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Old 09-25-2015, 09:51 AM #1
Nursemurph Nursemurph is offline
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Default Psychogenic seizures/pseudoseizures

Ok, here goes ; hello to all! Diagnosed with seizures, partial and myoclonic jerks in 1990. Two years ago medication was becoming less effective..not ineffective. Went to epileptologist had a video eeg done. Many myoclonic jerks through the test increasing as each day passed off meds. With review of these no wave forms noted. Argh. No partial or complex seizures while In The video eeg. Doc. Basically told me we don't know what is going on, probably psychogenic/ pseudo !! Double argh. However MD told to go back on meds in the hospital. I have great control with the new med they added on to lamictal, vimpat. The doc did not want me to leave the hospital off drugs. So, what is the diagnosis! I have been going to a new epileptologist due to the fact that the other one moved to new state. Just feel like they pat me on the head, tell me everything is ok..etc. Etc. Despite being 100% controlled on meds my doc tried to reduce meds which again started the jerks and then the complex Partial Seizures kicked in. Now, told to absolutely not go off meds. Found I was more confused when meds decreased, sleeping hours after a complex seizure and feeling out of it for 24 -48hours. On meds, no seizures feeling great. Don't know what to do or who to believe, current doc feels that perhaps waves are not seen because there is so much muscle movement during the jerk . For those of you diagnosed with pseudo seizures are you or your loved ones well controlled on meds or is it very difficult, I have been told that one of the important components of epileptic vs. pseudo /psychogenic seizures is that medicstion does not stop pseudo seizures/psychogenic. I am 100% controlled on meds. Any feedback is so appreciated.
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Old 09-25-2015, 12:43 PM #2
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Hi Nursemurph,

Welcome to the forum! Just like you I have complex partial, simple partial sz. (seizures) I also have absence and myoclonic sz. Your Epileptologist needs to do a SPECT or PET scan to find more detail on your brain. Also they can do a video e.e.g. but it would be the type where they have to do surgery and drill holes into your head and put the depth electrodes directly on your brain. I had this done and it was very painful.

Years ago my neuro told me that I was having pseudo sz. which means "fake sz." like a person would be pretending to have a sz. but they really aren't. It wasn't until I had my brain surgery to reduce my sz. that they saw brain damage so deep in my brain that not a single test showed anything and this could be what's going on with you.

Ask your Dr. to do a sleep study on you along with an e.e.g. and an e.k.g. at the same time. Often they myoclonic sz. can happen in a persons sleep but they don't realize it and if your Dr. finds you have a sleep disorder you may be having sz. in your sleep.

In regards to your sz. meds I would stay on them as long as you know that they are helping stop/reduce your sz. but don't let the Dr. push you on anymore meds until you have a DNA test done this test will show what sz. med will work the best for you with the least side effect.
I wish you the best of luck and May God Bless You!
Sue
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Darlene (09-28-2015)
Old 09-25-2015, 11:29 PM #3
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Sue!! Thank you so much for the expeditious reply. This has been making me crazy, the diagnosis. Not the seizures, lol. No laughing matter here, you completly get this.

Back in 1990 had a video eeg . Found wave activity , diagnosed epilepsy back the a pet scan was done at that time. So long ago I don't remember details but it was helpful in diagnosis.

Currently, Had a video eeg, that is when all the myoclonic jerks really kicked in everyday that I was off the drugs. It got a bit scary. I asked that nuero if we could do a spect, she stated to me that it was of no use in my situation, because I would need to be inthe middle of a seizure while getting the spect. She recommended a temporal lobe monitor to be installed and watched again in a video EEG.

During the video EEG I had these jerks waking me up at night. No sleep study per se.
DNA test? For med choice, never heard of this?
Staying on meds for sure, but going to see clinical psych .. I want to look at all sources of trouble. I need to put this to rest, my husband is ready to wring my neck. He thinks the docs are crazy, I should never be off meds. He is more than upset about my medical care.
He has seen these start from the beginning, after a brain injury they started.
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Old 09-25-2015, 11:50 PM #4
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I am afraid I may have confused you , at this time I have not done the temporal lobe internal monitoring
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Old 09-26-2015, 01:09 PM #5
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Hi Nursemurph,

If I were in your place I would find another Epileptologist and request that all your medical records me sent to that Dr. Over the yrs. I have had problems with different neuros or Epileptologist and if I'm not happy I just find another Dr. or if it's really bad I report the Dr. to the medical conduct board.

