in need of relief,
 

Well, I feel as though I should share my situation so that perhaps some people out there have any suggestions.

At the moment I feel incredibly confused, and have quite a bit of pain, which seems to reside on the left side of my head. My emotions at the moment are very desperate and I feel I just need relief from both the psychiatric / cognitive symptoms and the pain.
In September I was tentatively diagnosed with temporal lobe epilepsy, yet further tests with my neurologist seem to say otherwise. I feel as though if I had the proper diagnosis it would be immensely better for diagnosis rather than shooting in the dark. I want desperately to feel better, I feel as though I am sinking in my own neurological mess. Financially things have been desperate for close to a year, I applied for SSI yet I was turned down for the 4th time. I'm curious as to what the proper diagnosis is, but more than that I really really need some relief and stability I haven't had that in my life for a long time, I've been battling this mess for years and I don't know what to do now, I cannot find a job, and I have terrible trouble staying coherent, things have been dreadful.
If in fact I do have TLE how common are psychiatric symptoms with epilepsy? My deja vu spells only occur once in a great while yet the so called interictal or confused states are ever present. If anybody out there experiences strong cognitive or psychiatric symptoms with TLE, what treatment has worked best for you? I don't care if my or the doctor's assumptions of TLE are correct, I simply want to feel some relief.
Thank you for being patient through my slight ranting.

Hi Morganomics,
I have had TLE for 38 yrs. and if the right temporal lobe is being affected it can cause great emotional problems. You need to see a neuropsychologist who can do some tests on you and tell you what is going on. They can also tell you what area(s) of your brain is being affected. I have found that taking vitamin B12 1000 mcg. a day has been a great help to me. I also had brain surgery to help reduce my seizures back in 1994. To get the best help you should go to an Epilepsy Center and see an Epileptologist I've gotten the most help from them compared to a neurologist and I'm on fewer AED's (seizure meds.)
Another thing that helped me a lot is to keep busy so I didn't have so much free time on my hands. I'm sure you could get a job working in public school as a teacher aide or teacher assistant. I've been doing this type of job for 25 yrs. and you get good benefits. I found seeing a regular psychitrist just messed me up more. You should also have a WADA test done to pinpoint the exact cause and location of your seizures. Just try and think positive and remember there are others out in the world a lot worse off than us. Here's wishing you well and May God Bless You!

Sue

Thank you for your response. I'm scheduled to see the neuropsyciatrist The second week of April, and I am hopeful. One of the more stressful issues I deal with is the wait until I see the doctor again, and unfortunately nothing really seems to help.

If in fact I do have TLE it is the daily mood, personality, and cognitive issues that really need to be addressed, since they make it difficult to work and maintain relationships. I have a BA in fine arts so I can legally substitute teach in Indiana.

If you don't mind I'd like to share with you my symptoms and perhaps you might say "ah" I've experienced that.

I have a headache as well as a strange "pushing / dizzy" feeling on the left side of my head and only the left side all the time.
My thoughts seem to be forced like there is a painful forceful fearful force making it very difficult to think clearly and feel my sense of self clearly.
My thoughts feel frozen and I cannot act on my intuition, and soon enough I feel mentally arrested.

I also have depression and anxiety, which make being motivated difficult although I usually want to sleep the whole day to escape the dizzy confused state. I feel as though neurologically the depression and the possible TLE physical symptoms are related and are part of the same thing.

My body feels as though I always need sleep and I'm always trying to find a place or time to sleep.

Those are the main symptoms. I've been on a lot of psychiatric medications but only a few anti-epileptic meds including Depakote and Lamictal.

I'll start taking B12 vitamins as well as flaxseed oil.

My auras are as many describe, I get an overwhelming feeling of deja vu and in my mind I see images of shapes and colors that seem to have a deep meaning and that they've always existed and I am seeing them again.
I am left-handed and majored in art in College, simply because it was the one major I could excel at while feeling terrible. I draw, sculpt and build all the time. I suspect a little Geschwind's personality.

I wonder though if TLE is the right diagnosis as I don't want to have many unnecessary tests if I don't need or steer my doctor by biasing my symptoms.

