Help and support greatly appreciated and needed asap. - Epilepsy Message Board

HippyChic8123 · 04-15-2005, 11:21 PM

Hi I have had what i think is epilepsy almost since i was born. i had febrile seizures growing up and they turned into grand malls and peti malls. i had a grand mall last year and i think i am still recovering from it with peti malls every so often. normally when PTSD sets in. I dont know how to describe it but the feeling scares the @#$# out of me. its a numbness that only happens in my hands and feet. sometimes i start shaking but on one side and it lasts for almost a half hour with a twinge type of feeling. i know i am over weight and i will tell everyone right now i weight about 190 lbs. i know that could be part of it, but i feel very strongly it is connected to the seizures too. the reason i am writing this is because, and it brings me to tears alot of the time, a neurologist i had went to see, had told me basically i was fat and that was the reason for all my complications without even discussing the seizures or anything else i was going through. he had told me i had waisted his time and he didnt want to have to see me in "his office" again, but that is the only good clinic around here, and there are other doctors i could see. so due to that one particular doctor, which i did make a gumpsion enough to complain a bout, which i almost never do, i havent seen a doctor in months., my foster sister thinks i have epilepsy, and thinks i should get a second opinion, only because she was diagnosed with it and takes medication for it. she had also stated the medication would help the way i have been feeling lately. i guess what i am looking for is help and support from other people who have been through the same thing, and what others opinions are, then i could print it and take it into my next dr visit if i do decide to go. ( hopefully before the next hospital treatment, which i cant stand overnighters). thank you for your time and support in reading this.

HippyChic8123 · 04-15-2005, 11:23 PM

btw i thought i would add a regular doctor i had in longview washington thought it could be psuedo seizures without me knowing about the febrile seizures up until a few months ago.

Phoebe · 04-16-2005, 03:19 PM

I am sorry you had such an A$& for a doc. There are many of them like that out there, and I have been to a few just like him. There also is no excuse whatsoever for that type of behavior toward any patient! The words Do No Harm come to mind. Seizures are not something that are easily recognized by most docs, and we end up diagnosed with all sorts of things that the doc does recognize, correct or not. What's worse is that sometimes they treat that incorrect diagnosis while the seizures continue which eventually causes irreversible damage to the healthy brain cells that are harmed over time by the misfiring ones. One of the most common misdiagnoses are ADD, ADHD, or Panic attacks, and any ole psych disorder etc. Those are not visible and have no specific tests to verify or rule them out, so they are easy to pull out as a diagnosis. The patient is the one who suffers since the seizures do progress if not stopped. That progressive process is called Kindling. It is important to get to a doc who will listen to you, assess every possible angle, and correctly diagnose and treat you. So many of us end up going from doc to doc to doc in search of that very special doc, and it is frustrating especially when it not only affects the quality of you life but also can cause harm due to the progressive nature of seizures when not treated properly. That can also cause us financial burden as well. I eventually discovered that there are Epilepsy Specialists out there who treat nothing but epilepsy. They are called Epileptologists and are usually found at Comprehensive Epilepsy Centers at major medical facilities.
I had a prolonged febrile seizure as an infant during a bout of enchephalitis, and I have had Epilepsy since childhood. Have you had any tests such as an EEG yet? The least any competant neurologist should do when a patient's complaints are such as yours were is to do an EEG especially since more than 3 Million Americans have Epilepsy and since there are approx 189,000 new cases Diagnosed every year! An EEG is not conclusive since you can have false normals many times, but they do assist. Two or more witnessed seizures also gives the diagnosis of Epilepsy. The tingling you describe sounds like it may be more nerve related or even re. to circulation, but seizures have their own personality in a way. how one experiences tham will be different from how another experiences theirs. The first seizures I had when I realized something was wrong were Simple Partials, and I called them funny feelings. I just felt weird for a couple of minutes. It would stop, and I went on my way. They progressed to Complex Partials later as the disease worsened since I was not on meds. Your Medical doc is a good place to start since seizures can be caused by may different and unrelated factors. They can be caused by a metabolic issue, due to gluten sensitivity, or glucose absorption/utilization by the brain, etc, etc. Your PCP can refer you to a more reputable neurologist who has Many epilepsy patients. If he acts the same. get another. Many of us have been through this maze. If you have a major Medical Center near you, you may find a Epileptologist there. This doc will have extra, specific training in Epilepsy past neurology called a Fellowship. There is an Art to diagnosing and treating Epilepsy, so just any ole doc will not give you the best. You have to find him/her. Do you have any increase or change in these events that coincide with your period? I wish you the best in your search, and keep us posted. I had surgery for my Epilepsy 6.5 years ago, Great decision. Phoebe.

