Diagnosed with DID, I suspect I may have TLE too

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nichii

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Hello. I was recently diagnosed with Dissociative Identity Disorder. As I was doing some research I discovered some articles that said some people with DID also have Temporal Lobe Epilepsy.

After researching TLE, I realized that a lot of the symptoms matched what I've been experiencing for years. I was planning on just ignoring it because I didn't think there was much I could do, but I recently had a severe seizure and was taken to the hospital.

They ran blood tests, urine tests, an MRI, and an EEG. All of the tests came back negative, but the doctors still agreed that it sounds like I had a seizure. They told me I can make an appointment to see a neurologist if I want, but what else can be done?

I strongly believe I have TLE, but if all the tests came back negative, then is there anything else I can do? Like is there any additional tests they can run? At the time of the test, I was sleep deprived (I hadn't slept in over 24 hours), so that might have affected the results.

I want to pursue a diagnosis, but I'm not sure how to go about that. Can anyone help me?
 
I am in a similar situation I think. I was diagnosed w TLE but my current epileoptologist does not believe I have seizures. During the years after the diagnosis [5 years] I have come to realize that I have DID -- not diagnosed. It seems more exposed as I am increasing aware of cognitive impairment issues uncovered by age but it has always been there. I like my brain a lot and so I want it to last. In consequence I am going to have another VEEG, possibly I will travel to the Mayo Clinic for a workup, I am in process of a workup at an excellent naturopathic clinic, am closely following discussion about gut/brain links on this forum, and I am leaving no stone unturned. I am very afraid of time wasted with medications that snuff out life and all kinds of waste effort. So my advice is to keep at it because it may be worth it.
 
Bidwell said:
I am in a similar situation I think. I was diagnosed w TLE but my current epileoptologist does not believe I have seizures. During the years after the diagnosis [5 years] I have come to realize that I have DID -- not diagnosed. It seems more exposed as I am increasing aware of cognitive impairment issues uncovered by age but it has always been there. I like my brain a lot and so I want it to last. In consequence I am going to have another VEEG, possibly I will travel to the Mayo Clinic for a workup, I am in process of a workup at an excellent naturopathic clinic, am closely following discussion about gut/brain links on this forum, and I am leaving no stone unturned. I am very afraid of time wasted with medications that snuff out life and all kinds of waste effort. So my advice is to keep at it because it may be worth it.
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Is a video EEG more reliable than a regular EEG? I'm wondering if a video EEG would have been able to catch my seizure.

The reason I want a diagnosis is so I can be certain I have this. I'm not too concerned with taking medications, but once I know for sure I have epilepsy, I can be more careful and avoid things that may trigger another seizure.

I'm currently taking 500 mg of Bacopa and 1.6 grams, three times a day, of Piracetam. Piracetam seems to improve my overall cognitive health and I've noticed an improvement in my memory when I take Bacopa.

My memory has declined so much over the years. I'm in my early 20's yet I feel like I have the memory of an elderly man. My supplements seem to be helping though. I also play brain games which seem to help a bit as well.
 
Catching a seizure on EEG is only part of the diagnosis. Furthermore, even when people have VEEG monitoring, there may be no seizures for days, which does not mean they don't exist. Everyone agrees to that. I have been told that seizure activity appears on EEGs only 50% of the time. [I don't know about VEEGs.] If you think you can stop your seizures, whether they are epileptic or not, by avoiding triggers, why don't you do it? Why bother with a diagnosis? I say to get the job done with as little fuss as possible!
 
Bidwell said:
If you think you can stop your seizures, whether they are epileptic or not, by avoiding triggers, why don't you do it? Why bother with a diagnosis? I say to get the job done with as little fuss as possible!
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You do have a point. I think I just want the diagnosis so I can be certain I have it. Before I was diagnosed with ASD and DID, I already believed that I had it, but I was worried I was wrong.

When I was officially diagnosed, I felt happy in a way knowing that I wasn't wrong and there really was something wrong with me after all. Something that could explain why I've been experiencing symptoms for so long. I finally had an answer.

