Hi everyone, Im new here

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

they would have probably takingme to jail, as it is a narcotic I was needing.
 
Hi everyone.. well im getting ready now for my neurologist appointment, and Im hoping and praying he really listens to me. Im a bit nervous but all I can do is just go in there and tell him whats going on with me. After alot of reading info on here Im thinking maybe whats happening to me are "aura's" or simple partial seizures.. anyhow i'll get back to you all, but I intend to ask him about having the 24 hr ambulatory eeg.. cause the regular eeg is only as good as the time period in which its run..something has to happen.. i can't cope with the uncertainty of it all. Wish me luck everyone and thank you for the help youve given me already :)
 
Good Luck TL

Hope it's a beneficial visit.

Remember if you have any questions to mark them down, I know I always forget my questions until I leave if I don't .
 
big huggz and wishing you the best. Just try and build a good relationship. I do not have one with my doctor, and just feel like a number. You do not want this. I say if you call and a answer machine answers try a new doctor. I am going in the hospital for monitoring and will be seeking a new doctor while I am in the hospital as well, and am going to tell him how I have been treated by my neurologist. I am thinking my neuro has two many big diplomas on his wall right behind his mighty chair, and needs to set his priorities to his patients. It is overwhelming not knowing, I know exactly what you are going though and it is so frustrating. Were here to read, listen so let it out. We need some sort of SOL shouting out loud or something we can scream together symbol!

You can always trust in GOD, not man! These words I give to you from experience!
 
Hi everyone. Well I am feeling very frustrated at the moment. I went into the neurologist office and just laid it out everything thats happenning to me and he just was blank. He TOTALLY dismissed me. I asked him, "doesnt this sound like a kind of seizure maybe'? and he flatly looked at me and said no i dont think so.. he couldnt get me out of his office fast enough. I asked about the 24hr eeg and he said our province doesnt provide those at all.. oh well. He flatly refused to look into my symptoms anymore at all.. he says, my mri was fine and my 1 eeg was fine and my 1 sleep eeg was good enough.. He made me feel so low.. like an idiot i just feel like crying right now. I just dont know where to go from here. I feel awful. I've been praying that the answer would come and it hasnt and i feel so very helpless...
 
Where you go is toward natural alternatives. You pick up the book:
Epilepsy: A New Approach, and study it, and discuss your questions here.
Think seriously about getting on a nutritional plan that supports brain health and eliminate that which is damaging. Use your doctor for emergencies, and start helping yourself. I know you can and you won't feel helpless any more.
 
I say cry out loud, and let it out. holding it in is not good. Try your best to believe your doctor is just having a bad or and is obviously burnt out with his job. I am going to get the book Robin has suggested myself, I recommend anything she does. She is well learned of our illness, and sees it from another perspective and yet is so kind and understanding. We need more of you Robin.

I also suggest going to another neurologist. Might also see a phyciatrist as well, there are some real rough times and most other people don't want to hear about your problems. When there favourite show is on... Don't ask don't tell sort of thing. I have now begun to relate to our dogs in the house, as long as I am fed, everyone is free to come and go as they please, and my needs are put on hold. My needs, yeah I have them and they are urgent and different because of the epilepsy and severe anxiety and major depression. It is not like we can tell ourselves, don't have a fit until a certain tv show is over, after the softball game. Our friends and family forget we go through this as well, and know it is happening, don't like it any more than they do, but wow what a hug would do, but it is not given, just a snap because there day was rough. Or it all about me..


wooooh, sorrry I sort of let out there, feels good though! I am up late so anyone needing to talk let me know. Again, i go into the hospital for the is he faking or is it pseudo thingy.... on the 19th and have a meeting scheduled by Social Security to test my mental health. I was just about to dye my hair some weird color to have some fun at the hospital but now they have taken this from me as well.

ON a good note I sold my car the other day so I can afford this testing! lol
 
I"ve had EEG's & MRIs that have all come out "fine". I still have epilepsy. It wasn't until I was 39 did my neuro see a lesion on the hypothalimus of the brain.

Also just because an MRI comes out "normal" just means that the E is idiopathic. I forget the number but a relatively high percentage of E is idiopathic so I don't know why your neuro would assume that.

I'd say look around for another one. I posted this on another thread but maybe it can help you.
http://www.ratemds.com/social/
 
thank you everyone.. i just feel like ive been kicked down... and i will see if I can get a different neurologist..im not sure if I can or not. I find it curious that he dismissed everything that i said, yet sent me home with a diary and asked me to keep track of whats happening..
 
Very true

but keeping a diary of what's happening is a good thing. I do it.
 
you can't kick an epileptic why he's down... aint right man!
I really need to keep my diary, I have one for writing, might as well mix the two, could be quite interesting
 
Perhaps that neurologist is burnt out himself. Maybe follow up that appointment with a letter similar to what was posted here would help him understand your situation. Putting stuff in writing can always catch somebody's attention. If he re-reads it a few times, it may help him. I'd include seizure activity, diet, skipped medications, stress levels on a scale from 1 to 10, switching from brand to generic (or generic to another generic), that time of the month, vitamins, other medications that could interact, and any other symptoms you experience. Keep in mind that that letter could be sent to another neurologist if you transfer records.

