Epilepsy and auditory hallucinations

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finiteguy

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Hi all, I am new to this forum. I have a question, but need to give you some back ground.
My wife of 35 years was diagnosed with schitzo effective disorder about 15 years ago. Her symptoms are auditory hallucinations, she hears voices that are not there. She has been taking anti-psychotic drugs for 15 years to stop the auditory hallucinations and they have not been effective. She gained 100 lbs from the medication, and her health is terrible. Recently we found a new therapist and she doesn't agree with the schitzo effective disorder diagnosis. My wife is 65 years old, and the therapist says that it is unusual for people to get that disease at 50. In addition, the drugs do nothing.
My wife's mom had epilepsy...so there may be a genetic connection, that is to say, my wife may possibly have seizures that cause the hallucinations.
It's the only thing that makes sense. I am so upset that the doctors didn't test her years ago. They haven't concluded that she is having seizures, but several years ago when my wife was waking up, I saw her have a severe tremor, like she was having some sort of seizure. I don't have any experience with this, and any advice is greatly appreciated. I may be getting ahead of myself here, but the epilepsy/seizure connection seems to fit. Not sure what they would give her for meds if it turns out that this is the problem.
 
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Hi finiteguy, welcome to CWE!

Auditory hallucinations can be a kind of seizure called Simple Partial. Simple Partials take the form of a wide variety of sensory distortions, but one category is phantom sensations: phantom sounds, smells, hallucinations, deja vu and jamais vu. They can also take the form of unexplained feelings of dread, "pit-of-the-stomach" sensations, etc. You can read more about Simple Partials at the link below. You may want to see if your wife has experienced some of the other partial seizure symptoms as well.
http://www.epilepsy.com/epilepsy/seizure_simplepartial

I think you make a strong case for your wife's symptoms being seizure-related. It may be tough to make the diagnosis of epilepsy via a specific test -- EEG's don't tend to record partial seizures. But her clinical symptoms and family history should be good reason for a referral to a neurologist for evaluation. Another [ess likely] diagnosis would be tinnitus, which can also feature phantom sounds and voices.

I hope the neurologist will consider tapering her off the anti-psychotics and perhaps trying a course of anti-seizure meds to see if they help. Please keep us posted, and best of luck to you both.
 
I've had epilepsy for 30+ years, experiencing Simple partial, Complex partial and generalized seizures. On several occasions I have had those seizures where I did have an auditory hallucination right before I went into a big time Tonic Clonic seizure. So basically it was an aura, or a simple partial seizure. And another time, I had a seizure where I swear I could see part of my arm floating in space. Weird! I would never have told my family any of this. At least my epileptologist and shrink understood.

I, too, hope the dr. will taper your wife off those cruel anti-psychotic drugs and find what is actually going on inside her brain.
 
Thank you, all of this is very interesting and disturbing, because if we find out that her problem is in fact due to seizure activity in her brain, then she would have been treated for the wrong illness, and basically lost 15 years of her life, because, as you say, the ant psychotic meds are very cruel. Thanks for you posts.
By the way, my wife does in fact have tinnitus, she gets ringing in her ears.
 
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Yes these can happen. I had them most days for 8 years as I was afraid to say anything lest people think I was crazy, when they changed meds they significantly decreased, I've heard them since I was 3 though, just less frequently than that 8 years. Investigate it. xx
 
Thanks for your reply to my post. My wife has been taking anti psychotic drugs for 15 years and they do no good. All they did was make her obese and now she can hardly walk...sadly this has destroyed our marriage. I will investigate the seizure activity route and maybe finally find an answer. If it is in fact related to epilepsy, I'm wondering what they would give her for medicine? I'm also upset that the bad effect from the ant psychotic drugs is irreversible and were probably not necessary due to misdiagnosis.
Her doctors knew that her mom had epilepsy, and her mother took phenobarbital when she was pregnant with her. They never considered any of that, they just said schitzo-effective and drugged her for years.
 
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Thank You, Lessa. The ill effects are irreversible because she can barley walk. Anti psycotics do that..am I am told that when you stop taking them, the problem doesn't go away. You seem very nice. Thank you for your kind replies.
Robert
 
If it is in fact related to epilepsy, I'm wondering what they would give her for medicine?
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They would need slowly taper her off the antipsychotics, and then slowly ramp up on a small amount of an anti-seizure medicine such as Lamictal, Keppra, Depakote or Tegretol. There are quite a few medications out there, and everyone reacts differently, so it's tough to know which would be best for her. But I do think it would be important to 1. make sure she's okay off of the anti-psychotic before starting the new drug and 2. Try a very small dosage of the new drug to see how she feels.
 
