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CZ
joey
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ive had sleep paralysis and its like im waking up from a dream and i can see and think , it scares me so bad because i try to scream for help but i cant move my mouth i cant move period, its like being in a coma but able to see everyone around you.but not able to talk or let them know im there, its wierd. its the scariest ive ever been
Hi Joey, thank you for posting to me. I am sorry to hear about your sleep paralysis- I don't know if that is what I am having but I do know the terror you are talking about it is terrifying. If you look back on this thread, Bernard sent me a link on sleep apnea and sleep paralysis- it was really helpful, i definitely recognized much of what was happening to me there and there fear was described perfectly for the first time. Thank you again- I hope yours does not happen too often, sincerely, Cz
That sleep paralysis is some scary $ h it!!! I've only had it once, a while back now, about 9 months ago, and I hope I NEVER have it again. It was the most horrible experience ever, I'm not normally aware of my seizures, just that I have HAD one...it was horrid KNOWING what was going on but being unable to do anything about it or even call for help. I hope you feel better soon.
Mri resutls were negative,
Hi everyone, as promised I wanted to post my test results. My mri is negative, except for a sinus infection. the disappointing news is that my primary doctor who ordered the tests wants to stop here, NO EEg. I am a little concerned because everything I have been directed to read says this is common and you really need an EEG.
However, she does feel these are Mycolonic sz. not body spasms from RSD. But I dont know and I guess I wont know.
I have to keep in mind that it is very easy to become obessive when you have rsd. You are in constant pain, taking alot of meds, and your activities are severely limited.
So I dont want that to be the case- I feel a little hesitant in pushing further for the EEG. But am a little worried.
I have now had 5 big episodes. And my either spasms or mycolonic sz. when I go to bed and get up are increasing in severity and duration.
I think I will just have to wait until espisode #6 and then go back to her. She is a good physican, albeit not a neurologist, so im just stuck here for now.
She said if they were seizures I would not remember anything about them. That too is different from everything I have read here.
So thats the situation. Thank you for all your support. Hopefully, I wont have another episode, weather it is RSD or seizures. Hope everyone is doing well. CZ
Hi everyone, as promised I wanted to post my test results. My mri is negative, except for a sinus infection. the disappointing news is that my primary doctor who ordered the tests wants to stop here, NO EEg. I am a little concerned because everything I have been directed to read says this is common and you really need an EEG.
However, she does feel these are Mycolonic sz. not body spasms from RSD. But I dont know and I guess I wont know.
I have to keep in mind that it is very easy to become obessive when you have rsd. You are in constant pain, taking alot of meds, and your activities are severely limited.
So I dont want that to be the case- I feel a little hesitant in pushing further for the EEG. But am a little worried.
I have now had 5 big episodes. And my either spasms or mycolonic sz. when I go to bed and get up are increasing in severity and duration.
I think I will just have to wait until espisode #6 and then go back to her. She is a good physican, albeit not a neurologist, so im just stuck here for now.
She said if they were seizures I would not remember anything about them. That too is different from everything I have read here.
So thats the situation. Thank you for all your support. Hopefully, I wont have another episode, weather it is RSD or seizures. Hope everyone is doing well. CZ
Georgiagirl88
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Hi Again!
Hi Czz,
I would want a definitive answer and not want to be left hanging. If they are seizures..you need to know and figure out treatment plans. I would speak with a neurologist. If the Dr. is not a neuro Dr. than I personally would go to one. That is exactly what happened to me. It can take some testing and time for proper diagnosis. Mine was not on the first appt. They suspected seizures. The eegs can certainly help with that.. You don't want the seizures to spread to other parts of the brain or cause further damage (that is my understanding) Best of luck! Keep us posted and email me whenever!! : ))
Take care!
Michelle
Hi Czz,
I would want a definitive answer and not want to be left hanging. If they are seizures..you need to know and figure out treatment plans. I would speak with a neurologist. If the Dr. is not a neuro Dr. than I personally would go to one. That is exactly what happened to me. It can take some testing and time for proper diagnosis. Mine was not on the first appt. They suspected seizures. The eegs can certainly help with that.. You don't want the seizures to spread to other parts of the brain or cause further damage (that is my understanding) Best of luck! Keep us posted and email me whenever!! : ))
Take care!
Michelle
BuckeyeFan
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Find a Neuro
I made the mistake of staying with my primary for many years. It was finally an ER doctor that got me sent on to a Neuro and that was the best thing to ever happen for my E. I should have went to one 15 years earlier.
