So my diagnosis is for Psychogenic non-epileptic seizures (also known as PNES). This morning I did a lot of reading, and it appears that pretty much anything that’s a non-epileptic seizure can and will land you this diagnosis.
Yesterday, evening in particular, was one of the worst since getting out of the hospital. After taking my evening dose I had the shakes and dizziness really bad. Sleep was a blessing since I lasted hours and I don’t think I could stand too much more of the bobbing head and shaking hands.
My investigation this morning as well as an off hand comment by my friend Carol got me to thinking about diuretics, hydration and my long list of symptoms. This cold has had me trying like mad to dry out my sinuses. I have been mixing these diuretics with others like caffeine and the Keppra while not trying to compensate for the loss of fluid. My leading theory is that I’m chronically dehydrated and this may be resulting in Hypotension.
The hypothesis is that if I avoid diuretics and push fluids I’ll be able to manage some of the more profound PNES symptoms. Today I’m going on two and a half gallons of H2O and feeling more or less like my old self. This evening I had a short bout of the dizzy, and I’ve had a couple moments of forgetfulness, but nothing like last night.
I’m going to try this regimine for a week and record my symptoms and their intensity to see if this might help. I know what I want to avoid and what I need to test in an attempt avoid it. Let’s see what happens.
In other news, today I made my bike rideable once more. Once again I have some mobility. Still some minor things I need to take care of, but it’s quite rideable and will only get better from here. Maybe an overnighter is in order?
7 thoughts on “This Week’s Self Test”
I’ve noticed, from various forums, that many people with PNES struggle with hypotension (myself included). After much deliberation, I am going to start a regimen of short acting pseudophed twice daily (when I get up and then 4 hours later). Pseudophed causes vasoconstriction and increased blood pressure. Have you found anything that helps your seizures?
I too tend toward abnormally low blood pressure, but the pseudophed trick never worked for me.
The pseudophed really let me down *sigh*
It’s been over two years since my last seizure, and I have to say that getting a Colorado MMJ card was probably the best thing I could have done. Soon after that I stopped having them.
I’m laughing at the MMJ card, not because it’s funny, but because my grandfather has been nagging me to try it after he watched a 20/20 episode that supposedly cured an epileptic girl.
Question 1: How long did you have your seizures for?
Question 2: Do you have to smoke this marijuana, and if so, how often? Don’t judge me lol. I’ve only dispensed it as a capsule (Marinol) for chemo patients.
No judgement involved, honestly when it came to this I thought those days were long gone for me. Anyway, I had been having seizures for nearly two years (was about 2 months shy when I finally got my MMJ card). The average number per week changed, beginning with several per day to several per week, but they had become a regular part of my life. I couldn’t drive. I couldn’t work. I couldn’t be left alone with my son for any length of time. There was just a lot I couldn’t do. In addition to all of that, the drug cocktail I was on was breaking down my resistance to just about any and all infection. So on top of being sick with seizures I was just plain sick. In and out of the hospital all the time for just about anything you could imagine.
Funnily enough it was a series of stories on the internet and the 20/20 episode that sent me looking at this as an option (notice I’m not laughing either). At the time we lived in Colorado where MMJ was legal and we had a dispensary in that little mountain town. Because I couldn’t drive I arranged a Skype call with a doctor in Aspen on the far side of the range of mountains from Crested Butte. She interviewed me, we talked about my symptoms, discussed her experiences with other seizure patients, and her expectations for any recovery if it happened. Ultimately I walked away about $200 lighter, with a red card in the mail. None of the doctors in the valley where I lived would even talk to me about the card.
I realize that my “evidence” is purely anecdotal. The simple fact of the matter is that no one really knows a bunch of stuff. We don’t know why some people have PNES episodes, for instance. We’re not sure why some drugs help or even how they work in the brain (Keppra and Wellbutrin spring to mind). And no one who has ever tried it is certain why medical marijuana still has such a terrible stigma attached to its use.
Be that as it may, within a week of getting my first ounce the number of episodes I was having dropped to zero. Add to this that I tapered off the cocktail I was also prescribed and stopped catching pneumonia and every other bug that swept through the valley. In the first month I gained back about five pounds, which was a phenomenal reversal for me.
Two months on I went in for my last vEEG and spent the whole week sitting in a hospital room not having seizures, despite every attempt being made to kick one off.
I don’t usually smoke it. I’d much rather use a vaporizer or ingest it for a couple of reasons. Right now I only use it when I feel symptoms coming on. For me this means a dissociative fugue, memory lapses, very rapid mood cycling, and auras both visual and audible. There’s a part of me that thinks I may be waiting too long, but I also don’t want the drug to overwhelm my life. These days my consumption rate is *very low*, maybe once or twice in three months if that that much.
Additionally, you’ll want to experiment with the different varieties, THC content, and ingestion methods to find out what will work for you (if anything). Right now my go-to of choice is Romulan (which is an indica with some hybrid drift), it’s renowned for deep relaxation.
Damn it! Now I sound like a pot head which I am not. I think the common misconception is that I’m excited about being lazy, unproductive, and smoking weed; not that I might be enthusiastic by a life spent not choking on my own tongue. These days I am allowed to drive, I take great pride in being a stay-at-home dad for my youngest son, and I write, run and paddle when I can. Last year I wrote a number of short stories and self-published a novella all while living with the seizure monkey on my shoulder. The fact that I have any independence at all or control of my own head is proof enough for me, weed has therapeutic qualities.
Now you’ve got me really laughing over the “seizure monkey on my shoulder”. That is an excellent descriptor and I’m cracking up. Are your short stories as amusing?
Anyway, thanks for sharing more of your PNES trials and tribulations. I will continue to ponder this marijuana treatment. Similar to your previous seizury self, I can’t work (currently on FMLA), can’t drive, and can’t be left alone with my 1 year old son. As a previously fully functioning adult, this sucks, and I’m getting desperate to be my active self again.
Considering that I am both exhausted and exhausting my resources, this ‘herbal’ alternative might be worth persuing. Not really sure on the legality of it in my state, but I guess I have a bit of reading up to do. Nonetheless, I’m already imagining the regimen I’d put myself on: Chew and swallow (1) brownie by mouth three times daily as needed.
Thanks for all the tips, and I hope you won’t mind if I pester you down the road. I stumbled upon your blog during a late-night google fest, and I appreciate you answering my original sleep-deprived comments.