Has anyone else had experience with screaming during seizures? The doctor is calling them seizures, but they go on and on.....DH is not able to express pain, but screams for hours....seemingly in pain. Gosh I hate this disease!
Ann, I am wondering why the doctor is calling them seizures... What else is happening while your DH is screaming? Any convulsions? Does he seem to "zone out" and just quietly stare at nothing in particular? Any localized shaking or jerking movements? Is the doctor a neurologist? If not, perhaps he needs to he evaluated further to find out for sure; and maybe have something prescribed to calm him. This must be awful for both of you. I hope it can be resolved soon.
this would worry me greatly if DH expressed fright or pain during these episodes. I would call the neurologist asap and tell them pain is unacceptable at any stage or occurrence. there are a few decent meds out there for seizure activity that many of us have used with good results. I use gabapentin generic for Neurontin and others have used keppra. I don't see any reason why the dr would not have him on something to help with this. if they are under control with one of these seizure meds, it would probably avoid the screaming and pain. and yes they are unable to express pain and fear so its extra hard for them and us. best of luck finding some help asap! divvi
I agree with divvi, you should call the dr and let him know this is not acceptable and your husband needs to be on some meds to help with the "seizure" and the screaming. It is NOT normal to scream for hours.
What meds is your husband on and could they be causing the "seizures"? Trazodone made my husband have a syncope (like a zone out), a high dose of Seroquel (400mgs) was supposedly responsible for 3 tonic clonic seizures in the same night, but I am absolutely certain it was the Avelox which was given to him for a mild case of aspiration pneumonia.
Any way, wishing you both some relief soon.
Edited to add: the doctors told me that during a seizure (tonic-clonic) the person does not experience any pain.
Over the years my husband had seizures at least twice a year. Initially he was treated with Dilantin and that was later changed to Keppra. For a time, Depakote was an add-on. IMO, the Depakote increased his delusions. The seizures were tonic-clonic. I would say they pretty much uniformly started with staring, then the active jerking, then a return to staring. In addition to the seizure specific meds he took Ativan, Xanax, Ambien and respiridone.
During the earlier stages of his FTD he would actually say that he felt a kind of "detox" after clearing from a seizure.
Maybe TMI, but I wanted to share that he never showed pain or discomfort. He never screamed. I just looked back at your post where you said the screaming lasts for hours. Really I want to echo the advice above and send you kind wishes.