I've had seizues for over 20 years now, and can't seem to get them under control. I wear a helmet when I walk because I don't know when they are going to happen and I like to fall as a tree. I shouldn't complain since I used to have over 100 a month and now I have 10 to 30 a month. More of the frustration at the moment is because of the support group I went too. For the most part, they have things going better for them and they told me to leave since I depress them with mine not being under control. I can't really talk to anyone outside the box, that is without epilepsy, and I was hoping to chat with someone to let the frustration out.
needing help with frustration
- Thread starter Tyreene
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neilB
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Hi Tyreene,
Well you've come to the right place. Feel free to vent/rant/scream (as well as you can in writing!). I recently joined and spend a lot of time reading and writing hear and have learned a lot. Trust me, you'll find the best people in the world here!:agree:
Neil
Well you've come to the right place. Feel free to vent/rant/scream (as well as you can in writing!). I recently joined and spend a lot of time reading and writing hear and have learned a lot. Trust me, you'll find the best people in the world here!:agree:
Neil
I just don't get it. Yes I have had seizures for a long time, and I know that they aren't under the control that I want, but I am human. Why am I so depressing that I have to leave a support group? I thought that they are the people that can help. No one in my family has epilepsy. One friend does, but she lives far away. I do talk to her and email her, but I got to go to the support group and talk to them in person. UGH!!
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neilB
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Well I guess like every thing in life, some things just aren't a "fit." I know it's frustrating and I never told people that I had seizures until I had one at work (not counting the ones at home or on the way to work). So now, people know and (of course my family knows) but I'm not sure what they said when it happened at work but at this point I really don't care. Your neurologist should be able to try other meds or I've seen some people with VNS (vagus nerve stimulator) that seem to have pretty good success. Hang in there!
Neil
Neil
I do have the VNS. Before I had it, I had at least 100 seizures a month. Now it's about 10 to 30. A good thing to do. I appreciate you chatting at the moment, but I need to get going. I didn't realize what time it was. My dad is coming over to get me and we are going out to dinner. Please email me and let me know if it's ok to keep talking tomorrow. Thanks again.:bigsmile::bigsmile:
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I have a VNS also. I am still having to take meds and do still have seizures, but the ammount of meds have been greatly reduced and the seizures that I have aren't nearly as bad or as often.
Does your neuro maybe need to increase the voltage on the VNS? I'm not sure if that's the acutal medical term for it but that's what my family calls it. How long have you had the VNS?
Does your neuro maybe need to increase the voltage on the VNS? I'm not sure if that's the acutal medical term for it but that's what my family calls it. How long have you had the VNS?
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Hi Tyreene,
I also have the VNS after having an unsuccessful left temporal lobectomy and trying many medications. Do you see a neuro or an epileptologist? My epileptologist is at the U of Colorado in Denver. I've had to have my VNS set to "rapid cycling" for better control of seizures, instead of the initial setting of charging every 5 minutes, it now charges every 1 1/2 minutes for 7 seconds. Somewhat irritating when I speak, but it better controls seizures for me. And like Valerie said, I still take meds, but not as much as I once did.
Sounds to me like that so called support group needs help themselves to deal with difficult cases such as ours.
I also have the VNS after having an unsuccessful left temporal lobectomy and trying many medications. Do you see a neuro or an epileptologist? My epileptologist is at the U of Colorado in Denver. I've had to have my VNS set to "rapid cycling" for better control of seizures, instead of the initial setting of charging every 5 minutes, it now charges every 1 1/2 minutes for 7 seconds. Somewhat irritating when I speak, but it better controls seizures for me. And like Valerie said, I still take meds, but not as much as I once did.
Sounds to me like that so called support group needs help themselves to deal with difficult cases such as ours.
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seizingbeauty
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Hi,
Glad you found your way here to CWE. Sorry that you found such a awful "support group". There are plenty of people here who offer a strong shoulder and a good listening ear.
Cat
Glad you found your way here to CWE. Sorry that you found such a awful "support group". There are plenty of people here who offer a strong shoulder and a good listening ear.
Cat