After it’s over: the Post-ictal Stage

Introduction

In order to understand what happens during the Postictal stage of a seizure, you must first understand what causes a seizure. For the lay people reading this, think of a seizure like a summer thunderstorm without the rain. I use that analogy because seizures are the result of errant electrical activity within the brain. It can result in different symptoms depending on the type of seizure and the part of the brain involved. It’s also important to realize that anything the brain does normally, it is still capable of doing during a seizure.

The “ictal phase”

Approximately midway through a seizure, the person enters the “ictal phase” when the visible symptoms associated with the seizure – including the Aura – begin and until they subside. It is worth noting, however, that symptoms may persist even after obvious seizure activity has subsided. This is because some of these are after effects associated with the occurrence of a seizure. Some common examples include: 1) The inability to think or speak normally; 2) Irregular movements or the inability to move; 3) Confusion; and 4) Sleepiness.

The post-ictal phase

Following the ‘ictal’ phase, some people recover almost immediately. For others, require minutes – or even hours to recover. This varies from person to person and is also influenced by the type of seizure (i.e. absence, gran mal) as well as what part of the brain was affected. During the recovery phase – which is what the postictal phase is – involves two key areas: your body generally; and your feelings and thoughts. From the physical standpoint, the post-ictal phase can: 1) Cause a sensation of being either dizzy or lightheaded; 2) Cause a headache; 3) Nausea or upset stomach; 4) Feeling of weakness which can be specific to one side and/or part of the body; 5) Sensation of needing to urinate or have a bowel movement; and 6) Feeling extremely tired or wanting to sleep.

In terms of your feelings/emotions and thoughts, the post-ictal phase can: 1) Slow your response time; 2) Cause a sense of forgetfulness and/or memory loss; 3) Cause difficulty in talking or writing; 4) Feeling depressed or sad; and 5) Feeling anxious confused, or scared.

BIBLIOGRAPHY

The Epilepsy Foundation (2014). What Happens During a Seizure? Retrieved on April 23, 2019 from https://www.epilepsy.com/start-here/about-epilepsy-basics/what-happens-during-seizure

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Only a Dream? (Part I)

As is often the case, my fellow writer Skye Waters planted the seed for today’s #awareness blog when she posed the question “Will there be a cure?” (See: Hydrocephalus: More than just a dream) The general consensus among us who are first generation survivors is not in our lifetime. Why? Because the “powers that be” assume that brain surgery – to implant a shunt or open an alternate path using an Endoscopic Third Ventriculostomy is sufficient. Skye points out that neither of these are a permanent cure, for some hydrocephalus patients receiving them, they definitely feel like it. Take another of my hydro sisters, H.E. Welker, her last complete shunt replacement was thirty eight years ago and she is still doing great!

What are the treatment options?

Non-invasive medical treatments are a stop gap measure to, hopefully, delay the need for surgical intervention. (Medscape, 2018) For example, it might be used if a newborn infant is suffering from Posthemorrhagic hydrocephalus (assuming there are no indications of Acute Hydrocephalus). In these cases, it is possible for normal cerebrospinal (CSF) absorption to resume spontaneously. As a general rule, medical treatment of hydrocephalus is not effective in the long-term due to possible metabolic consequences. Generally, medications given for hydrocephalus affect it in one of two ways: 1) Decreasing the secretion of CSF by the Choroid plexus; or 2) Increasing the reabsorption of CSF using medications such as Isosorbide.

Do we lie?

My hydro sister – and fellow writer – Skye Waters raised an interesting question in her #awareness blog today: do we “lie” to appease the response of others to our condition? I have always tried to be honest and upfront with my family and friends, but, sometimes, you have no idea if their “take away” even remotely resembles what you just told them. I found this to be true several years ago while hospitalized due to complications from my hydrocephalus. A friend called my sister to let her know how I was doing and my sister was surprised to learn how sick I really was. “But daddy has always said he just has a big head,” I had never talked to daddy about it, I just assumed he understood that it was something that could take my life.

Skye brought up a excellent point when she wrote “For the sake of my own sanity, I prefer to think of it as being hopeful,” referring to what she tells others about her hydrocephalus. I agree with her completely. I say that because, unless you experience what we go through on an almost daily basis, you can’t begin to fathom how scary our lives really are.

How insensitive can they be?

Friday night my sister – and fellow #Hydrocephalus survivor Liz Welker tagged me in Facebook post discussing a website article entitled “What are waterhead babies” (Healthfully, 2017) written by Callia Roberts on Healthfully. As if the title wasn’t offensive enough, she makes it worse by stating “Water head baby is a term given to newborns born with hydrocephalus”. Ms. Roberts, news flash, that term fell out of favor years ago and we find it HIGHLY offensive. Let me educate you Ms. Roberts on proper etiquette when you interact with a person who has a chronic condition or disability:

Avoid using outdated terminology such as “water-head”. Be aware that some people with a chronic condition – which hydrocephalus is considered to be – or disability dislike euphemisms such as “differently abled”.