If there is a history of epilepsy in the family AND a mental health professional disagrees with the mental health diagnosis AND you've witnessed a seizure then you must consult with a Neurolologist. In college I had simple partials with auditory, smell and tactile hallucinations. I spent the next 27 years as a psych patient, some of it on anti-psychotic drugs that did sooooooo much damage. Other years on anti-depressants that made my seizures WORSE and on anti-anxiety drugs my body became dependent on. I understand. I've had multiple surgeries to try and repair things and have become a very complicated patient mostly because of heavy dose anti-psychotics at an early age and a missed tumor and seizures.

It may be difficult sorting things out but it is worth every effort. Your wife needs a good mental health professional who recognizes that something else is going on here (she seems to have that) an ally (she has you) and a great Neurologist and things can and will get better.

We can start our lives over at any time. I'm starting mine over 27 years later and I don't mind. Just so relieved to have another shot at it.

Please keep us posted.
 
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Mornin! When I started having auditory hallucinations I literally thought I was going crazy (I was newly diagnosed with Epilepsy and didn't understand). I hear my back door slamming shut and I hear cats meowing in distress. I didn't tell anyone until my Epileptologist asked me if I heard noises and I said omgoodness, yes I dooooo! haha I was so relieved to know it was common. I sure hope the best for you and your wife and she's lucky to have you for support. :)
 
Lessa said:
Yes these can happen. I had them most days for 8 years as I was afraid to say anything lest people think I was crazy, when they changed meds they significantly decreased, I've heard them since I was 3 though, just less frequently than that 8 years. Investigate it. xx
Click to expand...

It took 3 1/2 years for me to get DX'ed because I thought everyone would think I was nuts because I had phantom smells. I was DX'ed for TIA's because I also had weakness in my left arm and/or leg. I know my husband thought it was a mental problem when I woul hunt and hunt for the bad odors. I finally gave up and just endured the odors because I knew they were not really there.
 
finiteguy said:
Hi all, I am new to this forum. I have a question, but need to give you some back ground.
My wife of 35 years was diagnosed with schitzo effective disorder about 15 years ago. Her symptoms are auditory hallucinations, she hears voices that are not there. She has been taking anti-psychotic drugs for 15 years to stop the auditory hallucinations and they have not been effective. She gained 100 lbs from the medication, and her health is terrible. Recently we found a new therapist and she doesn't agree with the schitzo effective disorder diagnosis. My wife is 65 years old, and the therapist says that it is unusual for people to get that disease at 50. In addition, the drugs do nothing.
My wife's mom had epilepsy...so there may be a genetic connection, that is to say, my wife may possibly have seizures that cause the hallucinations.
It's the only thing that makes sense. I am so upset that the doctors didn't test her years ago. They haven't concluded that she is having seizures, but several years ago when my wife was waking up, I saw her have a severe tremor, like she was having some sort of seizure. I don't have any experience with this, and any advice is greatly appreciated. I may be getting ahead of myself here, but the epilepsy/seizure connection seems to fit. Not sure what they would give her for meds if it turns out that this is the problem.
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I'm sorry to hear about your wife's heath issues. I hope you can find a good doctor that will listen to you.

I hope you have had mental heath insurance. It would add insult to injury if all along you had to pay out of pocket for mental health care when it was really a neurological problem. I'm assuming you're from the US where many people haven't had mental health coverage included with their health insurance coverage.
 
MAB said:
I'm sorry to hear about your wife's heath issues. I hope you can find a good doctor that will listen to you.

I hope you have had mental heath insurance. It would add insult to injury if all along you had to pay out of pocket for mental health care when it was really a neurological problem. I'm assuming you're from the US where many people haven't had mental health coverage included with their health insurance coverage.
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Yes we have mental health insurance. I am from the Boston, MA area. Just tonight we had a bad night. My wife walks with a cane and seems to be getting worse. She tried to walk into the living room and couldn't take a step...like her brain couldn't tell how to take the step. I am so aggravated. It takes forever to see a doctor. This has got to be a neurological problem. The anti psycotics do not surpress the voices. Sorry to sound so negative.
 
giveasmile said:
If there is a history of epilepsy in the family AND a mental health professional disagrees with the mental health diagnosis AND you've witnessed a seizure then you must consult with a Neurolologist. In college I had simple partials with auditory, smell and tactile hallucinations. I spent the next 27 years as a psych patient, some of it on anti-psychotic drugs that did sooooooo much damage. Other years on anti-depressants that made my seizures WORSE and on anti-anxiety drugs my body became dependent on. I understand. I've had multiple surgeries to try and repair things and have become a very complicated patient mostly because of heavy dose anti-psychotics at an early age and a missed tumor and seizures.