Personally, I can totally relate to the dog myself. She has 'owned' me for the past 7 years. Dogs can be extremely alert to seizures and abnormal activity. They are very therapeutic, supportive and affectionate for the small price of a bowl of food, a few cookies and a play session.

One thing caught my attention. I'd be concerned about an irregular heart beat personally. Is it possible for you to get a portable EKG machine that hangs on a shoulder halter? That may record abnormal heart beating related to a seizure. A regular physician can request one of those. Just a thought.

BTW, I also have that book: Epilepsy: A New Approach. I've learned SO much from that book. I've been reading it and re-reading it since it is deep material, but very very good stuff. Knowledge is power!
 
Dear Tracy ,
As a medical professional i can tell you:
1) having a normal EEG does not rule out epilepsy
2) neither does a normal CT scan or an MRI

Epilepsy for the most part is diagnosed on a clinical basis and the symptoms you descrie sound a bit like temporal lobe epilepsy or simple partials or catamenial epilepsy. can't narrow it down further , sorry. The list of symptoms is endless and covers a wide spectrum ,so epilepsy is often missed as a disgnosis , especially since EEgs aren't 100% specific nor 100% sensitive (they can neither tell you for a fact if you do or dont have epilepsy).

Try visiting a more specialised centre . do you have a family history of similar episodes? does the "electrical feeling" happen more often in the shower or on sudden exposure to heat or cold? do you have vision problems or frequently need to change your glasses?
If so , you may want to reconsider other possible diagnoses. Note that migraines also present with weird sensations like the ones you describe. Try to maintain a diary of anything you eat and see if changes in your diet can help reduce the frequency of the attacks. Most migraine attacks are food induced or aggravated by alcohol and caffeine. Try to stay away from flashing lights.
In the meanwhile , i seriously feel you should consider a sencond (third?) opinion.
P.S. my brother lives in canada and i know about your lousy "waiting list" system. maybe you should try medical tourism
Hope i've been of help
re: the heartbeat issue , meybe you should see a cardiologist
 
you would not by chance be familiar with Malhotra's in India? I worked with Jawahar and I believe he is there now on vacation.

That is a great post, I am going to print and show it to my family... they believe since nothing showed up on the test, I cant have epilepsy, although there research stems only to the next cubicle at work. So thanks for posting something I can show them.
 
Thank you for all the responses.. Im not sure where the heartbeat thing comes in.. my heart seems ok now, although i do get some type of nerve pain through the chest and back... and i do get to see another neuro in may!! he's planning on a peripheral nerve conduction study... but that still doesn't help with my possible epilepsy.. I'll just make sure i keep that diary until then. Cardiac problems have been ruled out i believe.. Multiple ECG, Echocardiogram normal, stress ecg normal, Holter monitor twice.. normal. I have a few infrequent pvc's... but everybody does and its normal. Head and chest CT normal, brain and full spine MRI normal, aside from a slight t8 disc protrusion found by accident and not the source of pain. The MRI was done with MS protocol, and stated on the T2 Flair some small areas of white foci are found, however not appearing as ms plaques.. otherwise unremarkable.. the doctor says these areas are normal?? i dont know if they are..as for my blood ive been tested for everything under the sun I think. I said to the neuro, "how can you be sure its not epilepsy? and he said he can tell from the one eeg and one sleep eeg.. I said well if it doesnt happen when the eeg is going then that doesnt really tell anything, right.. and he said no.. they can tell.. I think that was a load of Bu****it.. sorry but i think he flatly lied to me and he knows it..I described all my symptoms they way i have here, and asked him if it sounded a little like simple partials and he quickly and rudely says "nope not at all".. im confused.. maybe he's just ols and burnt maybe..
 
I believe I was having simple partials during mine, the brilliant tech, just kept telling me to stop clenching my jaw... Nothing showed up on the eeg, but how do we even know it is taken and read. Do we get copies of this?
 
wow last night i was lying in bed having one of these "simple partials", i had the smell and the flickering...and the lightning sensation.. when all of a sudden my foot muscles started to twitch...then it started in my calf.. and then it moved into my thigh... just felt wierd, this rythmic contracting of the muscles.. then it was fine..Does this happen to anyone else??
 
I get a lot of twitching but I don't feel it. My left eyebrow usually goes up but I only know this because I ocassionally see it in the mirror. When I was at the massage therapist & had a seizure she told me my erector spinae muscles (that attach to the vertebrae) flexed together in rhythm.
 
thats interesting. .. i just thought it seemed so strange because it seems like the twitching was "spreading"..
 
Sorry to hear your doc is being a nimrod. And, yes, that's exactly what he was being. I've only had one EEG come back abnormal in my 30+ years of having epilepsy. You NEED to go get another doctor. And definitely keep a journal...especially jotting down those odd smells , sights, and twitches your getting at night. Do everything that you can as far as eating healthy, reducing the stress in your life, and getting 7 hours of sleep each night.
 
You must log in or register to reply here.
Back
Top Bottom