Autistics with epilepsy. question- am I having seizures?

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skibum
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13 May 2017, 12:31 pm

Claradoon, Thank you so much for sharing your experience. That is really intense. My episodes are not like yours but I am glad to have read about yours. Thank you so much for telling me. It is very helpful to read about others experiences even if they are very different from my own.


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14 May 2017, 12:29 am

Autism & epilepsy or other epilepsy like disorders such as myoclonus which I have is quite common. I read somewhere that about 30 percent of autistics suffer from epilepsy or epilepsy like disorders. Same with Strabismus which is an eye tracking disorder which I also have though largely corrected now.



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14 May 2017, 12:58 am

skibum wrote:
I have a question for Aspies/Autists, all diagnosed spectrumites who are also diagnosed with epilepsy. I have no issues with people who self diagnose. I did not have an official diagnosis for 47 years. But for this question, it is important to distinguish because it is important that those who answer have an actual diagnosis. This is more like a research type question. Anyone can feel free to answer, whether you have a diagnosis or not, if you just want to give an opinion. I welcome all opinions. But please specify if you are officially diagnosed so that I can tailor my research. Thank you.

Very recently, I have been experiencing what we think are petite mal seizures. I went to a neurologist the other day and he spoke to me and asked me questions for about 45 minutes or so but did not do any actual brain testing with any kind of equipment at all. Now I know this guy has an amazing reputation but I am not convinced that he can tell what kind of electrical activity is happening in my brain by only asking me questions. He told me that what I am experiencing is not seizures. He has not given me a concrete answer to what is happening in my brain and is only telling me that my brain processes overload differently than others and that these episodes are basically brain tension being released. He said it is neurological but that it is a physiological response to overload.

Well, to me, that is just the definition of a meltdown. So for those of you who have a diagnosis of ASD as well as a diagnosis of epilepsy, how was your epilepsy diagnosed and what kind of seizures do you have? And are you aware of them happening while you are having them?

When I am triggered, I get light full body shakes. These I only notice when I am lying down on my bed. Or, not at the same time, speech that becomes so slurred that it is completely unintelligible and I cannot pronounce consonants, and I lose perception of time. Sometimes the speech issue and time loss perception happen together. Losing perception of time means that for me I feel like something that took 5 minutes took an hour or something that took an hour took five minutes, depending on whether my brain is either racing or slowed down. I am fully aware of my body shaking when it shakes, and when I lose speech, I am aware that my speech is off but I am not aware how bad it is. Others had to point it out. When I lose perception of time, I am not aware that I am doing that.

I am trying to figure out if what I am having is actually seizures or not.
Thank you.


These do appear to be seizures but not petit-mal or tonic-clonic. They appear to be myoclonus combined other seizure activity effecting you verbal sections of the brain. Myoclonus can be either sharp singular spasms like being hit by an electric cattle prod like I get or they can cause general shaking over large areas of the body. Simple partial seizures can certain areas of the brain such as speech, hearing , smell & so on as well as cause twitching type muscle spasms in small areas of the body possibly as small as a single fiber group within a larger muscle.

These types of seizures do not cause loss of consciousness. Everyone has seizures of one type. A simple hiccup is a type of seizure. Having a seizure disorder is not the end of the world. I have myoclonus & was tested to make sure I didn't have more serious types of seizure which I didn't & was allowed to go back to driving commercial truck.



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14 May 2017, 2:05 pm

germanium wrote:
skibum wrote:
I have a question for Aspies/Autists, all diagnosed spectrumites who are also diagnosed with epilepsy. I have no issues with people who self diagnose. I did not have an official diagnosis for 47 years. But for this question, it is important to distinguish because it is important that those who answer have an actual diagnosis. This is more like a research type question. Anyone can feel free to answer, whether you have a diagnosis or not, if you just want to give an opinion. I welcome all opinions. But please specify if you are officially diagnosed so that I can tailor my research. Thank you.

