Sorry about being absent again. Our ISP spent 10 days "losing" work orders, etc... AFTER we were patient for 2 weeks while they dealt with problems in the trunk line to our neighborhood. Part of that was while we were at the hospital, but the last week was the reason I didn't post after that.
We did feel the earthquakes, not sure how many made the news nationally, but there were four days where we felt something, but only one was considered a big deal on our local news. I have no clue why the others were not a big deal, esp as my family has lived here for over 30 yrs and this is the first time we ever felt anything like that. We are all fine, no damage to our homes or persons or property. It felt really strange when the tremors hit. Not sure how to explain it.
The neuro says that the problems are not starting in her brain. They saw nothing on the eeg at all. Jess suppressed the shaking most of the time because not suppressing it most of the time sends her pain into the stratosphere. She tried, but when she was sitting there with tears streaming down her face from the pain, working to not give in to big sobs because that makes her hurt even more, and the nurses and reg doctor on the floor did nothing but say they were sorry, well, she had to do what she could to be able to handle the pain.
I am giving up on neuros. There is NO point to further appts for anything but her migraines. Again, she was on an anti seizure medication during the eeg - 300 mgs of neurontin (gabapentin) twice a day. So they saw no absence seizures because we could tell at 200 mgs twice a day that it was stopping them. I asked several times for them to take her off of the medication and was told that they would call the neurologist. I don't much care. I will fight anyone who tries to take her off of the neurontin unless she comes up with side effect problems because it is controlling her migraines. That alone is a miracle, in my opinion. She was dancing around a couple days ago because she realized that she had only had one migraine in the 2-3 days before, all during, and the 3-4 days after her period. This is the FIRST time she has not had a migraine that entire time. It is also the first time that the migraine went away completely with one dose of imitrex. Usually it would get better for 6-8 hrs and then come back full power. (We have tried other migraine medications, but none work as well as imitrex for her).
While I still feel there is a neurological component to her problems, and I do NOT believe the docs when they say that it isn't possible to have a seizure and not have it register on an eeg, I am moving on. I won't spend my time/energy/daughter's time continuing to fight to get a neuro to listen and try to do something. I will fight to keep her on neurontin, but I think our family doctor will rx that for migraine prevention if the neuro won't continue it. But I am done with neuros for the time being.
I am goign to get her into a rheumatologist and maybe a doctor who deals more with muscles. Still doing some research. I am going to try to get her in to see the rheumatologist that I love. Not sure if he will see her as he usually treats adults, but she is 16 and is close to adulthood, so he might see her.
Thanks for ALL your support and good wishes and helping keep me sane as I deal with all of this. with-o you I would be far less able to help Jess because I would have lost my mind a long time ago. I hope you had a pretty good week or so, and will get back up to speed here on the board.
You were all in my thoughts and prayers every day, even when I couldn't get online.
We did feel the earthquakes, not sure how many made the news nationally, but there were four days where we felt something, but only one was considered a big deal on our local news. I have no clue why the others were not a big deal, esp as my family has lived here for over 30 yrs and this is the first time we ever felt anything like that. We are all fine, no damage to our homes or persons or property. It felt really strange when the tremors hit. Not sure how to explain it.
The neuro says that the problems are not starting in her brain. They saw nothing on the eeg at all. Jess suppressed the shaking most of the time because not suppressing it most of the time sends her pain into the stratosphere. She tried, but when she was sitting there with tears streaming down her face from the pain, working to not give in to big sobs because that makes her hurt even more, and the nurses and reg doctor on the floor did nothing but say they were sorry, well, she had to do what she could to be able to handle the pain.
I am giving up on neuros. There is NO point to further appts for anything but her migraines. Again, she was on an anti seizure medication during the eeg - 300 mgs of neurontin (gabapentin) twice a day. So they saw no absence seizures because we could tell at 200 mgs twice a day that it was stopping them. I asked several times for them to take her off of the medication and was told that they would call the neurologist. I don't much care. I will fight anyone who tries to take her off of the neurontin unless she comes up with side effect problems because it is controlling her migraines. That alone is a miracle, in my opinion. She was dancing around a couple days ago because she realized that she had only had one migraine in the 2-3 days before, all during, and the 3-4 days after her period. This is the FIRST time she has not had a migraine that entire time. It is also the first time that the migraine went away completely with one dose of imitrex. Usually it would get better for 6-8 hrs and then come back full power. (We have tried other migraine medications, but none work as well as imitrex for her).
While I still feel there is a neurological component to her problems, and I do NOT believe the docs when they say that it isn't possible to have a seizure and not have it register on an eeg, I am moving on. I won't spend my time/energy/daughter's time continuing to fight to get a neuro to listen and try to do something. I will fight to keep her on neurontin, but I think our family doctor will rx that for migraine prevention if the neuro won't continue it. But I am done with neuros for the time being.
I am goign to get her into a rheumatologist and maybe a doctor who deals more with muscles. Still doing some research. I am going to try to get her in to see the rheumatologist that I love. Not sure if he will see her as he usually treats adults, but she is 16 and is close to adulthood, so he might see her.
Thanks for ALL your support and good wishes and helping keep me sane as I deal with all of this. with-o you I would be far less able to help Jess because I would have lost my mind a long time ago. I hope you had a pretty good week or so, and will get back up to speed here on the board.
You were all in my thoughts and prayers every day, even when I couldn't get online.