Please do not use the words TLE with mental illness. A psychiatrist will not treat your Neurological illness which the epileptologists can. The shrink treats psychiatric illneses. They are not the same thing. It is too easy to dump neuro problems in the psychiatric basket because they can't see it and really are not educated well enough in epilepsy to be able to tell the difference. Psychiatrists and most neurologists do not have all the tools available to treat it properly either. You wouldn't go to a General Surgeon for an operation on your heart nor would you go to a neurosurgeon who specializes in spinal cord injury and peripheral nerves for an operation on your brain. It has to be the doc with the right training. I have given you the best advice I know. Do what you have to to get to a comprehensive epilepsy center which as I wrote is to get your PCP to do the referral They also are the ones to deal with the insurance co to get them to cover it, not you. They paid for all of mine with the right referrals etc, so if the right people do it and give the right information, they prob will cover yours too. You do need your PCP to have a reason for the referral and you have that from three docs. I would be surprised if the ins co did ot pay for it. Docs office does that part. Good luck with that. You do seem to be having seizues, but until those are dealt with, your life should not change much. They get worse if not stopped, so it is important to deal with them specifically and stop them. If the psychiatrist and another doc has told you that they think you are having seizures, I'd be headed to fix hat problem with the right doc, epileptologist. I did not have any of this information for the majority of my life. It would have had a huge effect on my quality of life had I had this information years ago. It is now up to you. Good luck and let us know your progress. Tattoo

These are Level 4 Epilepsy Centers in your area. You can go to www.NAEC.org to see the criteria used for them to be Level 4 members. Cleveland Clinic does good work. I went to MEdical College of Georgia. Other good places too. You have to check them out.

Northwestern Univ. Comprehensive Epilepsy Center
Northwestern Memorial Hospital Galter Pavilion 7-104
675 North St. Clair
Chicago, IL 60611 (312) 926-1673
Level 4 Epilepsy Center Med Dir: Stephan Schuele, M.D., M.P.H.
Admin Dir: Jeanne Toguri, RN, CNRN
Map


Loyola Comprehensive Epilepsy Program
Loyola University Medical Center 2160 South 1st Avenue
Maywood, IL 60153 (708) 216-9000
Level 4 Epilepsy Center Med Dir: Jorge Asconape M.D.
Admin Dir: Renata Glowka
Map

Christopher Randolph, Ph.D., Julie Manas

The University of Chicago Adult Epilepsy Center
The University of Chicago Medical Center 5841 South Maryland Avenue
Mail Code 2030
Chicago, IL 60637 (773) 834-4703
Level 4 Epilepsy Center Med Dir: John S. Ebersole M.D.
CoMed Dir: James X. Tao M.D. Ph.D.
Admin Dir: Susan Hawes
Map


Rush Epilepsy Center
Rush University Medical Center 1653 West Congress Parkway
Chicago, IL 60612 (312) 942-5939
Level 4 Epilesy Center Med Dir: Michael C. Smith M.D.
Map


Indiana University Comprehensive Epilepsy Program
Indiana University Hospital 550 North University Boulevard
UH Room 1711
Indianapolis, IN 46202 (317) 274-4974
Level 4 Epilepsy Center Med Dir: Vicenta Salanova M.D.

http://indianaepilepsyservices.iusm....ctivities.html Tattoo

Wow thank you for the epileptologist links, I'm sure they will come in handy.

I agree with your statement that neurologists and psychiatrists aren't particularly the person to see for such a nuanced neurological disorder as epilepsy.

I still intend on keeping my appointment at the University of Chicago, if the doctor strongly believes TLE, I will contact an epileptologist, which I emailed back in September.
My psychiatrist wise to the fact that he might be able to diagnose my mood disorder and auras as TLE, but I believe an epileptologist will have the proper tools to more clearly understand and treat my problems.

Again I will keep you posted on how my visit goes with the neuropsychologist. From what you and others say seeing an Epileptologist is key to recovery so I will strongly discuss this with my doctor.
I'm glad that I'm not alone and I'm hopeful.

