Hello All, I first of all would like to thank everyone here for all your posts, you have all been an inspiration to me in how you deal with this disorder, and the questions you ask, the answers you find etc.. I love not feeling so alone in this. The closest person to me on this chat is around 350+ miles away, so I appreciate knowing there are so many others out there that know what I am going through, and are willing to give their opinions, share their experiences and ask for help. Lets keep it going.
My question today is: Has anyone done an Ambulatory EEG, or an at home EEG machine that you have for several days to record the movements, PNES etc that you experience to compare it to a journal of what is happening during those time frames.
I was recently at my Neuro's office about 2 weeks ago, and I had asked her about the seizure like activity that I experience. Some days I many not have any, some days it is just a few back to back, the worst I have had was 42 within three hours. These PNES as they like to call it, kick my butt. My last EEG in office I did have 2 times where I started convulsing and even knocked the electrodes off my head. But my results came back normal somehow. When she heard that an average day when they get started can be around 12-20 times back to back, and usually occur during the times of when I go to bed, and when I wake up in the morning. Now when these happen, I have not figured out a trigger, other than a dream or mind racing, but that is not the same every time. These seizures as I call them usually hit out of the blue, no warning really except for my body doing its regular exercise/gymnastic routine while I sleep. These times involve Myoclonic jerks, Dystonia, flailing around of arms and legs, curling of harms/hands, and legs/feet, its hard to breathe, my face and neck are being pulled in different directions, I do backbends, curls, sit ups, twists and turns (usually in different directions throughout the body), arms and legs hold up in the air, absolutely no way of communicating except for small grunts of pain sometimes to my husband so that he can wake up and pull me back on the bed before I fall, or he finds me on the floor. I do have to laugh at my dismount of bed though. It is not usually graceful, and can be a very slow due to the dystonia and jerking that goes on in my body which slowly inches it's way off the bed and onto my head on the floor. I am trying to perfect that movement, but have not had much luck yet. ha ha
Personally it is easier to deal with these things in bed than when they happen in my small shower, it is not easy to help me out until my body says loosens up and allows me to be pulled up and out.
These seizures take everything out of me, my energy, my thinking is messed up until I can reboot in a way, moving on my own is a joke, and talking is not possible for quite a while, and it leaves me in pain throughout my body because of the muscles tensing and tightening, as well as in my head because my brain is being shaken so much.
I would love to know if anyone else has done this test, and what your findings were, what it was like, and if your doc was able to provide anything to help you.
I hate to even say this, but I hope that my brain and body decide to throw a party and give her a show through this machine so that she can see what is going on with me during these episodes. Thus far, no medication tried has been able to help, so any suggestions of that would be most helpful to try as well.
Thank you all, have a fabulous day, and God bless you and your families for dealing with this fun disorder.
Cheryl
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1) Sleep deprivation. These attacks are physically exhausting. I tried a few times when I was NOT having an attack to see if I could reproduce the manifestations. I could, but I couldn't sustain them for more than a minute. And yet when having an attack, it could go on for hours. (Yes, I lost weight from all that enforced exercise. Ha.) Anyway, by the end of a day, the manifestations will ease up and often stop simply because my body is too exhausted to continue. However when I'd finally turn out the lights and try to sleep, they start in again and I'd shake myself to sleep taking fifteen minutes to an hour. Out of all that I discovered that if I starved myself of sleep, I'd have fewer attacks because my body was to tired to tango.
2) Just say no. Avoidance. If a thing, place, person or activity sets me off...I now avoid it. Can't do that all the time, but by severely curtailing stressors, I have more time to rest and recuperate. "Doctor doctor, it hurts when I do this!" "Then don't do that!" Ahem.
3) The occasional benzodiazepine. One .5mg of Xanax will stop the worst PNES attack within 45min to an hour. But it knocks me out (sleep) for three or four hours, then I wake and it starts all over again. Not ideal. If however I'm having IBS one .25 xanax will stop it and it won't put me to sleep. Workable. One .5mg of Ativan takes about 45 to an hour to kick in and I will have hours of functionality with no sleepiness. I try to limit pilltaking to one a week (on average).
I have done the Xanax on my hardest days to calm them down too, but knocks me out. I have recently stopped taking them even a low dose because of how addicting they can be. Now suffering from daily headaches from with drawl.
