for the help I need it   Housebound

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 2/5/2008 2:51 PM (GMT -7)   

Homebound: Your welcome. We are all really friendly here and will guide you through gently. Once you get the hang of where to post and what the rules are, its easy!

Jims56: Your wish is my command! lol. I have changed the name on the thread for you. For future reference, if you want to do it yourself, you can simply edit the FIRST post in the thread (assuming it is yours) and change the name in the box at the top. You cannot do it on someone elses thread though. Only a moderator can do that.


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
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gentalheart
New Member


Date Joined Dec 2012
Total Posts : 1
   Posted 12/27/2012 8:23 PM (GMT -7)   
Hi Jim my name is Sheryl my neice Samantha has a condition very close to yours. No one understands what is happen and most Dr are confused and keep telling her it"s in her head. If you have had any help with understanding what may be causeing this please any thing would be helpful. a Concerned aunt
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