Why isn't this enough...?

[elizzza811]

Why isn't this enough for an 'official' diagnosis of epilepsy and as a reason to start anti-seizure meds? (See one-hour EEG results below).

By the way, the 'muscle artifact' described below was my constant jaw clenching. Unless I concentrate on not clenching, I clench. Also, I somehow remember this being a sleep-deprived EEG?

EEG Findings: The resting awake background consists of well-modulated, well-sustained, posterior dominant, alpha rhythm at 9 to 10 Hz and 60 to 70 microvolts, which is attentuated with eye opening and recurred with eye closure.

The patient was drowsy, but stage II staple was barely achieved. There are significant muscle activities that obscured the screen.

Hyperventilation produced build-up.

Photo stimulation produced a driving response. There was one occasion of spike-and-slow waves and possible spike waves seen in bilateral temporal region, primarily with predominance in the right temporal region with phase reversal at T6 and F8. There also was sharp waves seen in the left temporal at F7 and T3.

Heart rate is regular at 60 beats per minute.

Impression: This EEG study is significantly deteriorated by movement and muscle artifact. The patient did not achieve stage II sleep. There was one occasion of sharp and poly-spike waves seen diffusely with phase reversal in the right temporal, especially the mid-temporal region. Due to the quality of this EEG study, the nature of these sharp and spike waves is unable to be determined.

A sleep-deprived EEG study is recommended.

 

[elizzza811]

I found this, but I'm still lost.

http://emedicine.medscape.com/article/1138154-overview

 

[Nakamova]

Basically, the EEG's inconclusive. There's not enough definitive patterning to make the diagnosis. That said, there is an individual interpretive component. Another doctor might find the results combined with your clinical symptoms enough to start an AED. Your best bet is to see another neurologist and/or have another EEG.

 

[elizzza811]

Thanks. I would think that crashing my car, dropping the phone mid-conversation unaware, and burning craters in my fingers with a cigarette would be enough to clinically diagnose me with epilepsy. I have an appointment with a new neurologist at the end of April. Unfortunately, most doctors around here are real sticklers with regards to proving your illness, so I'm kind of bummed out.

 

[techtome]

Seizures and epilepsy are not necessarily the same thing. Pseudoseizures refer to seizures that are a body's abnormal reaction to stress/anxiety. They appear just as an epileptic seizure would appear but on the EEG there is no abnormal electrical activity. This is a mental illness and can be treated by antipsychotic medications. Epilepsy is recurrent seizures caused by abnormal electrical activity and can be treated by anticonvulsant medications. That is why getting definitive results on the EEG is important. It is very important to avoid clenching as the muscle artifact can completely obscure any epileptiform discharges. If the clenching is a result of a medical condition perhaps the neurologist can prescribe a muscle relaxant prior to the EEG. If the clenching is a result of anxiety, then do your best to avoid it. That might also give evidence of the source of the seizures being pseudo more than epileptic. But the fact that there was one occasion of potentially abnormal activity absolutely requires additional EEG testing. It is also important to classify the type of epilepsy as some anticonvulsant medications can increase seizures if given to patients with types of epilepsy for which the drug is not indicated.

 

[elizzza811]

Thanks, but there's no way that this is just another manifestation of mental illness. Believe me, I have severe OCD on top of all this, and half the reason I crashed my car having one of these episodes was because doctors couldn't seem to look past my OCD and just assumed I was OCD-ing over my health, too. Also, I burned craters in two of my fingers with a cigarette during one of these episodes and didn't feel a thing.

What concerns me most is that these episodes only happen once a month, occasionally twice a month, or even less frequently...37 days is the longest duration between these events since I started logging them back in December - which means the length between seizures could even be potentially longer. So how would 5 or 10 days in a hospital ever prove anything?

Also, I'm reading a book right now about seizures and their relationship to psychiatric illness. So now I even wonder if perhaps my OCD is actually the result of these untreated seizures and the repeated electrical 'assaults' on my brain. My OCD definitely increased in severity back in 2005 when I discontinued the Klonopin I'd been taking for 15 years for 'anxiety'. It's utterly crippling today.

And I would think that trying to concentrate on NOT clenching my jaw might alter my EEG? As would muscle relaxants?

 

[Nakamova]

An additional problem is that some epileptic seizures originate too deep in the brain to show on an EEG, making it difficult to get a definitive EEG report. In those cases, the clinical evidence (actual symptoms/episodes) is all the doc has to go on for making a diagnosis.

 

[elizzza811]

I know. I'm worried though. Doctors in my area (at least the ones I can easily get rides to) don't seem willing to diagnose me 'clinically' - they seem to want that 'proof'. And from what I understand, repeated seizures 'assault' and damage the brain...and I've been seizuring since I stopped Klonopin in 2005. In fact, from what I've been reading, the episodes I experience some mornings (waking up dazed and confused) might actually be 'status' complex partial episodes.

My current neurologist, especially now that I'm switching, seems to be dragging her rearend with me, telling me to wait until I see my new doctor at the end of the month. And my appointment with my new neurologist isn't until 4/26. Besides that, it often takes months to even get in for a scheduled test, and I truly don't feel like I have months to spare. I seriously feel like my brain is in about-to-surge mode constantly, to some degree.

