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Seizures/Shy-Dragers

Seizures/Shy-Dragers

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I just had the hell scared out of me. Do Parkinson people has seizures? My husband had just got up, came out of the bathroom, I could see he needed assistance even though we have a rail for him to hold onto, I got him about half way down the hall to his chair and he stiffened up, got ahold of the rail with both hand, he had such a tight hold his hands were purple even up into the wrist, etc. He was looking up, his eyes were opened, but the eye balls were giggling up and down, I waved my hand in front of his eyes and he didn't blink or anything. Said his name, no response. Finally I got his hand pryed off the rail and lowered him to the floor, like lowering a board to the floor. He layed there a few seconds and came around. I call 911, they came out and by the time they got here he was able to get up and I helped him to his chair. He was alert then and could answer all their questions. While he was on the floor I asked him if he knew who I was and he did. The paramedics took all his vitals and he was fine, no stroke, no heart illegalarities. Only they and I can figure is he had some sort of seizure. Is this normal? I called his neurologist that is 300 miles from here and waiting for them to call back. This is the first time this has happened.

I do know he has fallen a couple times this week and that hasn't happened in weeks and yesterday he was unusually tired, whether it is related or not who knows.

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But my comment is that you should (if you haven't already) follow up on the potential sodium-level problem -- don't underestimate it. My mom went through that years ago. The doctor (ex-doctor, now) missed it completely (an e.r. nurse was the one who picked up on it -- thankfully) -- attributing the symptoms to PD and old age.

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Sorry to hear about the problems with your husband...I'm wondering, how long was it before the EMT's got there? What you are describing sounds very similar to the "spells" that my husband has experienced which has been diagnosed as vaso-vagel syncope or orthostatic hypotension. My husband's eyes roll back in his head, his color changes and he loses consciousness....but often before help has arrived he comes back around. For him it is a rapid drop in blood pressure which comes about after going to the bathroom (decrease in vaso pressure) or after eating a big meal (increase in vaso pressure). Since he has had a heart attack and triple by-pass he must go to the hospital each time to be absolutely sure that it is not another heart attack. He has had 6 of these spells, 3 of which have happened in restaurants, and all six happening after he has gone to the bathroom. Hope things are better now.

Forgot to tell you that Lopressor is the drug that my husband takes now and he has not had a spell since July of 1999. In the general population Lopressor is used to treat high blood pressure, but the neurologist that my husband saw while on vacation in Florida in Jan 99 said that in PD patients the Lopressor acts instead as a blood pressure "leveler".

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I'm sure that must have been very scary what happened with your husband!! In response to your question about PD and seizures we've been told yes. My Mom has PD and started having seizures about 6 months ago. The neuro said it's like an electrical misfiring of the brain. She now takes Dilantin and they are currently under control. Good Luck, Thank God you were there for him so he didn't fall and seize!!

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Please remember to tell the doctor about his falls. Did he fall and hit his head? He could have been injured in a fall. If he hit his head he may need to get a CAT scan to rule out an injury to the head. Don't just automatically assume that this is PD. Has there been any change in medication recently? Some medications can cause seizures.

Sure hope you hear from your doctor soon. We were going to a MDS that was 2 hours away and we changed doctors because it was just too far to go especially when your PWP isn't doing too good.

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This is an exact description of what can happen if my husband stands up too fast and his BP falls too fast. It is more likely to happen if his sitting BP is not at least 170/90. When he was in the hospital before the Shy-Dragers was diagnosed, and they had begun to give him medication to raise his BP, it happened every single time they tried to stand him up..After, he was somewhat stabilized, an aide who had not seen him for a few days was told to take him to the shower. his reaction was, "Not Me." The last time this happened was several months ago when we tried to cut down on the Midodrine because his sitting BP was running 200/100. he stood up, walked across our living room, got rigid, shook, eyes rolled back, and passed out. he was out for 15 minutes which our Neurologist described as "a little too long to be out" and had the paramedics transport him to the Hospital where they found nothing new wrong.

