I am just so confised with this doctor changing. But my attitude is still good. It just seems eveything takes so long. Yesterday I had some pretty bad seizures so I called the EPI Clinic like they told me to if the increased alot. When I have really bad seizures for a day or two I get jerks like in my legs and arms.I grind my teeth. My eyes will blink alot. My old Nerologist gave me medication for when that happened. Well I am really trying not to be a pain at this EPI Clinic. But I really needed something to make my body stop jerking. They never called back so my husband called my new PCP and told the nurse what was happening. She said that with out even taking to my DR. that he would not call in anything for my seizures but would page the neuro. and patch my phone num. in. He did call back and when I explained to him what my body was doing he said it was not from the seizures it was anxiety. Well how he new this without seeing me is beyond me. He did increase my zonegran and klonopin. I am sure ther is some anxiety from having so much seizure activity.But the involuntary jerking I really don't believe it is anxiety.It is just very hard to have another doctor treat you. Who has only met you once and just do evey thing over the phone. I would of liked to of gone in so he could see what was happening to me. But such is life.A University Hospital EPI Clinic is just so different then what I am use to. If anyone has any advice I could use some. Mary
I am just so confised with this doctor changing. But my attitude is still good. It just seems eveything takes so long. Yesterday I had some pretty bad seizures so I called the EPI Clinic like they told me to if the increased alot. When I have really bad seizures for a day or two I get jerks like in my legs and arms.I grind my teeth. My eyes will blink alot. My old Nerologist gave me medication for when that happened. Well I am really trying not to be a pain at this EPI Clinic. But I really needed something to make my body stop jerking. They never called back so my husband called my new PCP and told the nurse what was happening. She said that with out even taking to my DR. that he would not call in anything for my seizures but would page the neuro. and patch my phone num. in. He did call back and when I explained to him what my body was doing he said it was not from the seizures it was anxiety. Well how he new this without seeing me is beyond me. He did increase my zonegran and klonopin. I am sure ther is some anxiety from having so much seizure activity.But the involuntary jerking I really don't believe it is anxiety.It is just very hard to have another doctor treat you. Who has only met you once and just do evey thing over the phone. I would of liked to of gone in so he could see what was happening to me. But such is life.A University Hospital EPI Clinic is just so different then what I am use to. If anyone has any advice I could use some. Mary
Mary, I am so sorry! I agree with you that it seems odd he can tell your jerking is anxiety without seeing you!!
I am so sorry! I am sure the anxiety climbs because of a big increase in jerking!! Hoping that upping meds will help. Sounds like Ativan just for the clusters of seizures or Valium might have been a good choice.
So sorry you are having trouble with the epilepsy clinic. I know they often are harder to get in touch with or have a call back, depending on the doctor.
Hang in there! Hoping things have calmed down now...
It is so nice to have people understand what you are going through when no one else seems to. But I still have a very possitive attitude. Even with my family. That is my sisters. What they can't and won't understand is not my problem. And yes the increase in the klonopin seemed to have stopped the jerking. but my husband gave me one more then what the Dr. said. So I called back again today to let them know that it took two .5mg klonopin to get my body settled down. I also learned you do not say your old Neuro. did this. I don't think they want to hear what another doctor did. But I still have a very good attitude and am very proud of that. thanks for always listening to me. You must be an Angel Mary
You are teaching me a great deal about positive attitude Mary!! So glad the jerking has stopped!! Hang in there!! you are right, neuros do have easily wounded egos and DO NOT like hearing, "My other neuro did..." sigh....
Keep your chin up!!
Keep your chin up!!