New To Forum

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!

Messages
100
Reaction score
0
Points
0
Hi everyone, I'm new to the forum and to seizure disorders. Everything that I have learned so far has been the "hard way". Three years ago in March of 2005 I got into an airboating accident and had a 20 foot long 3 foot around section of an old tree fall on my head, causing a concussion, compressed cervical spine, 2 herniated discs (Thoracic), dislocated hip, ribs all separated from supporting muscles, and unbeknownst to me at the time...seizures.

After the accident, it took quite a while to get the pain under control, and I took muscle relaxers and pain killers for about 6 months before I could wean myself down to over the counter pain control. The reason I mention this is because I don't remember much about this time period except for the pain, severe muscle spasms, and difficulty breathing because of my rib cage essentially having been ripped from its supporting muscles by the downward force of the blow.

Once I got the pain under control I started noticing a new sensation sometimes as much as 10 or 12 times a day, but also sometimes going several days without it. This sensation felt like a painless electrical shock going up my spine and ending in my head, accompanied by an eerie de'javu feeling. I thought it was just pinched nerves in my spine causing it and elected to ignore it because of a lack of insurance and money to pay for medical aid. This went on for 3 years, until January 29th, 2008 I had a new event.

This new event started with me eating dinner, when everything went black and I had a feeling that something serious was about to happen. Fortunately I had the presence of mind to tell myself to spit the food out of my mouth and was able to, before I lost all thought. The next thing I know, I'm waking up in an ambulance not knowing what went on or how I got there. I was told that I dropped dead after about 2 minutes of stiffening up, turning blue and making choking noises. My husband at first thought I was choking on my dinner and performed the heimlich maneuver, but then he and my son-in-law ended up performing CPR on me until the EMT's arrived and revived me.

At the ER, it wasn't long before they dignosed my episode as a Tonic Clonic Seizure, and had me on Dilantin. After MRI's, CT's with and without contrast, and tons of tests along with a 5 day hospital stay, I was sent home. Two weeks later, an EEG confirmed that I was having seizures. The only sensation that I felt during the test was a twitching of my right pinky finger when they did the strobe test.

Seven months later, I am now on 600 mg of Carbatrol 3 times a day. So far I have not had another TC, but I am still experiencing the original feelings of de'javu, only now they feel stronger. Sometimes I feel very tired after a particularly strong one, sick to my stomache, and sometimes even disoriented. My neurologist doesn't even listen when I try to tell him about these feelings, and acts like they are no big deal. All he is interested in is if I have had another TC or not when I go to see him. What I need to know is if these weird feelings are actually seizures, auras (is there a difference between the two?) or what they are. I have tried to read up on seizure disorders, but the onslaught of information can be confusing, and not knowing for sure where my seizures even start at in my brain makes it a more complicated search. In one of my 2 minute sessions with my neurologist he told me that I have scar tissue from the concussion on the top of my brain, but if he told me which lobe was affected I don't remember. Any help on this would be greatly appreciated.
 
Last edited by a moderator:
Wow, it seems

you've been through a lot.

First, let me step in the door here, and welcome you to our home here. Mr B (Bernard) has made us an AWESOME home....along the lines of a dinner party. Buckeye should be along soon with coffee. RobinN's the Queen of all things nutritional, and neurofeedback........and Speber's the Music Man.

Mmmm. OK, so you're confused about several things. I'll try to work around the post.....sort of backwards....

First, auras ARE seizures. They are actually classified as simple partial seizures. Second, scar tissue on the brain CAN be a cause of seizures although some people (like me) don't ever know the reason why their seizures started in the first place. Third, he probably put you on the meds to start with because you WERE having recorded seizure activity at the time of the EEG in the hospital. That doesn't happen too often.......normally the EEGs in the hospital aren't that long. If you're having activity at the time of the EEG, a doc is more likely to put you on an AED........Deja'vuthe feeling itself is also an aura, which means its a seizure, too............

Hope this helps you out some.......
 
