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Believe...Miracles do happen... the power of believing
Fri, 06/17/2005 - 20:56Comments
RE: RE: Believe...Miracles do happen... the power of believing
Submitted by txrhb1 on Sat, 2005-07-16 - 13:21
Hi!
How hard this must be for you! You came to the right place to get the encouragement you need and find people that truly do know how you are feeling and how frightening it can be. It's hard not to be able to drive, and I can certainly empathize with that. I was first diagnosed at 19, but never had a seizure, took no meds, anything. Then at age 47, I had my first seizure. So for 2 years now, I haven't been able to drive. It really is a difficult position, but I pray that you will find a way to deal with it. I have been very lucky to have friends and family that support me quite a bit.
For the first year and a half, I went to a neuro that never really gave me answers. So like you, every twitch, noise, smell, etc. made me think "OH NO", it's an aura and I'm going to have another seizure. I finally started seeing a new doctor about 4 months ago who has really helped. Not only has she been able to answer my questions, but she has helped my psychologically deal with it. Although there are still days when i feel that I am losing it.
Keep hanging in there, and go ahead and let yourself cry when you need to. Rest assured that you are not "going crazy", and that there is a medical reason for what you are experiencing. Hopefully once you get your EEG and they get you on a medication, you will feel better. The first few weeks of a new medication for me , are the hardest. Once you adjust, hopefully, for you, the side effects won't be so bad. I have known many people who have epilepsy and are controlled by meds and live a wonderful, productive life.
I wish I knew more about your diagnosis, but have never heard of SUBEPENDYMAL HETEROTOPIA before. I'll read up on it. anytime you need someone to talk to, you can reach me at [email protected]
Hugs and blessings to you,
Barbie
Hi!
How hard this must be for you! You came to the right place to get the encouragement you need and find people that truly do know how you are feeling and how frightening it can be. It's hard not to be able to drive, and I can certainly empathize with that. I was first diagnosed at 19, but never had a seizure, took no meds, anything. Then at age 47, I had my first seizure. So for 2 years now, I haven't been able to drive. It really is a difficult position, but I pray that you will find a way to deal with it. I have been very lucky to have friends and family that support me quite a bit.
For the first year and a half, I went to a neuro that never really gave me answers. So like you, every twitch, noise, smell, etc. made me think "OH NO", it's an aura and I'm going to have another seizure. I finally started seeing a new doctor about 4 months ago who has really helped. Not only has she been able to answer my questions, but she has helped my psychologically deal with it. Although there are still days when i feel that I am losing it.
Keep hanging in there, and go ahead and let yourself cry when you need to. Rest assured that you are not "going crazy", and that there is a medical reason for what you are experiencing. Hopefully once you get your EEG and they get you on a medication, you will feel better. The first few weeks of a new medication for me , are the hardest. Once you adjust, hopefully, for you, the side effects won't be so bad. I have known many people who have epilepsy and are controlled by meds and live a wonderful, productive life.
I wish I knew more about your diagnosis, but have never heard of SUBEPENDYMAL HETEROTOPIA before. I'll read up on it. anytime you need someone to talk to, you can reach me at [email protected]
Hugs and blessings to you,
Barbie
RE: Believe...Miracles do happen... the power of believing
Submitted by ButterflyGrl on Sat, 2005-07-16 - 12:22
I've just been recently diagnosed with SUBEPENDYMAL HETEROTOPIA. A congential condition primarily found in women that has now caused me to have seizures. I had my first grand-mal almost 3 weeks ago now.I just got a letter in the mail yesterday saying my licence has been suspended. I haven't been able to stop crying. I've been crying on and off since yesterday.Yes, I feel like my independence has been taken away from me due to something I can't control. I know it's not the end of the world, but still...it sucks to have something taken away from you that you really enjoy. This whole experience has brought on much anxiety as of "When will it happen again, or will it?" I am not on any medication as of yet, I am still pending the EEG results, which I hope to get this coming week.I thank my lucky stars for what I DO have, and I keep telling myself...it will get better. Then I sometimes slip back into the depressed, crying mode. I know it will take some time, but when I know I am not myself, I struggle with it.I am not good at dealing with this. I don't deal well with stress or anxiety. Every twinge, twitch, or dizzy spell I experience, I always think it's an AURA, and then I try to convince myself, that maybe it isn't, and it's just a figment of my imagination. I've been feeling like this EVERY DAY for the last 3 weeks. I feel like I'm gonna drive myself crazy.It's affected the way I get along with my mother. She keeps telling me that "I am making more out of this than it is" by stressing myself out over it. Then I say, "HOW DO ***YOU*** KNOW what I am going through!!!" then I kick myself...I mean, heck....she was the one that found me when I had my first seizure 3 weeks ago. So, from an outside perspective yes. She KIND OF knows. I sure as hell wouldn't've wanted to see what I looked like while I was having my seizure. So, for someone else to see that....yikes.I just feel like I am losing my grip, and I am afraid of what's ahead. Afraid of going on medication because of all the side effects...afraid of developing severe anxiety...just PLAIN AFRAID.I wish I could just get a hold of myself. I am trying. I guess this just takes time.Could really use some encouragement right about now.