My wife had an AVM bleed and subsequent craniotomy back in 1984 to resect the AVM. Over the years, she had developed a seizure disorder. When we've gone in to have EEGs done, they have always come back normal which is very frustrating. Neurologists blow her off because of this which is aggravating. They claim they are pseudo-seizures which I don't believe is the case. Had she not had her AVM, I might buy this but clearly she's been compromised in her brain. She's currently on 400mg of Vimpat and 400mg of Zonagran which helps a lot in keeping the seizures in check.
Has anyone else suffering from seizures due to AVM had normal EEGs? Can seizures occur deep in the brain and not register on a scalp EEG? I don't think my wife is crazy and that her seizures are real due to the AVM brain damage. I never thought that I would pray for my wife to have an abnormal EEG...
Any response would be most appreciated...
Hmm. It’s especially hard to not know why or what to do. God bless… Perhaps her neurological activity is normal during the eeg. I don’t think the origins of electrical release matter in the collection of the neurological activity. If its deep it will register I think because of the conductivity of our water built flesh and nature of electrical signals. What kind of seizures do you suspect she is suffering from?
Thanks for the reply.
They're atypical and more like simple/partial complex seizures rather than the standard Grand-Mal type seizures. They usually start with staring spells and then morph to her tightening up first with her hands and feet and then her arms and legs. Her limbs retract to the core of her body and remain very ridged. This will last about 2 to 5 minutes then she'll relax. During a hefty seizure, she will sometimes lose consciousness. During one seizure, I examined her pupils with a flashlight and there was no response. Scary.
After she comes out of the seizure, she has a searing headache on the left side (the locale of the AVM). The only thing that will take the headache pain away is Delaudid (Hydromorphone). The most bizarre/frustrating thing is that her EEGs have registered normal when she has seized during an EEG. The docs insist that they are Psychogenic Non-Epileptic Seizures (PNES) because of the normal EEG readout but I don't buy it. They kick us out the door and tell us to see a psychiatrist (which we have I might add). That hasn't improved our situation.
I can guarantee that if she hadn't had the AVM and resulting brain damage, she would NOT have a seizure disorder today. Interestingly, she responds to AEDs which is what one would expect if they are "real" seizures. PNES would not respond as such.
We're trying to find someone who will believe us and be willing to work with us. Aggravation doesn't come close to describing how I feel right now trying to help my wife...
Hi Sand, I know how this feels first hand almost, When I had my first seizure I went for an EEG and an MRI and both were clear, But years later I had a haemorrhage of an undiagnosed AVM in my right temporal lobe. I just thought I was tired and run down at the time. I pray and hope that your wife is better soon and the seizures stop, I have to take anti seizure meds and thankfully do not have seizures at all, But know very much what they are like :( . Take care
Ya idk… That’s a tough situation. You got to do what you feel is best in your heart. Second opinion perhaps? Exhaust your options until satisfied with the effort… It sounds like she’s been through alot over the years, and you as well. You aren’t rookies… The brain is a hard thing to medically treat and sometimes things, though rarely, are unexplainable, uncureable or even unresponsive to treatment when dealing with cerebral anomalies. Doctors can only do so much and are bound by medical science and thier methodology… If they cannot find the cause of the seizures, what could or would they be able to do? That’s my thinking in regards to feeling that your concerns are being perhaps taken too lightly… Medical professionals are good people with the best of intentions and not just a well educated and successful workforce. Perhaps thier diagnosis of pnes is something with validity and the treatment for that is the next step to the road to your wife’s recovery… Idk. Stay hopeful and optimistic. Solutions through science and spirituality are out there. We are all looking… I hope you and your wife find peace and comfort.
Yes...it's been a long road for both of us.
I understand the nuances of the medical field and that doctors are truly "practicing". I guess where we get frustrated is that they place presumptuous blanket statements or diagnoses when the round peg won't fit in the square hole. They say PNES as the diagnosis but we've explored that possibility for years with no appreciable results.
To be honest, I'm quite surprised that no other AVM survivors who have a seizure disorder haven't gone down a similar path. That would, at least, make us feel better in that we're not exclusive...
I have been on seizure meds all my adult life since my bleed. Ive never even had an eeg but dr has just taken my history and description i have given them of my complex partial seizures. Sometimes seizures dont show on scans or eegs from what i understand.
I’m sorry to hear this about your wife and really hope you guys can get an answer as to how and it’s happening… God bless!
Hi! We are in an incredibly similar situation! My husband had an AVM resected in his left frontal lobe in 2013 and has been on seizure meds since for partial seizures. Recently, they began happening a lot more frequently. He is having an incredibly invasive intracranial EEG and he had an event during the EEG which they read as normal!!! PNES was also thrown around, but some of the doctors disagree. They told me they have seen this either AVM patients and are referring to them as sensory events?!?! He gets the electrodes removed today and then we will meet with the team to try and get more answers. It’s really comforting to know we are not the only ones experiencing this!