Hi Salright2bareneck -
I too am relatively new to the world of seizures. My daughter has been having them for the past 2 yrs. I dove in to learn all I could. It has helped me find alternatives to medication for her.

We have them far better controlled now then when she was taking pharmaceuticals.
She has made nutritional changes, takes supplements for brain health, and is currently doing neurofeedback.

This is a link to a page with references about NFB and brain injury. I hope you find it interesting.
http://www.eeginfo.com/research/headinjury_main.html

BTW - welcome to CWE. Sorry to hear what you are going through. Life sure has some crazy twists and turns, doesn't it?
 
Thank you for the welcome to your forum. For 7 months I have been looking at different forum's for personal feedback and information about seizures. This one has been the most informative and has the nicest people on it out of every one that I have read.

I also thank you for your quick and informative response. From what I have been reading I had a feeling that the de'javu type feelings that I have been having were actually seizures. The terrible way that I feel afterward also clued me in on that fact. What I don't understand is why my neurologist doesn't act concerned about me having so many of them (now I have 5-10 a week, sometimes more) and virtually rushes me in and out the door within minutes, not giving me time to even explain them to him. His main question when I go in is "Have you had a big seizure since I saw you last?" I'm made to feel, not only by him but family members as well, that these feelings are just me making mountains out of molehills. To me they are a traumatic experience, although not as bad as the TC, they are still scary to experience.
 
Then perhaps

it is time for you to go on the doctor "merry-go-round" as it were and find another one........one that has a different bedside manner. One that's going to listen to you, and one that's NOT going to push you out the door in a matter of minutes..........Remember YOU pay THEIR salaries....THEY WORK FOR YOU.......:woot::twocents:
 
You need to find a doctor who has the vision that control means no seizure activity at all.
There are those that can't find a reason for 30% of the patients though. If you fall into that catagory, and you are so inclined, you must work to find the cause. Conventional medical doctors will only put you on the pharmaceutical rollercoaster. For me that wasn't acceptable. That is what led us to Neurofeedback. It has been a lifesaver for my teenager.
 
Hi salright! Welcome to CWE. I agree with Meetz. You need to find a doctor that will actually take the time to talk to you and explain what is going on and listen to you. Also, I strongly advise taking your spouse to your appointment with you. That way, he can have any questions answered that he might have. My hubby always comes to my doctor's appt. That way he can remind me if I forget something. :) And,you might be surprised....the doc may actually take more time with you if your hubby is there with you.
 
Thank you, skillefer, for the good advice. While my husband does drive me to my appointments (I'm too scared to drive myself), I have never been able to get him to go in with me. I think that he is in denial that I have a serious problem, and prefers the comfortable blinders instead of facing reality. As far as finding another neurologist, I agree that I need to find a new one, but can't afford the extra money that it takes to move to one. I have no insurance, and so far have been turned down for medical assistance, so have been footing the bill on doctor visits and meds on my small salary.

And the doctor said "No Stress"..lol.
 
Hello Salright2baredneck~:hello:

Welcome to CWE Board. I hope you enjoy it as much as me and find everything you need. Take care.
 
Hi salright.... :) Then I definitely would suggest that your hubby go in with you to the doc. Explain to him ahead of the time that the doc rushes you out and you never really get any straight answers from him. That way, your hubby will be in a slightly aggressive frame of mind and will hopefully act as a strong advocate. Now, understand that your hubby not comeing in may be due to denial, or fear. He may be totally scared that if he goes in, the doc will give him horribly tragic info. Something that he doesn't think he can handle. So when you ask your hubby to go in with you to the doc's office. Tell him that you really need him to be a strong advocate for you because the doc just seems to steamroller you. And that you're a bit intimidated, and you were wondering if he could go in with you and make sure that the doc answers your questions so that both of you understand what's going on. If that doesn't work.....Well, you could always try refusing to leave the doctor's office until he answers your questions, or making a big fuss out in the office where other patients are sure to hear.
 
Pretty rough time !!

