Myoclonic seizure activity.

[melamine]

Also before that one started I knew it was coming and I actually felt dread then.

@CantThink - "dread" is part of the feeling I experience either just before or during and after.

>Do you feel as if you are staring during SPS? I seem to be stuck in the 'tunnel', staring straight ahead. If I get another one where my mum is around I'm going to tell her to look into my eyes and see if there's anyone home as I don't know if it would look like I'm conscious (I am) or not. <

No, I don't feel as if I'm staring, but there is maybe some "tunnel" feeling. I've always been alone when they've happened. My impression is that I would be able to speak but maybe slowly and with long pauses because of the diversion of full consciousness.

One of the reasons I am loathe to consult the GP is because I think describing them is so hard and they sound a bit ridiculous - I have had normal deja vu before and it was nothing like this.

When I tell my doctors about them it is in the context of a list of many other symptoms. I tell them I get simple partial seizures occasionally and describe my particular experience of them. You don't need to convince them, just give them the facts.

It is really interesting though. How long have you had M.E.? Is your illness progressive? It seems good that although you've had the horrible seizures for such a long time, yours are staying infrequent and not getting worse.

I have had post-viral/post-encephalitic disease since 1979 but all kinds of new symptoms started to emerge after 1997. At that point it became progressive.

Prior to that my major symptoms were PEM and memory loss and some cognitive issues. The only other physical symptoms that were pathologic in nature, as I recall, affected my skin. I was experiencing depression for a period of time also, for the usual reasons of misdiagnosis/ not being able to get a diagnosis or recognition of my symptoms, loss of professional opportunities, friends, social life, income. I'm not sure if a Dx of post-encephalitic syndrome would have fit better than ME during that time:I did not have any pain, neuropathic, autoimmune symptoms or patterns of symptoms, and homeostasis was not an issue except as it related to PEM.

I am not sure when I first experienced this symptom because I was used to odd symptoms and it was easier to keep track after I discovered what it was and the name of it, which was less than 10 years ago.

 

[physicsstudent13]

I'm not sure these epileptic medications are at all safe.
eg one forum poster said that gabapentin turned him into a 'goldfish'. it could be possible that lower doses are better if you have a diagnosed sleep disorder at a sleep lab. I had mine at Ultimate Health Sleep
From forums you can see that klonopin and topamax ('dopamax') and gabapentin all aren't safe.

I did have PLMD on one sleep study, but to take klonopin based on one sleep study maybe that isn't a good idea because it can destroy your sleep, I've read some people on here aren't sleeping at all after klonopin!

 

[physicsstudent13]

@physicsstudent13 - It will be a matter of trial and error since everyone's metabolism and biological terrain is different. Researching other peoples' experiences with each of the drugs often helps and you may want to experiment with different dosing schedules as well as doses of whatever you decide to continue with.

You said you got a good effect initially from Klonopin + gabapentin, but the symptoms you experienced the second day you took them seemed to be those of gabapentin. I myself have experienced a very good effect initially from something that turned out to be harmful when I took it after that. One that comes to mind was a combination supplement: it contained some things that I believe were good for me and one thing that was not good at all. From your description I would question whether gabapentin would be useful at any dose.

The topic of this thread is myoclonus. You might want to post your medication and sleep questions on another thread where they will be found by those with similar questions and experiences with those drugs. I don't mind answering any follow-up questions but I lack experience with the drugs in question except for a bad experience with gabapentin.

by the way why do you think gabapentin is causing the terrible cognitive damage? I read one forum poster said it turned him into a 'goldfish' and I'm definitely cognitive damaged on 600mg

does it cause damage by holding open these gates and flooding your brain with GABA? I need more cognitive energy I'm so slow I don't know how I can take a full load of classes

 

[melamine]

by the way why do you think gabapentin is causing the terrible cognitive damage? I read one forum poster said it turned him into a 'goldfish' and I'm definitely cognitive damaged on 600mg

does it cause damage by holding open these gates and flooding your brain with GABA? I need more cognitive energy I'm so slow I don't know how I can take a full load of classes

@physicsstudent13 - None of those drugs is likely to be damaging your brain unless you're not taking them as directed, but the gabapentin seems the most likely one to be causing the symptoms you described. I do not know enough about it to answer any further questions about its effects. If you research, you will find the answers you need about all the drugs in question, as well as supplements you might want to consider trying as an alternative.

