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Saro46

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I am currently in hospital with eeg and camera monitoring. epilepsy started in 84 when my friends told me I am deaf. Diagnosed then with petitemal frontal lobe. Then it started with me getting confused and disoriented, drop attachs (had to get shoulder op) Getting fits all over the spectrum. Then diagnosed with temporal lobe epilepsy. now I am being told that the few episodes I had now showed no brain activity and it is psychological.
Someone just please help. Previous eeg's showed activity, but that was years ago and both specialists are dead now. Will teach me to go for regular check ups.
Can it be true. I am not a liar or fake. It feels as if my whole life has been ripped from under me. My family supports me and say that it is impossible for me to fake it. They say they can see it in my eyes and can describe when and how I happen to get fits.
Please help I am depressed.
 
Saro, what is wrong with all these doctors? they run an EEG or maybe an hour and determine one does ot have epilepsy! An EEG records in real time ONLY, it does not tell what happened an hour before you were hooked up to the machine not does it tell what will happen ten minutes after you are disconnected from the machine. Unless you have a seizure while they are recording brain activity your readings will always be, "in range of normal". You are having or have had a monitored eeg. What was detrimined? It seems so few doctors order these and with out them it is very unlikely a seizure will be recorded.
A seizure does not leave residual signature to be read by an EEG, when it is over it is over. Unless it was extream and caused perminate damage there will be no sign of a past seizure.
It is not optional, you MUST have seizures while you are connected to the EEG machine for it to have any meaning.
 
Kelso is right

Do you have access to the records from the previous specialists, even though they are dead? Is there any way to get to those records? If they worked in a big practice, or a hospital, you might be able to get to the records...You obviously have eyewitness accounts, so that has to count for something...

I've had E for almost 45 years now, and ALL of my EEGs came back clean until 3 or 4 years ago. There are such things as psychogenic seizures, though....they are somewhat different than E seizures....how your eyes react during the seizure.....

TLE is also often confused with psychological problems, such as DID (Disassociative Identity Disorder) and other personality issues...simply because of where it is in the brain.

I wish you luck, and welcome to CWE.

Meetz
:rock:
 
I am currently on monitored eeg, for the past 5 days. According to the Neurologist no activity showed during the few spells. The first one I had convulsions, but did not lose my conciousness, it felt like I was inside my head somewhere. Like someone else said one side fit and the other side is looking on. It freaks me out. The second one I was confused and it was accompanied with all the emotions there are. I had another one this morning but I was not connected I was in smoking lounge. I could just feel it coming over my head and then a woman came in and I called for help.
 
I definately would get a copy of those records and add those to your new ones. It is possible for someone to have both Epileptic seizures and non-epilepstic seizures but that is rare and does take a lot of time to diagnose. If you had an VEEG and had a seizure but no waveforms going, then it is probably something else. But there are highly trained specialists that analyze EEG and VEEGs all day long.
Personally, several of my EEGs were perfectly normal but my ambulatory EEG was the test that caught my seizures since it records for three days straight, no breaks.
Standard EEGs in the office only record during the time you're there. The may show waveforms that signify Epilepsy even if you don't have a seizure. Those are spikes and waves, or abnormally functioning areas of the brain or possible damaged parts. EEGs can detect fast or slow moving brain waves and of course background waveforms. My twin and I have slow moving brain waves but didnt have a seizure while in the office EEG. During the AEEG it showed lots of activity and seizures, as well as spike and waves and some response to flashing lights.
Anyways- results are different from one EEG to the next for most of us. The major thing would probably stay the same but seizures or spike and waves might be lower or higher that day.
Are you taking medications for your seizures?
What do you mean by going deaf? Just curious becuase I am deafblind.

Ask questions and lots of them.
Get your records from everyone that has seen you, even other specialists.
Keep a journal of your seizures, have other write it for you if you cannot remember what happens.

Be safe-
Crystal
 
Hi there

Thank you so much for your advice. The neurologist just told me I have conversion disorder. I am going to try to get my EEG information. By saying I am going deaf, they thought I didn't hear them when they talk to me, then an EEG were done and my ears were tested. My ears are ok, but they picked up the absence seizures. It feels like my whole life has tumbled in. Do you know anything about conversion disorder?
Thank you so much.:rose:
 
Hi Saro --

The online definition for conversion disorder is:

"A condition where patients present with neurological symptoms such as numbness, paralysis, or fits, but where no medical explanation can be found." It's a vague diagnosis, one that emphasizes psychological triggers rather than those relating to underlying brain chemistry or structure. But that last bit about "no medical explanation can be found" makes me think that your doctors are grasping a bit. Since you had prior EEGs that did indicate seizure activity, I would recommend, as have others above, that you continue to press to get copies of the EEGs,and that you seek additional professional opinions.

Best,
Nakamova
 
kelso54 said:
Saro, what is wrong with all these doctors? they run an EEG or maybe an hour and determine one does ot have epilepsy! An EEG records in real time ONLY, it does not tell what happened an hour before you were hooked up to the machine not does it tell what will happen ten minutes after you are disconnected from the machine. Unless you have a seizure while they are recording brain activity your readings will always be, "in range of normal". You are having or have had a monitored eeg. What was detrimined? It seems so few doctors order these and with out them it is very unlikely a seizure will be recorded.
A seizure does not leave residual signature to be read by an EEG, when it is over it is over. Unless it was extream and caused perminate damage there will be no sign of a past seizure.
It is not optional, you MUST have seizures while you are connected to the EEG machine for it to have any meaning.
Click to expand...
Thanks for your response. I've been having seizures, specially last night, but nothing showed on the EEG's. I've been off my medication for 4 days. I am vomiting and sweating a lot, but I decided to stop taking it alltoghether, since I am now diagnosed with conversion disorder. My head is clear for the first time in ages. I can cry now, where that used to be someting that I could not do. It feels great. I will have to learn to deal with emotions.
 
