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Wondering if son has temporal lobe epilepsy after what he told me.

I'll try to make this brief.  My son is 21 and going through a difficult time with anxiety, OCD with intrusive thoughts.  etc.  He recently told me that he has ALWAYS had visual hallucinations.  I can't remember specifics on auditory hallucinations but I think they have been around for a very long time too. 

We can pinpoint these to his early childhood because one involves a neighbor's house that is no longer there.  In other words, he had the hallucination while the house was there, and years later when the house wasn't there, he remembered his hallucination of there being a field across the street.  When the house was gone and he saw the field, he thought his visual hallucination was a premonition.  He never told anyone about his visual hallucinations because he wasn't bothered by them, thought they were normal, knew they weren't real, thought he had a creative imagination.

Basically, he says that sometimes when he's looking at something the entire view will complete switch briefly to a hallucination.  Let's use the house across the street.  He was standing on our porch watching his father and friend talking.  He can remember the exact conversation they were having.  Suddenly, the house across the street was gone and there was a huge empty field across the street.  It was brief.  He thought it was weird and cool.  Never mentioned it like he never mentioned any of his hallucinations.  A few years later, the neighbor's house burned down because the neighbor knocked over a candle.  When the house was leveled and grass was planted, my son remembered that specific hallucination. 

Three years ago, he asked me if I heard my thoughts.  Apparently he has been asking his friends for years if they heard their thoughts.  They all thought in pictures.  He says he always heard sounds and his thoughts.  We can pinpoint this to early childhood too because he remembers worrying if the babysitter could hear his thoughts when he was little.  He remembers testing it by thinking things to her and she didn't respond.  But I guess three years ago he became disturbed by hearing all of this because he started having intrusive thoughts. 

The reason he told me about his life-long visual hallucinations is because he was experiencing deja vu recently.  He thought his previous visual hallucination of the house was deja vu.  He has also been having feelings of nothing being familiar---but usually when he wakes in the middle of the night and is half asleep.  Looking up deja vu is how I learned temporal lobe epilepsy. 

He has had headaches his entire life.  When he was in 4th grade, his pediatrician ordered an MRI looking for brain tumors.  It was normal. 

I have seen the blank stare multiple times since 9th grade.  I strongly believed that these are associated with anxiety and panic attacks.  I don't remember blanks stares earlier in his life though but my memory isn't as good as it used to be.

My husband and I remember at some time between 1st and 4th grade, we had to replace his TV with a smaller one because it caused some problems.  My husband, not his biological father, has a sister with full fledged epilepsy so he knew right away that my son's experience with the TV wasn't right and switched his TV. 

He recently had a concussion and his psych symptoms have gotten worse.  He may have cerebral fluid leak because clear drainage is in his one ear every morning when he wakes up.  He has an appointment with a neurosurgeon next week to initiate the diagnosis of this drainage.

My main problem is that I don't know where to go from here.  His PCP, who is a highly respected and talented internist, is treating him for his psych issues because my son does not like mental health professionals.  I feel I need to tell his PCP about this, but I think I will sound like I'm going off the deep end researching my son's symptoms.  I'm also fearful that it will be misinterpreted as mental illness without ruling out epilepsy.  My husband thinks I should tell his doctor. 

I haven't told my son.  I didn't make a big deal about what he told me about the visual hallucinations. I just reassured him.  After all, it isn't something that ever bothered him so I don't want to put fears into his mind.  It was more like "thinks that make you go hmmmm..." afterwards and I started trying to find information about it. 

Can anyone relate to my son's experiences here?  Or do I sound completely off track?   

Comments

Re: Wondering if son has temporal lobe epilepsy

Definitely make an appointment to see the PCP!!  Keep track of his symptoms, and when and where they occur.  Whether or no your son has epilepsy, the My Seizure Diary at the top of this website can help with that.  Ask you doctor to refer your son to a neurologist who specializes in seizures.

Re: Wondering if son has temporal lobe epilepsy

Oh, and quit trying to diagnose you son :)  (And the smile is intended, as I've been there).  Doing a certain amount of research is great, but until you see a specialist, close the books (so to speak), and keep track of symptoms and experiences instead.  It will bring you a certain degree of peace of mind and sanity until the appointment :)

Re: Wondering if son has temporal lobe epilepsy

I don't want to be diagnosing my son.  If I didn't read about these things, I would have never known they were significant things worth mentioning to the doctor.  He told me about hearing his thoughts three years ago and I never once thought that was noteworthy because he didn't seem to have a problem with it and he had been hearing them his entire life.  If I mentioned every single thing my son told me throughout his life, I'd be at the PCP's office all the time.  I just never thought these things were important.  I would have never ended up here and I would have never found out a neurologist who specializes in seizures is important.  LOL 

Telling him to keep a diary will mean indicating that there might be something "off" about these visual hallucinations.  Since he hasn't been upset about them, I don't want him to become upset about them.  That's why I wanted to talk to the doctor first----to see if he thought it was important.  I think I have an idea of how I can get him to start doing it without causing him distress. 

Thank you so much for your response! 
I'll definitely talk to his PCP. 
You've given me the courage!

Re: Wondering if son has temporal lobe epilepsy

Glad I could help!  For 3 years I have had nocturnal seizures, and for the first year and a half I was misdiagnosed because my seizures were not  the classic convulsion type.  It wasn't until I got in to see a seizure specialist (epileptologist) that I was properly diagnosed.  So, I know the value of seeing the right person.  Something is going on, so if your son does have seizures or does not, the seizure specialist is a good place to start.  Best wishes to you and your son!