Thank you,
Harry

I went to the Neuropsych today at U of Chicago hooray. I was there early, and the weather was nice today somehow nice weather can really bring you up even though things feel dreadful.
I meet up with two doctors, one is doing his residency a full fledged albeit young psychiatrist, which is good with a background in neurology.
The second doctor is the head of the neuropsychiatry unit at the University and I believe might be able to come to a sound diagnosis.
As for Temporal Lobe (simple partials) are concerned, they didn't get my med records from my old neurologist after two months! So that was slightly frustrating.
I was prescribed Geodon, not even sure if I can afford it. In a sense I don't feel as though we really got too far, they really wanted to get the med records and I really wanted the doctors to receive them. Although I don't believe the MRI, sleep study, EEGs, EMG / AER will reveal anything new although one doctor might evaluate the data differently than the other.
I really hope I'm in the right doctors office, I feel like I've been going to doctors offices and receiving little in the way of resolving my issues.
My next big hurtle is buying the geodon and then seeing what it does, I have an idea seeing I've been on at least 25-30 different meds in the past.
If they confirm the diagnosis of TLE I will definately seek out a epileptologists. So getting better is taking a long while, over a decade, but I'll wait it out. Next visit is in May and hopefully they'll have my med records to see if seeing a neurologist or epileptologist is the correct route.

Hi Harry,
I'm glad you saw a Neuropsych today but I don't like how the Dr. put you on Geodon this med isn't for seizures at all it's used for people who are schezo. If I were you I would see another Dr. I don't think this Dr. realizes that depression, being emotional, as well as seeing colors sometimes is all part of epilepsy and putting you on this med will only make you more depressed. Don't get me wrong I'm not saying that you are having mental problems at all it's just that it bugs me how this neuropsych is putting you on a drug that will not control your seizures at all and could mess things up for you in the long run. I know if I were in your place I would get a second opinion. Here's wishing you well and May God Bless You!

Sue

What reason did they give you for putting you on Geodon? As Sue said, that is a psych only med and not at all for seizures. It is used for schizophrenia. There are black box warnings with it. One is Dementia-Related psychosis. It has side effects that command very careful use. Seizures is also a side effects so you would not know if a seizures is due to the Geodon or to a real diagnosis of eilepsy. I can't believe they chose that one! If my docs were in the tiniest way associated with psych, I would not at all feel safe. It's no different that going to the gastro doc for what seems lke a bad case of GERD when the symptoms you are having are oiginating from your heart except the Gastro doc would refer you to the right doc, the cardiologist. I have to ask why you are depending on the psych docs to give you a very specific neuro diagnosis that only those highly trained and experienced in that one area really can. These are the same docs who can offer you the best treatment to go with the diagnosis. These psych docs know psych, and that is not epilepsy. The only ones who really know epilepsy are the epileptologists. That is what you have to decide on. In our world those two do not ever need to cross directly. Geodon will not stop seizures. They will continue to get worse and you will have to assume some responsibiity for that because you have the information and are making a choice. A good epileptologist and a therapist may be helpful. That was what helped me. It is your decision. I wish you well. Tattoo

Thank you for your replies it means a lot.

The Neuropsych asked me "What do you think is wrong?" and I told him that I'm not one to diagnose myself but I believe there is a good chance that I have Temporal Lobe Epilepsy. I should've asked him what do you think it is?

They didn't want to make any judgements as to what my diagnosis is until they received the medical records from my neurologist, who was seeking out epilepsy. The neurologist failed to find any evidence at all except for my oral accounts of auras and dizzy spells.
I may be at the wrong doctor, I believed since a neuropsych deals with psychiatric symptoms due to neurological reasons that he would be the best fit for me. As for the Geodon, I agree not the drug I want to be on, I've been on a few antipsychotics and nothing seemed to work. Plus if my insurance won't cover it, it's going to be $500!! Why don't doctors realize this before they deside to prescribe!
So I will head your advice, luckily the medical records came in as we were visiting and he and the head neuropsych will look over the neuro records. If they find nothing, and don't suspect TLE should I still see the epileptologist? If however they do suspect TLE partial complex or simple partials I will most definately seek out an epileptologist. Neurology / epileptology and psychiatry are all in the same building, so if I need to be referred or refer myself I'll be in the same facility with all records available to all doctors.

After seeing psyhiatrists for eleven years and not receiving any real help, I believe the epileptologist may be the right move. I don't want to spend another decade feeling terrible, sleeping all the time and feeling like a complete zombie. I feel like it still is 2000 not 2010.
I'll keep you updated and I'll stay strong. Thank you.