If in fact the neuropsychiatrist I'm seeing confirms the diagnosis of TLE I will consult an epileptologist.
I'm just very frightened at the moment at how intense my symptoms can be with how long I've experienced them.

Thank you very much for replying to my post and perhaps you could give me some information you feel is necessary.

Thanks,

Harry

**Harry**
 

Hi Harry,

Like Sue, I've had surgery as well. Mine was a left temporal lobectomy. They did do WADA test prior to surgery & discovered that my dominant language area is in the LTL as suspected (since I'm right-handed). It is a little tricky to operate on the area with the dominant language side. You being left handed, chances are that your language area is in the right temporal lobe.

The temporal lobe is greatly involved in our emotional world. Of course, all 4 lobes (on both sides of our brain) are interconnected, so vision and hearing can often be affected during a complex partial seizure. During a complex partial, we lose awareness of where we are, what is happening around us, etc. We may look awake and have an odd expression (commonly: intense fear, questioning) upon our faces ~ but we are unaware & vulnerable. Instinct does survive throughout the complex partial, thankfully, which is why some people are known to hit or swipe at people ~ when they feel threatened by others' behavior during the c.p.

Anyway...after my WADA test, doctors still decided to go forward with interictal surgery. Surgery in which grid and depth electrodes were placed inside of my brain. Waited a night, and seizures kicked in. Surgeons were able to see precisely where my seizure were originating and from there, determine whether or not the area could be removed. It was safe, in their opinion, and I had surgery. A big effect of my surgery was that I became more emotional. Emotions were intense ~ both up and down. Doctors theorized the cause due to my amgydala (the part that encourages us to eat, have sex, play, fight, run..) had the ability to be much more active than before (since my hippocampus wasn't stealing all of the LTL activity).

Oh, before I forget, epi's always consult with neuropsychologists for testing. Both before and after surgery. This is done to see if you can handle the surgery emotionally, intellectually (your IQ has to be at least "normal" or beyond normal- "gifted"), and then the testing after surgery determines what areas have been affected & to what extent.

I have suffered from depression most of my life, which was recognized during my tests. They (and I) hoped that control over my seizures would improve that area. My memory always sucked too. Big time! My memory is worse now, but it isn't continuing to steadily decline (like it would have had I simply continued with meds that weren't working). My emotional world has fallen apart, leading to both good and bad things. Bad: my 15-year marriage is over; my depression worsened to severe; BPD became more obvious. Good: I've started to accept myself ~ good and bad. I'm not there all of the way, but I have finally started to see what I've held back for 35 years!! Oh, and I finally got migraine medicine to help me through the intense migraines I've had for many years.

And you thought that your post was long! LOL Sorry! As you can see, it's all very complex. It is common for people with TLE to suffer emotional illnesses. It sucks, yes, but that's just the way it is. The positive side is that many people have TLE & lots of people have depression (as well as other mental illnesses). You aren't alone. Believe me ~ I seriously thought that I was completely alone for many years. No one in my "real world" could relate to what I was going through. It was hard! But, on the positive side, it helped me let go of who I really wasn't. I now live at an apartment building devoted to disabled people. All kinds of disabilities. I don't have to feel like I don't fit in, it's a perfectly comfortable fit for me. That's a huge positive for me!

Very best wishes to you ~ I hope that my post made sense to you & helps in some way. Take care!
Shez

Thanks Shez
 

Thank you Shez and Sue for your information.

I see the neuropsychiatrist on the 13th of April so, at that point depending on the diagnosis, I will try to see what I should do to move forward. I'm a bit anxious as to what they diagnose or suggest. It seems to be that if they say TLE has not been what I have been experiencing that I'll have many more questions and remain and square one.

You are right Shez TLE and how manifests itself from person to person differs greatly and so it seems a clear stereotype of symptoms is hard to find, which I'm guessing makes diagnosing difficult.

It hit 80 degrees this past thursday friday, for people with depressing or bipolar it seems the weather can do so much to bring one out of a bad spell.