.

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Re: Wondering if son has temporal lobe epilepsy

My thanks to both of you.  It helps to be validated that something might not be right.

The mention of Alzheimer's is something I recently stumbled upon.  His paternal aunt has early onset Alzheimer's.  She developed it 10 years ago.  Since our son doesn't know her, we decided to postpone telling him about it since there is no cure.  I will let the PCP know he has a second degree relative with it though. 

I do need to have a serious talk with the PCP alone.  I can't relay this over the phone via his nurse.  I can't talk about all of these things in front of my son at an appointment.  I'm going to need to schedule an appointment for myself so I can be alone with the doctor to explain everything the best I can. 

I'll start the diary for now.  Hopefully I can get him to talk about them again without tipping him off that I'm concerned.  Interestingly, when I told my husband about the field/house hallucination, my husband got excited and said he should keep a journal because of people like Nostradamus.  I was so surprised my husband believes in that stuff.  But that's not the way to inspire him to keep a journal.  The last thing we need is his thinking he is predicting the future, especially since some of his visions aren't pleasant.  They haven't worried him in the past, and I don't want to do anything that will cause him to start worrying about them now. 

I think the best way to inspire him at this point is to share with him how many famous writers had similar experiences to his.  I'll play up his belief that it's an active imagination.  He's a good writer.  Who knows.  He doesn't have access to the internet right now because he has fear of technology because he doesn't trust his mind right now.  It's not psychosis paranoia.  He describes it as paranoia ABOUT people finding out about his neurosis.

I know it seems odd I'm keeping so much from him, but he's in a very fragile stage right now.  He has improved significantly over the past two months.  I don't want to unnecessarily set him back with something to worry about when he's working on so many other things. 

 

 

Re: Wondering if son has temporal lobe epilepsy

By all means discuss this with his PCP. As for the diary use it and YOU can without telling him. The diary can also give his doctor someh=thing to look at. His experiances sould be Auras but not being a doctor I wll not say they are. Also neurologists and not  doctors that specialize in psycology there are many things that happen in the central nervious system One being epilpesy another alsheimers which is why mant neurologists have dhanged into speclists. What you need to do is used the diary nd not and new experiances and after discussing them bring up others that might be in his past. His head aches could also be types of seizures but I am no doctor. If you don't want him to use the diasr try and ge him to write them down as stories oe essays.

I hope this helps and your PCP can get him looked at

Good luck

Joe

Son has temporal lobe epilepsy after what he told me?

Hi Missy Muffet,

Phraseology for subliminal events is difficult to keep valid and objective.

For instance, the vast majority of people use words to think, and in this "thinking",
they "hear" these words. "Thinking" in pictures is less common with "thinking"
as an "experience" (think of the famous phrase "The ineluctabale modality of the
visible"). Thinking in music is heard by the self too; Beethoven "knew music so
well he could probably hear it in his head."

Also, it is often very easy to "hear" other people think, as in using words to think,
there is most always subtle movements and slight sounds of the words being mouthed with
the thoughts. This persists even after years of being taught to "read" silently and not
to openly voice thoughts. Other forms of "language" for thinking to one's self has this
problem also (Clever Hans, the world famous horse, could "hear" it all).

Generally, hearing the thoughts is regarded as a problem when the heard words are regarded as
coming from another entity that doesn't "exist" as a plausible source; the famous theory of the bicameral mind
promoted by Julian Jaynes takes this initial self-relevelation as the origin of consciousness
(I like the stance that consciousness with thought is just subtle verbal behaviour (as defined by B.F.Skinner)
under the influence, and influencing, the person emitting the behaviour generally restricted
as experienced mainly by the emitter).

There isn't a mental disorder that epilepsy can't imitate, making proper differentiation very difficult
for sloppy doctors. This problem with differentiation can also be seen in the simpler(???)
subject of migraines: http://www.migraine-aura.com/content/e27891/e27265/e26585/e49268/index_e...
(with failure of differentiation with epilepsy here, just call it migralepsy to minimize any headache of
classification, but retain these contrary formatted paramnesias for Déjà vu and Jamais vu???).

Tadzio

Re: Son has temporal lobe epilepsy after what he told me?

I remember researching hearing thoughts three years ago.  It was interesting to learn that people think in pictures, music, colors, etc.  I don't think in pictures but I most certainly don't hear my thoughts in the form of sound like my son does.

I do know without a doubt that he is hearing his OWN thoughts.  I also know that he is aware of what's real and not real.  He isn't believing any hallucinations are real. 

His paranoia extends only to being worried someone will hear his intrusive thoughts.  They get so loud in his head, he has a hard time believing that the sound isn't escaping.  It must be deafening.  Fortunately, they're subsiding on the antidepressant.  I don't think he's had one all week.  And his "worries" (which are different from his intrusive thoughts) have subsided significantly too.   

I've recently learned that migraines can cause many of these things too.  This is where the PCP went a few weeks ago when we were talking about his headaches.  What doesn't make sense is the frequency of his headaches.  I'm just not seeing migraines.   

