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Old 09-20-2008, 04:46 AM #1
mamaof6 mamaof6 is offline
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I have held my head high through out everything the best i could, but its really starting to get to me. I had my status event in July, which got my insurance straightened up, and got me into a neuro finally, thought things were looking up. But, alas, the szs increased, I know i am having them in my sleep bc i am waking with sore jaws, groggy, and feeling like i just had a seizure. I am having auras through the day two to three times, and convulsive seizures proceeded by an aura about once a week. Monday, they increased, and I had a tooth that had absessed, my family called the ER and the nurse said it might have something to do with it, to come in and they could try and drain it. (MIND YOU the neuro will never call me back, and when he does and discusses the szs with me he increases my meds.. i have went from 200 mg of dilantin on 7-1-08 to 400 mg of dilantin and 200 mg of topomax which i know is not alot compared to some ppl but it leaves me loopy) I end up at an ER that is not my hospital bc mine is full, and the er dr is tryingto drain this abcess, and as he has the needle in my jaw, i begin an aura, i get his attention just in time, and he removes the needle and i begin to convulse, he puts up the railings and i grab a hold of them and begin to cry out for my friend who is out of the room, and he steps back and crosses his arms and very coldly asks how long will this last. OMG!!! well...it stops, only to be immediately followed by another, and another and another totally seven before they get an IV and shoot me full of ativan. I could feel my body going into status and was just praying that they got it stopped in time.....I got transferred to my treating hospital...completely out of it, bc while waiting to be transported, i began to break throgh the ativan and the lovley dr came in and gave me more. The neuro on call said my seizure journal was worthless bc it did not describe the szs in detail, he was rude and kept confusing me. had me in tears, told me not to yell at him...which i wasnt....i just was frustrated...NOW i wiSH I HAD! I called my neuro who worked in the same clinic with him the next day and he was a complete jerk with me again, saying i should have been going to the er with every sz even though the er was over an hour away, and that they were going toschedule an impatient eeg to find out what these EPISODEs are .....Now they are not even calling them seizures....and where they are coming from....MIND YOU i have had brain surgery, for an AVM, I have a meningioma, and i have mesial temporal scelrosis, NUMEROUS EMTS friends family members and drs have witnessed my seizures...and they are calling them episodes....are they sayin it is all in my head now??? whats going on???
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Old 09-20-2008, 01:52 PM #2
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Hi mamaof6.
I'm sorry to hear about the hard times you are going through. My first advice to you is to get rid of the neuro you are seeing and start seeing an Epileptologist at an Epilepsy Center. I've had sz. for 36 yrs. and had 2 brain surgeries to reduce my sz. and just like you my sz. are starting to get worse.
You mentioned that you have your sz. in your sleep this could be a myoclonic sz. This type of sz. happens when a person first goes to bed or when they get up in the morning. It's been happening to me the past yr. and I will also have convuslions, fall out of a chair, etc. I found that when I was on tompamax it caused me to have many more sz. than before I was put on it. Whatever you do don't let your Dr. put you on neurontin it has been proven that this drug will cause status sz. along with other forms of sz. for people who have never had a single sz. in there life. The company making the drug has over $200 million in lawsuits.
I've also noticed that I have many more sz. in the fall and winter compared to the spring and summer these are known as "seasonal sz." because the change in the weather is causing more sz. for me.
If you're at the age where you could be going through your change that can make your sz. either better or worse. Also to much stress, lack of sleep, and if you've been sick with a virus or stomach bug it can mess up a person system sometimes leading to more sz. My advice to you is to start taking vitamin B12 1000 mcg. a day and cut back on any starch foods and carbs you may be eating. Start eating foods high in fat and low in protein this is known as the ketogenic diet for people with epilepsy and it has been a big help to me reducing my sz.
As for your neuro I know if I were in your place I would have him reported to the Medical Conduct Board. There's no need for him to treat you that way. I wish you the best of luck and May God Bless You!