Nakamova said:
Hi Saro --

The online definition for conversion disorder is:

"A condition where patients present with neurological symptoms such as numbness, paralysis, or fits, but where no medical explanation can be found." It's a vague diagnosis, one that emphasizes psychological triggers rather than those relating to underlying brain chemistry or structure. But that last bit about "no medical explanation can be found" makes me think that your doctors are grasping a bit. Since you had prior EEGs that did indicate seizure activity, I would recommend, as have others above, that you continue to press to get copies of the EEGs,and that you seek additional professional opinions.

Best,
Nakamova
Click to expand...
O thank you so much nakamova. I deffinately am going to.
 
Just cuz it doesnt show up then doesnt meen ur faking! Hang in there it will be all right!
 
Chy Girl said:
Just cuz it doesnt show up then doesnt meen ur faking! Hang in there it will be all right!
Click to expand...
Hi Chy Girl
Thank you very much. I still get abscence spells. Everybody is again complaining that I don't hear them, like right in the begining when I was diagnosed. I am off all epilepsy medication now for a month and a half. At least I am now losing weight. Now I feel sick all the time, are always thirsty, drink a lot of water and urinates a lot. I just simply don't have the heart or guts to go and see a doctor again. Don't trust them.
Kind regards
Saro46
 
Last week I was in the ER for the second time and I had an absence seizure in the bed my aunt was yelling for help when I came out so I started to cry the nurses came in after I was out and said I didn't hav one that I was just crying and thats not a seizure, my las t 2 docters didn't belive me eathier,and I had an EEG that seizures didn't show up on and the just stoped testing. So I know how u feel. I am always here to talk if you need me!
 
Rebecca was told hers were conversion disorder too at one point.... or psychogenic. I learned that it is common to have both seizures and PNES at the same time. I was told that crying during a seizure was not an epileptic seizure.

I was told a lot of things at that time that were not true.

Since that terrible time in her life, I have learned that her seizures are connected to blood sugar levels. There is also a possibility that it is reactive hypoglycemia (food sensitivities). I believe this due to the fact that she is improving after eliminating certain foods from her diet.

Hypoglycemia can also cause emotional issues too.
I am not diagnosing just sharing my information.
Neuroglycopenic Manifestations of hypoglycemia symptoms

Abnormal mentation, impaired judgement
Nonspecific dysphoria, anxiety, moodiness, depression, crying, fear of dying
Negativism, irritability, belligerence, combativeness, rage
Personality change, emotional lability
Fatigue, weakness, apathy, lethargy, daydreaming, sleep
Confusion, amnesia, dizziness, delirium
Staring, "glassy" look, blurred vision, double vision
Automatic behavior
Difficulty speaking, slurred speech
Ataxia, incoordination, sometimes mistaken for "drunkenness"
Focal or general motor deficit, paralysis, hemiparesis
Paresthesias, headache
Stupor, coma, abnormal breathing
Generalized or focal seizures
Click to expand...
 
Hi Sarp, welcome to CWE. It was made out of love by Bernard for his wife Stacy. you are getting a lot of help now and always will here.

I have both epilepsy and NEAD ( non-epileptic attack disorder.) The seizures are real. You are not a fake. The word attack means that you are having real seizures. The way you can tell if you have both is to have a V EEG done.
 
Saro46 said:
I am currently on monitored eeg, for the past 5 days. According to the Neurologist no activity showed during the few spells. The first one I had convulsions, but did not lose my conciousness, it felt like I was inside my head somewhere. Like someone else said one side fit and the other side is looking on. It freaks me out. The second one I was confused and it was accompanied with all the emotions there are. I had another one this morning but I was not connected I was in smoking lounge. I could just feel it coming over my head and then a woman came in and I called for help.
Click to expand...

I had a similar experience! and was sent home diagnosed as psychogenic seizures and was referred to a psychologist, and feel there should have been more testing, or at least a follow up with my neurologist. I was taking high amounts of Keppra and it may have not been out of my system. I now have lots of seizures that are just seconds long, and I jerk then back to normal. I am afraid to go through all the same crap all over again.\


btw welcome to the board! come visit the creative writing page as well!
 
I am sorry to hear of your situation. If you had confirmed diagnosed Epilepsy, this is what you will continue to have. Some people go into remission and don't have seizures anymore but may need stay on meds or some people don't need meds at all anymore.
If you had a VEEG/video EEG and you had an event with no brain activity then it is not Epileptic in nature or caused from abnormal electrical discharge. If it was a Epileptic seizure, then the event being recorded would also match up with the EEG recording of the electrical discharge at the same time. I really hope they can tell you more and figure out the best way to treat your Epilepsy and other events.

Please take care
 
Hi Crystal,

Some people have seizures that are non-epileptic. It is called NEAD. Non Epileptic Attack Disorder. It is called Attack because you still have seizures. Some can be helped with meds others do not need meds.

Matchu, if you are still having problems with it. Then by all means have more tests done.I know it is a hassle. I myself am getting fed up with tests. You can read it in The Creative Writing Page about how I feel.
 
I spoke with my psychiatrist about it yesterday. Thanks Ruth, I am going to continue with what I am doing now. He and I feel the seizures may have been caused by drug use, which I have stopped. I am also going back to no alcohol as well. It is a choice I am going to do my best to stay with, and stay healthy whilst doing said things.
 
Hi matchu, Good for you!! You are strong you can make it. My father was an alcholic and he quit when I was a child. I know what you are going through. I know what my father went through, he succeeded, so can you!! Ruth
 
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