 

Re: Wondering if son has temporal lobe epilepsy

Hi,

I am 21 and i was diagnosed with temporal lobe epilepsy a few years ago. I think that its important for you to talk to your son about your concerns, he may act like these things are not bothering him but from personal experience they probably are. I know that from a very young age i experienced things that no one else around me did. I had deja vu and visions similar to what you described, as well as blank stares, migraines and vivid dreams. However after being looked at like a freak by my friends when explaining the deja vu i was too scared to tell anyone.

Talk to him and talk to his doctor, im sure he is aware that these experiences are not 'normal' if such a thing exists. If it turns out to be nothing serious then thats great, but ignoring it isnt good I know from experience, i tried for a long time to pretend that it didnt bother me that i was different but it did bother me and i knew it was stange. If my mother was aware im sure my diagnosis would have been made sooner. 

If it is temporal lobe epilepsy it can get worse if it goes without treatment so i strongly reccomend you talk to him about it and see how he feels, you can be sensitive and supportive while still being serious about his symptoms. You may be right it may never have bothered him before or it may have bothered him soo much he was too scared or insecure to talk about it, I know i was. 

I Hope everythink works out well, Good Luck!

Re: Wondering if son has temporal lobe epilepsy

Thank you for sharing.  I will talk to him the next time the opportunity arises.  If I approach him about it while he's doing fine, he gets stressed because the subject ruins a good day.  If he's doing super bad, it's not the right time either.  He needs to bring up deja vu or something else again.

I have a question for you.  Last week, we were driving in the car at night.  He suddenly freaked, was holding his head, telling me to slow down (I was only going 30), and complained about the lights of other cars, and his head hurt like it never hurt before.  I tried to take him to the emergency room, but he refused.  We got home and it got bad again so he agreed to go to the ER.  Once we were in the ER parking lot, he refused to go in saying he felt better. 

Have you ever experienced anything like that? 

Re: Wondering if son has temporal lobe epilepsy

Thank you for sharing.  I will talk to him the next time the opportunity arises.  If I approach him about it while he's doing fine, he gets stressed because the subject ruins a good day.  If he's doing super bad, it's not the right time either.  He needs to bring up deja vu or something else again.

I have a question for you.  Last week, we were driving in the car at night.  He suddenly freaked, was holding his head, telling me to slow down (I was only going 30), and complained about the lights of other cars, and his head hurt like it never hurt before.  I tried to take him to the emergency room, but he refused.  We got home and it got bad again so he agreed to go to the ER.  Once we were in the ER parking lot, he refused to go in saying he felt better. 

Have you ever experienced anything like that? 

Re: Wondering if son has temporal lobe epilepsy

Hi,

I understand that it its difficult for you and is probably very difficult for your son i know i was terrified that people would think i was crazy, so i understand his unease with the subject i just think its important for him to be involved in his own diagnosis whether its epilespy, a mental disorder or a mixture of both. Im not sure if this will reasure you but i definately think in words. It is in a different way to your son but before i started my medication i would think rather than speak sometimes unaware that i wasnt actually saying what i was thinking believing that people could hear me, i would also have conversations with myself in my head, not normal i know. That has completly stopped now. That doesnt mean that you should take your sons symptoms as epilepsy and neither should he, it just means you need to talk to him and his doctors about all his symptoms to figure out whats wrong. I just think that as an adult he deserves to be involved and if it is a mental disorder or mixture then you discussing these symptoms behind his back might not help his mental state. 

As for your question i have experienced something similar but not the same, i used to have severe migraines that caused extreme sensitivity to movement and light, to the point where any light or movement at all caused extreme pain and nausea, i have never been in a moving car when one hit but i can imagine it would be very painful. However the refusal to go to the hospital is different, that may be due to something else iv never felt that way, but im not usually scared of hospitals. My migraines also usually last at least a few hours and a dark room is my only relief, but everyone is different. The only way to get an accurate idea of whats going on is to talk to a specialist and inform them of everything, that way they can do the right tests. Plus people get migraines without being epileptic, it depends on the situations and sensations, only a specialist can advise you properly.

Have you tried suggesting a site like this to your son? It may help, give him a chance to talk about how he feels and whats going on without fear, he doesnt even need to use his own name.  You obviously care about your son and we are just here to help and offer advice and support when you need it. If you have any more questions feel free to ask. 

Re: Wondering if son has temporal lobe epilepsy

Thanks, I just saw your response. 

I can't suggest a site like this to my son because he's afraid of the internet right now.  He's afraid of telephones, the internet, the windows being open. 

I'm not meaning to talk behind his back to hide anything from him.  I just don't want to talk about things that might cause unnecessary worry.  If I'm totally wrong, I don't see why I should put in his head that it might be epilepsy or anything else.  I figured I would explain what he has told me to the PCP.  If the PCP thinks these things are concerning, then we can decide the best way to broach the subject with my son.   

It's not completely abnormal for me to initially blow off hearing he had deja vu.  Everyone has deja vu at times in their lives.  What concerns me is the deja vu happened within the same days he experienced a few episodes of the opposite of deja vu, along with the headlights while driving eposide.  All of this could be migraines.  Who knows.  I believe the PCP will attribute it all to migraines.  My concern is that I think epilepsy should be ruled out before settling on migraines. 

I'm under a time crunch too.  I resisted putting my son on disability for years before I always had hope he'd overcome his struggles.  Now we're 7 months away from the 22nd birthday deadline to qualify for his father's social security earnings.  My son doesn't want to go on disability.  He has hope for his future too.  But the difference between general social security disability and going on his father's is $500/month instead of $2,500/month.  IF IF IF this is a serious disability, I want to ensure my son has access to money to support himself.  I'm not hoping it's a disability.  I'm hoping this is a temporary set back and he'll lead a happy healthy life in the near future.  But I feel I need to be proactive and be prepared for the worst case scenario so he has the funds to support himself in the future. 