As you mentioned though since seizure activity appears on EEGs only 50% of the time, it might now be worth pursuing a diagnosis after all. It might be more trouble than it's worth.
 
I did not exactly mean that it would be more trouble than it is worth. What I meant is that it IS often trouble and it is OFTEN important to find out and it is OFTEN important to have a very good Epidemiologist doing the work! My best!
 
I have temporal lobe epilepsy and occasionally slip into dissociative states...what are some known symptoms for DID?
 
I am too worried about it to look it up. So look it up! I myself say that I am dissociated when I know something important happened between people or in a space of time and I don't know what it was. [I don't drink.] I also think I nonverbally lead people to think one thing is happening when I am committed to something else. The trouble is I don't know what I am doing. Those are what I am calling dissociated. You know,I am finding that having been a technical writer is very helpful. I am sure having journalism training is very helpful too.
 
Mr.21T said:
I have temporal lobe epilepsy and occasionally slip into dissociative states...what are some known symptoms for DID?
Click to expand...

DID is on a spectrum, so everyone is different. Personally, I experience memory loss, changes in personality (sometimes minor and sometimes as if I'm an entirely different person), depersonalization (feeling detached from one's body, sort of like an out of body experience), derealization (feeling like the world around you is fake or dreamlike, almost like living in a movie), and amnesia. There's a lot more than that, but I'm getting ready for an appointment right now. I'll post more about this when I get back if you want.
 
nichii, I want to amend what I said. When there is a VEEG they go to great lengths to induce seizures, such as keeping the patient in a step deprived state -- or flashing lights in their eyes, etc.
 
I want to expand on what I mentioned before. DID is a fairly rare and controversial disorder, so there isn't very much information about it. I've listed some symptoms that I've found on a blog and I can verify that these are real symptoms of DID, since I experience most of them.

Individuals with DID will have some or all of the following symptoms.

Amnesia/memory loss – any or all of the following: very little or no memory of childhood, gaps in childhood memory (not remembering school, home life, your parents, a particular family member, etc), losing periods of time in adulthood (not knowing where you were or what you were doing for minutes, hours, or days).

Evidence of having done things you can't remember doing – finding writing or drawings you don't remember producing, items you don't remember buying, the dishes clean without remembering having done them, or being told you said something you can't remember saying.

Derealization and depersonalization
Feeling that you have self states or other personalities with partial, full, or no amnesia of what they do and say.

Having identifiably different sets of mannerisms, attitudes, beliefs, vocal styles or inflections, or feelings of age.

Symptoms of abuse without memories of abuse

Difficulty maintaining interest in a hobby, project, or job for more than a few days or weeks at a time

Absentmindedness, frequently forgetting what you are doing, dropping projects without even realizing you started them.

Frequent headaches and migraines

Sudden experiences of intense emotion (especially anger, fear, and sadness) without a cause

Auditory hallucinations – hearing voices of alters or voices of abusers

Periods where you feel, think, act, and talk like a child

Jerks, spasms, or unexplainable seizures: In order to be diagnosed with DID, seizures must be ruled out as a cause, but people with DID can also be diagnosed with epilepsy or pseudo-seizures.

Unexplainable body pain

Feeling like you have two thought processes or that there are two or more people controlling your body or thoughts.

"Coming to" in conversations you did not know you were having or finding yourself doing things you didn't know you were doing


As I mentioned before, DID is on a spectrum, so not everyone has the same symptoms. In my case, I'm able to function in life without too much difficulty and unless I told someone I have DID, it would be unlikely that they would ever suspect something is wrong with me. Real DID is not like the kind of DID that's portrayed in movies. People with this appear normal and we're not dangerous like some people believe.

I'm also almost always in control of myself. Even if an alter (personality) comes out, I'm still conscious and able to control my actions. People with DID aren't controlled by their alters.

Sometimes the changes are subtle while other times they're drastic. Some alters can have different handwriting and even use the opposite hand to do things. Some alters also have a different blood pressure, heart rate, and blood flow and oxygen to the host's brain.