The biggest things on my mind are managing my finances and trying to create a feasible treatment plan. I started a small furniture business that is bringing in a very marginal amount of money, but I really need something semi stable, although working is very difficult with the way I'm feeling.
So I'll just continue as best I can with your suggestions in mind.
That was quite interesting about handedness and language centers of the brain. I'll post a reply about my day at the doctors this coming week, hopefully we come to a good diagnosis and treatment that is my obsession and one day I hope to have other much more pleasant matters in my head.

Thanks,
Harry

What Neuro meds have you tried, not psych meds but seizure meds? Depression and other misdiagnosed psych symptoms can go along with TLE, but if the seizures are congrolled/stopped, those pther syptoms can resolve hopefully. I would really encourage you to ask/tell your Primary Care Provider ( Not the neuros) to refer you to an Epilpetologist at a Comprehensve Epilepsy Center They are usually found at major medical centers. what area are yo in? That epleptologist can gfive you a Second opinion and maybe finally diagnose you properly as well as give you a treatment plan for your case. We all go through this waste of time with neuros who do not have all the tools needed to treat and diagnose is. They treat all neuro disorders, but we need someone with expertise in this illness. The Epileptologist is that doc. He/ She will have a certificate on the wall saying she/he has completed a Fellowship in Epilepsy or Neurophysiology. Thas is on top of their neuro Residency. Getting to this doc can make a difference in your life. I called those dizzy feelings "funny feelings". I also had deja vu too which are Simple Partial seizures. Do you ever feel lke you know the things in your home are yours, but it feels lke you are in some else's house? Have you ever lost consciousness even though you still were moving around etc? Ever lost bladder control? Mine progressed to Complex Partials where consciousness is lost even though still seemig to be outwardly awake etc. Many here have as well.
It is not at all a pleasant place where you are, and many of us have been there. I have. I know the frustration and despair you feel! Please tell your PCP to refer you to a Comprehensive Epilepsy Center. He will get a report of each visit because of the referral. Do not get the neuro to do this. He will NOT want to as he will lose a patient. It is your life however and is not about the doc. I had surgery 11.5 years ago for my Mesial Temporal Sclerosis or TLE. Hope this helps. I also added peanuts to my daily diet due to the natural progesterone that is associated with raising the seizure threshold. I also take low dose of Keppra with Tranzene as needed to decrease anxiety and add some antiseizure effects.Tattoo

Thanks for the advice
 

Currently I'm not on any meds, although I was taking Prozac and Librium, recently prescribed Perphenazine, yet no change in symptoms. I've taken depakote, lamictal, topomax and tegretol, I was on a therapeutic dose for both depakote and tegretol but not the topomax or lamictal. I had a terrible rash from the lamictal, which is sad because I thought it might have some beneficial use.

I live in Northwest Indiana near Chicago, which I can see the skyline from our beach and its quite beautiful. I've been seeing a psychiatrist for eleven years, switching every few years when I'm fed up with receiving no results. I know what I feel is more than just simple depression or anxiety and I want to be in control of my life, because I feel that I never have been.

I've seen three neurologist, all seem like empirical robots like they can't read between the lines and consider all of the symptoms as being from the same genesis. Thus one neurologist diagnosed me with narcolepsy, and migraines, while others simply advice me to see psychiatrists.
Luckily I have one very interesting psychiatrist who put all my symptoms together and diagnosed me with complex partial seizures or temporal lobe epilepsy. That diagnosis had been running through my head for at least three years, and my previous psychiatrist had suspected the same in 2007-2008. Unfortunately my current psychiatrist won't give me the AED only antipsychotics, which leave me even worse.

My Deja-Vu auras possible seizures occur at night. My heart begins to race and I start to get a funny feeling of euphoria, I feel like I'm floating with euphoria, and begin to see shapes and colors in my head that I feel I've always known as if they were there at my birth and I'm remembering my birth almost as if we all see god at birth and soon lose the amazing feeling it is to know a cosmic truth. I can calm down the event by getting up and walking. I've also had sleep paralysis with funny / frightening experiences, the one that stands out in my mind is the time I saw my mother how she was in the mid 70's before my birth with classic 90's gray aliens tapping at my window.