.

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Great, I tried to talk to my son.....

In the spirit of not talking behind his back, I tried to broach the subject with my son today.

It did NOT go over well.  He is mad at me.  Told me to get a hobby.

I should have stuck with my instincts and not said anything!!!!!!!!!!!!!!!!!!!!!!!!

Your son might have or had

Your son might have or had absence seizures, however the OCD, the hallucinations, both visual and auditory, and the intrusive thoughts are clear markers for schizophrenia. Anyway, see if your pcp can order an EEG. It is the only way to support your epilepsy theory.

I know that your are desperately trying to keep in out of the mental professional office for fear of bad news, but I think that it is important the the intrusive thoughts get addressed because they only get worse of not treated.. i might be wrong, but II figure you consider also that possibility as it can get worse.

I wish you the very best, I am a mother trying desperately to help my son too. Best wishes

Re: Your son might have or had

Hi MereLoaded,

There are no "clear markers" for schizophrenia.

Some practitioners will assert "clear markers", but in case histories, some of these markers turned out to be such as speaking only Polish at an airport where no one else understood Polish during that particular brief time period.

The Rosenhan experiment also demonstrated the absence of "clear markers", except maybe for the Catch-22 danger of "On being sane in insane places": http://en.wikipedia.org/wiki/Rosenhan_experiment

Then, the subtle effects of epilepsy tend to shift MMPI scores toward excessive Paranoid Schizophrenia on the MMPI's dimensional scales (the "correction" technique is expert denial of the technique's total failure); A comparative composure of MMPI-2 profiles is illustrated in "Figure 1" (page 7 (8 in pdf#)) of "The Clinical Neuropsychologist" journal paper on "MMPI-2 profiles: Fibromyalgia Patients Compared to Epileptic and Non-Epileptic Seizure Patients" by Storzbach, et al.: http://www.cnbc.pt/jpmatos/05.%20Johnson.pdf

Brain trauma also gets the newer & enlarged ranking of "Faking Bad" on the newer versions of the MMPI-II: http://www.deflaw.com/articles/the-mmpi-ii---faking-bad-scale-and-potent...
versus http://brainandspine.titololawoffice.com/2009/10/articles/articles-1/an-...

Books-dot-google often shows near complete sections involving epilepsy in the book "Distinguishing Psychological From Organic Disorders" by Taylor:
http://books.google.com/books?id=0xM77_FOjS8C&pg=PT198&lpg=PT198&dq=schi...

or, for temporal lobes, pp. 121-128, of:
http://books.google.com/books?id=nEPw3WvJlGAC&printsec=frontcover&dq=Rob...
or, for "intrusive":
http://books.google.com/books?id=0xM77_FOjS8C&printsec=frontcover&dq=Rob...

Another practical problem with mental health as a science, is that, while epilepsy has a physical basis, mental disorders are nothing but constructs, often only statistical constructs given labels that are erroneously regarded as having a material physical existence which requires treatment by an "expert". Unfortunately, such an expert has no distinction from being a witch-doctor, as the world famous E. Fuller Torrey clarified in his book "Mind Game: Witch Doctors And Psychiatrists", but retreated into association laurels for schizophrenia marketing by making the constructs into biology or else!!! http://en.wikipedia.org/wiki/E._Fuller_Torrey

Tadzio

P.S.: As if the "Gold Standard EEG" loophole isn't bad enough, it is "almost certain that these were sequel to a simple partial temporal lobe epileptic seizure.... ....The findings of Devinsky et al. (1989), showing HOW SMALL A PROPORTION of simple partial seizures were detected by standard scalp EEG electrodes." From "Fits and Faints" by Stephenson (1991),page 131. Subdural Electrodes work somewhat better, but..... http://www.ncbi.nlm.nih.gov/pubmed/2927677

Re: Your son might have or had

My biggest concern about schizophrenia is the mental health community seems to throw up its hands and give patients "death sentences" by telling them they'll never have productive, successful lives, nor every marry.  It seems like the approach is so doom and gloom instead of truly trying to help people with schizophrenia. 

Re: Your son might have or had

Thank you for your post.  I just want to clarify that I'm not the one avoiding mental health professionals.  My son had a bad experience with a psychiatrist and a side effect to antidepressants when he was a minor, and he has refused mental health treatment ever since.  I live in a state where minors can refuse treatment when they're 13 years old.  I wasn't able to get him any treatment until he turned 18, and my PCP agreed to try to help. 

Time for the specialists!

I agree with the person who mentioned what you are talking about sounding a lot like schizophrenia. I can relate to a lot of what you wrote and I have epilepsy and schizoaffective disorder. It is possible to have both conditions just to let you know.

I wish I would have gotten the psychiatric help I needed in my early 20's instead of waiting and having my whole life implode in my late 20's. I told my mom about different symptoms in college but she got me zero help. My family likes to take the ostrich approach to life.

Speaking from personal experience, the hallucinations start off not so bad and not so invasive and just get worse, more frequent and more invasive. Please get your son into the psychiatrist before the hallucinations totally take over and you can't reason with him anymore.

Your son also needs to see a neurologist, preferably one specializing in epilepsy to see what is going on with the possible seizure activity.

