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Sunshine05
@palmetto

Posts: 1
Joined: Jul 08, 2016

Epilepsy/seizure related

Posted by @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!

REPLY

Hello Sunshine05@palmetto I’m so sorry to hear of your seizure disorder and the confusion regarding the diagnosis. That must be very frustrating. While I have a neurological problem, I have not had seizures. May I ask, have you been prescribed any medications for seizures. If you have taken seizure meds, were they helpful in controlling the seizures? Since the seizures are occurring in the middle of the night the 72 hour test sounds like a good idea, however, I understand how high deductibles can get in the way. Have you talked with the doctor to see how they might be able to help you with cost? I wish you well and keep in touch!

My sister has an AVM (Arterial Vascular Malformation) and this can cause seizures as well. If you have any issues with getting a proper diagnosis I would highly recommend this autoimmune center. https://www.midmichigan.org/about/news/newsroom-2016/autoimmune-center-offers-new-hope/
Please be well and good luck!

I’ve had seizures since birth dprse oodto connect you to video monitoring. There they’ll likely have attachment to skull (like with EEG) and will follow you in whatever you do. With that information an epileptologist (specialist in epilepsy, etc.) can often analyze items pursued, whether doing a puzzle, getting out of bed, going to bathroom, eating, taking medicines, etc. That indicates to doctor the manner of brain operation while doing these things–sooooiz zo. sopertionafter taking medicine. After my doctor did this to me years ago, he was able to prescribe medicines to keep my condition as stable as its ever been. For information contact Epilepsy Foundation of your State; your local Congressional Representative or Senator and seek information about financial help if needed to pursue this. Also, your State’s Disability Council can also be contacted for such information.

irvkay312

I am looking for more information about right temporal lobe epilepsy. In December of 2013 my husband had a seizure but was not diagnosed with epilepsy until March after they done a sleep deprivation eeg. There is no family history of seizures and no prior injuries, but in Oct 2007 he was electrocuted with no injury visiable. In 12/30/07 he had blood clots causing bilateral PE. Again no family history or injury. Although there is no medical/scientific proof that the electrocution could cause the things. I believe it is possible. Our issue now is trying to determine if he is having nocturnal seizure. He wakes up occasionally in the morning he doesn’t feel well, fatigued, disoriented, etc. this seems to be happening more frequently. Within the past few days he has told me the night before he had tingling in his head on right side, wasn’t feelin well before bed. He got up the next morning was disoriented, fatigued, nauseous,, strange smells/ taste and bad headache. Yesterday he at supply house to get parts for his job got out of his vehicle and was shaking unable to control it but not as in typical gran mal or petite mal. It lasted a minute. He is taking levitracitram/ keppra but he only will take half the recommended dose due to side effects, doctor hesitant to change due to warfarin. Even though I have researched online I feel like I need more information to help him. Also seems to be getting noise sensitive, tells me I am talking loud.

Well, in reality I think anything can be possible under certain cicumstances. From the information you posted, if you/he are serious about trying to control this conditions cause; there are a few things that should be undertaken, along working with a reputable epileptologist or neurologist. From that point, not one, but both should go to explain matters to doctor. “Seizure control would be the reason.” A doctor would likely begin with medicines taken and dosage; then he/she would take a CBC Complete Blood Test to analyze the blood and its componants, as well as the levels of the medicine that is prescribed vs what the doctors outline of treatment normally calls for by the medicine preascribed. That’s a start. Then a possible Electroencephliagram (test on brain operation by electrical reactions noted in brain to lights on and off. Open and close eyes. Sleep, rest, etc. That will indicate area’s of the brains operation or lack of operation on such commands. That specifys to the doctor possible problem area’s. Put your appointment, exam, blood test and EEG together and a doctor can often have something to work with. If the EEG showed different problems of operation, an MRI of brain might be helpful.

Realize also, that with seizures, there is no cut and dried answer for each person, since our bodies and their operation differ during our life and age. The other element the doctor will ask “what triggers (initiates seizure) ? Noise, bright lights, fear, depression, worry of not understanding changes seizures are causing his mind to think of, etc. Fortunately, there are also guidelines to take and deal with this. In my 77+ years and stages faced, “I made it a point to take my medicine within 15 minutes before or after prescribed time.” I sought information that could also cause the medicine not to act properly–(adverse affects), that includes diet and in many seizure conditions No Grapefruit! Get adequate rest, etc. Dealing with seizures is not an easy task, but the reward can be helpful in learning of ways to control it. Another item you noted by your post with electrocution or shock, “could the blood complexity differ from what the person needs to have–that’s a reason for CBC etc.

Good luck. And if I can answer anything more from my pursuits to control of over 3 years for one time and no Migraines going on 4 years, please ask.

irvkay312

He keeps with his routine appointments with both PCP & Neurologist, has appointment 21st this month. I called the neurologist to report the recent events. His PCP does regular annual blood work. Always has been good. Diet generally low fat other than he likes his chocolate and he exercises. We had spent 11 days in Rochester in dec 2008 because of issues he was having but the doctor there said there is not enough scientific proof that electrocution 277 volts could have caused the blot clots, even though there was no exit wounds. Personally I think it has messed up his body’s electrical currants. Going from perfectly healthy 43 year old to having blood clots, palpitations & seizures. He does stress easily and that is part of the trigger on his seizures I think. Congratulations on controlling your seizures and migraines. Thank you for your help.

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.

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

@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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We believe he may have been have nocturnal seizures and last month from his description of an incident at a supply house he may have had a simple partial seizure. He is diagnosed as having right temporal lobe epilepsy. he has done the home eeg/ video monitoring after the initial eeg, sleep deprivation eeg and tilt table test. This was done 2014 after the initial seizure Dec 19 2013. He can not tolerate the recommended dose of keppra er 1000 mg. He was only taking 500 mg keppra er for the last two years. Was hoping vimpat would work but he has complained of the side effect, he has never looked up the side effect but I have. She wants him to take vimpat 200mg in morning and night but so far at 100mg morning and night with keppra 250mg at night the side effects are effecting him. What other studies can there be? I have looked up information on temporal lobe epilepsy and recently contacted epilepsy foundation in St. louis, Mo trying to get more information. They recommended adkins diet. We eat low fat diet and he is eating fruits and veggies, also exercises frequently. Our meat is locally grown and butchered very lean meat. It is crazy we were at Mayo in Rochester in Dec 2008 for other medical problems he had after pulmonary embolisms in Dec 2007.

@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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Hi @sall. If you would like to consider a second opinion or have a review of your husband’s medical history, please contact Mayo Clinic http://mayocl.in/1mtmR63.

U.S. National Institutes of Health maintains a database of all clinical trials. It’s quite simple to use https://clinicaltrials.gov/.

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

@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.

@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.

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

Liked by grammydove

@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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