On New Years day 2000 I fell unconscious and had the strongest aura of my life. I felt as if I was having a head rush and fell to the floor. I was conscious or at least an altered form of consciousness trying to move past the strange deja vu experience along with strange perceptions of my movement like my limbs were moving quickly even though they were frozen.

I also have desperate daytime confusion and a desperate need for sleep, which I have had since a teen.

I feel like my thoughts are forced, its hard to make smart detailed decisions my thoughts are painfully forced and I feel I am sloppy emotionally, intellectually and motorwise. Currently I feel the left hemisphere of my head is in physical pain and feel my thoughts are distinctly unmistakably being forced from the left side. I've looked up forced thinking on google and have found a definition which matches my definition of the experience, but I am not sure if they are the same. I also have intrusive ocd like thoughts and have a love for art and design, which may be signs of Geschwind's personality.

My insurance won't cover my visits to the University of Chicago, which are quite expensive, but I've made and kept the first appointment anyways a terrible thing to do I know but I feel so desperate if I can get better then it was worth sidestepping the health insurance route.

I want to just get away or go to a safe place where I can be rehabilitated and released into the wild again. Financially my life is a wreck with many bills and student loans in repayment. I've filed three times unsuccessfully for SSI, so I've just quit the process entirely.
Well I believe I should end it there. Thank you for your advice as I feel even though it is good to read about TLE and mental illness on wikipedia or a reputable site, receiving advice from a person is wonderful.

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

willl head your advice and see an epileptologist
 

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.

Hi Harry,
I think you are making the right move seeing an Epilieptologist (epi) I've learned over the yrs. that often a Dr. will put a person on a medication just to make money for themselves. That's why I had a DNA blood test done to find out what AED's (Anti Epileptic Drugs) would stop my seizures with the least side effect. The DNA test showed I was drug resistant meaning no drug would stop my seizures completely.
Take my word you could be having temporal lobe seizures as you mentioned but the e.e.g. is not picking up anything because the damage may be to deep in the brain to show. I had to have a WADA test, PET scan, and SPECT scan done to find out what was causing my seizures because there was scar tissue deep in my brain that the e.e.g. didn't pick up.
I wish you only the best of luck and I will tell you that they have proven nutra sweet (apartame) as well as cell phones can trigger seizures for many people so you might want to stay away from those things. Here's wishing you only the best and May God Bless You!

Sue

I just wanted to point out that those lnks I posted on the first page are to some Level 4 Comprehensive Epilepsy Centers in your area. That does not necessarily mean that the docs are Epleptologists although I'd be very disappointed if at least one isn't. Hopefully all are, but since there are only about 100 in the entire US, you have to check. As I mentiond in an earlier post, you are looking for a doc who first did his Neurology Residency and then went back to school to do a Fellowship in Epileptology or Neurophysiology. He/she will have a certificate on the wall saying Fellowship completed in Epileptology. Look for Fellowship in those areas on the wall. Ask about that before you make the appt. Wthout that, he/she is a neurologist who happens to like epilepsy possibly but does not have the education nor experience you are seeking. Tell us about the doc in the same bldg as the psych docs. Is that a Comprehensive Epilepsy Center? You want to choose the right doc this time. By the way I had a complex partial seizure once that was very detailed and elaborate with colors and being on e very important journey sort of like one you described. Sort of dream like. It was during my last year before surgery when my seizures where getting worse. Tattoo

Vertigo, confusion, depression and begining new jobs
 

Hello everyone,

A few things have changed since I last wrote. I tried out the geodon this week and nothing really changed, no side effects and positive effects. Although I've had a few crying spells at night and cannot fall asleep, though this happens whether or not I'm on any meds, and I've been feeling some intense vertigo.
Walking through walmart last Saturday I felt like I was in a stream with a strong current pushing me in different directions, not fun at all.
I have an interview at my local starbucks tomorrow and training for the 2010 census, and I'm a bit nervous about how I'll function with such strong symptoms when I'm just sitting or trying to sleep. I need to support myself yet these symptoms seem to make working extra stressful.
I was also wondering if some people with TLE also have problems with hypoglycemia, I've always felt drained of energy and like my body is inflamed with this stress, I used to imagine it as a dry burning salt sensation. I've been tested by an endocrinologist, because my dad had thyroid cancer, yet my cortizol levels and thyroid levels seem to have checked out fine. So things are hopeful just stressful. Thanks, have a good week yall!