 

[physicsstudent13]

yes I think the gabapentin is causing the cognitive damage and spacy unfocused, dizzy symptoms. I thought it is supposed to increase delta wave sleep, maybe it works in small doses of 100mg or 50mg, I'm not sure

I was prescribed 600mg but it was about 9 months before I realized that it was causing this cognitive disability and problems thinking. I'm not sure about the mechanism

 

[melamine]

I thought it is supposed to increase delta wave sleep, maybe it works in small doses of 100mg or 50mg, I'm not sure

It is used in some sleep formulas in small quantities rather than by itself. You might find it works for you that way.

 

[melamine]

This Encephalitis website has some very interesting stories. Here is one of a person who developed myoclonic seizures: http://www.1halloween.net/encephalitis/html/a_nicolail.html

>Oh Feb 16, 2011 I was at work when I suddenly lost the ability to speak, got hit with a headache, and began to have balance problems. I was taken to the ER from the office, and was evaluated for what appeared to be a stroke, but the MRI and CT showed no evidence of stroke. I have never returned to work since that day (I'm an attorney at a large law firm) because I continued to suffer escalating symptoms including transient aphasia, in addition to concentration and memory impairments. Within a couple of weeks I began to have seizures and involuntary muscle jerks (myoclonus).<

In the rest of this story and many others one can see the common experience of misdiagnosis with prejudice, neglect and mistreatment. The ignorance on the part of (too) many of their doctors regarding unmistakable signs and symptoms of even sudden onset encephalitis is striking, as is the lack of good diagnostic tests and treatments.

 

[physicsstudent13]

how do they diagnose encephalopath and other neurological diseses? Is a regular MRI or EEG enough (30 minute)?
I was attacked and got facialy palsy and blindness in my left eye and have lost my hearing and sense of taste. Since then I can't speak and fell and hit my head on the stairs.

 

[melamine]

how do they diagnose encephalopath and other neurological diseses?

My impression is that when encephalopathy is not acute it's often misdiagnosed as mental illness or not diagnosed at all, because the tests ordinarily used are not sensitive enough or of the right kind. If symptoms are reported in proximity to some kind of head or neck trauma, doctors have a better idea of where and how to look for the source. But if one doesn't see a doctor until some time after the injury it can become harder to diagnose. This is not unusual since symptoms of injuries often develop over time.
As for neurological disease, the first thing they do is a physical exam testing pupil response, reflexes, walking according to certain instructions, blink reflex, and a few other things. A basic metabolic blood panel is usually run. It is not uncommon to order an MRI. EEG - might depend on the symptoms being reported.

I was attacked and got facialy palsy and blindness in my left eye and have lost my hearing and sense of taste. Since then I can't speak and fell and hit my head on the stairs.

This sounds very bad. What did doctors say and didn't they order any tests for brain injury?

 

[physicsstudent13]

I had colon neurofibromas removed during colonoscopy and also have hearing loss and tinitus and a large cranial structure which is common with neurofibromatosis or possible NF2. The scary thing is tumors can grow all over your spine and brain in this disease. I would guess B12 is not a good idea if I have this disease

there were abnormalities in my EEG my neurologist igonred it. My pupils don't respond to light, I've been going blind in my left eye after being attacked and with the bell's palsy causing muscle weakness. do they do an EEG or is the PSG different on my sleep studies?
Taking the asthma medication prednisone seems to help maybe because I can't exhale and was diagnosed with complex asthma and a lung infection with calcified granuloma. I probably have encephalopathy from teaching on faculty

 

[melamine]

I had colon neurofibromas removed during colonoscopy and also have hearing loss and tinitus and a large cranial structure which is common with neurofibromatosis or possible NF2. The scary thing is tumors can grow all over your spine and brain in this disease. I would guess B12 is not a good idea if I have this disease

there were abnormalities in my EEG my neurologist igonred it. My pupils don't respond to light, I've been going blind in my left eye after being attacked and with the bell's palsy causing muscle weakness. do they do an EEG or is the PSG different on my sleep studies?
Taking the asthma medication prednisone seems to help maybe because I can't exhale and was diagnosed with complex asthma and a lung infection with calcified granuloma. I probably have encephalopathy from teaching on faculty

@physicsstudent13 - your health problems are complex but seem to have a focus of NF1 or 2. Your best bet is to research every aspect of it and bring your questions to specialists. If your requests for particular tests based on particular symptoms are reasonable and are covered by insurance, there is a good chance they will be ordered and can answer at least some of your questions.