Its crazy how it all works out, and what they do to you. Hoping this might bring some answers. Best of luck to you with yours. I will have to ask about ativan. Have not tried that one yet.
The potential for abuse varies from person to person. You need to know how your own body reacts to things.
When I was having the full blown PNES grand mal seizures 8-9 hours a day, I lucked into a doc who prescribed three 2mg Ativans a day for a couple months. It help break the back of the worst. We tried to wean me over to buspar, but it didn't seem to work. I found out some months later when I tried buspar all by itself that it actually causes shaking in some people. I'm one of those people. Sigh.
I'm waiting in line to try some neurobiofeedback in the very near future. Fellow I talked with has had some success with cases like mine. Willing to kick that tire but am not overly optimistic. Too many failures in treatment to be anything but guardedly hopeful.
That reminds me of my last ER visit. They could not get seizures to calm down enough to put me in CAT scan. They held me in hallway with sheets tucked around me like straight jacket but head would jerk up violently.
Finally, I saw one nurse come up with two separate shots of Ativan for IV. The first one did not phase it. But the second one did the trick.
I remember that time because they all kept laughing when I told them my name upon being asked. I never did know what was so funny....
I thought Dan was a pretty common name. Never would let them touch me with Ativan until the cat scan episode. Even morning after neurosurgery, I told em to ditch the morphine. I not a big drug user.
Judiciously. Ha. Had a therapist who kept pushing me to take them more often so I'd have better quality of life. Just no. Only when absolutely necessary. Like for the recent root canal. Shaking like an epileptic is counter indicated when there's a dentist drill your mouth. Ahem.
Please keep me posted on the Neuro feedback. I am curios about it.
Cheryl.
Having met you in person, I will say this again:
You are an extraordinary, amazing person. Your struggle is beyond difficult. I pray you get the ambulatory EEG or some type of video taken so doctors can actually see what happens to you particularly at night.
Like Nurmi said, there are things he tried that worked including some low dose meds. I think you have to get some one in medicine to actually see you in action.
Caution though. When I did video of both Andrea and me in convulsive seizure, the specialists looked at it and said what the heck is going on here. They had never seen anything like it. Looking back, I think they ran from us instead of investigating. I regret not demanding more investigation.
Please see if they will do the ambulatory EEG. I am always a follower of what you post and the actions you take.
No medals for the night time Olympics please. We would rather you get some sleep!
Much love from Dan, Tricia and Andrea.
Let us know about oil paintings. Uh-oh, gotta see what the nurses want now about this heart thing. Bye.
I get to do the eeg this weekend. It will be interesting to see how it goes. I'll follow up later with results.
I'll send pics of oils.
Oh and I have taken several videos off my phone. I actually made a DVD for my disability people because a picture is worth a thousand words. I keep taking them when I can do I have proof.
1) Diphenhydramine, 25mg. An ordinary antihistamine, yes. Believe it or not. It has sedative properties and I've found that if I recognize the very early stages of a PNES attack, I can sometimes short circuit it before it gets out of control. Once the attack is in full swing, you can forget the antihistamine and have to go directly to the benzodiazepine. Taking lots of antihistamines can have its downside, too. Every med has its cost in side effects, after all. Finding ways to short circuit an attack is very important. If you wait until it takes over you have no end of trouble beating it back. This is true with painkillers, too. Known fact that if you wait until the pain is huge, it takes more painkiller to budge it. That's why they tell you to take them on schedule and not wait until you think you need one.
2) Deep breathing or counting breaths. Lovely technique that works in the early stages of an attack. Not so helpful when things are out of control.
3) Hypnosis. Kicked that tire and it was a lovely experience. But again, it was great when the manifestations were in the early stages. Wouldn't work when out of control. Important to communicate with the practitioner what imagery is not wise. Mine tried walking me down into a warm tropical pool of water. I can't swim and hot humid air sets off my claustrophobia. Hehe. Literally "a bad choice of words"!
I suffered for years with myoclonic siezures and dystonia..Now it's changed to pain though I still get myoclonic jerks when falling asleep...Ativan never worked for me but one that did was Zanaflex...It makes you sleepy but it's better than having movement and it's not addictive.
No one has offered a zanaflex to me. Interesting. Just been reading up on it. I avoid muscle relaxers as a rule because they shut down your plumbing. They do with me anyway.
One other technique that MIGHT be helpful is a variation on a yoga thing I learned years ago.
