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I had depth electrode EEG years ago that confirmed "deep

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hippocampus/TLE", "complex-partial seizures". Regular scalp...
I had depth electrode EEG years ago that confirmed "deep hippocampus/TLE", "complex-partial seizures". Regular scalp electrodes would not pick up the abnormal brain waves for over 26 yrs giving the doctors the impression my seizures were not real, but "behavior problems", resulting in the wrong treatment & being blamed for activities I was not responsible for. We also proved many anti-seizure meds increased the seizures.
Now years later I had to get a new neurologist who doesn't seem to believe me and the seizures/auras I keep having (many getting stuck in a status-like condition, Im maybe walking & talking but I don't make sense nor do I remember anything beyond the aura=usually my heart will beat fast "tachycardia" yet my BP will drop low.) This was documented over 26 yrs ago but the test have been destroyed & the doctors who diagnosed me yrs ago & did tons of test finally placing me on Diazapam have retired & the new ones don't believe I can feel a seizure come on & if Diazapam is given fast enough the seizure may be avoided!
She has cut me back to the point Im having severe numbers of hard seizures, hurting myself many more times! She talks like I am using the diazepam like a addicted idiot vs preventing an injury!
She is demanding I come in for a EEG again, yet I know my focal point is so deep (in the hippocampus) scalp EEG's don't show anything. I refuse the depth electrodes again because the scaring & increase in number of seizures & sleep issues since the day they pulled the wires out of my brain!
I said OK to a VNS in 2004 that did not help & in 2012 when they changed the VNS I began having more seizures that come on faster, GI issues and irregular heart beat issues as well as weight loss of over 50 pounds in a few weeks. Im told the vagal nerve has been injured, resulting in GI issues & pelvic floor issues...I am having issues w/ eating & digesting & absorbing nutrition (triggering more seizures!!!).yet the neurologist here again don't want to look up the facts online & note MANY have this issue!
I have been limited the diazepam to only a few per month, I don't know when or how many seizures I will have till they happen (~ 20/mo in the last 5 yrs since the VNS change. Many times several in a day or back to back auras that wont stop!).
Im told unless I come in for testing to PROVE Im having seizures I cant get help! Resulting in injuries & long GM seizures (?status?) or constant auras that last all day till I have a CP or GM!
. Do the scalp EEG's today go deep enough into the brain to detect hippocampus seizures (again, not able to diagnose till brain was opened in the past!)? I fear misdiagnosis again & going thru that will push me over the edge for the last time!
We also note when I go into one of these "status-like" seizures & went to the ER to stop the auras that don't stop by themselves or w/ 2 treatments of diazepam per day max, 8 times the doctors noted my **potassium/sodium/magnesium levels were low while the auras continued (status-like) & w/ IV's & valium seizures would stop. The chemicals would return to normal along w/ the heartbeat!(leaky brain?)
But this new doctor and several ER room doctors demand Im making it up! Why? I want to be healed, not a dam..d drug addict! Im tired of getting hurt from the seizures & the dangers of the post-ital. phase! Help me.
Have the EEG's gotten good enough to go deep into the brain w/o opening the brain up? How can I get her to read the epilepsy web site that explains my symptoms/auras/chemical changes & post-ictal. phase is REAL & DOING NOTHING IS VERY DANGEROUS????
What should I do? I live alone & these are coming on so fast/strong that I fear leaving the house/bathing/cooking or going out due to # of seizures & zero stopping them!People who see these fear me & I lose friends (I have no family due to misdiagnosis of seizures led to my family giving me up as "uncontrollable brat"! So this subject goes deep!) I have zero life, esp w/ so many that I could stop w/ Diazapam but cant get to use because of her/their stupidity? What should I do? Any advice?
(sorry on length, but my case took so long to prove the first time along w/ the sensitivity to the seizure drugs that I will not go thru being treated like a retarded drug addict when Ive allowed so much testing & proof that made things worse.
I fear more injuries or misdiagnosis again due to test that cant reach the focal point & record a "complex-partial hippocampus seizure" and they try to mistreat me again.
Hope you understand what 26 yrs of being blamed for "behavior issues" when Im unconscious and getting hurt & waking in the mental health ward being drugged w/ drugs triggering more seizures! Can you help me please?
Submitted: 1 year ago.Category: Neurology
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Answered in 3 hours by:
6/11/2016
Neurologist: Dr. D. Love, Doctor replied 1 year ago
Dr. D. Love
Dr. D. Love, Doctor
Category: Neurology
Satisfied Customers: 19,124
Experience: Family Physician for 10 years; Hospital Medical Director for 10 years.
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Hello from JustAnswer. This is Dr. Love and I will be glad to address your questions today.

