Drugs and/or Denial

[giveasmile]

Thanks, Bernard, for helping me log in again.

I guess my story is in my profile and old posts. I don't know what my diagnosis is, or even if I believe it. This is part of the problem.

I've tried several AEDs and none of them seem to work, they just give me awful side effects. One seemed to give me more seizures. Lamictal was tolerated (just a little paranoia) and I felt better on it, but it was stopped for a rash. I was given Ativan and Clonazepam to try and avoid any problems before starting a new AED.

Then, I had a major problem. I don't remember anything except a loud flash and a simultaneous feeling of terror-- then NOTHING. I don't know how long later but I saw (not heard) my name three times and felt pain in my head and jaw, but could not feel the left side of my body at all. I had no idea what happened only that I was confused and disoriented and laying flat on my back on a hotel floor without a shoe and the other one half off. I've shortened this but it was terrifying and the hospital records make it sound like I nearly died from lack of oxygen. But $38,000 hospital bill, ambulance billl and countless doctor billls later, no one knows what happened to me. The withnesses at the hotel told the police/ambulance that I had a seizure (but I've never had a tonic clonic type seizure.) The hospital kept sending me for heart tests but only found some valve regurgitation that would not have caused this. My Neurologist was called by a family member who made them do an EEG but it just said something about too many artifacts in the test. My Endocrinologist suspects Neurocardiogenic syncope which triggered an adrenal crisis.

The Neurologist is never specific about her diagnosis. She just says I have many brief seizures in the daytime even though I only notice (and people sleeping with me only noticed) the horrible stuff that happens when I am sleeping or trying to fall asleep.

I did a new EEG which says:

Digital spike analysis was performed and multiple spike-like dishcarges were detected. Photic Stimulation was performed and induced symmetric driving responses bilaterally. Hyperventilation was performed and induced progressive left rhythmic delta range slowing, sharp waves over the left frontal temporal region and spread to both sides towards the end of hyperventilation. Shortly after hyperventilation, there were transient rhythmic delta range slowing over the left frontotemporal region. This is an abnormal EEG study due to the presence of slowing and hyperexcitability induced by hypoinflation.

My questions:

I never had tonic clonic seizures before. Could they start late in llife? Or can starting to take an AED cause them?

Does that EEG say I have seizures or can anyone (without seizures) get that same result?

I'm very unclear on my diagnosis. I'm just getting worse and worse and I hate myself now because I don't know who I am anymore. Whatever is happening has made me a totally different, totally disorganized, always confused, isolated person. And after a year and a half of AEDs I've somehow put on 30 pounds. I know I'm not eating any differently but some of them made me very lethargic so I guess that's not good. I hate myself right now and I don't know what my next step should be. Another AED, or just let nature take it's course.

 

[masterjen]

You wrote about a lot of different issues, but there is only one I feel I can comment on and that's whether to take AEDs or not. Your endocrinologist says stress caused to faint and triggered an adrenal crisis. A seizure is a huge stress and strain to the body, so if stress can trigger issues with your adrenal gland, then for that reason alone you should be wanting to take medication to control the seizures.

 

[chmmr]

Seizures are a tricky creature-they can evolve, change, or disappear completely and each person really is an individual when it comes to this so it's very hard to predict what will happen to who and when. (so yes tonic clonic seizures suddenly happening can absolutely be an evolution of your previous seizures)

Based on your EEG report, it's definitely an abnormal EEG with multiple abnormalities (not only spikes, but also slowing, and responses to the Photo stimulation and hyperventilation), so i agree with Masterjen. With the abnormal EEG and the fact that seizures could trigger your adrenal crisis i would absolutely be taking meds in you position.

The really unfortunate part of Epilepsy is that sometimes (and often even it seems from this board) that there is no specific diagnosis other than Epilepsy or Seizure disorder. There are so many different causes and types of E (both known and unknown) that it becomes very hard to put a specific label on it.

 

[giveasmile]

Thank you both. I kept tryint to make my post shorter so don't even know what is left that makes sense. I appreciate what you are saying.

I have struggled for so long, and been misdiagnosed/diagnosed and given tons of pills and surgeries that just complicated everything... that I guess I just doubt everything.

If I listened to every doctor I'd have 20 different diagnoses and be on at least 40 pills a day by now. So... now I ask a billion questions and doubt everything.

Is there anywhere on here that explains what all that terminology means in the EEG. I don't know what spiking or slowing means -- or really what makes any of that stuff abnormal. If I did, maybe I'd understand myself better instead of being so mad at myself all the time.

 

[chmmr]

It's good to question things so don't beat yourself up for that!!!

I did a new EEG which says:

Digital spike analysis was performed and multiple spike-like dishcarges were detected. Photic Stimulation was performed and induced symmetric driving responses bilaterally. Hyperventilation was performed and induced progressive left rhythmic delta range slowing, sharp waves over the left frontal temporal region and spread to both sides towards the end of hyperventilation. Shortly after hyperventilation, there were transient rhythmic delta range slowing over the left frontotemporal region. This is an abnormal EEG study due to the presence of slowing and hyperexcitability induced by hypoinflation.

I'm no EEG expert by any means but from what i understand (and someone else correct me if i am wrong), the spikes are what they refer to as epileptiform abnormalities. From what i understand if they are seen without an obvious seizure, they consider them to be a strong indicator that your brain is prone to seizures, and can possibly be seen in healthy people (i think i read 1-3% of the population have these without having seizures. (if they see them while you are having seizures, or in someone who has very obviously had seizures, or having seizures it is a strong indicator of Epilepsy) Your EEG was also abnormal in the photic stimulation and hyperventilation portions which means that you very likely do have some form of seizure disorder that is still fairly easily triggered at this point. The one during hypoventilation i think is an indicator of absence (generalized) seizures which would actually make some sense since a tonic clonic is a generalized seizure. Hopefully someone else that is better with EEG interpretation can chime in more.

 

[Belinda5000]

seizures can stress you out I know I've taken them 50 years.Mine have changed I don't know how many times over the years.
I was told the spikes meant they didn't know were in your brain the seizures were coming from.I'm on my 22nd AED it can take more than just a few AEDs to find the right one.

 

[EC77]

It's a horrible situation to be in. I had t/c seizures from 18 years but looking back with what I know now I wonder whether I was actually having simple partials before that. My EEG result was never given to me in those terms, just that it suggested a sensitivity to lights and patterns but not outside the normal range & MRI was clear.

I gave up alcohol and had no seizures and no meds for nearly 9 years. Had one in Feb 2012 I was put on Sodium valproate (Episenta) it made me put on weight but everyone kept saying how healthy I looked...14pounds in 5 months. I had to eat almost nothing and start exercising (!) over the next 18months and was still a completely different weight and shape. Then at the end of Oct my neurologist identified a couple of dizzy spells as partial seizures so wanted to increase meds. I couldn't bear it. He suggested Keppra as an alternative but when I 'Googled' it it sounded horrendous. Thankfully a couple of people on here shared their experiences with me and gave me the confidence to try it.

I'm now 3 weeks into introducing the Keppra (8 weeks in total) and have already got back into my old clothes and am eating 'properly'. I just hope it continues to go so well and that when I can start reducing the SV in Jan the Keppra does controls the seizures.

I hope that you find someone / or something that someone says that will help you, the not knowing what to do for the best is the hardest bit.

 

[rich956]

Cheers.