1. < Epilepsy & Seizures

Former dr. said petit mal seizures, new doc thinks maybe not seizures

Posted by Sunshine05 @palmetto, Jul 8, 2016

Hi I've had seizures since age 8 and was diagnosed Petit Mal seizure. I was also on lots of meds prior. I recently started to see a new Neurologist in town in Jacksonville, FL and he says it may not be seizures. Right now, it's happening only in the middle of the night.My EEG in clinic and MRI were both normal. He wants to do EEG with Video for 72 hrs. My insurance have a high deductible. Does anybody know of any grants that will help pay for it? My insurance also doesn't cover Mayo. Neurologist thinks It's anxiety, depression, etc.. Also, I have told him that I think it increases with stress. There will also be times that I don't have seizures for example: like a year and a half and then it would come back. It's off and on. Thank you in advance!

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Kay | @irvkay312 | Aug 12, 2016

Either there is a great similarity to what I went through with my parents and family thinking one thing, me another; but failing to consult an expert out right. It wasn't until I saw changes in my system and medicines, as well as rejection by many peers "that I took it upon myself to study epilepsy and neurological iems at Stanfords Doctors library (6 miles from my home) that What medicines? I learned many of the truths and falshoods that had been told to doctors. Words are one thing, but when your seeking to control seizures you have to validate What kind? What trigge from professional technicians,rs them? Is the blood at fault? Doing an EEG at Home, did you know what it was and what you were interpreting? Once as a teen, I met the knowledge I spoke of; I turned the whole situation around. Since my words in conjuction with my doctors conversation posed a different outline and tests that my doctor interpreted put my diagnosis in a whole different ball park. One of systematic changes, medicine changes, understanding and staying away from triggers and even seeing a pchiatrist to evaluate if what happened at night was because of something that day, etc

Get a baseline Complete Blood Count to see or learn of the patients blood deficiencies or needs. Get a professional EEG under professional circumstances and even an MRI if necessary. Something else that is changeable is "that epilepsy can be incurable--or intractable." Those are things you need a doctor to interpret and explain to you.

irvkay312

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lucky12 | @lucky12 | Aug 12, 2016
In reply to @sall "We went to our follow up with our epilepsy Dr. and she is trying to wean..." + (show)
@sall

We went to our follow up with our epilepsy Dr. and she is trying to wean him off of levetracitam/ keppra and replace it with vimpat. So far he has experienced the common side effects. He has done the 72 hour EEG/VIDEO at home, EEGS and sleep deprivation EEG. She mention sending him to a university for a study to see if they could trigger a seizure or something to identify what is going on. Anybody have any ideals. He is taking vimpat 100 mg am/pm and 250 mg of levitracitam pm.

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I've been on 1 med or another for 40 years: Dilantin then tegretol then lamotrigine and now a combination lamotrigine (250mg/2x day) and Keppra (500mg/2x a day). The seizures were always mild. I've been seizure free, as far as I can tell, for at least 5 years, ever since I started the current regimen. I've been on medication so long I don't know what I'd be like without it, but if I forget to take it in the morning, I move much faster through the day and get a lot more done. I would like to see if I can be weaned. My neurologist is suggesting 5 day inpatient continuous eeg (don't know if video) test during which the medication will be reduced or stopped. I would like to know if I can function at a higher level. It takes me longer to get things done. I'm also forgetful, maybe a function of age (59) but maybe not. Is this a good reason to undergo the inpatient test? Is it possible that I am no longer seizure prone, even without the medication? Work takes all my time. Maybe I could live a fuller life. I welcome input.