GO! ... and soon!
I made the mistake of staying with my primary for many years. It was finally an ER doctor that got me sent on to a Neuro and that was the best thing to ever happen for my E. I should have went to one 15 years earlier.
GO! ... and soon!
Thank you for your support
Thank you all for your support. I think I have found away around my primary with out stepping on her toes. I dont want to, as she is my back up for when I am in crisis with my RSD. Very few physicans are willing to treat RSD. But my psychologist wants me to have an EEG. So she is willing to refer me to a neurologist.( I need a referral so my insurance will cover it) I greatly appreicate your encouragement and support- I just didnt not want to sit here waiting for the other shoe to fall, but also didnt want to be obsessing. So I really appreicate the encouragement to follow this through. Sincerely, CZ
Thank you all for your support. I think I have found away around my primary with out stepping on her toes. I dont want to, as she is my back up for when I am in crisis with my RSD. Very few physicans are willing to treat RSD. But my psychologist wants me to have an EEG. So she is willing to refer me to a neurologist.( I need a referral so my insurance will cover it) I greatly appreicate your encouragement and support- I just didnt not want to sit here waiting for the other shoe to fall, but also didnt want to be obsessing. So I really appreicate the encouragement to follow this through. Sincerely, CZ
Elaine H
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Hi Czz
Sounds to me as though you need to talk to an expert, and I would say you need an EEG if only to eliminate epilepsy from the running. Kick ass! My dear old mum bless her had to shout from the rooftops to get me the treatment and diagnostics needed to confirm that I had a form of epilepsy.
Keep us posted wont you mate, and I hope everything is ok and you get a good neurologist to look after you, keep in touch?
Lotsalove
Elaine x
Sounds to me as though you need to talk to an expert, and I would say you need an EEG if only to eliminate epilepsy from the running. Kick ass! My dear old mum bless her had to shout from the rooftops to get me the treatment and diagnostics needed to confirm that I had a form of epilepsy.
Keep us posted wont you mate, and I hope everything is ok and you get a good neurologist to look after you, keep in touch?
Lotsalove
Elaine x
Thank you Elaine!
Elaine, are you from Australia! when you said "mate" and Mum I was just wondering, my best girlfriend lives in Melbourne now, she used to live here I miss her so! But thank heavens for the internet. I will keep you posted. thanks again for everything. I lost my Mum too, four years ago, seems like yesterday. CZ
Elaine, are you from Australia! when you said "mate" and Mum I was just wondering, my best girlfriend lives in Melbourne now, she used to live here I miss her so! But thank heavens for the internet. I will keep you posted. thanks again for everything. I lost my Mum too, four years ago, seems like yesterday. CZ
Wally
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See if you can find a Epileptologist, a Neurologist that specializes in treating Epilepsy. They are difficult to find, but they have the experience and the answers.
http://www.aesnet.org/go/find-a-dr/epilepsy-com
Wally
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I don't mean to take anything away from Neurologists. I was first diagnosed by a Neurologist here in town. I then went to the University of WA and saw a Epileptologist that taught there. He reaccomplished all of the same tests my Neurologist ordered. Epileptologists usually deal with particulary difficult patients and they are very experienced Neurologists. I thought that since this diagnosis meant the end of both of my careers, I wanted to be absolutely certain that nothing was overlooked. The Epileptologist totally confirmed everything my Neuro told me. So now I get to embark on a new career, sigh............
Hi there, CZZ!!
Some how, I missed saying hi to you before, so I thought I would take this opportunity to do so now....
HI!!
Glad to see that you've found CWE.....we're a fun bunch, and Mr B has made us a wonderful home here.
Sorry about the delayed welcome.....
but glad to meet you anyway!!!!:banana::banana::bigsmile::bigmouth:
Some how, I missed saying hi to you before, so I thought I would take this opportunity to do so now....
HI!!
Glad to see that you've found CWE.....we're a fun bunch, and Mr B has made us a wonderful home here.
Sorry about the delayed welcome.....
but glad to meet you anyway!!!!:banana::banana::bigsmile::bigmouth:Thanks for the nice hello, Im so happy to have found the site and such nice helpful people. Thank you so much!CZ
Wally, i am going to request referral to an Epileptologist, for sure. It seems like if you dont start there youd end up there anyway so I might as well begin there. thank you again, cz
Wally, i am going to request referral to an Epileptologist, for sure. It seems like if you dont start there youd end up there anyway so I might as well begin there. thank you again, cz
