giveasmile
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Soon after I posted in this thread:
http://www.coping-with-epilepsy.com/forums/f34/hell-not-understanding-my-e-story-22394/
...things took a really bad turn. It wasn't surprising considering that my Neuro only gave me a 30 day supply of Ativan (no other meds) and no follow up appointment. I don't know if she was trying to prove a point and make me accept my situation or trying to get me to change doctors. Either way, I turned to you guys for help and you were AMAZING. I did everything you suggested and now I feel much, much, better about my situation. I am on a medication I haven't tried before (trileptal) and was still taking Ativan daily and Klonopin before bed (temporary until the chaining stopped.) Last night I achieved my first seizure free sleep in weeks and I ended a 3 day/night string of horrors! Here is a summary of what you told me to do that worked:
1. See another Neuro, get a second opinion.
2. Write down, very concisely, what you want.
3. Talk to a counselor or psychologist for guidance.
4. Find an ally willing to go to an appointment with you.
5. Bring ally and a list of very detailed questions you want answered.
6. Eat, sleep, excercise in the best/healthiest/safest way for you.
7. Set alarms for all medications. Ask pharmacist if any are contraindicated.
8. Be willing to re-try medications titrating much slower, or only brand name.
9. Take all of this one day, one minute, at a time.
10. Use these forums regularly for support, and to support, others.
For me #5 was critical. I was not getting my questions answered until I had a strong ally in the room with me. I didn't think I knew anyone who would do this but I found myself trapped in a 3 day string of temporal lobe partials by day and frontal lobe generalized seizures by night and the first person I called turned out to be a hero. She paged the doctor and brought me there first thing in the morning-- having my back with the staff, and got the doctor to sit back down until I got through my list of questions. The doctor, in turn, was blunt about my situation and where I was headed. My ally reached out to other family members to make them understand and back off all pressure to drive against doctors orders and do more than I can physically manage. The entire experience was so empowering as I feel like, for the first time, that this is not my fault or something I'm causing or not trying hard enough to stop. Instead of feeling sad about the 27 years I've lost to misdiagnoses I feel overjoyed to have a second chance at life. I think that between my ally, the Neuro, the Psychologist, and especially all of you-- that everything is going to become manageable and that I will be able to string together more and more great days. :clap:
http://www.coping-with-epilepsy.com/forums/f34/hell-not-understanding-my-e-story-22394/
...things took a really bad turn. It wasn't surprising considering that my Neuro only gave me a 30 day supply of Ativan (no other meds) and no follow up appointment. I don't know if she was trying to prove a point and make me accept my situation or trying to get me to change doctors. Either way, I turned to you guys for help and you were AMAZING. I did everything you suggested and now I feel much, much, better about my situation. I am on a medication I haven't tried before (trileptal) and was still taking Ativan daily and Klonopin before bed (temporary until the chaining stopped.) Last night I achieved my first seizure free sleep in weeks and I ended a 3 day/night string of horrors! Here is a summary of what you told me to do that worked:
1. See another Neuro, get a second opinion.
2. Write down, very concisely, what you want.
3. Talk to a counselor or psychologist for guidance.
4. Find an ally willing to go to an appointment with you.
5. Bring ally and a list of very detailed questions you want answered.
6. Eat, sleep, excercise in the best/healthiest/safest way for you.
7. Set alarms for all medications. Ask pharmacist if any are contraindicated.
8. Be willing to re-try medications titrating much slower, or only brand name.
9. Take all of this one day, one minute, at a time.
10. Use these forums regularly for support, and to support, others.
For me #5 was critical. I was not getting my questions answered until I had a strong ally in the room with me. I didn't think I knew anyone who would do this but I found myself trapped in a 3 day string of temporal lobe partials by day and frontal lobe generalized seizures by night and the first person I called turned out to be a hero. She paged the doctor and brought me there first thing in the morning-- having my back with the staff, and got the doctor to sit back down until I got through my list of questions. The doctor, in turn, was blunt about my situation and where I was headed. My ally reached out to other family members to make them understand and back off all pressure to drive against doctors orders and do more than I can physically manage. The entire experience was so empowering as I feel like, for the first time, that this is not my fault or something I'm causing or not trying hard enough to stop. Instead of feeling sad about the 27 years I've lost to misdiagnoses I feel overjoyed to have a second chance at life. I think that between my ally, the Neuro, the Psychologist, and especially all of you-- that everything is going to become manageable and that I will be able to string together more and more great days. :clap:
