temporal Lobe Epilepsy and conflicting diagnosis,

[morganomics]

Hello everyone, if you're in the mid west I hope you're staying warm and dry.

Feb. 1st I had my first visit with a new neurologist/ epileptologist in Chicago UIC med center. I have to say it was a hell of a time to be in the city, the wind was howling and snowflakes felt like burning bb's on my face. I took the train from Indiana to Chicago, which made things a bit less stressful during the blizzard.

Anyways to the meat of my story and my thoughts. I have had both affective disorders such as major depression and anxiety as well as funny deja vu states, confusion, problems with my memory, vertigo, dizziness as well as my biggest biggest symptom, the headaches that keep me in my room, and sleeping most of the time, so much so that my schoolwork, career, and relationships have suffered because of them. I have them on the left side of my head and there is at least a low level headache. The headaches have been so bad that they make me feel hopeless and gutted.

I was going to the epileptologist to confirm what two psychiatrists have already told me, that I have temporal lobe epilepsy and it explains my deja vu episodes or auras as well as my eccentric personality and creativity. All I want to do in my life is to get better, because I'm afraid if I don't I may be dead due to self-injury or in a worse position then I am now. So the Epileptologist met me at the end of our visit after meeting with the younger neurologist assigned to my case.

He was a pleasant doctor, and ironically enough the two doctors and myself are all left-handed, which is a first. We talked for a good period about my symptoms, he did the standard muscle/ nerve tests. I became flush for a reason unknown to me, so he brought me a cup of water and after a few I was better. He went to meet with the senior neurologist, and then she came in the room with me. She began to tell me that my symptoms aren't concurrent with temporal lobe seizures because I have hallucinations in my mind of bright colors and shapes that have a deja vu quality, the feeling is so strong sometimes that I feel that a window into the universe has been opened like all my senses are mashed together and I can understand or feel the language of the world.

So, she told me that my auras are psychogenic in nature, of course I told them about my psychiatric problems its connected to the headaches. She said my problems seem to be out of her expertise and would be better treated by my psychiatrist. Fine, I've heard it before I'm a pure psychiatric case and I should start what treatment with my psych?

I've been on almost every drug known to man. I've been on many of the anti-epileptics none have really worked, lamictal gave me a horrible rash, and topamax made me suicidal. She was afraid that trying me on any other med would make my depression worsen. Understood. But I feel deeply because of the many many things I've experienced and continue to experience that what's happening to me isn't purely psychological, the brain is connected to the mind it is all one, yet it seems doctors often times like to categorize the neurological and the psychiatric into two different compartments and the two are separate. I feel this thinking is what keeps me falling through the cracks.

I'm not sure where to go from here. I feel like I've reached so many dead ends and contradictory opinions that I'm just exhausted. I don't want to end up in the ER or psych hospital for my symptoms, I just want to have a positive resolution to my problems understanding what is actually happening. If anybody has any advise I'll keep my mind open to everything. Sorry to ramble on so long.

 

[Nakamova]

But the deja vu, and hallucinations and auras you describe CAN arise from temporal lobe epilepsy. Did the neurologist say why she thought they were psychogenic in origin? Why did she dismiss the conclusions of two psychiatrists? Any chance you can see a different neurologist? She seems to be less than helpful.

And I was talking to someone in Chicago yesterday -- brutal windy winter weather. Glad you made the trip okay.

 

[Endless]

Morganomics,

Sighhhhhh.... I don't even know where to begin here.

First of all, <<<hug>>>.

I have temporal lobe epilepsy. Right temporal lobe, to be exact. The oneness you feel with the universe, the patterns, hallucinations, and colors (mine are kind of like a mandala or a fractal - google them), feeling like you've experienced them all before or that you recognize them - these are all classic temporal lobe seizures. You are not alone. We have talked about these time and time again in here. Many of us suffer from them.

Headaches are very common, too. After a seizure I'm wiped out. Exhausted. And my postictal headache usually turns into a migraine and can last up to a couple of weeks, but usually lasts about 3 days. Many people's headaches are regular headaches, and last from hours to a day.

Not all neurologists understand TLE, even if they are an epi. You need a new epi to help sort all this out. When emotional/mental problems are thrown in it gets a little murky. Having your psychiatrists' records transferred to your new epi will help.

