Scared and confused

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Trying to get answers. My epileptologist is being very stingy with what he tells me. I am scheduled for an EMU stay in two weeks. Referral if for pre-surgical work up. But my epileptologist has not had any discussions with me about surgery. Told I am having daily and frequent seizures in my temporal lobes; left more so than right. I take 2000 mg of Keppra a day and I still have the seizures. I am loosing feeling in my right leg and have been for a few months now with no improvement. My doctor has not told me if this is related. I meet with him on 1/28 because I told him I refused any more testing until he explains to me what is going on. And he will only discuss with me in person; not over the phone. this makes me so nervous and anxious that I think it is inducing seizures. I wake up and feel like jelly - literally. I continue to get weaker and my headaches just continue to get worse. I get all of the weird feelings including feelings of panic and anxiety, moments that I can not communicate, times where my words are lost and I can not express my thoughts, tingling tongue and extremities, tremors, extreme onset of head pain, etc. I am trying to live life normal but feel like I am lost half the time. When I get upset about anything, my body goes into shut down mode and I feel like every sound and every moving object is right in my face getting louder and moving faster. I total feeling of loosing total control. I am extremely sensitive to lights especially when flashing or flickering. Can anyone relate to this? Can anyone tell me that I am not dying! And is it normal to be loosing sensation that is not coming back or improving?

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So one of the things I learnt

Submitted by Jazz101 on Mon, 2019-01-21 - 17:50

So one of the things I learnt from my neurosurgeon is try not to guess. I did it once dealing with a different situation and it did a job on me. Guessing can make so many things that might not even be an issue seem like a real issue. And that's because the brain is so interconnected. The creative side of the brain can really go to work when something is a bit off but no one seems to be able to give us either of the three answers: "Here is what we know; Here is what we don't know; and Here is what we want to take a closer look at given we don't know this.'"Given you have seizures, what I will say to you is try to minimize guessing. I say that because guessing under certain circumstances spurs anxiety and all of the imaginable things to throw us off.Today is the 21st. amh. You said you have an appointment on the 28th, a week away. In a game of probability, the in-person conversation your epileptologist wants to have with you is not about dying. Had that been the case they would have already wanted to meet with you.I guess what I am trying to say to you is, yes I get the anxiety, but no, I don't think you are dying. I have had Epilepsy since I was 4 years old. I have dealt with doctors all my life, some who were great communicators and some who weren't. Not fun if a doctor isn't a great communicator with patients and vice versa.In neurology a doctor can't always have all of the answers without tests. That said, it would help if he or she is able to say to you; "This is what we know so far, and we would like to do some additional tests to gather more specifics relative to X, Y and Z."My neurosurgeon was that way. He always briefed me on what was established and what was still left to follow up on given other circumstances. When a doctor is a great communicator then you have little guessing to do regardless of how bad something may look because you already have a "no guessing" relationship with that doctor. I don't know the what the style of communication is like with you and your epileptologist so I can't really say what's going on here. By style I mean whether he or she is willing to say to you; "We don't know yet so we would love to take a closer look" versus just saying "Okay, let's do another test in two weeks" without telling you the purpose of the test and why it is necessary. My best advice to you is to assess how things are affecting you. If you find you are constantly in a nonstop guessing game and it's overwhelming you, then you should speak with your doctor about it or visit the emergency room. Overwhelming anxiety has a domino effect if we can't balance it a bit. As a result if you feel like you are at least not getting more anxious then you should wait out for that appointment on the 28th. If the anxiety gets worse, then I think you should feel free to make trip to the emergency room and spell out how overwhelmed you are. With Epilepsy one of the things you want to balance to the best of your ability is anxiety. By that I don't mean you can't feel anxious at all. No. That can happen to any of us so it's okay to be a bit anxious sometimes. But if anxiety becomes overwhelming, yes, that's something to feel free to visit the ER and make known. I hope what I said helps ease some of the anxiety so that you don't become too overwhelmed. After all, anxiety can really do a job on anyone. I know that from experience. Best Regards