I'm writing this today, mainly to vent a little bit of the intense pain I've been feeling for the last week. I have headaches, which reside only on the left side of my head, and a lot of dizziness. I think some of my current issues are in part due to Anafrinil for OCD. I was given Anafrinil to calm down some of my OCD intrusive thoughts, but my OCD-like thoughts are only small beans compared to the nauseating pain in my head. My doctor strongly suspects partial complex seizures, but at the moment I'm not being treated for this.
I suspect I might need some acute care, addressing both my neurological and psychological problems. Having this pain is really difficult, one day it seems I'm going to endure the problems until I can breath again, and focus on coping with the pain. Other days I just want out, meaning I get an often regrettable feeling that I just want to die. In those moments my mind desperately is seeking out methods to kill myself, although I really don't want to it's just so intense and it has been that way since 1993 I see no way out short of being miserable everyday. If I am to save my own life I know deep inside that I need to know what is going on with me, if it is TLE I'm all about doing everything I can under the sun to bring back coherence to my mind. I'm afraid of both the disease and of hurting myself, I really don't want to, but it crosses my mind more and more in the last six years.
I have an appointment with my psychiatrist and possible neurologist next week, I'm going to scream at the top of my lungs please help, I don't want to get into a bad spot and do something irrational, I'll stay here at the clinic please just give me relief. I'm reaching out here on Neurotalk because my psychiatric clinic is tired of seeing my face they believe if I'm not in immediate danger to myself I should just make an appointment and just get over it. What they don't know is how intense the headaches are and the confusion / forced thinking I feel. It seems at these junctures my person is at the total mercy of whatever disorder I'm suffering. I know others out there have TLE and some have had psychotic episodes. I will try to see an epileptologist and make strong mention of what my psychiatrist has concluded. I don't mean to ramble on, I'm just a bit out of sorts at the moment.

Hi Harry,
It sounds like your headaches could be part of the epilepsy I used to get them all the time after a sz. or if there is a low pressure in the weather right before it would rain or snow I would get headaches. In regards to feeling like you want to end your life, this could very well be a side effect from some of your sz. med (AED's) that you are taking. It's been proven by the FDA that lamictal and many other AED's will cause a person to feel suicidal but they never go through with it. I know since I've been on keppra I've had those side effects but since I cut my dosage back I don't get that feeling anymore.
I personally think it's a smart move to get away from the psych because often they don't understand epilepsy and how the extra electrical activity going on in our brain can cause chemical imbalances and trigger sz. make a person more depressed, and moody. I've learned that you just have to take it one day at a time and to be thankful for all that you have.
From everything I've read it sounds like you are having complex partial sz. and I've had that type of sz. for 36 of the 38 yrs. I've had epilepsy. This type of sz. causes a person to see different colors that are not really there, get a nervous feeling in the stomach, start to hear one word repeated over and over, as well as blanking out and wandering around not even realizing what's going on but the person will still talk to others during the sz. This is what happens to me each time I have a complex partial sz. If you have any of these symptoms tighten up the muscles in your body and make your hands into tight fists by doing this you can often stop the sz. I learned about this back in the 1970's when I first began to have this type of sz. Play it smart and go to an Epilepsy Center and see a team of Drs. that work together, an Epileptologist, neuropsychologist, and if possible a neurosurgeon they will all work together to find out what's going on and they will be of a great help to you. I wish you the best of luck and May God Bless You!

Sue

Hi Sue,

I'll write you on this thread, as it seems a good way to know where I left off kind of like a blog. Bad news turned into positive news. This week my symptoms became inflamed and made me feel simply hopeless and incredibly angry, my Mother took me to the psych in the morning, needless to say I was in a pathetic shape. I don't like admitting it, but yes I was suicidal and in the heat of the moment stupid things can happen. I told the crisis doctor what has been going on with me, and she said very confidently. "You're having seizures, you have epilepsy, did anybody tell you that before?" I felt I was dreaming her saying those words, because she seemed so confident and she said as much. It was like an about face, I went from feeling perhaps TLE complex partials aren't happening to and therapists babbling on about being a hypochondriac to having all the needles pointing to epilepsy. Wednesday through Friday I didn't know what was going on and felt I could die and it would end the pain, to being validated. I went out to the beach and despite having pain on the left side of my head and a little trouble thinking due to the Topamax, I had a good time. Thanks, for your help Sue. I'm going to seek out an epileptologist and I know a good neuropsychologist in the area.

Thanks,

Harry