As for the sensitivity of EEGs, the scalp electrodes are still limited in what they can detect of deep brain tissue. The EEG will be normal in about 10% of people with epilepsy. The yield can be increased slightly by performing sleep deprivation or by performing prolonged EEGs. In someone with frequent seizures, it also may be helpful to follow prolonged EEGs or video-EEGs for days until the onset of seizure activity.

As for the familiarity of the doctors with the literature, it is usually more effective to find a doctor that has more experience in treating such disorders. This is usually more effective than trying to get a doctor to read information in the medical literature on a given topic.

As for what you should do, there are a couple of options since the original evaluation has been lost. It certainly is reasonable to undergo repeat EEG using one of the methods for increasing yield. Another option, though, would be consultation with a Neurologist at a teaching hospital. Teaching hospitals may be better equipped to perform advanced testing, such as the ability to perform prolonged video-EEGs. The doctors at teaching hospitals also have more experience in dealing with difficult cases.

If I can provide any clarification, please let me know.

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Customer reply replied 1 year ago
It sounds to me like my fear of the test not showing the focal site or seizures due to the focal depth in the brain is still what I will be fighting again!(but they dont understand the link!) As well as teaching the ER Drs about the "aura" feelings they can document but dont understand the link or what is about to happen when these begin or the dangers if not stopped! (misdiagnosis again!).( my Dr. is insisting me to go thru retesting/trying dangerous drugs again-tried & proven during telemetry, what they trigger! She says "no Diazapam or help will be given unless I let her endanger me again!"*multi-dangerous threats to my health/life, that can be prevented & proven in the past!!)
It took years & many video telemetries coming back "normal" before they decided to go depth **that PROVED everything I told them I felt w/ my seizures were documented and FACT...REAL SEIZURES/DAMAGE/SENSITIVITY TO THE DRUGS MAKING ISSUES DANGEROUS/WORSE! (and thousands of others w/ the same issue were re-diagnosed from "manic depressive schitzo"/BEHAVIOR ISSUES to "uncontrollable complex-partial/generalized hippocampus/TLE that get worse w/ the seizure meds/body chemical imbalances/hormone triggers etc-as we tried telling them for years!No one will listen to us!
**( THE BIBLE HAS 2 STORIES ON THIS EXACT DISEASE 2000 YRS AGO! THE PATIENT WAS BLAMED AS HAVING "DEMONS" TILL JESUS TOLD THE DISCIPLES IT WAS A "TEST FOR THOSE WHO SAY THEY ARE FOLLOWING GOD!" "THE PATIENT & THEIR FAMILY WERE NOT DEMONIZED!"
YET IT FEELS LIKE WE ARE BEING TREATED LIKE THAT TODAY, 2000 YR LATER W/ TEST PROVING IT IS A PHYSICAL DISEASE-NOT MENTAL OR SPIRITUAL! WHY DO WE HAVE TO GO THRU THIS? IF IT WAS SEXUALLY TRANSMITTED I BET THE TREATMENT WOULD BE SERIOUS & A CURE FOUND BY NOW! BUT INSTEAD WE ARE BLAMED, THREATENED OR IGNORED BY THOSE BEING PAID TO FIND THE CAUSE & CURE!)
Blame stopped for a few years after my proven test, but hope for control or cure was/is still not being given as an option other than "some control" w/ diazapam (IF THE DR WILL PRESCRIBE IT & UNDERSTAND OTHER SEIZURE MEDS ARE VERY DANGEROUS TO THIS TYPE OF SEIZURE/PEOPLE!)