Sue
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Old 09-20-2008, 05:38 PM #3
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mamaof6,
I'm so sorry about everything happening to you. Porkette said everything I would have said too.
As I read about that "neuro on call" I couldn't believe it. As a matter of fact, when I was in the hosp. getting a video EEG I had a sz & the nurse said that I was mean to her. (I can believe I was cuz it happened as she was helping me get out of bed to the restroom and I felt like I needed no help.) I think she said that that is often common. Maybe that neuro out to go back to school.
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Old 09-20-2008, 10:06 PM #4
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Quote:
Originally Posted by lor View Post
mamaof6,
I'm so sorry about everything happening to you. Porkette said everything I would have said too.
As I read about that "neuro on call" I couldn't believe it. As a matter of fact, when I was in the hosp. getting a video EEG I had a sz & the nurse said that I was mean to her. (I can believe I was cuz it happened as she was helping me get out of bed to the restroom and I felt like I needed no help.) I think she said that that is often common. Maybe that neuro out to go back to school.
apparently the parts i dont remember...from that evening he was shaking me by both shoulders trying rouse me.....and practically yelling my name in my face...at one point he poked my shoulder i have been told.... Typically I know I am very unpleasant after seizures...as i am very independent and also dont think i need help....i absolutely hate it when they put a catheter in me and that makes me even more grouchy....I always try to rip off alll monitors cords cables ivs and lines too.....but that nite, was a complete oppisite until he roused me and started questioning me. i was just so blitz i was laying there quite calm resting and very very out of it...
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Old 09-20-2008, 10:09 PM #5
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Quote:
Originally Posted by lor View Post
mamaof6,
I'm so sorry about everything happening to you. Porkette said everything I would have said too.
As I read about that "neuro on call" I couldn't believe it. As a matter of fact, when I was in the hosp. getting a video EEG I had a sz & the nurse said that I was mean to her. (I can believe I was cuz it happened as she was helping me get out of bed to the restroom and I felt like I needed no help.) I think she said that that is often common. Maybe that neuro out to go back to school.
forgot to add....during a video monitored eeg....mine will be inpatient...will they typically try to induce seizures? and to what extremes will they go to make that happen? the seizures i am having now, that i do not lose consciousness, make me cry out in pain and fear, i feel like im in agony and dying..the grand mals affect my abilities for long after....both are very unpleasant and unappealing situations for me.
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Old 09-21-2008, 11:34 AM #6
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Default same thing

i had a similar situation after my avm was removed last october. it was from the drugs. i was on keppra and the dosage had to keep getting raised as well and then i'd have more seizures. i was exhausted constantly and had to keep myself very rested or i'd keep having them. i felt the warning signs for this was muscle twitches in my face.
i recently came off the keppra and the seizures have stopped.
i hope that helps.
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Old 09-22-2008, 02:28 AM #7
mamaof6 mamaof6 is offline
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Quote:
Originally Posted by sternrep View Post
i had a similar situation after my avm was removed last october. it was from the drugs. i was on keppra and the dosage had to keep getting raised as well and then i'd have more seizures. i was exhausted constantly and had to keep myself very rested or i'd keep having them. i felt the warning signs for this was muscle twitches in my face.
i recently came off the keppra and the seizures have stopped.
i hope that helps.
i have a friend that is taking me to the neuro clinic tommorrow...tired of calling and being put off....I will discuss the medication issues with them and wont leave until i get some answers. I know i cant be off the meds entirely ...have done that once, and did not have any grand mals for a year....then bam....eight that landed me in the hospital for a few days....I wonder now if i should have even had the surgery for the avm....thanks everyone who has responded....its awful feeling like a child again....
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Old 09-23-2008, 01:49 AM #8
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mama, it is great you have a friend who is taking you in. YOu may get them to check on your level of Dilantin. At one time I was on Dilantin and my blood level would get high ND I would feel kinda loppy, as you said, about 30 minutes after taking the medicine. Please keep us informed on your condition.

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Old 09-28-2008, 03:53 PM #9
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All Anti-Epileptic Drugs (AEDS) carry side effects and there
are really no "safe AEDS" out there; however, some
AEDS require blood level monitoring, and Dilantin (generic
name: Phenytoin) is one of them.

However, I do wish to post this that I have posted in
another forum where I'm a moderator at:

Quote:

ALL anti-epileptic drugs OUT THERE COMES WITH SIDE EFFECTS!


* Some individuals may not experience any side effects

* Some individuals may experience a minimal side effects at first but will go away after a period of time (which they call it a 'honeymoon phase') during the titration of the medication.

* Some individuals may experience a mild side effects that are tolerable but can stay with the medication(s). (It's either take the medication(s) or risk the seizure(s) which in turn 'may' endanger you and put you at a risk for brain damage)

* Some individuals may not experience any side effects at all for a period of time, then develop a tolerance (or resistance) - then side effects begins to manifest; and if ever this becomes the case, then one must consult with their Epileptologist or Neurologist; for it may be that the dosage may need to be decreased or it may be that seizures are 'changing' and you need to be re-evaluated again. It may also mean it might be a time to change your anti-epileptic drug or anti-epileptic drugs or adjust them accordingly or even having to have a full Neurological Work-Up

* Some individuals develop side effects not long after beginning the medication and it must be discontinued and monitored by the Epileptologist or Neurologist. DO NOT EVER STOP THE MEDICATION YOURSELF!

