Staring Episodes?

[Reef Diver]

Hey everyone... haven't stalked this board in ages.

I was diagnosed last summer after running across this board. Went to school in the fall and things became terribly worse. Everything was painful. Touching my hands felt like burning. Any type of shoe would lead to bruises. My scalp was so dry it was always cracked and flaking. My eyes bagged. I barely had the energy to take a bath (forget a shower). The two-space different between handicap parking spots was enormous. I was room bound. I dropped to 7 credits in college (normal class is 3 credits, so 12 credits is minimum full time load) one of which was online and one of which I never attended except for exam days. My POTSy staring episodes that had some minor twitches grew. I was having daily full episodes even though I was entirely room bound. I tried to study inbetween all the pain and seizure-like episodes.

The episodes started with the feeling of slowing down, followed by staring and blurring vision, then unresponsive staring, then twitching hands/sometimes jerking eyes, and sometimes finally full blown (laying down at this point) clawed hands jerking over my chest with straight legs. These episodes would last upwards of 20-30 minutes and I would be extremely lethargic afterward. Saw more doctors, no help there. Had a long one after a spinal tap while waiting to be picked up and the doctors freaked out at one of my normal 'episodes' and rushed me to the ER. The ambulance techs thought my movements and overall episode was very unusual and dangerous. Too bad the ER doc didn't see it, gave me the 'nuts' vibe and sent me home. One of the ambulance people and spinal tap nurses followed up with me outraged I was told everything was normal. No help though.

Caught a case of the flu and strep throat at once and was put on antibiotics and antiviral. For having the flu and strep throat I felt Great. Really, I woke up the next day and told my mom (who flew out to help me) "Something's different. Something's changed."

Well, it did. No seizures from that day on. My bruises began to heal. I was able to wear sneakers. The burning sensation lightened. I went from having to Always take a bath too maybe taking one bath total since November. Something was different. I was starting to get better. Too bad I had Mayo appointments in the next couple weeks. Without episodes for them right then and there they were no help. No idea why the seizure-like episodes had originally started, no idea why they stopped, no idea if they would come back or what I could do to stop them. My boyfriend took good care of me and I was able to drag myself through the rest of the semester. It felt like death but college is so important to me.

I rested over Christmas break and come Spring I went back to college. I didn't want to give up. Compared to how fatigued I was before I felt like I went from being completely and totally disabled to having a life back. Okay, sure, I wasn't normal. But every day wasn't filled with overwhelming pain. I signed up for 13 credits. It gave me class every day a week. I was so fatigued and tired. All I could do was go to class and dance a little in my room. The fatigue was so great my parents lended me a car to drive to class otherwise I would never have been able to finish. Every ounce of energy was for class and schoolwork and some dance. I still had episodes but no clawed hands and seizure-like things. I don't know how I was able to make it. I was burnt out after the previous Spring of illness, Summer of fatigue and doctors, Fall of seizures, and now this?

Thank god it's summer right now!

I came back to this board for advice on how to handle my current episodes. When do things get dangerous? When should the people around me call for help? Sometimes emergency responders seem to do more bad than good. Not to mention the sheer amount of cash that goes into one of these trips. My episodes now consist of me slowing down. I become dazed, my eyes glaze over, my vision blurs, and I become very tired. I stare off into space, sometimes shifting my eyes from person to person really slowly if they are talking to me. Sometimes as these come on my head will turn in a repetitive motion to the left (in the episodes back this last fall my head would like to turn to the left to stare- it likes the left) I go almost completely non-responsive. Sometimes I realize people are asking me something like 'Are you okay? Is this normal?' but I never respond. I can hear talk but often don't know what is being said. Or I won't even know they are talking. My memory and awareness of what is going on is foggy. I'm told I look like a glazed over doll staring past everyone. I don't move, except sometimes my eyes do a half-circle to the left I'm told (I just see blurry vision.) I had some old friends witness it for the first time on Friday and apparently it is very unnerving and stressful to watch happen. Thankfully my sister was home or they said they would have called 911. I'm still feeling the ill effects of Friday's episode.

Edit: Oh, flushing too. Had flushing on the face and chest (my driver's license is a hoot!) since the start. This time this last Friday even my thighs flushed out to a nice hot red color. That was new.

I've discovered wine is the answer. They have to get wine, shove the straw into my mouth, and tell me over and over to drink it. Otherwise I won't move a muscle on my own. Within a couple of minutes of the wine my vision will return, I'll start focusing my eyes on people, and I'll start talking again. Without the wine these episodes can last upwards of an hour and a half or more from start to finish. Once an episode begins I won't ask for help.