The specialists are there for a reason, use them.

Re: Time for the specialists!

I'm definitely going to talk to the doctor.  I'm aware of the possibility that it's schizophrenia.  I sure hope it's not.  I just feel it's super important to be certain it's not epilepsy before someone just jumps to the conclusion he has schizophrenia. 

Intrusive thoughts do happen with sever anxiety disorders and OCD.  Up until now, that's the diagnosis we've been operating under.  The thoughts get worse when he's under more stress or when depression mixes with his stress.  He never mentioned the intrusive thoughts.  It wasn't until 3 years ago he mentioned that he heard his thoughts in his head his whole life.  They are his thoughts, not someone talking to him.   He didn't tell me until a few months ago about the intrusive thoughts and what specific intrusive thoughts were tormenting him. 

The PCP was already treating his anxiety with Klonopin for the past 3 years.  Son refused antidepressants due to a bad side effects when he was younger.  When he talked to me two months ago, I called the doctor at night and the doctor called a prescription in for Zoloft.  We've been slowly increasing the dosage to avoid bad side effects.  He's at 75mg per day.  200mg is optimum for treating OCD, and we're aiming for as high as he can tolerate.  So far, so good.  He is making progress everyday.  There is an antipsychotic waiting for him at the pharmacy if he ever decides to try it.  So far, he hasn't.

I'm not trying to avoid getting him help.  I've been trying to find out what's wrong with him for years and years.  I'm more afraid of his doctor, who is my doctor, thinking I'm a hypochondriac and not taking my concerns about my son seriously.  He's a really good doctor.  I'm dealing with my own insecurities about feeling like I have him under a microscope and I'm seeing things that aren't there.  I came here for validation that my concerns are justified.  Everyone has done a good job of helping me with that.  I will definitely call the doctor and go see him to share all of this.

Re: Time for the specialists!

Hi Missy Muffet,

Your mention of four wisdom teeth and two molars, plus cerebral leakage, concussion, and various symptoms, reminded me of a very unpleasant situation I had with a doctor involving what hindsight tells me were my other aspects of likely neurocutaneous disorders' signs & symptoms decades ago, in addition to the aspects of epilepsy (which are all difficult to "prove" to a medical "stickler" who happened to firstly identify my unusually large Becker's nevus as a "Becker's nevus" (the first one he had seen outside of textbook cited cases), but when the other aspects proved resistant to his various treatments, he then posed the equivalent of what is now often called "Munchausen by proxy syndrome" (MBPS) (MBPS certainly didn't "cause" my nevus, but once sticky psych labels were applied, that's the direction the storm took involving the mental health community, and another roadblock to more timely medical concerns with neurological impairments and epilepsy in that medical community, which I then quickly left)).

Besides secondary dental signs of of neurocutaneous disorders being a problem in dentistry treatments, dentist have refused me any dental treatments outside of facilities that are ready for direct emergency response because of my neurological impairments being regarded as posing major threats to my life during such otherwise "simple" treatments with epileptics (I often think it's their excuse to avoid probably financially unprofitable patients under less than well funded programs). So, the connections between different doctors have fluctuated between extremes of overly connected to totally disconnected (my last doctor didn't want to know anything about troublesome shagreen patches).

Tadzio

Re: Time for the specialists!

I just saw your post.  This forum design is confusing. 

Funny you mentioned the Munchausen by proxy syndrome.  The ENT implied that when I asked him why there was drainage from his ear after all of the tests came back fine.  He first tried to suggest son was putting water into his own ear.  When I said it wasn't possible, he said sometimes mothers do stuff to their kids.  So I challenged him to test the drainage to see if it was water or cerebral fluid.  I hate doctors.  This ENT is why I'm worried about talking to the PCP.  The ENT made me feel insecure about trying to get to the bottom of what's happening with my son.  I needed to come here to get the courage to push forward. 

Since he was put on antibiotics for sinus infection and tooth abscesses, it seems the ear drainage as stopped.  He has an appointment with a neurosurgeon on Monday regarding the clear discharge from his ear.  I'm wondering if I should still keep that appointment since the drainage has stopped.    

Re: Time for the specialists!

Yes!  See the neurosurgeon!!  That may be your "in" to the neurology department of the hospital.  One neurologist can refer to another neurologist or any other specialty.  He may admit your son to expedite further testing . . . who knows.  This appointment might be a "blessing in disguise" as they say.  Good luck!

Re: Time for the specialists!

Okay.  But I haven't talked to the PCP to forward the patient notes the neurosurgery department asked me to do.  We will just go to the neurosurgeon appointment.  I sure hope it's a blessing in disguise.   

Re: Time for the specialists!

I talked to the PCP tonight over the phone.  He called me from his car.  I shared everything with him.  He said the most important thing is that my son is slowly improving with the current treatment. 

He doesn't seem concerned with the stuff from his childhood.  He said people with temporal lobe epilepsy don't remember the episodes.  So he basically ruled that out.  I think he's wrong based on what everyone here said about their personal experiences with epilepsy. 

He doesn't think it's schizophrenia. He mentioned schizoid disorder as a possibility, saying that is out of his realm meaning he needs to be treated by a psych.  He knows he's the only one son wants treating him so there's a catch 22.  I looked up schizoid disorder after talking to him.  There is nothing remotely like my son in that. 