* IMPORTANT NOTICE: Some medications needs frequent or sporadic blood level work up. There are some Epileptologists and Neurologists that do not follow through on this, so it pays to do your homework on the drugs you are taking and to ask questions about the drug(s) you are on

* EMERGENCY NOTIFICATION: If at any time you experience: shortness of breath, chest pains, numbness that radiates especially to your left side of your body, drooping of your face, sudden unexplained rashes that just came up, or experience anything that is unusual to you, thoughts of suicide - Call your Epileptologist or Neurologist or 911 or Go to the Hospital Immediately. Do not consult with NeuroTalk - We are not Medical Doctors here! The Doctors / Hospital will take care of you and evaluate you and take care of you

* This is NOT an exhaustive list - only a BASIC LIST
It would be a tremendous idea to keep a log as when
you are experiencing this "effects". Are these effects
only happening after you've taken the medication(s)
and then goes away and then you're fine afterwards?

Or is it continually persisting?

Such needs to be noted and bought forth to your
Neurologist / Epileptologist. It is possible you may
have a side effect to one of the medication that you
are on; not necessarily it's the Dilantin / Phenytoin.
But you should have your blood levels checked if
you are on this medication however.

NOTE: I AM NOT A MEDICAL DOCTOR, this posting
is only a recommendation - all medical advisories should
be consulted with your Neurologist or Epileptologist!

IF YOU ARE UNHAPPY OR UNSATISFIED WITH THE
TREATMENT / CARE THAT YOU ARE RECEIVING WITH
THE PRESENT NEUROLOGIST / EPILEPTOLOGIST; then
it is strongly recommended that you speak with your
Primary Doctor (after all he/she is your "General Over-
seer" of your medical well being) about moving on to
another Neurologist or Epileptologist.

If you have any difficulties in finding one - there are
places you can go or find one:



Here's a MAP for the nearest Epilepsy Comprehensive
Center (Level 3/4) - click on the link below:


LEVEL 3/4 EPILEPSY COMPREHENSIVE CENTERS - (USA ONLY)

And if that is not suitable, you can also Find a Doctor:


FIND A DOCTOR (Neurologist/Epileptologist) - AESNET/Epilepsy Foundation

Good Luck and Hope this helps!
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Last edited by southie; 09-28-2008 at 03:54 PM. Reason: edited to change other forum name to add NeuroTalk
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Old 10-02-2008, 06:55 PM #10
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I agree with the others re getting to a Coprehensive Epilepsy Center. It took me 35 years of general neuros who did nothing but play with the only thing they have, the meds. AThe meds do affect quality of life especially if they do not work like mine didn't. Finally I learned about Comprehensive Epilepsy Centers and went to one in the city where I lived. I wass referred to Empory by my local EFA. They are best buddies with Emory and refer all of the desperate people who call looking for help to Emory. Lots of politics. I had my VEEG as an inpatient at Emory, and during my inpatient VEEG, the staff let me go in to and stay in status for "a Day" according to my epileptologist who was out of town at the time. Great! I was so disappointed to know that the EFA referred me to a place that did me harm and continues to do this to others. The reason I tell you this is because if you go to that site mentioned above, you will find every doc in Emory's epilepsy program there but not the ones who did such a fantastic job for me with my surgery I had 10 years ago now. The facat that the docs are mentioned there does not at all mean they are the quality you seek. Many are not even epileptologists. I used to live in that area where I looked and saw the names. Many are not epileptologists. I encourGE you to ask those who have been treated at the plaCe you are interested in. I did that, and it was a positive experience for me. I got a second opinion after the Emory botch ( great that you will have a friend with you), found one who had has surgery at the same place, and she became my mentor and walked me through the surgery.I have not losgt consciousness since and that was 10 years ao. they did a great thorough job one time. I had my successful surgery at medical College of Georgia in Augusta, Ga, and the neurosurgeon was Dr Joseph Smith. It was one of the the best decisions I have ever made. My life is so much different and better now, and I am in graduate school. My seizures were increasing as others have said. Ask lots of questions and keep us posted. Tsttoo
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