 

[techtome]

elizzza you should want proof too! Don't allow anyone, even a neurologist, to 'guess' at what your condition is. Giving you a medication that is not right for you can hurt you more than help you.

If it were me, I would repeat the routine EEG with a muscle relaxant, or another medication the doctor feels appropriate (it will not adversely affect the EEG). If normal, then I would do a 24 hour ambulatory EEG. If that one is normal I probably would consider restarting Klonopin if it controlled my seizures in the past.

It is worth noting that Klonopin is generally used as an add-on drug to help control seizures when a patient is already on an anticonvulsant. Klonopin is effective as an add-on medication in absence seizures and JME but not for generalized seizures as you describe. Klonopin is primarily an anti anxiety medication that would help control pseudoseizures.

If after the repeat routine EEG and ambulatory EEG you still feel that you want to continue investigating then a long-term video EEG would be appropriate. Often it is successful in capturing the seizure activity when the routine and ambulatory do not.

I am sorry for your worries. Waiting can be a terrible ordeal. But getting a correct diagnosis for treatment of a potentially lifelong condition is well worth the wait.

 

[elizzza811]

Thanks, but I really don't want to go on Klonopin ever again, at least not for a diagnosis of 'anxiety'. I think being on that medication for so long hid what may have been an underlying, yet-to-be-diagnosed seizure disorder. I constantly needed increases in dosage, and then when I abruptly discontinued it on my own back in 2005, all hell broke loose. I would reconsider Klonopin for a seizure diagnosis, however.

And I also have serious concerns that this constant jaw clenching might actually be 'status' simple partials. Isn't status a medical emergency? Can't it result in brain injury? Shouldn't that be considered first and foremost in any decision as to what might be considered 'proof' enough of epileptic activity? I'm not exaggerating here...I believe these symptoms are 'status' and keep being blamed on psychosomatic illness, or at least not being treated as the medical emergency they truly might be.

And if this unwillful jaw clenching activity is indeed related to simple partials, wouldn't a muscle relaxant defeat the purpose of the EEG by relaxing the muscle?

 

[techtome]

Yes status is an emergency. Yes it can result in brain injury. No you are not in status. Status is an epileptic seizure that starts and stops continously or simply just continues until either 1 medical intervention stops the seizure or 2 the patient dies. If you were in status you wouldn't know about it because you would be unconscious but I assure you there would be no one ignoring you at that point. So I hope that eases your worries about status. The jaw clenching is simply another symptom of the involuntary movements that you are experiencing.

As far as the muscle relaxant goes, it simply relaxes the muscles. It does not alter the electrical activity of the brain. Usually these medications are not used just because an EEG is technically difficult to perform but in your case the neurologist might agree to them. You will have to talk to him/her.

I completely understand the need to be listened to by your physician. In reading what you have written I encourage you to pursue whichever diagnosis is accurate, be that epilepsy or pseudoseizures, or perhaps even both.

The symptoms you describe are seizure, but of what origin? Whether psychiatric or neurologic is of no consequence other than in the plan of treatment. Neither is shameful or demeaning. I work in a comprehensive epilepsy program and patients come to us all the time with uncontrolled, life altering seizures that are epileptic and we help them. Others come in with identical symptoms and they are sent to psychiatry and are helped. Still others we treat for their epilepsy and they also go to psychiatry because they have epilepsy and pseudoseizures. In every one of those cases, each patient is a person, deserving of respect, dignity, assistance, encourangement, and care, as you are also.

I believe that you will find the answers you are looking for. You are right to continue having the EEGs. Find out what the cause of the seizures really is. Whatever the diagnosis, you are still you. In the end, the goal of treatment is to stop the seizures.

 

[elizzza811]

But if these were merely 'pseudoseizures', why am I losing consciousness at times?...crashing my car, dropping phones mid-conversation, fingers burned with a cigarette? Wouldn't that alone qualify them as real epileptic seizures? Every book I read seems to admit that some seizure activity is simply located too deeply within the brain to detect.

And according to my book, it's not uncommon at all for SIMPLE partial seizures to go 'status' for even decades, and with simples, I wouldn't be unconscious if I were in 'status'...I'd be fully conscious and just be in constant torment from the motion...and that's exactly what is happening.

And I'm not saying I'm in 'status' with the COMPLEX partials...those definitely have a beginning and an end and only last a short period of time, but this jaw-pulling sensation never quits. So I still believe this could be status SIMPLES. I'm guessing that after a certain period of time of status simples (a month?), I end up with a complex partial.

Also, here are my SPECT scan results from September 2006...

Findings: The following perfusion abnormalities are identified:

1) Area of absent perfusion in the posterior aspect of the right parietal lobe.
2) Patchy left anterior and mid parietal areas of absent perfusion.
3) Bilateral perfusion defects in the insular cortex.

Impression: Cerebral abnormalities as discussed above. Although not specific to the diagnosis of neuroborreliosis, this pattern of perfusion abnormality is consistent with this diagnosis.

Now most neurologists will laugh at me if I try to tell them I have chronic Lyme unless they are LLMDs ("Lyme Literate Medical Doctors"), which most neurologists will view as 'quacks' anyway...(if you don't believe me, join Lymenet). So if my doctors refuse to attribute my symptoms to the above chronic Lyme, then yea, I kind of want a seizure diagnosis here to explain my symptoms...and not a 'pseudoseizure' diagnosis.