Very recently, I have been experiencing what we think are petite mal seizures. I went to a neurologist the other day and he spoke to me and asked me questions for about 45 minutes or so but did not do any actual brain testing with any kind of equipment at all. Now I know this guy has an amazing reputation but I am not convinced that he can tell what kind of electrical activity is happening in my brain by only asking me questions. He told me that what I am experiencing is not seizures. He has not given me a concrete answer to what is happening in my brain and is only telling me that my brain processes overload differently than others and that these episodes are basically brain tension being released. He said it is neurological but that it is a physiological response to overload.

Well, to me, that is just the definition of a meltdown. So for those of you who have a diagnosis of ASD as well as a diagnosis of epilepsy, how was your epilepsy diagnosed and what kind of seizures do you have? And are you aware of them happening while you are having them?

When I am triggered, I get light full body shakes. These I only notice when I am lying down on my bed. Or, not at the same time, speech that becomes so slurred that it is completely unintelligible and I cannot pronounce consonants, and I lose perception of time. Sometimes the speech issue and time loss perception happen together. Losing perception of time means that for me I feel like something that took 5 minutes took an hour or something that took an hour took five minutes, depending on whether my brain is either racing or slowed down. I am fully aware of my body shaking when it shakes, and when I lose speech, I am aware that my speech is off but I am not aware how bad it is. Others had to point it out. When I lose perception of time, I am not aware that I am doing that.

I am trying to figure out if what I am having is actually seizures or not.
Thank you.


These do appear to be seizures but not petit-mal or tonic-clonic. They appear to be myoclonus combined other seizure activity effecting you verbal sections of the brain. Myoclonus can be either sharp singular spasms like being hit by an electric cattle prod like I get or they can cause general shaking over large areas of the body. Simple partial seizures can certain areas of the brain such as speech, hearing , smell & so on as well as cause twitching type muscle spasms in small areas of the body possibly as small as a single fiber group within a larger muscle.

These types of seizures do not cause loss of consciousness. Everyone has seizures of one type. A simple hiccup is a type of seizure. Having a seizure disorder is not the end of the world. I have myoclonus & was tested to make sure I didn't have more serious types of seizure which I didn't & was allowed to go back to driving commercial truck.
Geranium, thank you. This is fantastic, I will definitely look into this.


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14 May 2017, 2:12 pm

Geranium, thank you. This is fantastic, I will definitely look into this.[/quote]

Your welcome



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14 May 2017, 2:16 pm

germanium wrote:
Geranium, thank you. This is fantastic, I will definitely look into this.


Your welcome[/quote]
I was, at first, hoping you were a neurologist rather than a truck driver but sometimes I trust my truck drivers more than my neurologist, especially if this was a special interest of yours. If it was, or is, I believe that you would have a level of expertise in the subject and possibly know some things that my neurologist might not. Are you able to tell me more about myoclonis seizures and what you were explaining in your post? This is so interesting to me and I really want to look into it more. Do you have articles that you recommend that I can look at to research this?


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14 May 2017, 2:34 pm

Geranium, when they tested you, what did they actually do to test you? What tests did they do to conclude that you had myoclonis seizures?

That is one reason I am wondering is that, as I mentioned earlier, the neurologist did not do any electrical testing on my brain whatsoever. All he did was ask me questions and annoy me. And from asking me annoying questions and just having me verbally describe what happens, as I did in this thread, he concluded for a fact that I am not having seizures and his official diagnosis is, "That's just how your brain deals with being overloaded." He called it "Brain tension releasing." He says it's neurological, but it's a psychological response to psychological, emotional or sensory overload. That, to me describes a typical meltdown or shutdown.

But I would also love to have my brain electrically analyzed during a typical meltdown or shutdown to see what the kind of electrical brain activity is going on during those times.


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14 May 2017, 2:46 pm

skibum wrote:
germanium wrote:
Geranium, thank you. This is fantastic, I will definitely look into this.


