Other Another convulsive Episode while grocery shopping

[SeanCharles]

12/22/2018 Six years ago, While under the employment within a large grocery retail company where I chose to shop today I had another seizure! Thank goodness I was not alone and my mom witnessed this episode. Unlike previous ER visits in the past, I was not given anticonvulsivant medication this time, I was as usual given fluids for dehydration and was tachycardic (Rapid heart rate). Being where I am in the world, The neurologists in this town have a bias and because of past relationships on the premise of diagnosis which is "Epilepsy" which I know is being misdiagnosed and grossly mistreated with medication which is ineffective because of the symptomatology which I know is ptsd, a suspected case of dissociative behavior and anxiety.

What is unusual about these episodes is their frequency which is not frequent. They occur years apart and seem to have the same cycle at the onset. At times like what occured today I do become unconscious as the intensity of the onset symptoms which over time I have become extremely familiar with after the repeated episodes.

I have to question if the current therapy which is behavioral health by a Psychiatric Nurse/Social Worker is not effective or perhaps my dissociation is something I need to focus on more as this is symptom along with anxieties seem to be connected as sometimes I have mini episodes absent the loss of consciousness. I know after my previous seizure I had conducted a Google Search which led me to this Forum in which a member had described in detail the episode they experienced from their perspective which described symptoms I had experienced myself. With the Holidays around the corner, I suspect several things may have brought this episode on.

I am going to conclude this post and will likely post a Diary post shortly.

 

[IceQueencop]

@SeanCharles - I have to tell you to trust your gut. As frustrating as it is, the so-called professionals that treat us or only as good as their training and experience. They don’t have YOUR experience, and NOBODY ever sat down with them and told them, “this is how you treat @SeanCharles.”
It’s good that you are keeping track of your symptoms and the onset of your symptoms. Feeling overwhelmed is a common PTSD thing. A therapist or psychologist should be able to help you sort through some of that so you can take everything a strand at a time so it doesn’t feel so overwhelming. A psychiatrist should be able to help you get on appropriate meds.
If you don’t feel like you are being taken seriously by local professionals, you have two options: 1) go somewhere else, 2) file a complaint. The steps in #1 are pretty obvious, but the steps for #2 are distinct and important.

How to file a complaint against a medical or or mental health professional.
1. Understand the reason that you are filing the complaint, for example:
a. You aren’t being treated impartially, fairly or professionally.
b. The professional was not acting professionally.
c. The professional violated your health care privacy rights.
2. Learn who oversees the professional.
a. In a clinic setting, there may be a supervisor or Board of Directors.
b. If the professional is a solo practitioner, there is likely a state Board that oversees them.
3. Sort the facts and observations from your emotions. Give details that let the reader draw conclusions, instead of drawing conclusions for your reader.
a. Do NOT say, “XYZ made me feel worthless.”
b. DO say, “XYZ came into my exam room and sighed like he was frustrated. He then rolled his eyes as he picked up my chart. It is not easy for me to express how I feel, and XYZ made it clear he didn’t care anyways.”
4. Understand the complaint investigation process. It is unlikely that you will get the dramatic finish that you would see in a movie; professional gets fired or dragged through the press. Your complaint should be investigated and the effect may only be that the professional has to explain themself to an overseeing body. Make peace with this because it does require the professional to examine their own behavior and hopefully improve for the future.
5. Know that your complaint is important and will be taken seriously. Mental health parity is a big deal, and if you would like it to be more than lip service, do your best to articulate to the professionals how to treat @SeanCharles.

Best,
IQC

 

[blackemerald1]

I was as usual given fluids for dehydration and was tachycardic

^^These are not typical of ptsd. What caused your tachycardia - were you investigated for this? Tachycardia can, in some instances cause loss of consciousness.

"Epilepsy" which I know is being misdiagnosed and grossly mistreated with medication which is ineffective because of the symptomatology which I know is ptsd, a suspected case of dissociative behavior and anxiety.

Are you taking the medication for the Epilepsy? I was given a well known anti-epileptic med., to assist in managing ptsd and anxiety at one point.. It moderated my moods and helped me regulate anxiety. Have you been told you are being given these drugs for Epilepsy or anxiety bc they should help with both.

The symptoms of ptsd can also be mimicked by some physical and other mental disorders. Have your doctors thoroughly investigated other causes too?

 

[whiteraven]

Couple of things. I have epilepsy, PTSD, and a dissociative disorder. My epilepsy was actually misdiagnosed as dissociation and I'd had hundreds of seizures before someone finally got it right. My initial seizure was a grand mal, but all others have been partial - and although I usually have some awareness that something is wrong, I am never fully conscious.

What makes you think your diagnosis was incorrect?

It often takes multiple trials on different meds before they work. Some people never find one that works as well as they'd hoped. But there are a lot of different treatment options.