As for medications, every medication affects everyone differently. It took 5 before I found my magic pill. It's not perfect, but finally something that's not making me depressed or allergic, either. (for me, lamictal. for you, something else.) Again, normally an epi is very, very good with seizure meds and can help with this. If the epi won't help, ask your psychiatrist if he will.

In other words, get a new epi.

It's going to be okay. The diagnosis and treatment process is a mighty long hill to climb. It's hard to do when you already feel sick. But you must do it. You need to help yourself, one step at a time in order to get well.

You are in very good, and supportive, company in here. It took 4 neurologists (one an epi) before they figured out what was really going on with me. We're taking steps now to treat it. It's been a lonnnnnng journey but I have finally arrived. You will, too.

Seizures stink. Let's get rid of yours, okay?

 

[momof3boys]

It sounds like you need to see a good neurologist about your condition.

Im in the midwest, in Nebraska. I found some very good neurologists in Omaha Nebraska. I live in Lincoln, and have a neurologist here just incase I need to see someone close by, rather than traveling 40 miles. But It sounds like you need to be seen by someone who knows more about temporal lobe epilepsy. I have temporal lobe epilepsy, on my left side. I have the auras before a seizures and often feel "different" before a seizure is about to happen. As far as headaches, Im right there with ya. I was on Keppra before, and in November of 2010, they switched me to keppra xr. Ive noticed a big improvement when it comes to my headaches now. I dont have them as often, but at times I do get some really bad ones. I take the advil migraine to help with them.

If anything, Id try to do some more research and see if there are any good specialists in your area that you can go to that knows more about temporal lobe epilepsy. I was seeing a specialist, Dr. Singh, who is now resigned and chairman of another hospital. I see his partner now, and he's great in trying to help in as many ways as possible. Im scheduled to for my first Video EEG March 7th.

If you ever need to talk, feel free to message me! Hang in there!

 

[morganomics]

Thank you everyone.

Thank you for your replies they really helped to reassure me and stop me from feeling deflated and defeated. I'll answer a few questions, the neurologist thought that my auras are psychogenic in nature because of the visual component. The younger neurologist said that visual hallucinations associated with epilepsy happen in the occipital lobe. Also because I have a long medical history with psychiatric issues such as depression and anxiety. She didn't want to put me on any anti epileptic drugs because of my experience with topamax increasing my depression. I really never considered my visual deja vu auras to be epileptic until a few years ago. I thought this is me, and when I listen to stories here at CWE, it is uncanny. I just feel I need a good relationship with a doctor not one where I feel I'm on the stand defending what I feel everyday as being real and not "all in my head", as the epileptologist I saw Monday said, those words really hit me in the gut, I used to get angry now I just feel I need to move on and find a doc that will agree with my psychiatrist and start treating me. Life really flies by and I don't want to spend this decade like I did the last decade in a half confused and exhausted. Thank you for your words and advice I truly appreciated it. It really is a boost to the self knowing one isn't alone. I'll research out a new doctor and try to stay involved with life. Thanks.

 

[morganomics]

Finding a new doctor

Hello, I've had some time now to think about things, and I think I'm going to move to a neurologist or epileptologist that takes me seriously. There's a part in me that says not again, I've seen quite a few doctors at this point and I feel kind of strange just moving from doctor to doctor. The biggest thing in my way is my insurance, I have insurance through the state of Indiana, but it is very limited. University of Chicago has a good epilepsy center from what I've read, but my insurance has been denied before. On desperate occasions I've made appointments just giving them my insurance information even though I know it will be denied.

So my biggest issue is insurance to actually see the right doctor. Also I was denied by social security disability for at least the fifth time. Now when i apply I don't even go through the process I just receive a letter in the mail saying I haven't accrued enough ss units to qualify for benefits. A friend of mine hasn't worked too much in his life yet still receives benefits for his bipolar disorder. Does any of you all collect social security benefits?

I'm currently on Neurontin 300mg three times daily, it really hasn't done too much. I can say that my simple partials occur seemingly infrequently at least once a month, but my headaches seem to be severe every week. What combinations of medications work for you?

I can also say that my simple partials do have a quality of a mandala or an Indian rug. I used to say they look like when your Nintendo messes up and there are just random digital colors on the screen in a strange pattern.
Also do you all have mood disturbance or have been seen by a psychiatrist as well for mood or behavioral issues? Thanks.

