Grand-mal seizures

[Googsta]

I was diagnosed 11 years ago. Two years ago, out of the blue I had my first ever grand-mal seizure. I felt unusual so went to bed early. I woke up feeling confused so I went back to sleep for about half an hour. When I re-awoke I went into a violent seizure. My husband was in another room & heard the rucus, he said my face contorted wildly, pupils extremely dialated, arms flapping violently, entire body jumping off the bed etc. I was taken to hospital by ambulance but the doctor didn't think it was a 'true' seizure as I didn't lose conciosness or continence. It happened again 8 weeks later but the doctors said the same thing. The very next night it happened again. Both the ambo's & the docotr I saw were convinced it was a true grand-mal seizure but after seeing my Neurologist & having an EEG they beleive it is not Epilepsy or seizures. I had a 7 day EEG but no seizure was recorded.
I was just wondering if anyone else has had any seizure-type activity?
Thanks :Retro smile:

 

[Enid]

Yes indeed Googsta - all sorts of types of "seizure" from loss of consciousness (and continance) 3 times, to complete body spasms/jerking and times of such lightheadedness as to be on the point of passing out. No epilepsy diagnosed (amazing how everything disappears when one is rushed into hospital). MRI (brain) had shown "patchy high signals" (associated usually with MS but not thought so by my Neurologist). But with intense pain I was allowed Gabapentin which I took to high dose which is for epilepsy and it was something of a turning point - slept mostly like a log at last and could begin a systematic recognised ME supplement routine afterwards with no reappearance of seizures.

Hope you can find relief too - very nasty.

 

[Googsta]

Thanks for responding Enid, I'm so glad you are finding good results! I was SO frustrated that they didn't keep me in that second time as they could have caught it the next night.
Sigh
not much I can do I guess. Hubby is always ready to film me now but I haven't had a seizure like that for over a year (thankfully). I tried two epilepsy meds but they caused permamnent double & blurred vision & also vertigo, I went off them & haven't had any more 'full body' seizures, just jerking.
Regarding the MRI, they were actual lesions (white spots) mostly in the frontal lobe. My GP & the radiologist were both convinced of MS but not the Neuro. Unfortunately he does not beleive in CFS/ME (bully for him) & has diagnosed me as 'Atypical Migraine', which he freely admits is what they say when they have no clue.
Funny how they will say that but not CFS!????
Rest Easy,
Googsta

 

[Sushi]

I was diagnosed 11 years ago. Two years ago, out of the blue I had my first ever grand-mal seizure....
I was just wondering if anyone else has had any seizure-type activity?
Thanks :Retro smile:

One of the Incline Village cohort (mid-80's) suddenly had 12 grand mal seizures a few years ago. He had to go on anti-seizure medicine. He has written it up--Ken Wilber--he has a website as he is a famous author.

Sushi

 

[LaurelW]

This happened to my mom in September, she had a grand mal seizure out of the blue. She has had CFS since the early 80s, and never had one before. She thinks it was caused by a new DHA supplement she started taking which has an algae base. Turns out there are other complaints about this same supplement, (not sure if they are seizure-related).

 

[Googsta]

Thanks for that Sushi, I'll look him up

I'm sorry to hear that Laurel, it is so frightening! Originally they thought it was a pain killer I had & that I must have a 'low seizure threshold' but it happened two more times when I hadn't had any meds.
I wonder if it could be due to brain swelling on a particular part of the brain? Or exposure to a chemical?

 

[LaurelW]

I've been wondering if my mom has CFS-related low-seizure threshold.

 

[Sushi]

Thanks for that Sushi, I'll look him up

Ken is a biochemist himself as well as an author and thus has done a lot of research on this disease. He feels that, at least in his case, the seizures are part of the progression of the disease.

Sushi

 

[anciendaze]

Seizures are common when there is damage to the CNS. Mostly, we have microscopic damage which stops short of producing a gran mal. I had a loss of consciousness which the ambulance crew reported as a gran mal seizure. I lost consciousness, etc. and got a nasty cut in my scalp which could have come from bending over backwards in a contraction of back muscles. (I was standing when it hit.) In addition to a long loss of consciousness after the event, I lost about 10 minutes of memory just before. No evidence of epilepsy turned up. The problem was blamed on medication and/or low blood sugar.

Since that time I have been very cautious about pushing myself if I feel "strange". I lie down instead. No repetitions have taken place.

Cerebral hypoperfusion, and possible transient ischemic attacks, seem to fit this pattern.

 

[Googsta]

Seizures are common when there is damage to the CNS. Mostly, we have microscopic damage which stops short of producing a gran mal. I had a loss of consciousness which the ambulance crew reported as a gran mal seizure. I lost consciousness, etc. and got a nasty cut in my scalp which could have come from bending over backwards in a contraction of back muscles. (I was standing when it hit.) In addition to a long loss of consciousness after the event, I lost about 10 minutes of memory just before. No evidence of epilepsy turned up. The problem was blamed on medication and/or low blood sugar.

Since that time I have been very cautious about pushing myself if I feel "strange". I lie down instead. No repetitions have taken place.

Cerebral hypoperfusion, and possible transient ischemic attacks, seem to fit this pattern.