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sall | @sall | Aug 13, 2016
In reply to @irvkay312 "From a history of life with epilepsy and having been through nearly all items you note;..." + (show)
@irvkay312

From a history of life with epilepsy and having been through nearly all items you note; my first question would be why is she trying to take him off the Keppra? Adverse reaction, age, growth, diet, not adequete control of seizures? etc. From that point I would seek to understand type of epilepsy classed as, along with age and normal or abnormal growth factors. I note this only because sometimes ones body and growth will exceed others and in so doing have an ability to change many systematic factors. Then of course would be a regular and updated Comp;ete Blood Panel to check for any overages or shortages in the persons blood. An updated Electroencephliagram could evaluate the efficiciency of brain operation to stimulus; noise, lights, do this, that, etc. so as to narrow the gap. Are they getting adequate rest during this growth stage, or using too much energy, so as to be shortened? A video monitoring test is expensive, but may be worth it. They'll attacch electrodes to the skull with about a 50 foot cord. Anything done, whether playing games, eating, taking medicines, being thirsty or even using the bathroom--will note on paper graphs the operation of the respective part of the brain responsible for doing that. From the baseline--blood CBC, EEG, and stimulus before, during or after a seizure help the doctor evaluate the medicince to use or prescribe.

If the person has done well on Keppra, some minor dosage adjustments may be needed. If you are still in doubt, or don't get the doctor to properly explain the reasons for this to you--seek a second opinion and see if there is applicable reasoning for their differences of opinion. I've dealt with epilepsy through 4 different stages and am now 77+ years old. Some may even need to be on a trial and error basis due to the complexity of the brain or triggers that can initiate a seizure. Good Luck.

irvkay312

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I am considering second opinion. Waiting to see what else is suggested for now because he has a few more weeks of work still. The summer is his busy time. He is a HVAC Tech and they are busy. Anyway he is in blood clots study from 2008 trip to Mayo and have considered asking to be sent the for study on epilepsy.

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tatiana01 | @tatiana01 | Sep 14, 2016

Someone who has been operated from seizures? Any medication is working

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 15, 2016
In reply to @tatiana01 "Someone who has been operated from seizures? Any medication is working" + (show)
@tatiana01

Someone who has been operated from seizures? Any medication is working

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Welcome @tatiana01. I moved your message to this discussion so you can meet other members who are talking about epilepsy and seizures. I hope that @carol94 @jeans @sall @lucky12 or other members may be able to answer your questions about medications no longer working and what other treatment options that have had or considered.

In the meantime, here is some information from Mayo Clinic on Vagus nerve stimulation http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/home/ovc-20167755

What medications have you already had? And what treatment options is your doctor suggesting?

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sall | @sall | Sep 15, 2016
In reply to @tatiana01 "Someone who has been operated from seizures? Any medication is working" + (show)
@tatiana01

Someone who has been operated from seizures? Any medication is working

Jump to this post

He was on levetracitram 500mg time release. The doctor wanted him to take 1000mg but he could not handle it, the mood extremes etc. The last visit she started him on vimpat and was weening him off the levetracitram. We finally just decided that both meds still was causing difficulty. So far with vimpat 100mg morning and night has been working okay so far.

REPLY
Kay | @irvkay312 | Sep 16, 2016
In reply to @sall "We went to our follow up with our epilepsy Dr. and she is trying to wean..." + (show)
@sall

We went to our follow up with our epilepsy Dr. and she is trying to wean him off of levetracitam/ keppra and replace it with vimpat. So far he has experienced the common side effects. He has done the 72 hour EEG/VIDEO at home, EEGS and sleep deprivation EEG. She mention sending him to a university for a study to see if they could trigger a seizure or something to identify what is going on. Anybody have any ideals. He is taking vimpat 100 mg am/pm and 250 mg of levitracitam pm.

Jump to this post

As I wrote in a previou s post on seizures which I've had for over 77 1/2 years now as well as being in hospice for pancreatic cancer "to me it doesn't seem like someone did their homework on adverse affects of this medicince, or reporting its affects to the doctor." I'm on it now for quite a few months and one of the manufacturers first notes were "may cause mood swings, problems sleeping and other factors of a similar nature--if such happen contact your doctor immediately."

My personal view is that this medicine is not conducine for this persons treatment. They may have to re-evaluate other medicines even on a trial and error basis to attain the proper one for control.

Additionally, you could seek a second opinion, by another doctor to see if someting was overlooked in prescribing this medicine.

Good Luck.

irvkay312 Mentor

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matermiracle | @matermiracle | Oct 1, 2016

i am going through the same thing my gp has diagnosed Peti-Mal Sezuires and awaiting to see a neurologist in November.

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