 

[Chel]

I can also say that my simple partials do have a quality of a mandala or an Indian rug. I used to say they look like when your Nintendo messes up and there are just random digital colors on the screen in a strange pattern.

You've just described my migraine auras and/or simple partials (we're not clear which, as there is crossover). Since taking Topamax, my migraines, which were nearly permanent, have all but disappeared. The mandala-type auras you describe came back, but after I identified and removed my main food trigger (Chai tea), most of them went too. Most of that type of aura is food related for me. I'm on Tegretol for my E.

Sorry, I can't help for your mood disorder, insurance or ss queries, but it sounds like you're taking control of your neurologist/epileptologist problem, and I wish you well.

Cheers
Chel

 

[s10sleeper]

Morganomics,

I'm sorry to hear about all of the troubles you are having, I was diagnosed with epilepsy coming from my left temporal lobe and my hippocampus. I have been through numerous neurologists, and then to an epileptologist here in Kansas. Due to them determining that the seizures could not be controlled by meds and I was not a candidate for brain surgery, I have become a candidate for the Neuropace RNS. Due to the neurosurgeon in Wichita that was involved in the clinical trials had left, they referred me to the University Hospital in Indianapolis for the surgery. When I was in Indianapolis I found that the epilepsy center there is great. All of the doctors were very helpful and the hotel right across the street was great. If you are not too far from there, you may want to check it out there, that is where I had my surgery in 2009. Best of luck to you with your troubles.

 

[momof3boys]

Hello, I've had some time now to think about things, and I think I'm going to move to a neurologist or epileptologist that takes me seriously. There's a part in me that says not again, I've seen quite a few doctors at this point and I feel kind of strange just moving from doctor to doctor. The biggest thing in my way is my insurance, I have insurance through the state of Indiana, but it is very limited. University of Chicago has a good epilepsy center from what I've read, but my insurance has been denied before. On desperate occasions I've made appointments just giving them my insurance information even though I know it will be denied.

So my biggest issue is insurance to actually see the right doctor. Also I was denied by social security disability for at least the fifth time. Now when i apply I don't even go through the process I just receive a letter in the mail saying I haven't accrued enough ss units to qualify for benefits. A friend of mine hasn't worked too much in his life yet still receives benefits for his bipolar disorder. Does any of you all collect social security benefits?

I'm currently on Neurontin 300mg three times daily, it really hasn't done too much. I can say that my simple partials occur seemingly infrequently at least once a month, but my headaches seem to be severe every week. What combinations of medications work for you?

I can also say that my simple partials do have a quality of a mandala or an Indian rug. I used to say they look like when your Nintendo messes up and there are just random digital colors on the screen in a strange pattern.
Also do you all have mood disturbance or have been seen by a psychiatrist as well for mood or behavioral issues? Thanks.

I was put on Neurontin when I was younger and I was BAD on that medication! And when I say BAD, I mean I was angry, and totally a different person. I was in my teens when my dr tried me on the medication and what I can recall, my mom has told me that I was very mean and angry all the time when I was on it The minute they switched me from that to a different drug, (I will have to ask my mom what they switched me to) I became a different person. My parents said they never saw me that way before. My temper was very short and I was always getting into fights with my parents. I know everyone reacts differently to medications, but that one just didnt do the trick for me. Its been years now, and Ive been on Keppra and Carbotrol for as long as I can remember. They do help me with controling my seizures, but at times I have break through seizures.

Ive tried to get Social Security benifits, but I was denied.

 

[morganomics]

that stinks, in September 2009 I was first put on Tegretol, and I was taking a dose way too high because of a typo, I was irritable and depressed, though I muscled through it. It wasn't until I was put on Topamax this past July that I started to become short tempered and suicidally depressed making one attempt. I went to the ER after my mom noticed how dramatically depressed I was acting and the things I was saying. I was released and saw a new psychiatrist who like the last diagnosed me with temporal lobe epilepsy, but didn't put it together that the topamax was dangerously affecting my mood! My dose was raised and I fell apart only weeks later to find myself back in the ER, in my doped up state I was coherent enough to finally stop the topamax and after a few days my mood was much better, but unfortunately I have the crummy memories of what the drug resulted in. Currently I have days or weeks were I sleep most of the time, I might go out at night for a walk and work on my small business. I feel almost incoherent at times, I suspect that the epilepsy affects my moods and my cognition to a great amount. Do you have problems with sleep, and mood even without meds? My short-term memory is so terrible, which teachers started to notice in the late 90's, do any of you have these problems?