You tense every single muscle you have access to and hold it as strongly and for as long as you can. Ten to twenty seconds perhaps? Longer? Hold your breath too (which if you're crunching your torso you'll already be doing). Then relax. Repeat this a couple times.
It seems to grab the attention of your unconscious and short circuits its temper tantrum. It probably won't make the PNES go away, but it could minimize the manifestations for a bit.
It'll raise your BP and your face may turn purple (hehe) but it can help. I've recommended it to others and they've had some success with it as well.
My husband has had an ambulatory EEG and had 5 seizures whilst wearing it. However, no activity showed up and we were told that this is because they are not epilepsy and therefore cannot be traced. My husband had the ambulatory EEG to see whether his seizures were epilepsy or non-epileptic. Hope this is helpful Angie
Thank you angie, it will be interesting,to see what if anything will show up. You would thing it has to show something because there is some type of activity going on. I am glad the person that will be reading it is my neuro, and not someone else. Crossing my fingers. She has seen it on video too. Thank you though. Glad to know someone else has tried it.
I did one when I was told that i suffered from drop attacks before I got the right diagnosis and that drop attacks were just one of many symptoms. Sorry to say but nothing abnormal showed up, which I suppose is what my Consultant (Jon Stone) says. Everything is physically fine on examination but there is just some software malfunction and not enough research going on to explain it.
I am sitting here on my bed because one of my dogs jumped up to see me and I staggered and ended up kneeling on the floor and my legs just paralysed. And they still are. I can experience paralysis for 24 hours after a seizure. I get about 2-3 per day lasting 2+ hours and share your agony at not being able to communicate that some of them are incredibly painful - like you've just finished a marathon and been told to turn round and run it all again.
I am so sorry I haven't had a chance to reply for so long. Oh my gosh, I am so sorry that happens with your seizures. That would truly be miserable. I have been fortunate enough to have a short time after seizing (I call it my "re-boot" time) where things freeze up, slow down etc.. but yes, it completely wears you out like a marathon. sucks really. I hope they can find some help for you. I did finally get a small answer on my testing that they did. Right now after a very sleepless night, and being 3 am I had to just get up and do something to maybe help me to get tired again. So I am on here like a crazy person. ha ha. I am really not sure what to think about the short answer I received. I would say I am in shock, but really I think kinda numb sums it up.
I received a quick email last night from my Neuro telling me that she finally got a chance to read my scans etc. from the 3 day ambulatory and amazingly enough, she did find that there were some forms of adult onset epileptic seizures mixed in I am guessing with non epileptic ones. She is going to put me on some meds on Tuesday to see if they will help in addition to another med she had me on. However I am struggling to get that medication right now, and only have a few more days left of samples. I believe the reduced price for a months worth of this medication after insurance is going to be $426.00.. without insurance it would cost around $1400 a month. I am just sick. There is no way I can afford that, and am worried about changing the medication too. When I started this one, I started off low with 200 mg, then went to 400, then 600, working up to 800. Within the first few days of 800 I started having adverse reactions to it, and found myself trying to hurt myself after falling in the shower. Scared the crap out of me. I immediately backed down to 600 where I knew I could handle it, and I have stayed there since then. However my insurance has changed, and so has the price. UHG. stressed out. Now to add another medication. I need to look it up and see how much that one is going to cost.
However if it can help me out, I need to try it right? After last night and this morning, I am willing to try anything. I did some light gardening, which felt great last evening, then ran to grab some dinner because I didn't want to cook. I was about 45 min. late on taking the medication I take, and my neck during my drive started having fun jerking around. Talking was difficult, but was finally able to say about two words to get dinner along with pointing, and came home, jerking all the way. I pulled in the drive way, and parked the car. My hand started jerking, which then sent me in to having 5 seizures in the car. I was finally able to honk the horn, and my husband came out to help. I got inside, and had 2 more in the kitchen. Sat down at the table and had another one. Fortunately I was able to lay down after that, and fell asleep for a few min. which gave me a reboot time, so I was able to slowly get up and move around again, but no talking. When I went to bed, I proceeded to have 3 more for the night at least until Midnight. Then after midnight I have had 4. So here I am at 3 am, not sleeping, feeling like crap, but able to type thank goodness. I need a voice somehow.
I hope that they are able to find some answers for you. This is not fun in the least that is for sure.
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