Feel like going crazy

[notpsych]

Hi Everyone,
I sometimes feel like I am going to go "crazy" because of so many unknowns over the past two years. I started having seizures (grand mal) at very high altitude 2 years ago. Since then I had numerous partial seizures that sometimes lead into grand mal ones if not stopped with anti-seizure medication.
For the past 10 months I have been on anti-seizure medication that have all but eliminated my seizures. However, I cannot find a neurologist to agree with me having "real" seizures because they don't show up on an EEG. They want to say that I must have unresolved trauma, or that I am extremely anxious. Neither scenario is true. However, when I mention that the anti-seizure medication have controlled the seizures the neurologists say that in some cases anti-seizure medication works for some psychological issues. I just don't get it!
Anyone else experience this type of situation?

 

[DayDreamer]

Many people have seizures that are not considered to be of the origin of epilepsy by todays theories of medicine. I wonder what it was like to have seizures six hundred years ago, who cares what the cause was. You were lucky to survive the seizure or not be burned afterward.
Science continually changes. Otherwise the earth would still be flat and many of us would be using prayers as our only source of medication.
My cousin had seizures that were triggered by low blood sugars and a friend by stress. They both have managed to control them somehow.
You could try and keep the best possible daily journal of everything you feel/eat/ do along with your seizures and see if you find a correlation. My diary has helped me define some triggers. The number of seizures has decreased after finding triggers. I like to keep track of when I take my (any) medications also or if I ever miss one.

 

[Chaz1]

notpsych

Warm welcome to CWE...

I so agree with DayDreamer, every word....start a dairy today, it’s been very helpful for my Son and helps us deal with docs....
The reason docs say "anti-seizure medication works for some psychological issues. “Is because they are considered mood stabilizers and they use them to treat example bi-polar (my sis bi-polar and my Son has E)

The cause of seizures can be so deep in brain they cannot see it/find it.....at least they are not holding back the meds which are thank goodness controlling your seizures.. Don’t let them (docs) back you into a corner….you may need to fight for you rights….and even more testing, because one EEG may not cut it…..did you have MRI?

Keep sharing…..we all learn from each other here at CWE..

 

[Nakamova]

Hi notpsych, welcome to CWE!

I'm sorry that you've been tagged with the label that your seizures are non-epileptic -- that seen to be happening a lot lately. You'll find many folks here at CWE are having to deal with this situation. Neurologists seem to forget that the EEG doesn't pick up every kind of seizure all the time. And they forget that a negative EEG doesn't automatically = a diagnosis for psychogenic seizures.

It's hard, but you'll need to keep looking for an experienced neurologist/epileptologist, perhaps one at a large regional epilepsy center. The article at this link http://jnnp.bmj.com/content/76/suppl_2/ii2.full says among other things:

Spatial sampling in routine scalp EEG is incomplete, as significant amounts of cortex, particularly in basal and mesial areas of the hemispheres, are not covered by standard electrode placement. Temporal sampling is also limited, and the relatively short duration of routine interictal EEG recording is one reason why patients with epilepsy may not show interictal epileptiform discharge (IED) in the first EEG study...It is crucial to recognise that a normal EEG does not exclude epilepsy, as around 10% of patients with epilepsy never show epileptiform discharges.

You might want to gently remind your neurologists of this...

Best,
Nakamova

 

[notpsych]

Yes, I had an MRI which showed a lesion & ischemic changes in my brain due to hypoxia.

 

[notpsych]

Thank you for the article. I need to find a good neurologist, but will definitely keep in mind to "gently" tell them anything.

 

[notpsych]

Good idea about the journal. My primary care Dr had me do that last year. Fortunately, I have only had two mild seizures (during the night) in the past 8 months. Both of them corresponded with pms.

 

[notpsych]

I agree about science changing. Not many people are willing to be live test subjects for the brain.

 

[Chaz1]

"lesion & ischemic changes "

they dont relate/link this to your seziures?

 

[notpsych]

Most have not seen the MRI. However, my Dr (not a neurologist) sees a correlation. It seems obvious, but the neurologists only rely on the negative eeg, and the fact that I take medication for depression. I am still searching for a good neurologist, who is knowledgeable about frontal lobe seizures and/or high altitude issues.

 

[Chaz1]

one opinion rarely enough these days....

Keep searching notpsych......as we will too, for answers..

 

[Cint]

Most have not seen the MRI. However, my Dr (not a neurologist) sees a correlation. It seems obvious, but the neurologists only rely on the negative eeg, and the fact that I take medication for depression. I am still searching for a good neurologist, who is knowledgeable about frontal lobe seizures and/or high altitude issues.

I live in the Denver area and have been in the mountains many, many times. I've had E for over 30 years and don't think the high altitude has anything to do with my seizures. I also lived in Memphis for over 20 years and the seizures were just as bad there as well, although I first started having them when I lived here. For those who are not accustomed to the high altitude, it does literally take your breath away until one is acclimated to this environment, usually a day or two. And for those with a seizure disorder, you need to make sure you take your meds as this altitude can cause a break-thru seizure.

http://www.altitudemedicine.org/index.php/altitude-medicine/preexisting-conditions

Seizures:
Persons with seizure disorder well controlled on medications do well at high altitude, and it is generally considered safe to travel to altitude with epilepsy that is controlled with seizure medications. High altitude may unmask a seizure disorder in someone who has never had a previous seizure. In addition, the stress of altitude, usually in combination with other factors such as cold, overexertion, alcohol or lack of sleep, may cause a single seizure in persons without any type of seizure disorder. Persons who have been on seizure medication in the past but who have discontinued it might want to consider taking it again for a high-altitude trip, especially a longer trip or if going to a very high altitude.