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Neurology (Expert Forum)
long positng - possible stroke?
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long positng - possible stroke?
by Deltha Myrtle, Jul 01, 2001 12:00AM
I am a 42 yo female w/ a history of small seizure-like events since my early 20’s, during some of which I bite my tongue during my sleep – mostly jerking episodes of my r side and/or times when I might sit and not be able to move. I was diagnosed as epileptic and treated w/anitepileptics by different neurologists (I moved a couple of times) until I made a decision in my late 20’s that the side effects were worse than the episodes, since the episodes had never been controlled by medication – even tho more than 4 had been tried. I had never had an abnormal EEG MRI or CAT scan. I do have a family history of strokes, migraines (I have these also), cardiac disease, and 2 relatives w/epilepsy. I am also being treated for hypothyroidism which also seems to run in my family.
Last summer I had an episode where I thought I might have had a stroke. It was the 3rd time last year I experienced this, and the first time it didn’t go away after I slept overnight. I had a cascade of jerking type episodes intermixed w/times where I was not able to move. I lost count at around 80 in a two hour period – after that things got kinda blurry and the next thing I knew it was 4 hours later and I was sitting at the kitchen table drooling. I kinda staggered back to my bedroom and went to sleep, and when I woke up I had numbness (kinda patchy in places) on the r side of my face, my r arm, and my r leg. I also was tingling sorta pins and needles all over that side. I know its stupid, but I waited 2 more days before I went to the Dr. hoping it would go away. I had an EEG 11 days after it happened and this is what it says:
Intermittent slowing noted over the parietal regions bilaterally, posteriorly, and at times anteriorly or evident on the left with frequent rhythmic theta activity. Photic stimulation produced a driving response at 3-11 with no evidence of photoparoxysmal response.
This is a moderately abnormal EEG due to the focal intermittent slowing noted posteriorly and at times to the left. Hyperventilation seemed to accentuate this. This would be consistent with a focal encephalopathy. If seizures are strongly considered, focal onset of seizures from the left hemisphere should be considered. Further clinical correlation is advised.
MRI done 23 days after the event was normal, and a 24 hour EEG taken in the same time frame showed no abnormalities. The neurologist I had at the time had put me on Dilantin before the 24 hr EEG was run because the jerking was not decreasing, and I was biting my tongue multiple times/night. I was excessively sleepy and could only walk a short while before having to take a nap. I got a different neurologist since the 1st one wouldn’t take me off the Dilantin even tho the tongue biting was worsening, and I started getting toxicity symptoms that I had had in the past w/Dilantin – even tho this was a lower dose.
I had problems w/language – getting words mixed up (couch for table because its something you sit at or on, etc.) if I only saw half of something like a cow I might get it mixed up and call it an elephant, and didn’t seem to be able to comprehend reading for about a month and a half after the episode. I could read the words, they just didn’t make sense. I couldn’t do math, and had trouble with where I was in time. I was very emotional and had a very short attention span. I could only walk so far, and then my body would stop, rest, and then I could go again. It was almost 3 months after the problem had started that the 2nd neuro put me in a sleep eeg unit for about a week to see what was going on, and to take away the Dilantin. He said that the confusion and tremors were from the Dilantin, and that I did not appear to have epilepsy, but that I did have myoclonus apparently from damage to the outer grey layers of my brain. He said if I had other new symptoms to let them know. He couldn’t tell me what had happened to me, but thought it could even have been cardiac in origin – but that I should get on w/my life – so I did.
I still have language problems, more so w/written language than verbal – I repeat parts of words in other words and leave out words – but I still have difficulty speaking quickly when I get nervous and I get confused easily. I have problems w/math like the tables are scrambled in my mind, and when I get fidgetty I only seem to fidget on my Left side. I still have a problem w/the jerking and tongue biting but it is better than it was. I have a burning sensation under the skin on my L forehead and face that started with the incident, went away w/the Dilantin and returned after the Dilantin was discontinued. I have started taking 400 mg Vit B2 (advice from this site’s archives) and that has helped both the burning and the residual numbness that was on the R side of my face.
