Hi Ya'll! I have been having seizures, I know this becuase of what those who are around me tell me what happens when I have one, the post affects as well as they run in the family. However, all of my EEG's (only 2) have been normal. I am taking tegretal, but the neurologist thinks that I am just a mental case and I am not having seizures, but yet he will not give me a release for me to have my liscence back, or to go back to work. I am also taking Klonopin with the tegretal as my seizures have dropped with the medication to only a few a day, mostly they are petite mal seizures, I am still having them daily. I do not know how to convince my doctor that this is what is going on. He will not listen to me and he is arogent as a B. He is one of those doctors that you just don't question his ability to treat you. I am upset because this has been going on for years, I have been preliminarily dx'ed with atypical/absence seizures during one of my numerous hospital stays. I have migraines that complicate it all. I have had these problems my entire life, and nobody would just listen to me. It was always an excuse. First my blood pressure was low, but it was normal for my body height and weight, then it was becuase I was pregnant. Now my BP is fine and I am not pregnant and I am told that I am a mental case. Especially since this has been going on since I was a young child. My parents, no support there always thought I just wanted attention and would make myself fall to the floor, but that isn't the case, I want my life back in order and I am running out of doctors, any body else go through this. I see a psychologist who does neuro bio feedback with me, but there are certain parts of my brain that are not responding. He wants a PET scan to be done, but insurance is fighting that becuase he isn't a neuro, but the neruo says he doesn't see a need. Ugh I am so frustrated, anybody else please suggestions, comets, anybody else been through this? This help!!!!!!
I know what you are saying. Every time I get one of my spells is when I'm really stressed out. I told my neuro this and he just looked at me like I'm stupid and I don't know what I'm talking about. I wish I could find a neuro who knew what was going on too. All of my eeg's and MRI's are normal. My med level is fine and all he can say is I don't know what is going on. That sure reasures me about everything.
Krammer I feel your frustration and "pain" if you will seriously. The strange thing is that a different doctor that is helping me with my migraines has put me on the tegretal and klonopin because he wittness these spells himself a few times as well as the hospital records from one of the numerous times I was in the hospital for all of this. Before I was even put on the meds this doc contacted my neuro and the neuro said that it was fine to put me on the meds, which really helped, now the neuro looks at me like a "head case" and wants to take me off of the meds. I basically gave a non-professional and frustrated f.u. to the doc and said when you take the time to help me then I will think about coming off the meds that are helping me. Two of my doctors want to do a pet scan/brain spec because it will show all the damage to my brain from the concussions that I have had in my life and from when my ex husband was beating me, when we were married of course. However, the neuro doesn't seem to think that that is a good idea. I have a medical background myself and know what I am talking about when I go to the doctor, literally I feel like I have to do homework before I even go otherwise it is more of a waste of time. I have filed complaints with the American Neurological Association two times but the second time I took his liscence number off a script that he wrote for me that is allegidly to help me sleep. Hopefully I will get some help there. What I have found is that the doctors are forming their opinions before they even see you. What really is the kicker is that I did an ambulatory EEG in the middle of march and this wonderful doc cares that much about helping me that he will not bother to read or give me the results until June. I have learned from my other doctors that they feel I am having seizures of the temporal lobe, my ex's favorite spot to beat me, and that a seizure of that area will not show on an EEG scan, however, a pet scan will show where the areas are affected. What I do not understand is if it will possibly help the patient and the insurance company is more then willing to cover it, then why not do it. With all of this going on I have short term memory problems and some long term memory problems and when I tell him that I can't remember somethings he literally gets angry with me. And then asks me why, my responce finally to him was I don't know that is why I am here. I am taking my fiance with me to my next appointment in hopes that the doc will be more receptive to helping me, literally trying to intimidate the doctor to help me. This is not a mental problem, I have had comprehensive psycological evaluations done not once but twice to make sure the first set came out right, and both times the evals have come back to show that it is not a mental problem. however, the