Your welcome

I was, at first, hoping you were a neurologist rather than a truck driver but sometimes I trust my truck drivers more than my neurologist, especially if this was a special interest of yours. If it was, or is, I believe that you would have a level of expertise in the subject and possibly know some things that my neurologist might not. Are you able to tell me more about myoclonis seizures and what you were explaining in your post? This is so interesting to me and I really want to look into it more. Do you have articles that you recommend that I can look at to research this?[/quote]

I just typed in autism & myoclonus. I was having spasms quite severely & was very curious as to what they were. At first I thought they might be due to tourette syndrome but when I looked that up it didn't fit but somewhere I found a reference to myoclonus so I looked that up & low & behold it fit what I was going though. I went to see a doctor & he sent me to a neurologist & the neurologist sent me to a neurosurgeon to assess the severity & see if I could return to driving truck. They determined that I could. I already knew what it was before I seen the doctors but they confirmed it. I went through testing for the more severe epilepsy type symptoms but I was able to pass those tests easily. I still have the spasms but at a reduced level nowdays.

While it wasn't a special interest of mine I did have enough interest in it to persue more information about it. For me I found the treatment potentially worse than the problem considering that I had no loss of consciousness & the spasms were extremely short as in less than a tenth of a second & the fact that I came up with strategies to minimise the effects of the spasms allowing me to continue to do my work safely in spite of the spasms.



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14 May 2017, 2:51 pm

skibum wrote:
Geranium, when they tested you, what did they actually do to test you? What tests did they do to conclude that you had myoclonis seizures?

That is one reason I am wondering is that, as I mentioned earlier, the neurologist did not do any electrical testing on my brain whatsoever. All he did was ask me questions and annoy me. And from asking me annoying questions and just having me verbally describe what happens, as I did in this thread, he concluded for a fact that I am not having seizures and his official diagnosis is, "That's just how your brain deals with being overloaded." He called it "Brain tension releasing." He says it's neurological, but it's a psychological response to psychological, emotional or sensory overload. That, to me describes a typical meltdown or shutdown.

But I would also love to have my brain electrically analyzed during a typical meltdown or shutdown to see what the kind of electrical brain activity is going on during those times.


Bright flashing lights & a sleep test while hooked to an EEG machine as well as an MRI for my head & neck to see if I had any pinched nerves or tumors in the brain or neck.

The actual diagnosis though was made on my verball description of the spasms.



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14 May 2017, 2:55 pm

germanium wrote:
skibum wrote:
germanium wrote:
Geranium, thank you. This is fantastic, I will definitely look into this.


Your welcome

I was, at first, hoping you were a neurologist rather than a truck driver but sometimes I trust my truck drivers more than my neurologist, especially if this was a special interest of yours. If it was, or is, I believe that you would have a level of expertise in the subject and possibly know some things that my neurologist might not. Are you able to tell me more about myoclonis seizures and what you were explaining in your post? This is so interesting to me and I really want to look into it more. Do you have articles that you recommend that I can look at to research this?


I just typed in autism & myoclonus. I was having spasms quite severely & was very curious as to what they were. At first I thought they might be due to tourette syndrome but when I looked that up it didn't fit but somewhere I found a reference to myoclonus so I looked that up & low & behold it fit what I was going though. I went to see a doctor & he sent me to a neurologist & the neurologist sent me to a neurosurgeon to assess the severity & see if I could return to driving truck. They determined that I could. I already knew what it was before I seen the doctors but they confirmed it. I went through testing for the more severe epilepsy type symptoms but I was able to pass those tests easily. I still have the spasms but at a reduced level nowdays.

While it wasn't a special interest of mine I did have enough interest in it to persue more information about it. For me I found the treatment potentially worse than the problem considering that I had no loss of consciousness & the spasms were extremely short as in less than a tenth of a second & the fact that I came up with strategies to minimise the effects of the spasms allowing me to continue to do my work safely in spite of the spasms.[/quote]
That is great. Thank you. My shakes are actually longer lasting but feel very light. I feel them when I lay down. I don't know if I only have them when I lay down but that is when I feel them. They are whole body and the entire body shakes as one. When they first started I thought the were seismic activity since I don't live too far from a fault line. Then I thought I was feeling artillery testing 20 miles away. But I don't know that it's either one of those things because if it were I think with the intensity of the shakes that I feel, even thought they are pretty light, they are intense enough that if it were seismic or artillery tremors, little thing on my shelves would be moving around or toppling over. So the fact that only my bed shakes and nothing else in the house seems to be shaking, is telling me that it is probably me.