I have a few of questions:
1. I have had problems w/falling down and/or losing control completely of my bladder while laughing really hard. This is a new thing for me. Should I let the neurologist know? My PCP knows and seems to dismiss it. I’ve tried to quit laughing as much but this type of laughter sneaks up on you unawares. I have been in 3 Stooges withdrawal for 3 months. (I have had so many problems lately I think my PCP thinks I’m coocoo! Nyuck Nyuck Nyuck!) I’ve also had problems w/ excessive sleepiness off and on. Nappiing in the daytime seems to help, but its hard to work and do this. This is also new – I have always been very type A personality – needing about 5 hrs sleep a night. Now 10-12 are more likely – depending on the events of the day.
2. The language and math problems confusion and problems remembering dates/times I’m guessing will get better with time. Am I correct? Or at this stage of the game (almost a year after it happened) am I just going to have to get used to it? My memories are scambled up too – but each day it seem like something comes back to me that I had forgotten – I’m hoping it’s the same way with the other problems.
3. What’s the deal w/Vitamin B2? It did wonders for me in just about a week. I’ve tried to quit taking it and the burning came back.
4. Since Jan I’ve had 2 spells of dizziness w/several days of sleepiness and confusion afterward. My PCP had another MRI done and it was still normal. Are these related? The PCP is suspecting complicated migraines but at first suggested clinical depression. I’m confident that I’m not depressed – I even checked it out w/a counselor last fall just to be sure I wasn’t depressed or psycosomatic. Should I let the neurologist know about the episodes?
5. The PCP wants to put me on antidepressants for migraine – and I had a problem w/Elavil years ago – I took it for a couple of weeks, and had so many jerking spasms and tongue biting episodes by the end, the neuro I had at the time said to never take that type of med again. My PCP doesn’t think the dosage would cause a problem, but I am very leary of antidepressants or anything that alters my level of consiousness– I have not had good results personally. Am I just being neurotic?
6. Would it be beneficial for me to go to a clinic where I can have a complete workup – perhaps a teaching hosptial? Or should I just be patient and let nature do its thing. I think I’m afraid of problems happening again due to the dizzy/confused thng, & I live in rural area with limited health care options.
7. What in the world is a focal encephalopathy? I think it’s doctor talk for “something’s wrong but I don’t know what the heck it is so I’ll give it a long Latin name that way the insurance company will pay”…
Sorry for the length – any answers would be appreciated. I’ve debated a long time whether or not I should even post to ask. I’m not looking for a cure, a magic pill, or even a diagnosis. I would just like to be able to keep my job, and live a fairly normal life with minimal interference by medication.
Last summer I had an episode where I thought I might have had a stroke. It was the 3rd time last year I experienced this, and the first time it didn’t go away after I slept overnight. I had a cascade of jerking type episodes intermixed w/times where I was not able to move. I lost count at around 80 in a two hour period – after that things got kinda blurry and the next thing I knew it was 4 hours later and I was sitting at the kitchen table drooling. I kinda staggered back to my bedroom and went to sleep, and when I woke up I had numbness (kinda patchy in places) on the r side of my face, my r arm, and my r leg. I also was tingling sorta pins and needles all over that side. I know its stupid, but I waited 2 more days before I went to the Dr. hoping it would go away. I had an EEG 11 days after it happened and this is what it says:
Intermittent slowing noted over the parietal regions bilaterally, posteriorly, and at times anteriorly or evident on the left with frequent rhythmic theta activity. Photic stimulation produced a driving response at 3-11 with no evidence of photoparoxysmal response.
This is a moderately abnormal EEG due to the focal intermittent slowing noted posteriorly and at times to the left. Hyperventilation seemed to accentuate this. This would be consistent with a focal encephalopathy. If seizures are strongly considered, focal onset of seizures from the left hemisphere should be considered. Further clinical correlation is advised.