Hi Harry,

As I'm sure you know depression is all part of the epilepsy just like the crying or laughing a person can feel for no reason. If I may ask have you had your blood pressure checked I found out mine was very low and that's one reason why I have felt so tired at times. Also it could be your AED's that are causing this problem. In regards to how you felt while you were in Walmart, there have been many people who have epilepsy and have had problems with seizures while they are in the store and it's because of the stores bright lights. What you are describing sounds like a simple partial or jamius vu type of seizure. You might want to speak to your neuro about this. Also cut back on the caffeine. Here's wishing you well and May God Bless You!

Sue

Still feeling a lot of symptoms
 

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

Dear Larry,

You really have been through the mill with this haven't you; Similar to Porkette I've had seizures for 42 years I was diagnised as TLE with complex partial but they had trouble with what my doc called nervous shakes. Since then that's been revised and I've been late diagnosed with myoclonus too; though with myoclonus which is a type of jerking both sides of my body, by hands, head, neck and feet I've never lost consciousness and it doesn't stop; it's almost like parkinsons but I know it isn't because it doesn't get any worse; but I was dx with leisions on the brain and spikes on eegs. Have you had mri & eeg?

This diagnosis failed to point out that I would have symptoms that were akin to schizophrenic symptoms. Auras, awful smells, confusion, emotionally labile, even something akin to paranoia which is in fact the act of lashing out because of fear when in the process of a sz.

I do know exactly what you are going through and how it's affecting your life, emotions and lifestyle. I urge you to have patience and continue to push for a diagnosis. With the SSI surely there is an appeals process that you can use? Appealing is something you should think about rather than just keep applying; just appeal on the last decision,

Good luck Harry, keep us informed,

Rhian

complex partials diagnosed
 

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

Hi Harry,
I think that you are paying it smart seeing an epileptologist and neuropsychologist. Take my word they will be able to help you more than any psychologist and they understand what areas of your brain are being affected and making you feel the way you do. You should get a PET and SPECT scan done to see what's going on in the brain. Here's wishing you well and May God Bless You!

Sue

Hi Sue and anybody else that may be able to help,

Things are still really tough and I'm searching for an epileptologist in the Chicago region that might be able to help me out. I had an appointment with Dr. Tao an epileptologist at the University of Chicago, but it seems that because my insurance is not accepted, thus I cannot be seen. I feel like I'm nearing the end of my rope of coping. The psychiatrists at the university of Chicago coldly let go of my case, I'm desperately trying not to get into a suicidal state of mind. I don't have transportation or a job so I'm fearing becoming isolated this winter or winter at all. I was hoping fair weather would allow me to ride my bicycle. There are good things in my life as well, but I feel like I've been at the boiling point for the past decade with no way out. If anybody has any suggestions, I much appreciate them and will consider them with full attention as at this point I need true solutions.

Hi Harry,

Don't give up no matter what you do. I know it's hard but try and think of the positive things in life. I'm sorry to hear that the Epileptologist wouldn't take your ins. I've had a hard time with my ins. allowing me to see a dietician so I can go on the ketogenic diet. I've made the decision to do it on my own.
In regards to the depression and suicidal thoughts a lot of that comes for having epilepsy and well and the AED's (seizure meds) a person takes. I also wonder if winter weather makes some people more depressed.
Is there any chance you can get a bus, or gadabout, or any volunteer business that will pick you up and bring you home? I've had to take the bus at times and yrs. ago the train. Try and keep yourself busy so you don't have so much free time on your hands to think about any negative things. Also if you like to write or listen to music this has been proven to help people when they are in a depressed mood. I wish you the best of luck and I will be praying for you. May God Bless You!

Sue

I urge you to not quit the process of filing for SSI. I was also turned down 3 times. I went to a SSI lawyer who only gets a percentage of the lump payment if he obtains SSI for you. I had applied for 2 years---got a lawyer and the judge approved it in 2 weeks!! I wouldn't have survived without it. So please don't give up. Best wishes--Hutch