She’s not named Freud, but I’ve got a meeting tomorrow morning to chase this rabbit down its hole. I had a basic interview with someone at the clinic today and they all seemed like nice people so I’m trying to remain optimistic and maybe a little hopeful about this.
I haven’t mentioned recently recurrence of seizures, but last night I had one. The best part, and may be this is a kind of morbid humor on my part, was that it was in bed after Tess and the baby had already fallen asleep. I’m certain it was a seizure however, because when I came back to myself my head was pressed up against the night stand and I missed a pretty significant portion of my audio book. Still no real idea of how long it was.
Right now I’m having them every four to six days or about once a week. I usually know when they’re going to hit me because I usually start shaking in my hands and head and then it feels like I’m in a tunnel or underwater. And I always feel dizzy or like I can’t control my eyes and they’re looking around independently without my input.
Recently there haven’t been that many stressors, but maybe I’m missing something? The one before last night was at my folk’s place I think last Tuesday. I recall that one really well because I had it right in front my older son Justin and I still feel like a heal about it. But we carry on, right?
Anyway, wish me luck with the shrink tomorrow, maybe this hare will lead to the Queen.
Well I can clearly rule dehydration out as a physical cause for my seizures. Even though its probably a good thing that I keep my fluid levels topped off finding religion in my water bottle hasn’t seemed to affect me good or bad when it comes to stress, auras or seizing.
The neurologist is pretty adamant that I need to seek and find a psychologist that can help me with some behavioral modification therapies. I’ve been pursuing mindful practices that should be able to help me alter this and still I’m recording when I’m experiencing symptoms.
So early Tuesday morning I left Gunnison with my friend Ben and headed down to Grand Junction. My objective was to spend some time with my oldest son Justin who was visiting on his spring break and to attempt to sit down with my Neurologist to get some clarity around what I need to do next.
Tuesday was ok, but I’ve been experiencing more symptoms in social situations. By early Tuesday afternoon I think I had had enough and while sitting and practicing some breathing and yoga exercises I seized. The rest of the day was sort of long and slow as I just didn’t have much energy.
Wednesday Justin and I rode down into town with my Dad. He needed some time to get some work done on his truck. I needed time to get my errands done and spend some time riding with Justin. We rode around town, got an appointment with the neurologist, and later went to see a movie with Justin. I was fine until we took Justin back to his mother. The shakes and auras caught up with me super quick even though the encounter was generally pleasant. Dad took me back up the hill and again I was wiped out even though my cousin.
Thursday Dad took me down to the valley and after my appointment we spent some time burning time waiting for Ben’s seminar to get out. No shakes, no auras. I felt more or less happy too. The ride back to Gunnison went pretty well too although later I found myself wondering if I said or did something that should have embarrassed me. I felt some anxiety of the drive and our conversations.
Last night this cold really hit me hard. I coughed myself awake most of the night and got very fitful sleep.
Today I worked on cleaning up my garage and getting it ready to organize my shop and office. My ski storage system is up, but after I completed this I was beat and took a nap. Again coughing didn’t help, but the rest was welcome.
The medication still wipes me out, but I also think its helping dull the effects of the symptoms.
1 – stop caring about things.
2 – stop taking ownership of things you are not responsible for.
3 – take time out for YOU.
4 – eat more tacos
What a freaky day! The morning went ok, I worked on getting things done on my bike. Spent some time taking recycling to the center and checked up on Zeno (which needs new engine mounts).
Around 11:00 I came home to fill out some paper work and make some phone calls. That’s when auras and the shaking got going. After a number of phone calls I went to the dentist to check up on my gums (the medication can make them swell). By the time I left, well hydrated none the less, the auras and shaking were down right annoying so I walked.
On the way home I stopped at a yoga center and ended up doing an session. Lots of water and a very restorative session and the shaking, dizziness and auras were gone. I actually felt pretty calm and even a little happy.
I worked some more on my bike this afternoon, had dinner with Tess and her mother and then packed for the trip to Grand Junction tomorrow morning. Only a little hand shaking this evening and I still feel pretty good.
No nap today but a boat load of water. The yoga wasn’t very stressful, but it really seemed to open things up and I felt much better when we were done.
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?