MRI done 23 days after the event was normal, and a 24 hour EEG taken in the same time frame showed no abnormalities. The neurologist I had at the time had put me on Dilantin before the 24 hr EEG was run because the jerking was not decreasing, and I was biting my tongue multiple times/night. I was excessively sleepy and could only walk a short while before having to take a nap. I got a different neurologist since the 1st one wouldn’t take me off the Dilantin even tho the tongue biting was worsening, and I started getting toxicity symptoms that I had had in the past w/Dilantin – even tho this was a lower dose.
I had problems w/language – getting words mixed up (couch for table because its something you sit at or on, etc.) if I only saw half of something like a cow I might get it mixed up and call it an elephant, and didn’t seem to be able to comprehend reading for about a month and a half after the episode. I could read the words, they just didn’t make sense. I couldn’t do math, and had trouble with where I was in time. I was very emotional and had a very short attention span. I could only walk so far, and then my body would stop, rest, and then I could go again. It was almost 3 months after the problem had started that the 2nd neuro put me in a sleep eeg unit for about a week to see what was going on, and to take away the Dilantin. He said that the confusion and tremors were from the Dilantin, and that I did not appear to have epilepsy, but that I did have myoclonus apparently from damage to the outer grey layers of my brain. He said if I had other new symptoms to let them know. He couldn’t tell me what had happened to me, but thought it could even have been cardiac in origin – but that I should get on w/my life – so I did.
I still have language problems, more so w/written language than verbal – I repeat parts of words in other words and leave out words – but I still have difficulty speaking quickly when I get nervous and I get confused easily. I have problems w/math like the tables are scrambled in my mind, and when I get fidgetty I only seem to fidget on my Left side. I still have a problem w/the jerking and tongue biting but it is better than it was. I have a burning sensation under the skin on my L forehead and face that started with the incident, went away w/the Dilantin and returned after the Dilantin was discontinued. I have started taking 400 mg Vit B2 (advice from this site’s archives) and that has helped both the burning and the residual numbness that was on the R side of my face.
I have a few of questions:
1. I have had problems w/falling down and/or losing control completely of my bladder while laughing really hard. This is a new thing for me. Should I let the neurologist know? My PCP knows and seems to dismiss it. I’ve tried to quit laughing as much but this type of laughter sneaks up on you unawares. I have been in 3 Stooges withdrawal for 3 months. (I have had so many problems lately I think my PCP thinks I’m coocoo! Nyuck Nyuck Nyuck!) I’ve also had problems w/ excessive sleepiness off and on. Nappiing in the daytime seems to help, but its hard to work and do this. This is also new – I have always been very type A personality – needing about 5 hrs sleep a night. Now 10-12 are more likely – depending on the events of the day.
2. The language and math problems confusion and problems remembering dates/times I’m guessing will get better with time. Am I correct? Or at this stage of the game (almost a year after it happened) am I just going to have to get used to it? My memories are scambled up too – but each day it seem like something comes back to me that I had forgotten – I’m hoping it’s the same way with the other problems.
3. What’s the deal w/Vitamin B2? It did wonders for me in just about a week. I’ve tried to quit taking it and the burning came back.
4. Since Jan I’ve had 2 spells of dizziness w/several days of sleepiness and confusion afterward. My PCP had another MRI done and it was still normal. Are these related? The PCP is suspecting complicated migraines but at first suggested clinical depression. I’m confident that I’m not depressed – I even checked it out w/a counselor last fall just to be sure I wasn’t depressed or psycosomatic. Should I let the neurologist know about the episodes?
5. The PCP wants to put me on antidepressants for migraine – and I had a problem w/Elavil years ago – I took it for a couple of weeks, and had so many jerking spasms and tongue biting episodes by the end, the neuro I had at the time said to never take that type of med again. My PCP doesn’t think the dosage would cause a problem, but I am very leary of antidepressants or anything that alters my level of consiousness– I have not had good results personally. Am I just being neurotic?