So one of the things I learnt from my neurosurgeon is try not to guess. I did it once dealing with a different situation and it did a job on me. Guessing can make so many things that might not even be an issue seem like a real issue. And that's because the brain is so interconnected. The creative side of the brain can really go to work when something is a bit off but no one seems to  be able to give us either of the three answers: "Here is what we know; Here is what we don't know; and Here is what we want to take a closer look at given we don't know this.'"Given you have seizures, what I will say to you is try to minimize guessing. I say that because guessing under certain circumstances spurs anxiety and all of the imaginable things to throw us off.Today is the 21st. amh. You said you have an appointment on the 28th, a week away. In a game of probability, the in-person conversation your epileptologist wants to have with you is not about dying. Had that been the case they would have already wanted to meet with you.I guess what I am trying to say to you is, yes I get the anxiety, but no, I don't think you are dying. I have had Epilepsy since I was 4 years old. I have dealt with doctors all my life, some who were great communicators  and some who weren't. Not fun if a doctor isn't a great communicator with patients and vice versa.In neurology a doctor can't always have all of the answers without tests. That said, it would help if he or she is able to say to you;  "This is what we know so far, and we would like to do some additional tests to gather more specifics relative to X, Y and Z."My neurosurgeon was that way. He always briefed me on what was established and what was still left to follow up on given other circumstances. When a doctor is a great communicator then you have little guessing to do regardless of how bad something may look because you already have a "no guessing" relationship with that doctor.  I don't know the what the style of communication is like with you and your epileptologist so I can't really say what's going on here. By style I mean whether he or she is willing to say to you; "We don't know yet so we would love to take a closer look" versus just saying "Okay, let's do another test in two weeks" without telling you the purpose of the test and why it is necessary. My best advice to you is to assess how things are affecting you. If you find you are constantly in a nonstop guessing game and it's overwhelming you, then you should speak with your doctor about it or visit the emergency room. Overwhelming anxiety has a domino effect if we can't balance it a bit. As a result if you feel like you are at least not getting more anxious then you should wait out for that appointment on the 28th. If the anxiety gets worse, then I think you should feel free to make trip to the emergency room and spell out how overwhelmed you are. With Epilepsy one of the things you want to balance to the best of your ability is anxiety. By that I don't mean you can't feel anxious at all. No. That can happen to any of us so it's okay to be a bit anxious sometimes. But if anxiety becomes overwhelming, yes, that's something to feel free to visit the ER and make known. I hope what I said helps ease some of the anxiety so that you don't become too overwhelmed. After all, anxiety can really do a job on anyone. I know that from experience. Best Regards

So one of the things I learnt from my neurosurgeon is try not to guess. I did it once dealing with a different situation and it did a job on me. Guessing can make so many things that might not even be an issue seem like a real issue. And that's because the brain is so interconnected. The creative side of the brain can really go to work when something is a bit off but no one seems to be able to give us either of the three answers: "Here is what we know; Here is what we don't know; and Here is what we want to take a closer look at given we don't know this.'"Given you have seizures, what I will say to you is try to minimize guessing. I say that because guessing under certain circumstances spurs anxiety and all of the imaginable things to throw us off.Today is the 21st. amh. You said you have an appointment on the 28th, a week away. In a game of probability, the in-person conversation your epileptologist wants to have with you is not about dying. Had that been the case they would have already wanted to meet with you.I guess what I am trying to say to you is, yes I get the anxiety, but no, I don't think you are dying. I have had Epilepsy since I was 4 years old. I have dealt with doctors all my life, some who were great communicators and some who weren't. Not fun if a doctor isn't a great communicator with patients and vice versa.In neurology a doctor can't always have all of the answers without tests. That said, it would help if he or she is able to say to you; "This is what we know so far, and we would like to do some additional tests to gather more specifics relative to X, Y and Z."My neurosurgeon was that way. He always briefed me on what was established and what was still left to follow up on given other circumstances. When a doctor is a great communicator then you have little guessing to do regardless of how bad something may look because you already have a "no guessing" relationship with that doctor. I don't know the what the style of communication is like with you and your epileptologist so I can't really say what's going on here. By style I mean whether he or she is willing to say to you; "We don't know yet so we would love to take a closer look" versus just saying "Okay, let's do another test in two weeks" without telling you the purpose of the test and why it is necessary. My best advice to you is to assess how things are affecting you. If you find you are constantly in a nonstop guessing game and it's overwhelming you, then you should speak with your doctor about it or visit the emergency room. Overwhelming anxiety has a domino effect if we can't balance it a bit. As a result if you feel like you are at least not getting more anxious then you should wait out for that appointment on the 28th. If the anxiety gets worse, then I think you should feel free to make trip to the emergency room and spell out how overwhelmed you are. With Epilepsy one of the things you want to balance to the best of your ability is anxiety. By that I don't mean you can't feel anxious at all. No. That can happen to any of us so it's okay to be a bit anxious sometimes. But if anxiety becomes overwhelming, yes, that's something to feel free to visit the ER and make known. I hope what I said helps ease some of the anxiety so that you don't become too overwhelmed. After all, anxiety can really do a job on anyone. I know that from experience. Best Regards

Scared and confused

Comments

So one of the things I learnt

Submitted by Jazz101 on Mon, 2019-01-21 - 17:50

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