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

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

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.

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/.