Salright
That sounds you had a pretty bad time I am so sorry what happened to you! And now you have all these problems I hope you get them worked out and until then welcome!
David Hair
 
Thank you for the good advice skillefer. I will start working on my hubby now so that maybe by my next appointment I will have him talked in to going with me.

And thank you everyone else for the warm welcome. :hello:
 
Welcome

Welcome to CWE. It is a great place to talk with other people with same probem and who understand you. It is a place to get information also. A place to let off steam if need be.
I am on my 10th doctor. I think i finally found the doctor i like. We sit down and talk about my seizures and how many i had since i saw him last. He decide if i may need a test, but we dedicd were test will take place. We talk about medicine and if he thinks my blood levels might indicate to increase meds. We decuse any new meds that may be out there. We look up list of doctors on computer while i am in his office, we decide on which one i may want to see and if i could ( i do not drive either). I keep a diary of what hapens when i come out of seizure and how i feel. in the book is date and time also. I do not have any idea when they coming on, but i do now when i come out of it, i have a feeling i just had a seizre./ I usually sleep close to 5 hours, depending on what type of seizure and how strong it was.
nancy
 
Hello -

I would have to agree with the above posts of finding another doctor. Do you have a journal of your seizures? It is important to keep a journal so you can share it with the doctor. Maybe your husband can help keep a journal for you and he should go in with you so he understands what is going on.
 
My doctor never talked to me about keeping a journal. Like I said, all he cares about is whether I have had a TC or not and is very dismissive about the auras when I try to tell him about them. I think that my next visit with him I will be armed with a journal, so that he can see for himself any issues that I have been having.

Speaking of issues, today is the third time that I have had a problem with feeling "out of sorts" accompanied by the feeling that my tongue is twice the size as normal. Could this be a side effect of my meds? or results from a seizure that I am not aware of? To my knowledge I have only had a small aura earlier today, and did not immediately feel any after-effects from it.
 
My doctor never talked to me about keeping a journal. Like I said, all he cares about is whether I have had a TC or not and is very dismissive about the auras when I try to tell him about them. I think that my next visit with him I will be armed with a journal, so that he can see for himself any issues that I have been having.

Speaking of issues, today is the third time that I have had a problem with feeling "out of sorts" accompanied by the feeling that my tongue is twice the size as normal. Could this be a side effect of my meds? or results from a seizure that I am not aware of? To my knowledge I have only had a small aura earlier today, and did not immediately feel any after-effects from it.


First, your doctor REALLY needs a good whack upside the head. Sorry, I just NEEDED to say that. :roflmao::pfft:

Second, PLEASE DO take the journal in with you. It should help. If it doesn't then you do need to find a way, somehow, to find a different doctor. Though, I do remember you talking about paying for this out of your pocket, so that would be difficult at best.....

Third....is it just a FEELING, or is your tongue TRULY swollen? Just a feeling would probably be a s/e of the meds. But if your tongue is TRULY SWOLLEN, well then, you know you've had a seizure. Usually, if I see little scalloped edges along the side of my tongue, I know I've bitten it, and good, and probably had a seizure......though I USUALLY bite THROUGH mine....
 
Ouch!

Thinking about biting though your tongue makes me want to cry.:-(
No this is more like a sensation, the mirror says that the tongue looks normal even though it feels like it should be huge. Must be the meds.:ponder:
 
Hmmmm

Well, the MIRROR says one thing, but how does it PHYSICALLY FEEL to you? If you close your mouth, you obviously have the sensation that it's swollen. But if you open your mouth, and use your hand (OK, it's gross, but what can I say?) use your fingers to feel around to see if there are any places that are indented/swollen/etc. I think you know what I mean. Sometimes physically poking around is the only answer.......

Oh, and yes, the pain from biting THROUGH the tongue IS EXCRUCIATING. And it takes forever, it SEEMS, to heal........especially when I do both sides....

Make sure you talk to the doctor about the sensation. I don't know that there is anything that he/she can do about it, though. You may have to learn to just put up with it, sadly.

Good luck!
 
Back
Top Bottom