Can you describe your seizures? It's actually not that unusual to have them just occasionally - some people go for years before having a 2nd or a 3rd.

 

[SeanCharles]

My very first seizure was a grand mal which I completely lose consciousness during. I was prescribed a few different meds by a Psychiatrist/Neurologist. That practice refuses to see me any further. In terms of the medication The meds do quit working after awhile. I do have Dissociative episodes also. I am currently medicating which my current therapist is aware of and that seems to keep these seizures from occurring regularly.

With exception to the last time I was taken to the hospital after having the seizure at work, I was given fluids and the doctor saw that I was dehydrated and tachycardic (Rapid heart rate) which might have been a spike of the anxiety. What I was able to link through doing a google search and with the right keywords, I was given a post that described the seizures as though I am doing a hard power cycle ( as if you turn off your device, say a desktop computer, gaming console or other device by using the power switch rather than using the correct power cycle process.

 

[SeanCharles]

Basically I have what is like a check engine light which I sometimes would get which would last minutes if this light starts blinking intensely then I realize I am going to go into a seizure (as if to ignore the light).

Basically I had use PTSD Seizures and dissociation I think as the magic keywords that gave me the "Ah ha!" The Emergency Doc I was treated by was one I had been treated by previously.

In doing further research I had learned about a potential testing (Video EEG) among a few other diagnostic tests by someone who can evaluate and identify Epilepsy versus Non Epileptic Seizures. Unfortunately I would need a referral to have this testing done and would need to travel a few hundred miles to have this testing done.

I do have a Disability Hearing with a Judge next week on Tuesday the 8th of January which I am definitely looking forward to. I have written about these seizures in depth in my diary which this reply almosted ended up in.

I know more now than I previously did because I did have several people assist me and I had a witness who had not seen one of these seizures previously who saw this one.

Now to do some Diary Writing...

 

[whiteraven]

In doing further research I had learned about a potential testing (Video EEG) among a few other diagnostic tests by someone who can evaluate and identify Epilepsy versus Non Epileptic Seizures. Unfortunately I would need a referral to have this testing done and would need to travel a few hundred miles to have this testing done.

Yeah, so I had this done a number of years ago. While it does pick up seizure activity on the surface, it doesn't always pick up that that occurs deep within the brain. Plus, you have to have a seizure during the monitoring (or you used to) and if your seizures are stress-induced, being in a hospital environment may reduce your stress and you won't have a seizure.

 

[Lucycat]

I have to question if the current therapy which is behavioral health by a Psychiatric Nurse/Social Worker is not effective

If this is your first seizure in a year - after previously having more frequent seizures, then I would suggest the therapy is being very effective. I understand that you have NON-epileptic seizures, but even those with Epileptic seizures and on the strongest medications can still have breakthrough seizures. It makes perfect sense to me that there will be occasional NON-epileptic seizures too, until or unless you are cured of the ultimate cause - your PTSD!

As for the tachycardia - we all have an increased heart rate in times of stress, so that is to be expected. Not sure why you would have been dehydrated though - were you aware of drinking less or not needing the toilet? I would think that knowing this was the store where you have had seizures before would be a significant anxiety trigger, and I am not surprised it happened again.

It does NOT mean that you are not getting better.

 

[SeanCharles]

Update: January 9, 2019! I just arrived back home after a 1 and half day trip to the city in which my hearing occurred. First I did amazingly well keeping my cool when I was chewed by the ALJ for seeking a continuance due to missing documentation including the seizure records. I was given 2 weeks to have the records sent to the judge.

I know from a "trusted" observer who was with me (not my mom, a former supervisor) that what I was questioning until this seizure did answer which this: Based on my eye activity which in ways I was hoping was true is that if the eyes roll back into the head instead of closing which differentiates a non epileptic seizure from an epileptic one is the eye closure on Video EEG indicates Non Epileptic. During my seizure my eyes rolled back at one point during the unconscious phase.


My onset for seizures begins 1996 and then 2013 and now 2018 with possible smaller seizures mixed in. The small seizures are break through as the neurologist I saw that refuses to continue seeing me called them too. I am going to do some extensive diary writing!

 

[SeanCharles]

Update: 1/10/2019 I picked up some records today that I had not seen previously which are the EMS (Emergency Medical Services) Ambulance reports. In so doing, I now have puzzle pieces which are some of the answers I am seeking.

 

[Tinyflame]

Do you have a cervical vertebrae injury @SeanCharles ? I have a relative with a C3 injury who can have a seizure only when maintaining a position looking higher up- like a grocery store, roof, library shelf.

 

[shimmerz]

I recall while I was sorting out this PNES stuff for myself years ago. For me, it was overwhelming and confusing. And this whole process of getting medical care for it was impossible here in Canada.

I hope that you are able to come to a concrete resolution on this and that you are blessed with a good support team along the way.