But my shakes can last for quite a few minutes. I have never timed them but they feel like they might last up to maybe 5 minutes. And my speech issue has sometimes lasted longer than a half hour. I see that the myoclonus seizures were diagnosed through a your verbal description. I wonder if that is why my neurologist just assumed they were not seizures, because they last so long. But I will definitely do some research on these to see what I can find.

If any more of you guys have this, please comment. Thank you so much.


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14 May 2017, 4:01 pm

skibum wrote:
Geranium, when they tested you, what did they actually do to test you? What tests did they do to conclude that you had myoclonis seizures?

That is one reason I am wondering is that, as I mentioned earlier, the neurologist did not do any electrical testing on my brain whatsoever. All he did was ask me questions and annoy me. And from asking me annoying questions and just having me verbally describe what happens, as I did in this thread, he concluded for a fact that I am not having seizures and his official diagnosis is, "That's just how your brain deals with being overloaded." He called it "Brain tension releasing." He says it's neurological, but it's a psychological response to psychological, emotional or sensory overload. That, to me describes a typical meltdown or shutdown.

But I would also love to have my brain electrically analyzed during a typical meltdown or shutdown to see what the kind of electrical brain activity is going on during those times.


Was he annoying you on purpose to test your reaction or was it just an annoying process?



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14 May 2017, 9:32 pm

wozeree wrote:
skibum wrote:
Geranium, when they tested you, what did they actually do to test you? What tests did they do to conclude that you had myoclonis seizures?

That is one reason I am wondering is that, as I mentioned earlier, the neurologist did not do any electrical testing on my brain whatsoever. All he did was ask me questions and annoy me. And from asking me annoying questions and just having me verbally describe what happens, as I did in this thread, he concluded for a fact that I am not having seizures and his official diagnosis is, "That's just how your brain deals with being overloaded." He called it "Brain tension releasing." He says it's neurological, but it's a psychological response to psychological, emotional or sensory overload. That, to me describes a typical meltdown or shutdown.

But I would also love to have my brain electrically analyzed during a typical meltdown or shutdown to see what the kind of electrical brain activity is going on during those times.


wozeree wrote:
Was he annoying you on purpose to test your reaction or was it just an annoying process?
He was definitely not annoying me on purpose. I just don't ever like answering the kinds of questions of he was asking. He was genuinely interested in me as well as trying to figure out my issue. I just can't ever answer the kinds of questions that he was asking no matter who is asking them. But there was nothing in the questions themselves that were annoying, they are just super difficult for me to answer.


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14 May 2017, 9:36 pm

Gernaium, How did you actually describe your seizures for them to be recognized as myoclonis?


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15 May 2017, 12:14 am

skibum wrote:
Gernaium, How did you actually describe your seizures for them to be recognized as myoclonis?


Just like I described them to you. Like someone took an electric cattle prod & poked me in the back with it. It is a sudden non repetitive hard jerk involving large parts of my body & sometimes even whole body. It also tends at times to amplify intended motions causing me to for example when moving my hand from my lap to my face I may end up actually hitting myself in the face fairly hard if I don't react in time by tensing the triceps to pull it back.



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15 May 2017, 8:19 am

Oh ok. Wow. With me I just shake. No other feelings. I just start to shake or my speech just deteriorates. I wonder if this is why the doctor did not think it was seizures. But I not convinced that they are not because he couldn't tell me specifically why they are not. The shaking just starts and then just stops with no other sensations. The speech also just starts to deteriorate and slur but I know that this is a response to being very overwhelmed.


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15 May 2017, 12:17 pm

skibum wrote:
Oh ok. Wow. With me I just shake. No other feelings. I just start to shake or my speech just deteriorates. I wonder if this is why the doctor did not think it was seizures. But I not convinced that they are not because he couldn't tell me specifically why they are not. The shaking just starts and then just stops with no other sensations. The speech also just starts to deteriorate and slur but I know that this is a response to being very overwhelmed.


One thing it could also be is low blood sugar though when I had low blood sugar I would also sweat profusely & Feel cold as well as shake. I didn't loose speech though. It would go away after about a half an hour whether I ate or not though I was ravenously hungry during those epesodes. I don't get that anymore.