What you may want to do is get away from a regular psych and start seeing a neuropsychologist or neuropsychatrists these Drs. can do simple tests on you and find out what area of the brain you are using for memory, speech and much more they in turn work with your Epileptologist. I had to see one before and after I had brain surgery to be sure I could handle the surgery emotionally if anything happened. The problem I see today is that many psychatrists and family Drs. along with people just don't understand epilepsy and they are living in the dark ages thinking that many people who have epilepsy have mental or emotional problems which is a bunch of nonsense. Look at Elton John, Edgar Allen Poe, Einsteen, Danny Glover and many famous people have or had epilepsy and they are fine.

In regards to the DNA test most Drs. wont say a word to a person about this because they like making money from the drug co. when they prescribe meds. But all you have to do for a DNA test is have the Dr. take a few tubes of blood and wipe the inside of your mouth with a q-tip. All of this is sent to the lab and from the blood and salvia they can see your body chemistry and the amount of enzymes in your liver and they can match all of that up to the best seizure med for you with the least side effects.

One other thing you should do is keep track of your sz. write down what time they happen on a calendar and describe the sz. also write down when you start and stop your monthly cycle because hormones changing each month can often trigger sz. for many women. Keep track when you are sick and if there's a low pressure in the weather because this can sometimes trigger sz. also.
Wishing you and your husband only the best and May God Bless the Both of You!
Sue
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Darlene (09-28-2015)
Old 09-28-2015, 12:31 AM #6
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Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Old 10-03-2015, 02:34 PM #7
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Default Need Information, Please Read...

Hello,

I am glad to read your thread. Will you precisely tell me all the medications and dosages you are taking for the seizures? I have been diagnosed with Psychosomatic Non-Epileptic Seizures (aka - Functional Neurological Disorder, Conversion Disorder). The specialists claim it's "psychological/emotional", but yet can't give me one example to back up their claim! That's because there is no past history of such, so I'm left with no answers, and no where to turn. I've had every scan and lab possible, repeatedly, to no avail. I've spent 10's of $1000. out of my own pocket for years. In fact, I've given up on the medical community, even though I continue to have severe symptoms, daily.

Does anyone out there have "extreme" rapid blood pressure spikes (200's/190's - ruled our pheochromocytoma) and rapid blood pressure falls (50's/30's) within seconds, as well as seizure-like limb jerking, uncoordinated feet/high stepping, slurred speech, lack of motor control to stand or walk, and brain fog? I need help and the medical community does NOT have answers... I don't know anyone with my symptoms and have no support. I am very tired of all of this...

I would sincerely appreciate any information. Thank you.
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Old 10-03-2015, 05:48 PM #8
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Hi LongRoad,

My advice to you is to see an Epileptologist if you haven't seen one yet, these Drs. specialize in epilepsy and know much more than most neuros do.

Years ago I was told I was having pseudo seizure another words faking them just to get attention but in the long run the Dr. was wrong because there was damage so deep in my brain that not a single test showed it, It wasn't until I had brain surgery done to reduce my seizures that they found damage on the left temporal lobe of my brain on not just on the right side of my brain.
I have had problems with my blood pressure dropping so low that I almost went into shock and it was then I found out it was the seizure med that I was taking that caused this problem and the drug was Depakene (Valproic acid)
To get the best help to find out everything that's going on go see an Epileptologist who teams up with a neuropsychologist and neurosurgeon. These Drs. will do tests on you and make a final decision as to what is really the problem. After 43 yrs. of having seizures I've learned not to believe every Dr. I've been to because many of them just don't care and they like to push drugs on a person so they can make some money from the drug co.
I wish you the best of luck and May God Bless You!

Sue
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Darlene (10-11-2015)
Old 10-11-2015, 12:07 AM #9
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Wink Nice to meet you!!


Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

My advice to you is to have your neuro refer you to start seeing an Epileptologist which is a Dr. who specializes in epilepsy. These Drs. are often at University or really big hospitals. Through the many years of having epilepsy I never had sucess in finding a solution to my seizures. Then came across a neuro who set me up with an Epileptologist, who talk me into having a surgery after in testing he put me through. That was five years ago, and since then I have not had a seizure.

Try taking vitamin B12 1000 mcg. once a day. Cut back on the carbs and starch foods and stay away from anything with nutra sweet because the nutra sweet causing more electrical activity in a persons brain and can trigger sz. sometimes. Something else you should do is if you go to the theater for a movie, shut your eyes and turn your head when they have flashing light coming out.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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