6. Would it be beneficial for me to go to a clinic where I can have a complete workup – perhaps a teaching hosptial? Or should I just be patient and let nature do its thing. I think I’m afraid of problems happening again due to the dizzy/confused thng, & I live in rural area with limited health care options.
7. What in the world is a focal encephalopathy? I think it’s doctor talk for “something’s wrong but I don’t know what the heck it is so I’ll give it a long Latin name that way the insurance company will pay”…
Sorry for the length – any answers would be appreciated. I’ve debated a long time whether or not I should even post to ask. I’m not looking for a cure, a magic pill, or even a diagnosis. I would just like to be able to keep my job, and live a fairly normal life with minimal interference by medication.
Doctor's Answer
by CCF-Neuro-M.D.-GS, Aug 01, 2001 12:00AM
Thanks for the story and I'm exhausted reading it as I'm sure you are living it. It is very difficult with cases like this to say very much without seeing you. The fact is that despite all these events there appears to be no structural abnormality noted on the MRI. If you have have a stroke or symptoms lasting over a day that were stokes something should be seen. Sometimes migraines can also act like strokes so that is a possibility. Some patients that have prolonged seizures can develop something called Todds paralysis, where they have prolonged neurologic symptoms after the spell that they goes away over time. If you were in a monitoring unit and have several events and the EEG was normal then the issue of pseudoseizures is raised. These are usually seizure appearing events that are typically not volitionally induced and should not be treated with sz medication. Treatment in these cases usually involves a psychiatrist. Exactly what your events are I am not sure. The encephalopathy refers to slowing but this could be medication induced. The point your go from hear is up to you and your doctor. we do at Clevelanfd have an otoneurologist who treats dizziness and we have epilepsy experts. I wish you the best with this difficult problem. gs
Sounds like seizures to me. They call the stiff muscle phase [tonic], and the shaking or jerking phase [clonic]. It is common in partial complex seizures to have memory lapses during the seizure before and after as well. You may even have complete blackouts for a while along with inter-ictal and post-ictal delirium periods which leaves your mind in a state of la-la land! I've had this **** for almost two years now and it sucks, so I know some of what you are going through.
Deltha,
By the way, if you want to discuss your seizures further feel free to respond and we can share experiences. Sometimes just being able to talk to someone who has experrienced the same sort of problem makes it not quite as bad although seizures when you are still conscious are very painful like torture, so the unconscious ones are almost lucky except they can't drive.
I got fired from my last job for the seizure disorder. I had been forcasting typhoons for nearly 20 years and now I changed career fields. I was feeling it was time for a change. Now I am on a disability sort of work deal with another company doing clerical work. I know what you mean about being worried about your job. I always worry about it because I am still on the probationary period and with no job I can't pay my bills. I have no family to help me and I live alone so I pay everything alone. I support a house and a truck along with 10 cats and four dogs! I depend on my work and really need it. I never call in sick even when I have had seizures at night and feel like doggie doo-doo the next morning. Hang in there and feel free to talk about your seizure problems to me. I am really interested.
I also know what you mean about the anti-convulsants and side effects. I take Klonopin for mine 10 MG a day 2 MG five times a day. and also for the chronic pain 8-Ultram a day and 6-8[30 mg] of Codiene a day. I tried 300 MG of Tegratol and found myself in la-la land. I was almost hallucinating. There was no-way of working like that. That was before I tried the other stuff now except the Klonopin which I have been on for over one year.
Yes this is long too, I call it the typical Temporal Lobe Babble Syndrome!!!!!LOL Take care and good luck,,, Hopefully no more [shakedown-breakdowns] as I like to call them.
wildcat
Deltha
http://clubs.yahoo.com/clubs/epilepsysupportgroup
http://clubs.yahoo.com/clubs/epilepsychat
Maybe they will be a help to you. :o)