There's also something that sounds pretty crazy and although this has never happened to me, I've heard it happening to some people with DID. Some people with DID have changes in their eye color and some alters may need to wear prescription eyeglasses even though the host does not have any vision problems.

Such drastic changes in oneself is the reason why this is such a controversial disorder. Some doctors don't believe it's real, but it is a real diagnosis and it's more common than people realize.
 
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Nichii, Thanks for this detailed explanation. I will print it out for future reference. I don't really think I can objectify myself well enough to self diagnose, but having this list is helpful. I have been told that it often reveals itself as people get older and I can believe that.

Thanks again!
 
No problem, Bidwell.

I decided I'm probably not going to pursue a diagnosis for my epilepsy. I spoke with my psychologist and he says I may be having psychogenic non-epileptic seizures. These seizures have the same symptoms as simple partial seizures and sometimes complex partial seizures. The only difference is that they're caused by psychological problems. Usually stress or emotions.

I've discovered some of my triggers like stress and lack of sleep, so I'm trying to avoid those. I also discovered that SSRIs and SSRI-like herbal supplements can trigger seizures in me, especially if I'm tired. I decided to stop taking those.

I remember my anxiety being much worse when I was on SSRIs and I would have what I thought were panic attacks pretty often. Now I'm pretty certain that they were seizures though.

A recent study (I was going to post the link to it, but it won't let me) has revealed that people with social anxiety have too much serotonin in their bodies, and SSRIs are increasing their already high levels of serotonin. The more serotonin they have, the more anxious they are. That's why I'm avoiding any SSRIs and any herbal supplements that work in a similar way to them.

Oh and thank you for the links, Nakamova. I'll check those out. I still think it's possible that I have TLE, so I haven't ruled that out yet.
 
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That is so relieving that people are getting around to noticing that SSRIs are not universally wonderful. And I think people with psychogenic seizures sometimes suffer at the hands of neurologists. Neurologists sometimes make people feel that if they aren't doing it in the way the neurologist will bless them, they have failed. That is hard to believe, maybe, but I think it may be true!

Hope you keep up with this forum!
 
I have found this a very interesting and beneficial thread. I can hardly believe that I have so many DID symptoms. I just posted in the "Misleading Information" thread some of my cognitive problems, and this thread has helped me better articulate a few of them more clearly. Thank you.
 
I have TLE with depersonalization.- EEG are useless in diagnosing Seizures if you are not having one at that moment. frankly since my TLE was caught and who cares what is the origin. it is likely Limbic in nature. The only drugs to rid TLE is Tegretol, and Lamictal. For the derealization if anxiety and not seizure related is KLonopin and Prozac. These are the best choices from A major Boston Hospital specializing in TLE. Pick your poison, I would go with Klonopin 4-6 mg per day and put this matter to bed. You will read its the best benzo for the job. Try?:-) I am well for 20 years.
 
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Was taking 200 mg TRAZADONE for sleep apnea AND 200 mg of Prozac for TLE complex partial seizures to control derealization.. Have demotivated state and depressed. Doc and I talked. I take 800 mg. Of Tegretol and 6 MG OF KLONOPIN. Also take a nuvigil tablet.
Asked if I could try Lamictal and responded, let's look at your poisons. He felt I had too many SSRI's so we got rid of the Prozac and felt motivated and a hell of a lot less depressed. Too much. If I did not feel better we would go with a drug that stimulates the cerebral cortex , starts with an A for demotivational states. Have a great Neurologist in Boston.
 
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DID and TLE (mine at least) seems very similar, I guess you could define It as TLE if it only last a few seconds to a minute - and if longer - then as DID?

I've read somewhere that the only real diagnostic difference between TLE and migraine with EEG is the time. If prolonged then migraine. Sad if true...

I had Tegretol as young and swore I would kill myself if ever being put on that med again. Nowdays these thoughts seem very distance, but a vivid memory nontheless! I suppose I was seroius, wonder why?
 
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