Thanks for the informative answer Anciendaze, I looked up CH & POTS & I will talk to my doctor about it. I also found info on Dysautonomia interesting. Not long before the first of the seizures my husband had surgery so needless to say I was exhausted & pushing my limits. I started having a sensation where I felt like I was in an elevator dropping rapidly. I was crossing the road one day & almost passed out, now I'm on the right track to finding what is causing this -- thankyou!!!
The only thing I am confused by is that none of the doctors or Neurologists recognised this, when I described the symptoms they gave me a puzzled look.

 

[merylg]

I have had one Grand Mal seizure (1 minute tonic-clonic with loss of consciousness) about 3 years ago. It was in the evening, fortunately in the doctor's waiting room, so it was witnessed by the doctor & I received instant medical attention.
I had a very high temperature & pneumonia at the time. Scarey thing was, I had driven myself up to the doctor's surgery. Lucky I didn't have the seizure whilst driving.
I was taken to hospital by ambulance for tests & observation. They gave me a brain CT scan which showed no sign of stroke. They spoke on the phone to a Neurologist, who thought it an isolated event due to me being so sick & having such a high temperature. He said I was not to drive for 3 months.

More recently I have seen my own Neurologist for other cognitive issues. As I have never had more than that ONE seizure I don't have a diagnosis of epilepsy. I had an MRI which showed some hyperintensities. My Neurologist said they were non-specific and are often seen in people who have migraines & people who have high blood pressure.
I suffer from migraines.

It has made me more cautious. There is one person in my family history, that we know about, who suffered seizures in her 40s. My father when elderly, suffered from TIAs and vascular dementia. He had been a heavy smoker.

 

[Annesse]

I have posted some studies that show CFS patients have low B12. I believe the reason for this is a lack of pancreatic enzymes called proteases. Studies show that these enzymes are essential for the binding and transport of vitamin B12. Lack of B12 isn't the only problem that would arise of course, but it can be directly connected to many of the symptoms and findings in CFS. One of which is white matter lesions and another would be seizures. Here is a study that shows lack of B12 can lead to seizures. It states that seizures and tremors were observed in 46.6% of the patients.

http://www.ncbi.nlm.nih.gov/pubmed/20402062

 

[anciendaze]

...The only thing I am confused by is that none of the doctors or Neurologists recognised this, when I described the symptoms they gave me a puzzled look.

There must be a special course in med. school for that look.

The operative term I left out was orthostatic intolerance, which is characteristic of this illness in many people. You may or may not have the elevated heart rate needed for a diagnosis of POTS. (My elevation is either just over or just under the 30 beats/min. typically used as a dividing line.) It was years before I realized that EEGs and EKGs done while lying recumbent might not reflect my condition while standing. Most doctors will wait until there is evidence of either heart or nerve damage to run more realistic tests. Afraid I don't have any magic for dealing with doctors.

On your own you can reduce the chances of a repeat performance by limiting your time upright, (where possible,) avoiding dehydration, and keeping electrolytes in balance. You may also have a strange response to a glucose tolerance test. I hesitate to recommend that as it is a provocative test which may cause the thing you fear. You can avoid going too long without eating, or having a hypoglycemic response after an overload of sugars or carbohydrates, without waiting for a doctor to tell you not to do what he just had you do in a test.

 

[November Girl]

One test for low-level seizure activity is a sleep-deprived EEG. The lack of sleep irritates the brain. During the test, the technician will do a few other things to try and trigger a seizure.

My neurologist told me that everyone's brains become more seizure prone with age. Not that everyone has seizures, just that the likelihood increases with age. I've been on lamotrigine for 18 months now, and it has done me a world of good. I have a lot less pain, and my mood swings are gone. My mind is more cohesive than in years. I know that most of the good effects are the result of controlling the low-level seizures I didn't realize I was having. I assume that some of it is due to a better balance of neurotransmitters.

 

[Valentijn]

High glutamate levels can be associated with seizures, and in the case of ME/CFS, the high glutamate might be caused by low cysteine levels.

Many meds deal with glutamate problems by making GABA more effective in opposing the effects of glutamate. But supplementing N-acetylcysteine may be more helpful by combining with the extra glutamate to form glutathione, thus lowering glutamate levels instead of just opposing them.

 

[Googsta]

Thankyou for all the responses , I am learning so much! Anciendaze, if only we had a dollar for everytime we got that look!LOL

My deepest sympathy to anyone who experiences seizures, IMHO they are the scariest of the symptoms I have personally experienced. Not knowing if or when another may hit terrifies me.
POTS, OI etc are all new to me so I need to have a chat with my doctor, I had no idea there were so many tests available to help me with nutrition etc.
I have jelly legs, the lead filled limb sensation, a terrible senssation where I feel as though I am going to drop or pass out. I have had my pulse rate over 100 at rest, they did the Holter Monitor but it was ok (I wasn't in a relapse then though). Usually it's just an adrenaline like pounding in the chest I get but I don't feel panicked. I usually have low to normal blood pressure. I guess I need to review it with the doctor, he's new at it all but has an open mind - that's all I ask!
Rest Easy ?