I told him about the appointment with the neurosurgeon on Monday for the fluid leak out of his ear.  He told me to keep the appointment.  He will send his patient notes. 

 

Re: Time for the specialists!

Keep us posted about the neurosurgeon appointment.  I hope my hunch is right, but I suspect he could be very valuable to you in your pursuit for help for your son.  I am keeping my fingers crossed! 

Don't believe the first neurologist you meet

I had my left amygdala removed last year for seizures (the amygdala is part of the temporal lobe). Throughout my life I saw six different neurologists, all of whom told me I had migraines. It wasn't until I met my neurosurgeon at Yale, Dennis Spencer, that I learned I had been misdiagnosed my whole life and was actually born with epilepsy. While doctor shopping is NOT fun, research the neurologists and neurosurgeons in your area to find a well-renowned physician whose opinion who can put all your faith in.

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Re: Don't believe the first neurologist you meet

I can't even begin to figure out how I can identify the "Dennis Spencer of Pittsburgh, Pennsylvania"  When I called neurology and neurosurgery departments here to find out who was the best doctor to schedule an appointment with for cerebral fluid leaks, even these departments weren't sure.

I'm just feeling overwhelmed right now.  I'll pull myself together and figure it out. 

Dear missy This is beyond

Dear missy

This is beyond yor pcp and your capabilities. He is experiencing severe symptoms and I think he I worries about making you upset nd of course fearful to tell you what really goes on in his head. It must be frightening. I think you should reassure him that you will not freak out and that whatever it is, you will sort it out. As someone else mentioned, there are specialist for this and the doctor that treats sprains and tummy aches won't do anymore. I know you and the pcp mean we'll, but please find your son appropriate help. This can get worse I diagnosed and untreated.

I can relate about being afraid of making that leap and calling specialized care. This is the responsible thing to do. Please know that mental conditions peak in the 20s and that having epilepsy does not exclude a mental condition. What you describe sounds more la schizophrenia as others and I have pointed out, please do not be afraid of talking to a good psychiatrist, you cannot write them all out because a bad experience with one years ago, it hey are good ones out there and they will help your son. He needs help. Help him before the racing thoughts take over him. I send you my best best wishes and best of luck. This must be so hard on you. Take care!

Re: Dear missyThis is beyond

I really wish people could understand that I can't force my son into treatment.  I haven't been legally allowed to do that since he was 13.  He started refusing mental health treatment after a bad experience with antidepressants and a psychiatrist when he was 15.  I was not able to get him to go to ANYONE until he turned 18 and agreed to talk to my PCP.  Then he only agreed to try antianxiety medication and refused antidepressants for 3 years.  Here I am no with him being 21 years old and worst symptoms.  I have to go the PCP route because it's my only hope of getting him to accept going to a specialist.  He will respect the PCP's suggestion to see a neurologist or neurosurgeon.  He will NOT see a psychiatrist.  There's no way, no how I can motivate him. 

Geeze, he desperately needs to have 6 teeth extracted (four wisdom and two molars) and he won't even go to the surgery days scheduled.  He went to initial appointment, but chickened out for the first surgery on Tuesday.  It was rescheduled for tomorrow morning and he won't go then either.  Now I have the uncomfortable problem of my son hogging up valuable surgery time for a doctor twice in the same week.  I doubt they'll reschedule so I'll need to find another oral surgeon.  We'll probably go through this for months before he gets the courage to have his damn teeth removed. 

So, I assure you that I'm not fearful of seeking specialist treatment for my son.  I'd fly him to Yale if I thought he would go. 

Re: Wondering if son has temporal lobe epilepsy

Hi, Missy

I hope you are hanging in there okay.  There are a lot of posts here, with a lot of concerned readers!  I just wanted to add to all this to not forget to keep the lines of communication open between you and your son.  He seems to see you as his confidente, he trusts you.  He has a lot of frightening things going on but he is talking, at least to you.   You are his life-line; above all else, keep that connection!  Best, best wishes to you!

Re: Wondering if son has temporal lobe epilepsy

Thank you.  I do keep the lines of communication open.  I know I'm the only person he confides in.  I have to be careful.  I have to wait for him to share. He isn't receptive if I broach subjects.  I either ruined a good day by brining something up or it makes him wonder if I'm worried about something he isn't worried about.

Example. 

This morning, I talked to him about downloading some of the games he wants off of the internet because I'm cancelling the internet service to the house.  He has a fear of the internet, phones, etc.  As a result, he will only play games on his computer if his father or I sit in the room with him.  By getting rid of the internet, he can have some more freedom in the day without needing constant supervision. 

This conversation lead me to comment that he seems to be improving.  He agreed and started to list off that the intrusive thoughts are subsiding and he's getting better at sending them away instead of obsessing about them and getting upset.  He says he still has his worries but his worries are subsiding.  He said that he has periods of time when he isn't worrying about a thing---for like an evening when he was with his father and suddenly a worry hopped into his head.  In the past, he could go a month without a worry and then he'd find something to worry about. 

From what I understand, he has worries (worries about everything), racing thoughts (which he actually likes because they help him be creative) and intrusive thoughts (which horrify him).  He says the worst is when the intrusive thoughts start racing.  I think that's where he was at when he came to me for help two months ago.  The antidepressants help the racing thoughts.  He's dealing with worries (which are subsiding) and intrusive thoughts (which seem to be subsiding too.