It may be difficult sorting things out but it is worth every effort. Your wife needs a good mental health professional who recognizes that something else is going on here (she seems to have that) an ally (she has you) and a great Neurologist and things can and will get better.

We can start our lives over at any time. I'm starting mine over 27 years later and I don't mind. Just so relieved to have another shot at it.

Please keep us posted.
Click to expand...

Thank you so much. I'm not sure if what I witnessed was an actual seizure, but sometimes when she walks, she stops because it appears that her brain can't tell her how to take the step. Not sure if that is a seizure but, these anti psycotics are really bad. She never really took large doses. I think 2 mg /day of risperdone.
 
finiteguy said:
Thank you so much. I'm not sure if what I witnessed was an actual seizure, but sometimes when she walks, she stops because it appears that her brain can't tell her how to take the step. Not sure if that is a seizure but, these anti psycotics are really bad. She never really took large doses. I think 2 mg /day of risperdone.
Click to expand...
What I witnessed as a very bad tremor head shaking. Is that what a seizure might look like?
 
Yes that SEEMS like a seizure problem to me. Seizures come in so many flavors that even a neurologist can't always tell what's going on. I think I would proceed by treating the seizures and seeing what follows. But, that's only my feeling/opinion. I am certainly not a doctor of any kind. Anti-psychotic drugs scare me. I know what toxic psychosis feels like. It's a long story. I hope you can find a neurologist who will take a long time in conversation with you. Establishing a good relationship with a doc that you LIKE pays off. I've been with the same one for over twenty years. Now when we meet,we both know everything about my case and we can discuss the best course of action. He respects me and my opinions as I do his. Find one of those.
 
I am so sorry to read this :(

Sadly there is a battle between whether it is psych or neurology symptoms and getting a good neurologist is the way forward with this.

Anti-psychotic meds are hell. I, myself have been there. The only hope I can give you about the weight gain is, stopping them will cause your wife to drop pounds, hopefully leading to her mobility becoming easier. 15 years is along time on ( what could be the wrong medication). I wish you luck and would be very interested in an update of yours/her story.
 
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Just an update. My wife is having great difficulty walking now. She is still taking risperdone and I'm thinking it is causing stiffness and pain in her limbs. She also seems to have problems walking in open spaces and feel like she will fall because nothing to hold on too. We have to wait until next week to see a neuro psyciatrist, so we have to go through hell for the rest of the week. She is so upset about being debilitated like this. If this is a results of mis diagnosis and she needless too anti psycotics for 15 years, I'm going to look into legal action. Right now, I feel like she has no doctor. Her primary care is useless, and the neurologist at Lahey Clinic was also useless with no answers. Sorry for the vent, but I am really upset.
 
finiteguy,

You certainly seem to be going through Hell, and that's not the way this should be proceeding. The dizziness in open spaces is almost definitely drug induced. (I have been there)

Remember, a doctor's first duty to his patients' is to work to reduce the their suffering. It doesn't look to me as though that's the treatment you have been receiving.

Find that elusive good neurologist. Demand answers to every question of which you can think. Write things down at home as they happen and as they occur to you (EVERYTHING MATTERS HERE) and refer to your notes at his office without embarrassment. He does after all.

Mostly, be your own advocate(s). Modern medicine won't really do that for you. Read everything relevant upon which you can lay your hands, including "The Physician's Desk Reference". There, you'll be able to see the effects, both beneficial and adverse, of a given medication. I read about all the drugs I'm prescribed, even if I have to have a dictionary beside me to get through the descriptions and indications. Then you'll have to do a bunch of detective work to figure out, as best you can, what's going on. Once you've done this, ask the doctor very pointed questions and stare right into his eyes. Don't fill in the empty air with chatter like folks tend to do. Just look directly at him until HE answers your question. Don't stop there. DEMAND that he answer any question that develops, and refer to your notes. Sounds like a real hassle, eh? But what's peace of mind worth? What's real relief worth? Keep looking hard for that neurologist that listens as much as he speaks. The doctors with a god complex will reveal themselves very quickly. When you can't get a word in edgewise, keep looking.
 
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