FRUSTRATED!!

Re: FRUSTRATED!!

Submitted by tavi28 on Thu, 2012-04-19 - 20:28

I will put your husband and you in my prayers.  I believe that you must quickly must find a new neurologist.  My trust changed in a neurologist I had for years.  That is not to say you can not have seizures related to other things besides head injury.  I know because I had a head injury like your husband and my seizures began but now years later after 2 brain surgeries, I have them related to stress or if I miss my medicine.  It really saddens me when some neurologists immediately (in your situation the md's THEMSELVES have seen repeated seizure after seizure, all diferent types included and because they see normal "ct's and mri's and eeg's" they can NOT say epilepsy or seizure diagnosis.  They want him to see a neuro psychologist when he has no ptsd and does not feel depressed.  So ya'll (know i'm a southerner) must trust GOD and press forward!  I lost my job, have short term and long term memory issues, anger issues (even with HIM but gotta trust HIM!) and many other things but i REFUSE to give up!  So no matter what it looks like now (even with a visit today) find a new neurologist not neuro psychologist who will trust in the fact about what you say.  Talk to others, google, do whatever you got to do to find a new one but first trust in HIM.  He will never leave you nor forsake you, take it from someone who knows.  grace and peace

Re: FRUSTRATED!!

Submitted by Snaderly on Thu, 2012-04-26 - 19:40

I too, will put you and yours in my prayers. However, I will add a couple comments that may give you comfort. When I had a stroke several years ago, but neurologists refused to test me "because it may feed your neurosis" (I do have a troubled past, but have been to a lot of counseling for it), the then neuro also sent me to a neuro psychologist. I was so desperate to find the cause of my problems I went. I was willing to accept whatever the cause was, but in my heart of hearts, I knew it wasn't psychological. I was as honest as I could be with the neuro psych. After, I found out that they can tell from their testing methods how honest you have been with them. (it has to do with the consistency in which you fall short in certain areas in the testing. They are very good at it, and you can't fake it if you try.) But the good news is that from this testing I was taken more serious. I went to another neurologist eventually because of a personality clash with this first neurologist, who finally did an MRI, found something wrong, but miss-diagnosed me for a lot of years with MS, his specialty, but that is another story. Now my current neuro, when I was in her office one day, after having a seizure in the night (I didn't know you could have them in your sleep until then), and a bunch of other seizures, has done two EEGS, both of which were abnormal and consistent with where I have scar tissue from my old stroke. Then I had a partial complex (i remember pieces of it) seizure in her office, which is an experience I can't even begin to explain. (the second eeg was actually after that, and abnormal). She had me go on topamax, which I had already had a bad experience from in the past, used for migraines.) My seizure activity increased, she was starting to switch me from topamax to Vimpat, but after one bad seizure in the bathroom where I ended up banging my head a few times and had huge knots, I ended up in the hospital over last Christmas for continuous EEG monitoring, where they took me off all seizure meds, trying to induce one. All that happened is my emotions went amuck and one "psychogenic" seizure (I acknowledge that one was--the sudden withdrawal made me crazy), and a diagnosis of PNES. And again, because I have been honest with MDs about my past, I was again labeled neurotic. My regular neuro (who didn't have privileges at the video/continuous monitoring hospital), is thinking I have both kinds of seizures, however. I know you didn't need to know my whole past. Just venting myself, and letting you know I know how it is to not be taken seriously. I would recommend going to the neuro psych, however, if for nothing else, just to prove what you already know and so you will be taken serious in the future. The hospital sent me to counseling, which I accepted. Guess what we spend a lot of time on? PTSD like symptoms from the way doctors have treated me. Once, they wouldn't take a past like mine seriously, and now, it seems the pendulum has swung the other way and that is all they want to blame anything on they can't figure out. Good bless you in your pursuits. I hope you get answers soon. Oh, by the way, in my study of seizures, although not common, you CAN have epileptic seizures with nothing showing up in an EEG. It just means the seizure activity is deep in the brain, where the electrodes have a hard time reading it. GOOD LUCK! ~~~Sandy~~~ :-)

Re: FRUSTRATED!!

Submitted by aluck12 on Fri, 2012-04-27 - 13:17

You may also want to try looking into an epilepsy specialist, my neurologist didn't think I had a problem and I was just some teenage girl trying to get diagnosed for attention, then I went to an epilepsy specialist who saw m episodes first hand and diagnosed me within seconds. All of my tests came back normal, EEG's MRI, EKG etc.

ASHLEY