Right now I'm on beta blockers morning and night, Adderall XR in the morning for ADD, birth control to not have a period, and a glass of wine at night around 7pm. I once read one of you all drank wine as a preventative. When I was having episodes previously sometimes I would take codeine or something similar to prevent them. Wine is fabulous! The speed at which it returns my cognition during one of these episodes is amazing. But at what point are these episodes dangerous in themselves? Any idea what they are? They are very much like my pre-seizure episodes so I'm worried my progress is about to hit a relapse which I'm not sure I could handle again

Thanks everyone.

[sue1234]

Have you ever had your blood sugar tested in the middle of one of these episodes? You should be able to have them check it at the campus clinic.

Especially with ingesting wine and having such a quick response. Those are classic low blood sugar symptoms, all of them, so it might be worth checking on.

[Reef Diver]

Have you ever had your blood sugar tested in the middle of one of these episodes? You should be able to have them check it at the campus clinic.

Especially with ingesting wine and having such a quick response. Those are classic low blood sugar symptoms, all of them, so it might be worth checking on.

Thanks for the idea. There's no way I'd be able to make it to the campus clinic when one of these starts, or even call. I'm home for summer right now. I've done some home blood sugar tests before the POTS diagnosis but it's definitely worth checking out any possibilities again. It seems its only been related to food insofar as if the meal was heavy or not.... Which I'm guessing is POTSy fatigue due to digestion combined with the other activity of the day (such as company) which can bring one on. Things keep changing though as you as know with dysautonomia, it's worth a shot!

[houswoea]

I used to get that too, my roommate brought me to the ER three times because of it, but no one ever could figure out why. Now that school is over and I'm home for the summer, things have cooled down. Plus, midodrine helped tremendously... no more twitching...

if I figure anything out, I'll let ya know!

[issie]

Have you ever had your blood sugar tested in the middle of one of these episodes? You should be able to have them check it at the campus clinic.

Especially with ingesting wine and having such a quick response. Those are classic low blood sugar symptoms, all of them, so it might be worth checking on.

Thanks for the idea. There's no way I'd be able to make it to the campus clinic when one of these starts, or even call. I'm home for summer right now. I've done some home blood sugar tests before the POTS diagnosis but it's definitely worth checking out any possibilities again. It seems its only been related to food insofar as if the meal was heavy or not.... Which I'm guessing is POTSy fatigue due to digestion combined with the other activity of the day (such as company) which can bring one on. Things keep changing though as you as know with dysautonomia, it's worth a shot!

Did they do seizure test on you? There was a House epiosode, where a nurse did things and was in a type of a trance but didn't remember what she did. It was some sort of eplisey.

Also, have you paid attention to what you've eaten, to see if there are some allergies going on. It could be a real bad reaction to something too.

[lieze]

My guess would be see if you can get into a neurologist if you haven't already.

I just don't see a lot of assistance coming from the ER trips either unfortunately.

It is an expense and by the time we get there the worst of our symptoms are over and we do kind of get that look.

[issie]

Look at the thread on What causes Brain Fog. May be part of the issue.

[anna]

It seems to be standard practice, here in the UK that with episodes like this neurologists recommend a video diary, any chance you could get someone to record these episodes for the next few weeks?! Most times a good neuro can have a good idea of what is going on, when they watch the episodes for themselves.

Have you looked into Narcolepsy and Catoplexy? Does any of the following sound like your symptoms?

What is narcolepsy?

Narcolepsy is a malfunction of the sleep/wake regulating system in the brain which until recently was of unknown origin. Its most common manifestation is Excessive Daytime Sleepiness and sleep attacks.

The other conspicuous symptom is a sudden loss of muscular control triggered by amusement, anger or excitement which is called cataplexy.

Other symptoms of narcolepsy are:

?Temporary paralysis on falling asleep or awakening (sleep paralysis). The periods of paralysis are usually brief - a few minutes - but can persist for up to 30 minutes. Episodes of sleep paralysis may alarm patients, particularly those who experience the sensation of being unable to breathe.

?Hallucinations - vivid images or sounds - on falling asleep or awakening (Hypnagogic and hypnopompic hallucinations respectively). These hallucinations frequently combine elements of dream sleep and consciousness and are often very disturbing to patients.

?Moments (but sometimes extended periods) of trance-like behaviour in which routine activities are continued on 'auto-pilot' (Automatic behaviour).

?Interruption of night-time sleep by frequent waking periods, marked by quickening of the heart rate, over-alertness, hot flushes, and agitation. This disturbed sleep can contribute to a feeling of tiredness in the morning.