doc doesn't want to hear that because he knows everything. You tend to get that frustrated that you don't know what to do or who to turn to. When I have two other doctors working on the migraines, because the neuro doesn't want to even help with that, and both doctors want to help with everything else and are trying but are getting red tape from the one doc holding the reins if you will to my treatment. Whatever happened to a doctors code of ethics to help a patient to their fullest extent whether the answer is in black and white or confusing as heck? He acts like I am making all of it up, but yet what I am telling him what is going on is nothing that you can find in a text or information on seizures online, becuase well I haven't found that info online. I am lucky enough to have an aunt in the medical field as well and when I explain things to her in as much detail as I am told and what i know from how I feel she can tell me exactly what she thinks is going on. Doctors literally need to get their head out of their be hinds and realize that not every patient is the same and when you have a patient literally begging for help for life to be back to normal, you should be wanting to help that patient. Anybody else out there please help, please respond to me, or write to the neurological association. I know I am not the only one out there with these problems. Not to mention my cousin also has a seizure disorder and his doc wanted to take him off of his meds 2 days after he wrecked his vehicle for having a seizure while he was driving. Yet the doc doesn't think I am having seizure but yet he states he is not sure, he will not release me to the state to drive, nor will he give me permission to go back to work. Now tell me that makes sense. Anybody even know where else that I could get help with resolving this issue at this point I do feel desperate!!! I have children to care for and have had to rely on another adult being with me 24/7. When my fiance is at work a family member is with me, there is no time that I am alone becuase they are afraid something is going to happen, like a year ago I had a seizure when I was going up a flight of stairs and fell right back down. Thankfully my son knew what button on the phone to push to get my fiance who found me half in and out of it laying at the bottom of the steps. which gave me another lovly hospital visit. These doctors think we don't know but in all honesty it is our bodies and we know when things are not right.
The only thing I can think of is if the Psych can give you a referal, and or have a SECOND Dr recomend the PET, apart from the problamatic Neuro's who don't want to.
I understand the problems with the Neuros. I had one at the county hospital at the epilepsy clinic. He ended up as head after my doc stopped seeing patients and was now just advising. The new idiot didn't understand epilepsy! He didn't know his medications very well and what drug interacted with what. It took ME to call him when he tried putting me BACK ON Depakote Dilantin and Teg (the second time). I had to explain why not in front of two interns. I had no problem making a donkey out of his poor judgement not knowing the drugs interactions and warnings not to be on them at the same time. Watching the interns bite their lips was funny.
I was being treated in that hospitals ER and the attending wrote me out a script for TegretolXR 300mg. I told her there is no such pill. She told me in no uncertain terms it is in her green pill ref. book in her pocket, so it must exist. I again told her Teg XR comes in 100, 200 and 400. Carbatrol is 200 and 300. It didn't make any difference. She gave me a script for Tegretol XR 300mg (for a month) qty 30 take 2x a day. OK... how am I to take 30 pills for a month if it will only last me 15 days; and the pill doesn't even exist, with NO refills!?!
Walked up that major error to Neurology and had them rip it up and write out a new one after I explained that Attending wouldn't listen to me.
Dr's usually don't like you to be educated. That one hated me for knowing as much as I did. My current Epileptologist has no problem and LIKES it. It reassures him on my safety. He knows I read up on medications if I change or am changing. I ASK for the blood levels not just if I am "ok" or not. I want to know how high I am on the scales. Being able to cut off your Dr when he's explaining a new drug and keeping the same line going from the paper on the side effects you may experience made my Dr laugh. It also let him know I did my homework and was prepared to start the new drug (mostly). You can't be 100% ready. That was with Topa; I think I still have minor issues with it but I am not increasing. If anything will happen it will be a decrease down the road.
Can completely understand.....get a new doc, ask for a psych eval, to prove your case, and tell the other doc he's fired (might print off some info to send with the adios letter - I've done that before when a doc has been completely out of line). You have a right to be heard. You can also notify the state medical board, and file a complaint.
neurologist won't help what do I do 
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