 

[morganomics]

S10Sleeper, since your TLE was in your hippocampus did you experience mood and memory difficulties, was it difficult to function cognitively? How have you been since your surgery? Did you go to the IU comprehensive epilepsy center in Carmel Indiana near Indianapolis ?

 

[Frink]

Hi Morganomics,
I have right side TLE, I do not take any AED's.

I also have problems with my mood I can get very grumpy and irritable, but not violent, my brain just cannot handle any more input, light, noise, heat, etc.
It seems like all this "input" is overloading my brain and I just want to get away, but you cant get away from your brain, kind of like a confused fight or flight response where you cant flee so you must fight , but there is nothing to fight, so you are left with this irritation, and when I get like that I need to move to a cool quiet location and relax with some good music on my MP3 player.

Sleep is critically important to seizure control.
I used to have problems sleeping because of pain, but since I have been taking a time release pain med I have been able to sleep about 6.5-7.5 hours most nights. From time to time I will still get extremely fatigued and need to take a 4 hour nap.
I spent about 3-5 days every week from Sept 2010 - mid Jan 2011 having to take a nap. The fatigue hits like throwing a switch, I will be fine and then CLICK I have to go to sleep now. This fatigue is related to seizure activity.

I found out that the generic medication I was taking was not up to normal potency and my blood levels had dropped almost 50% causing an increase in seizure activity. I started a new bottle of medication about 2 weeks ago and the seizures/ fatigue has stopped.

Ahh, the wonderful memory problems, I still have a bad memory but it was so much worse when I was having more seizures, I have huge holes in my memory. Almost no memories from 2002-2008 when I was seizing regularly.

 

[Endless]

Frink,

Out of curiosity, a question: Do you have a Traumatic Brain Injury (TBI)?

 

[Frink]

Hi Endless,
Yes my seizures were caused by a TBI from a motorcycle accident.
My seizures started about 2 weeks after the accident.

 

[Endless]

From what I've been told, the brain not being able to handle a lot of input at once, or chaotic input, is a sign of TBI. I experience this, too. Have TBI, too. I think it may be one of the reaons I have seizures in Ikea, and in some restaurants. That, and the lights.

 

[Cint]

Also do you all have mood disturbance or have been seen by a psychiatrist as well for mood or behavioral issues? Thanks.

I've had epilepsy for 30 years now, have tried 11 drugs for seizures and had a left temporal lobectomy back in 1990. I was seizure-free for 14 months after the surgery. Then the seizures came back as CP's and TC's, whereas before surgery they were only CP's. Not only were the seizures worse, so was the depression. I couldn't get out of bed. They sent me to a neuro-psychiatrist who tried me on numerous anti-depressants. I was almost suicidal several times. Finally he put me on a tri-cyclic anti-depressant and a small dosage of an anti-psychotic. The problem with those drugs is that for some, it can cause TYPE I DIABETES, as it did for me. So now on top of the seizure meds, anti-depressants, I have to take insulin shots 5 times a day and check my glucose level numerous times a day. I also had the VNS surgery twice.

 

[s10sleeper]

Morganomics, I have had issues with depression alot, although it has only been the past couple of years, the doctors think it is just due to all of the limits put on me due to my epilepsy. As far as memory issues, I used to have some problems mainly with remembering words but that has gone away, I think it was a side effect of one of my meds, I think it is the Keppra. As far as other memory issues I haven't had any problems, I have had to take neuropsych evals every 6 months for the past few years and fly through them with no trouble, in half the time they set aside for it.

As far as the surgery has been, it has helped some, as the number of seizures decreased from up to 5 a day, in my sleep and awake, to 1 every 5-7 days, still in my sleep, at least from what i can remember, hard to remember all of the seizures that happen when I am asleep. Along with that, the feedback from the RNS implant has also shown a decrease in the intensity of my seizures. It is a long process though, as I have had to go in every 3 months for them to check over everything and make necessary changes to the settings. Last appt since they saw such improvement they did not want to adjust the settings, but they are considering putting me on Vimpat, not sure if they will just add it to my other 4 meds or if they will finally take me off of one of them. They usually don't use more than 3 meds at a time, but they have had a lot of trouble with meds working for me. Overall though I thing the RNS implant has made quite a difference.