-if inserted fast enough when the aura is felt & absorbed to stop the ongoing auras/partial seizures & the GM that follows w/ postictal time out is stopped. (sometimes the seizures/auras (?partials?) will continue back to back for hours leading to a grand mall...possible status(?) causing brain damage & endangerment!I have to go to an ER to stop these flurries/clusters. It is the only way to stop the non-stop seizures/auras") ("clusters that can go into a GM at any time resulting in repeated seizures/injuries/becoming endangered during the postictal phase by walking in the street w/o any memory or knowledge etc/falling & getting hurt/choking on vomit etc!***But most ER rooms rooms have ZERO IDEA WHAT THESE SEIZURES ARE-THEY BELIEVE DROPPING LIKE A FISH FLOPPING AROUND IS THE "ONLY TYPE OF REAL SEIZURE"!!! THERE ARE OVER 100 DIFFERENT TYPES ,THE EPILEPSY WEB SITE TALK OF THIS ISSUE ALLOT!
>, YET DOCTORS SEEM TO NOT BE UPDATED ON THIS! CAUSING MORE ISSUES FOR THOSE LIKE ME TRYING TO GET HELP BEFORE GETTING HURT!Also I noted on the website & my last MRI there was severe Brain scarring, heart damage (AFIB & low BP! low circulation, causing more issues due to no one helping treat or admit irregularities are part of this seizure that are triggering more seizures due to low blood flow to the brain!. I cant find a doctor who will look into the possibility that the brain is reacting to low blood flow (low BP)=>brain causes the HR to increase (70=>100 beats/min)
=>the brain then "shuts things down=aka "full seizure" till circulation returns to normal & the brain waves recover to normal!
Easy to see this pattern, yet no Dr wants to listen or believe we know what is happening in our body....and when we wake up ".Hours are missing, injuries have occurred, I have been found in the street or on the lawn/in water in the past after feeling the aura! Or 911 is called when Im on a bus or found in a building having a seizure, I wake up in an ambulance & everyone becomes afraid to get near me! Those who know my issue say I walk & talk but make no sense nor remember anything past the aura! And I have injured myself many times, but no Dr seems to care or help stop these!**The depth electrodes caused heavy scarring & sleep dysfunction from the day of wire removal & for over 30 yrs now. They try to ignore this is damage they caused, but we know it is a trigger to seizures!I will not go thru that again to prove what they already had on records!I dont understand this site on how you might can help me.I cant seem to find help & are using my disability income to stay alive thru chinese medicine to help w/ increasing blood flow & circulation,but they agree the scar tissue in my brain & body is so thick that they dont know what to do.?Limited $$ keeps me from your offer?HELP?God Bless u.
Customer reply replied 1 year ago
I cant take any more. Please help. I pray I came upon you and you would be concerned & want to help many of us saying this & being ignored.send me advice ASAP before I give up. Thank you. (websites like vnsmessageboard.com might help you understand how many others are suffering the same things & looking for help before we are used/abused again by Drs doing test on us & not admitting the dangers or deaths...blaming us & pushing us out the door or threatening us w/ no help unless we do things we know will hurt us vs help. Please help?
(?free trial for 7 days? Cant afford much more if these dont stop now.Would love to "talk" to you but cant afford the phone cost either. Pray you care more for health/gift God gave you to heal vs income.)
Neurologist: Dr. D. Love, Doctor replied 1 year ago

I understand your frustration, but over the internet, we can only provide information. At this point, it may be best for you to be seen at a teaching hospital.

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Customer reply replied 1 year ago
I was writing & everything was erased, did you get my message?
Neurologist: Dr. D. Love, Doctor replied 1 year ago

Not after my last response.

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