Put the person first. By that, I mean say “ person with a disability ” rather than “disabled person” . If you know the person’s specific disability, Tourette’s, for example, you are probably safe saying “Person with Tourette’s. Be mindful, however, that each person does have their own preference.

Realize that we are well into the 21st century and certain terms that were once acceptable are now not only offensive, but are also obsolete. (NCDJ, 2015) Here are some examples:

Birth defect / Defect / Defective should be avoided when discussing a disability because it implies that the person with the disability is somehow incomplete.

Epileptic fit is highly offensive to those – like myself – who have to deal with epilepsy. The proper term for describing the erratic brain activity is “Seizure activity” or, simply, “Seizure”.

Mentally retarded is one of those terms that is BOTH offensive as well as being obsolete. When referring to someone with a disability that affects their intellectual abilities and/or capacity, the correct term to use is developmental disability.

Spastic / spaz should be avoided because it is derogatory. The only exception to this is when making reference to Spastic cerebral palsy .

BIBLIOGRAPHY

Healthfully (2017). What are Waterhead Babies. Retrieved on April 5, 2019 from https://healthfully.com/water-head-babies-8388042.html

National Center for Disability and Journalism [NCDJ] (2015). Terms to Avoid When Writing About Disability. Retrieved on April 6, 2019 from https://ncdj.org/2015/09/terms-to-avoid-when-writing-about-disability/

Getting the word out

Things have been crazy here of late due to health challenges, however, thanks to my sweet sister Kim, I am back on track. 🤩 That meant today I could get back to working on my various social media sites. My main project today was to get Hydrocephalus Nation up and running on Mighty Networks and tonight that is a reality. You might wonder why hydrocephalus advocacy is such a high priority for me. It’s because I have survived the condition for 55 years – my entire life – untreated which is basically unheard of. Because of this, I am recognized by the local medical community as the “Oldest, non-treated hydrocephalus patient in the State of Georgia.”

There is no cure

Another reason I am so passionate about advocacy is because, currently, there no cure for hydrocephalus and the only treatment is brain surgery. Depending on the patient’s circumstances, their neurosurgeon can either: 1) Insert a shunt into the affected ventricle(s) to drain the excess cerebrospinal fluid by diverting it to another part of the body; or 2) Burring a hole into the floor of the third ventricle allowing a natural pathway for drainage of the CSF. Both procedures come with their own inherent risks including failure of the shunt and infection.

One million strong

Yes you read that heading correctly — since mid-1960s, one million babies have been born with hydrocephalus. (Hydrocephalus Association, N.D.) According to the Hydrocephalus Association, an estimated one or two births out of one thousand (1,000) presents with congenital hydrocephalus.

BIBLIOGRAPHY

Hydrocephalus Association (N.D.). Hydrocephalus fact sheet. Retrieved on March 31, 2019 from http://www.hydroassoc.org

Do they have it backwards?

Process of elimination is backwards

I would have to agree with my fellow hydrocephalus warrior Skye Waters when she says the medical community has it backwards when it comes to diagnosing potential problems with shunt or Endoscopic third ventriculostomy failure. They want to rule out the “mundane” problems first such as: a cold, gastrointestinal issues, or, my personal favorite, a migraine headache. In all fairness, I will say, however, that constipation can mimic a shunt failure due to pressure on the distal catheter.

Let’s look at potential problems with an ETV:

Sudden pathway closure occurs when the pathway burred in the floor of the third ventricle closes. It occurs in an estimated 20% – 50% of patients within five years with the majority occurring within six months of the procedure being completed.

Infection with an ETV and/or ETV/CPC statistically has been shown to occur in less than one percent (1%) of patients treated with an ETV.

Fever and bleeding from an ETV or ETV/CPC are possible even though advances in technology have significantly decreased this risk. According to the Hydrocephalus Association this is the result of thinning the floor of the third ventricle (see image above). Perforation of the basilar artery located beneath the floor of the third ventricle.

Closing thoughts

The Hydrocephalus Association says that, as warriors, must realize that an ETV is not a permanent cure for hydrocephalus. While I agree with this statement, I think it’s equally important for the medical community to understand we are intimately familiar with our bodies and when something just isn’t right. They need to become better at listening to us as opposed to making “one size fit all”.

The Journey Begins

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

As simplistic as it sounds, this describes the effects of hydrocephalus perfectly. What makes it even worse is the hills often come up without warning. For example, on October 12, 2017, I woke up with a severe headache. By that evening, I was hospitalized facing surgery for aqueductal stenosis. Since that time, the surgery has been on again and off again at least six times. Although the doctor’s are reluctant to admit it, it is because they have little experience treating patients my age who have survived so long untreated.

In addition to the physical challenges hydrocephalus patients face, it also causes us to have to deal with both anxiety and depression. Sometimes this combination can have tragic results. When I was hospitalized in 2017, I woke up on Tuesday morning of my second week in the hospital with my head still hurting and my vision blurred. I’ll be honest . . .for several minutes I contemplated suicide. Then, just as quickly as the thought entered my conscious thinking it was gone . . . dispelled by the realization that I had come too far – and had too many people who loved me – to take the easy way out.