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I called the neurologist at Virginia Mason as soon as I knew my husband was o.k. Explained to his assistant what had happened and to please tell the doctor. He has yet to call me back. I realize this may not be important to some drs. but it sure as heck is important to me. As for falling, he didn't, I was assisting him to walk down the hall when it happened and was able to pry his hands off the rail and lower him to the floor. Needless to say I went to the chiropractor today, think I am paying for his new car! Right now our neurologist, the one who didn;t return our call, is 300 miles from here. I am at my wits end on which way to turn. I do know this whole week its almost like he was before he was put on the carbadopa/levadopa.

Anyone have any ideas? Will this pass?

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Some weeks ago my husband went through a phase when it looked as though his meds were not working at all. He had a touch of cold/flu, no fever. Things went back to normal after about 10 days when his cold improved. As for seizures, anyone PD or not PD can have them. It may be useful to check his BP often because with PD, the BP tends to play the yo-yo. PD meds tend to lower the BP too. Hope things get better

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I just reread your letter and sent a long answer, but I do want to add something. Be very sure you are not dealing with some kind of infection. Every time my husband has had an infection, especially a UTI, he gets much worse.

Also, after one of these episodes of passing out when he had a UTI, our Internist and our Neurologist would not release him to go home from the hospital. They said they would have me in the hospital with a broken hip if I took him home by myself again. So, he spent a month in a Nursing Home where they had a very hard time dealing with the blood pressure variations. I finally found a Nursing Assistant who I took to the Nursing Home to learn about my husband, and we took him home. That was four an a half years ago, and we have had full-time in home care ever since. Whenever my husband has stood up, he has had a strong man at his side to catch him, and he has had a good life. We have all gone camping in our trailer numerous times, and I have not had to be the one who does the lifting.

As you all know, we have been having Hospice come for the past five months. My husband went down very fast, and the nurse thought he was going, but he has rallied, and I do not know how long Hospice will continue. One thing they have done for us in addition to sending the nurse twice a week and a girl to help with the shower (Arnold can no longer do this alone), is to help us let go of trying so hard to get my husband better and to just let him go at his own pace. As a result, he is eating better and usually taking his medications. He no longer can walk alone or feed himself or even talk very much, but he seems at peace, and that is what is important. He has a very strong heart, so he may go along for a long time, but I no longer really have to fret about it. Much of my grieving for the loss of who he was is past.

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What is Shy-Dragers?

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First of all, Shy-Drager Syndrome is one of the Parkinson plus illnesses, also called Multiple System Atrophy. My husband had typical Parkinson's for almost twelve years before he was also diagnosed as having Shy-Dragers. When he started passing out at night when he went to the bathroom, the rather dumb neurologist we had at the time said it was PD balance and suggested giving him Benedryl at night to help him sleep. I put the urinal by the bed so he wouldn't get up, and the problem seemed solved for almost a year. Then he started having these little seizure activities sometimes when he stood up, but they would get better if he sat down. Then he passed out a couple of times while we were on a trailer trip, and I told a friend that we might go home early because of them. I left him alone in the trailer for a couple of hours one day and came home to find a note on the door that he had fallen and hit his head on a cement table, and they had taken him to the hospital in an ambulance. At the hospital, it was discovered that he had cranial bleeding from the fall, but that did eventually clear up. When they were unable to stand him up without the seizure activity and passing out, a Cardiologist was called in who diagnosed Shy-Drager Syndrome and started him on Florinef and salt and lots of water. After ten days in the hospital, he was again walking and could go home. The dumb Neurologist at home decided to put him on Dilation, but the symptoms continued. This doctor said his BP had always been normal in his office! But he had always taken it seated. The way you tell about Shy-Drager is to take it seated, lying down, and standing. my husband's is pretty normal sitting. Standing, it can drop to 60/30 or even be unmeasurable. Lying down, it is routinely 200/110 or higher. The fifteen minutes passed out episode came when his seated BP was 200/100 for a while, and the doctor thought perhaps he should cut back on the BP raising medications. The result was that he stood up, walked across the floor, shook, and passed out for fifteen minutes! In ER his BP went from 137/120 down to 170/100 as I watched the machine. his present Neurologist came in, looked at all the other normal tests, and said, Let's not take his BP any more; put him back on the BP raising medications."

I will forward an article from the Parkinson's Foundation about MSA and Shy-Dragers if I can find it. Just remember, it is very rare and many doctors have never even heard of it, much less seen it.

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