I asked him if he has experienced anymore deja vu or the opposite of deja vu since he had a few of those last week (at the same time period as the day he had an episode in the car at night due to the oncoming headlights).  He said he hasn't had any deja vu or feeling the opposite of deja vu.  He said the waking up and nothing feeling familiar is when he takes benedryl.  That's his opinion on that matter.  So I mentioned the house/field in the context of deja vu in the sense of trying to say I didn't think that was deja vu or premonition but just a coincidence. 

This is when he got worried.  Why am I bringing that up?  Am I worried about that?  I said no, I was just trying to say I thought it was a coincidence.  He said he didn't bring it up so why did I.  He then said it was nothing that ever bothered him and still doesn't bother him.  He says it's just imagining things while daydreaming and sometimes those things end up happening.  He equated it to being no different than my thinking it would be nice if people had portable phones to make phone calls on the bus back in the early 80s, and then a month later everyone was walking around with cell phones.  So it seems he is now describing what I called visual hallucination as "imagining while daydreaming." 

We got off of that discussion because I wasn't getting anywhere.  I couldn't ask him outright if they were complete changes of scenery like it seemed he was saying the other day. 

He shared he didn't sleep well because he kept waking up drenching wet.  He has always been a child that sweated at night.  His whole life he would drench the bed.  If we picked him up to move him, he was always soaked.  I'm not sure if this is relevant to his problems or not but I'm noting it in the diary everyone encouraged me to start.

I called the doctor's office to schedule an appointment to see him by myself.  Still waiting for the receptionist to call me back. 

Re: Wondering if son has temporal lobe epilepsy

It is incredibly difficult to get someone to do something they don't want to do, or are afraid to do.  You mentioned he took anti-anxiety medication at some point - does he still?  While this sort of medication is nothing to play around with, would your PCP consider increasing the dose without seeing your son (since he may not go anyway).  If he is, and your son is willing to take it (big "ifs", I know), you may be able to determine if in fact anxiety is contributing to your son's issues.  If the medication works to even a small degree, it may put him in a better frame of mind to deal with his other issues and help him understand the need to seek help and be willing to attend appointments.  I'm no expert, believe me, but just what came to mind after reading your latest post. 

Another thought: is there are college or university near you, with a neurology and/or psychology department?  Any doors you can think of knocking on there may be a key to helping your son as well.  Doctors in hospitals are bound by rules of confidentiality and various codes of ethics (ie. boiling down to meaning some won't speak to you unless your son is present) but a university professor or researcher typically is not, and someone in this setting might be more willing to listen as well as speak more freely and openly with you about your son, and offer advice.

Re: Wondering if son has temporal lobe epilepsy

Yes, the doctor will increase doses and add medications over the phone.  He has been on Klonopin for the past 3+ years.  His dosage was increased to 1mg twice a day when he started the antidepressant medication two months ago.  He's up to 2mg per day of Klonopin and 75mg of Zoloft.  We're still increasing the Zoloft medication by 12.5mg per week.  In two weeks, he'll be up to 100mg of Zoloft.  There is a prescription for a low dose antipsychotic waiting for him at the pharmacy, but my son hasn't decided to try that yet. 

We have quite a few teaching hospitals and universities in Pittsburgh.  The universities are a good idea.  I'll wait until I talk to the PCP before going that route.  My appointment with the PCP isn't until the 18th, 2 hours prior to my son's appointment on the same day.  I'll call his nurse to see if I can talk to him on the phone about all of this.  

I wanted to add that my son will go to the PCP.  He trusts the PCP.  

Re: Wondering if son has temporal lobe epilepsy

Ok, so he won't go to specialized cared, however, please keep in mind that he is unable to make health decision for himself as his judgement is impaired. You cannot leave it up to him to get appropriate help because he can't under his current state. Please don"t wait until something bad happens to realize this. There are ways to get him help, including seeking conservatorship of his health care decisions. This is standard procedure when you care for people that cannot make such decisions for themselves. Just wanted to let you know. Best of luck

Re: Wondering if son has temporal lobe epilepsy

No doctor in the world would say his judgement is impaired.  It's not easy to legally force someone to treat themselves.  Not to mention he would lose the trust of the only person he trusts.  Not a good plan. 

Re: Wondering if son has temporal lobe epilepsy

Ok, so he won't go to specialized cared, however, please keep in mind that he is unable to make health decision for himself as his judgement is impaired. You cannot leave it up to him to get appropriate help because he can't under his current state. Please don"t wait until something bad happens to realize this. There are ways to get him help, including seeking conservatorship of his health care decisions. This is standard procedure when you care for people that cannot make such decisions for themselves. Just wanted to let you know. Best of luck

UPDATE: We went to the neurosurgeon's office this morning....

My husband joined us for the appointment.

My son bailed out while we were in the waiting room and refused to see the doctor.

I was ready to move out of the house when we got home. 

My husband fully supported my leaving for a few months. 

My son begged me to stay and promises to go back to the neurosurgeon. 

But now he'll be going in there after making a fool of himself so I'm not sure what use it will be.

I'm just super tired of all of this.  I can't save someone who refuses to save himself. 

Thank you for all of your advice and encouragement.  I'm sorry it didn't work out the way we all hoped. 