HippyChic8123 · 04-25-2005, 01:29 AM

Such a very kind person to take the time and give me all that good information. Sorry it took so long for me to reply to your post. actually since you described the way your seizures were, i thought i would describe mine and why i will be seeking medical attention finally tommorow., (trying to conquor my fear and im scared so im stayin up late lol.) its 1:15 am and my appointment ride is @ 930 and we get there @ 1130. i have to do a little traveling, because i want to stay in the same office as the doctor that told me it might be phsudo (cant spell) seizures. i didnt know until a few months after that my mom told me i had febrile seizures growing up. she said that because i didnt have them a whole lot she didnt see why i would have to worry about them till last year. when i was 7 was the first one i remember, (blocked out most of my childhood till last years) they called it a grand mall because it landed me in the hospital overnight. at first i didnt remember why i was there or how i got there. i just woke up to my parents. and a similar situation happened last year but i remember it moreso now. i ended up feeling "funny" for the first couple hours. slightly dizzy. i thought i would go lay down. next i remember i was huddled into a ball shaking. my friend was trying to get my attention and have me take a shower figureing that would help. i went to take a warm shower and spaced out. i think she helped me get my clothes back on which was the first time i ever needed that kind of help. i kept telling her to "talk to me thats what my aunt did when i was little to keep me from loosing it" because i had no idea what it was besides thinking it was a seizure. i told her thats what it was too and she remembered because she was talking to me telling me she knew all about it because how my eyes would react and i would start shaking with loud and brightly flashing sirens or bright strobe lights. btw i dont remember getting into the car i was later told that her friend helped me in. when i was at the hospital, they had me hooked up to what i think was a ekg? i was in a catheter because the doctor didnt want me to walk when i had to use the rest room, and they were going to give me a medication but at the time i didnt have a doctor (regular doctor), so i dont remember if they did it anyway or not. after that i was told it could have been a grand mall seizure, but i didnt follow up on it because i moved. now ive found in answer to your question, my periods have been very irregular. sometimes i can go 4 months without one, and then be very heavy for certian times within the next month. sometimes having two in one month. ive noticed that i have what i call mild seizures which since my left side shakes more than my right, i have developed tendinitis and a rotator cuff is out in my shoulder. these ones after sitting myself down and laying down i find myself in the same position on the bed, (fetal) and hold my shoulder with my right arm till it stops. i turn the lights off and the tv off first then after a bout a half hour it seems to go away. i will check into everything you mentioned and go over it with my regular doctor. i am hopeing that tommorow/todays visit goes well and i get better treatment. im actually sure ill get better treatment but that fear is still there lol. btw i was curious do you know if its genetic? because none of my family seem to have it on my moms side, im not sure about my dads tho. anyway talk to you later thank you for being very supportive.

ScorpionArt · 09-21-2005, 06:56 PM

Hi I know what you are going threw and have ben threw I'm a 43yr M that is in the same bout. A long with a lot more going on. I have a lot of things going wrong and don't know where to start. All the very intens pain I'm in all the time to getting no help from doctors like you saw. I am trying to get some help but it will take time.