There was a curious question raised a few days ago that had many of us nodding our heads in solidarity. Have you ever experienced a memory loss with sickle cell?
I think it is a combination of two things.
The first is this is part of the body’s defense mechanism. The pain is so bad, so intense that your mind has to shut off and block out parts of it. I have had sickle cell pain crisis that are so severe that I’m pretty much not coherent or conversant with anything going on around me.
In addition to your brain protecting you from the horrible pain, there is also the fact that you are getting high doses of IV narcotics which your body is not used to receiving. The IV pain medications work on the pain receptors in the brain, so this contributes to the fugue and forgetful state. My husband has told me that I’ve had myriad conversations with him while sick, and I don’t remember anything. Usually in a crisis, I’m out of it for about the first 1-3 days. When I regain my full senses, it’s usually at the point when the pain has started to decrease.
The memory loss only lasts for a few days (usually stops once you get off the high doses of IV narcotics). My family and friends have had many funny stories to tell me after the fact, and I usually end up laughing over it. It’s nothing to be embarrassed about, it’s just one of the hassles of sickle cell.
However, because you aren’t in your right mind it’s essential to have an advocate at your bedside when you are in this vulnerable state. During this time, you might not remember the consents, conversations, or medical information received. I always ensure that I have either a family member, friend or loved one with me especially during morning and evening rounds, and shift changes.
I know not everyone has the ability to have a family/friend present at your bedside. In this case, I would suggest that you write stuff down as it’s happening, or record as much as you can via video or recorder. Most App stores have an app that will record voice, and you can start it whenever someone enters the room.
My cousin once signed a consent to have his knee aspirated, and it was something that he didn’t need and later led to infection. If you cannot have someone you trust at your bedside, then you have to be extra diligent in your own care.
Stay blessed and be well.
has anyone ever experienced a catatonic state and can associate it with sickle crisis?
I can’t remember anything once the meds are given. I’m too busy sleeping or scratching! I have a very bad habit of talking then forgetting mid sentence what I was talking about or why I mentioned it. It’s like I check myself before I get a chance to finish the nonsensical ramblings..I always try to have a loved one at my side during hours that the doctor visits, etc. The phone app is a great idea too.
Has anyone ever experienced memory loss or found it difficult to retain information?