Re: UPDATE: We went to the neurosurgeon's office

Hi, Missy - so sorry it didn't work out the way you'd hoped.  If your son is willing to go back, I'd say go for it.  You found his weak point (ie. him not having you around) and although it may sound cruel, I'd say use his weak point to your advantage if it means another chance at getting him the help he needs.  I work in a doctor's office, and they get people who back out at the last minute from time to time, usually due to intense fear.  The doctors respect this, and are more than willing to see the patient again.   If he doesn't go back, follow through on your plan to move out . . . even if it is just for a few days.  Sounds like you could use a well-deserved a break! 

Re: UPDATE: We went to the neurosurgeon's office

Thanks for your advice.  It was so difficult.  We were sitting in the waiting room.  I was trying to fill out the patient forums and asked him when the drainage started.  He gave me a non-answer and went on about not needing to be there.  He just intensified and moved on to attacking me and said I needed to get a life (I wish I could!) and a bunch of other things.  I started the cry.  Not loud, just a couple of tears.  It wasn't like there was a scene.  We were alone.  My husband said quietly, "Don't cry."  My son continued to say nasty things to me, and I calmly gave my husband the parking ticket and said I would wait in the car.  They were at the car in 5 minutes.  My son told the receptionist he couldn't see the doctor because of "family problems."  Great.

We got home and I started to pack.  My husband was trying to brainstorm with me about where I will go.  He suggested that I contact a friend whose boyfriend is waiting for his lease to run out, suggesting I sublet it from him for the last two months.  I told him I didn't think I wanted to stay in the Pittsburgh area---that I needed to get far away but I was in no frame of mind to have the slightest idea where I wanted to go.  My husband said he knew me and that I would spend the entire time away worrying about our son.  I didn't know if I wanted a cabin in the woods, a small town with cafes, or a big city.  I couldn't think.  I called my girlfriend and planned to stay with her for a few days so I could have time to calm down and figure out where I wanted to go. 

In the meantime, my husband talked to my son who told him that he would go to the neurosurgeon after he got his teeth removed.  One of the things I told my son was that I was tired of his bailing on appointments, often all the way when we got to the office.  I've never had panic attacks in my life until this crap happens.  Anyways, I loaded the car and was saying goodbye.  My son said, "Don't go."  And I wanted to go so badly.  I told him that he was my world for two decades and I did love him very much but I needed a break.  My husband reiterated the importance of my needing a break.  I finally said I would stay but I needed to visit my friend for the day.  My girlfriend lives in another county.  I left him for 6 hours and spent 4 hours visiting with my girlfriend.  He hadn't been alone without me or my husband for months so this was a big deal. 

My girlfriend says don't unpack my car.  But I'm going to repack because half the things I packed weren't things I wanted because laundry wasn't done.  I can take this time to formulate a plan of exactly where I will go if I need to leave. 

So, my plan is this.  My son is getting his teeth removed on Thursday.  I will have him call the neurosurgeon's office himself today or tomorrow to reschedule for when he will be recovered from the dental surgery.  He needs to start taking personal responsibility for the appointments.  It seems he finally understands the importance of this appointment with the neurosurgeon. 

Re: UPDATE: We went to the neurosurgeon's office

Taking control of the appointments will be a big step for him - congratulations on that!  Good luck to him and you on Thursday - the dental procedure isn't fun :(  Keep us posted on how he does with the dental appt. and his follow-through to call the neurosurgeon's office.

Re: Wondering if son has temporal lobe epilepsy

Thank you for the update. I am glad that you are sticking to your guns. Yes, it is time that he takes responsibility, because yes, he still can. This can be so hard on the family and particularly you that are his primary care taker. Don't go home to do laundry or pack cuter things, you know it is an excuse to come back. I'm sure your hubby can handle for a day.

Anyway, I had wrote before about a friend of mine whose daughter has a mental illness. I think she is bipolar and has op positional defiant disorder. Her mom is always excusing her and saving her from the several trouble she has ran to, but she is an adult and as you say, she cant force her. Anyway, I told my friend that she was enabling her by always giving into her. and she agreed. Example. She has gotten in trouble for shoplifting and I cant remember what else, and she got comminty service. She refuses to go t the cmmunity service and his psychiatrist appointments which are now, court ordered. My friend cannot even work anymore and the attorney fees and her excusing her because of her illness have really broke down her spirit. I think she realizes now that is best she faces the music once and for all of her own actions bacuse she cannot do it any longer. So as you can see, you are not alone. Her daughter says horribly things to her and they live in the same house. It is a bad situation but now she is going to change the strategy because the "saving her" strategy has only enable her bad behavior all of these years. I did not ended posting that before because you seemed upset and did not wanted to upset you any further. Seing specialized care is an important step toward recovery and there are medicines that can help ease the worries (paranoia)and live a better life for everyone involved. You are doing a FINE job

The point of the story, is t tell you that you are not alone and we all understand how hard this is on you and your husband. I think you realize now that changing strategies and allowing him to see that there are consequences of his actions helps a lot.

I hope you take a very deserved break, recharge batteries, regroup and continue this journey. I hope things get better, and I know they will now! Best wishes!

Ear wax melts during a fever

I am very new to this forum (today, in fact) and I've come here looking for information for my daughter, newly diagnosed with epilepsy. I read your post, and most of the comments to it. One thing - one time I saw fluid leaking out of my daughter's ear and freaked out, thinking it was cerebrospinal fluid. She had a fever - it was built-up ear was melting and coming out. When I saw that you said your son had a sinus infection and teeth problems I thought maybe it's the same for him.

After all, leaking CSF would be a huge crisis.

Good look with everything else - just wanted to share my experience on the one simpler thing.