Near seizure.

The past year or two my CFS/ME has been strange (by strange i mean different to how i hear it affecting others). Most of the time i can be completely symptom free if i avoid physical activities eg just sit in a chair all day and dont move except type.

When i do start to over do things.. the symptoms start to kick in REAL FAST eg dizziness in which if i continue doing whatever.. i'll start getting a headache or like a feel of brain swelling? five minutes later.. and if i dont stop at that point.. 5-10 mins later i may be almost throwing up... and so on. So i can go from being completely fine and feeling healthy (which is unusual to most with CFS/ME).. to sick and almost vomiting in about 20 mins. So i usually stop doing things as soon as the CFS/ME starts kicking in.

Today i went to government meeting and other then feeling a healthy kind of tired (not a CFS/ME tired, there is a HUGE difference!.. i was just tired as i had insomia last night so only got 3 hrs sleep), i felt tired but great.

But after 1.5 hrs of sitting in chair at meeting at which point I was starting to feel weak, I suddenly then nearly had a seizure coming out of the blue so suddenly, it shocked me to have it happen. (This happened without feeling any exhaustion).

My body started uncontrollably jerking and spasming.. (if i had been standing it probably would of looked like an epiletic seizure as it probably would of dropped me, this has happened in the past)

Its a bit of of worry to see my neuro symptom kick in so strongly and suddenly!! without much warning at all only some slight weakness (enough for me to be slouched in chair and leaning my head.. but it really wasnt too bad at all.. i was quite happy as my body was comfortable slouching and hence having my weakness supported some).

I wonder why my case of CFS/ME can go from feeling great and being like well.. to a complete neurological disaster :rolleyes: so fast (i thought they were going to have to ring an ambulance) .. but then can also come good just as fast. I used to have typical CFS/ME and used to take ages/days/weeks or whatever to recover, if a crash to cause that severe symptom happened. But now 15 mins after the near seizure.. i was feeling great again and could even walk the distance to the car which was on another road (thou like a normal persons tired).

That XMRV or those MLV's must really mutate a lot as this is so different to how the ME used to be.

Comments

mental stress can use an incredible amount of energy - and it can knock your ability to detect this offline - so other than routine symptoms you may not notice until it's too late - I've had several official medicals cancelled due to similar events when as far as I was aware at the time I was fine - stressed but coping - next thing I know they've terminated the interview on health grounds - and when I've left the building I've been a serious risk to both myself and others due to total lack of environmental processing - which is useful when you have no idea what a road or cars are anymore etc.

I used to have major seizures a lot more than I do now - basically gran mal but I was concious throughout - not normally concious but still concious - these have tapered off and I havent had one in several months as far as I am aware

I'd ascribe your more rapid onset of serious symptoms recently simply to having less "reserves" or your body's ability to make energy on the fly being reduced so "reserves" are being used up faster - and would suggest more rest if possible
 
Remember to watch your breathing when feeling overwhelmed - you need to breath as deeply as possible and relax. Potentially a change of scene also.
 
I developed these symptoms 5 years ago. Had them in a milder form all along. I believe its related to dysautonomia. If I am upright for too long it will happen. The sicker I am the shorter the amount of time for it to kick in. Initially I only noticed it when standing but it comes with sitting as well. If you read any of Byron Hyde's work you will see he refers to the fact that ME patients can feel quite normal when not exerting. It was the first time it made sesne to me that I had this huge variability in my level of functioning. Tried to get aPOTS dx but thats a whole other story.
 
Apparently, many of us with CFS/ME do actually have seizures. I KNEW i was having them in the late afternoon during my deeper naps. No one believed me since they said that I would not know if I was having a seizure in my sleep. Well, I made it a massive point to try to remember how the seizure started, what went on, etc.
Several years after CFIDS I went to a CFIDS doctor who asked me if I had ever had late afternoon seizures. I screamed at him "HOW DID YOU KNOW?" He said it was not uncommon, esp. early on in the disease. I was so thrilled that someone, a doctor, believed me when I told him that it started out with my teeth chattering so hard I thought they would shatter and my body would start vibrating and then off into some other place where I would hear voices. The last part about the hearing voices when i was asleep sounds odd, but I did hear voices talking in my bedroom. I assume damage or something done to the brain was going on and not some sort of "mind travel" as a friend said was going on. I think I was just too sick to even do a "mind travel" if that was possible!

Agree with all the others who told you that the mental efforts are just as hard on us as the physical efforts. Much is required from our brains and putting too much strain on the brain may well have set off some odd neuro symptoms. So, go easy in all things.
 
I was actually relaxed when it happened, not overwhelmed at all, thou meeting was wearing me out mentally as i was focusing hard (but i was very pleased with how that meeting was going.. the government people WERE actually listening to the disabled ones speaking).

sandgroper.. nods, on thinking about it I do think it was probably due to the dysautonomia (and earlier stress thou i wasnt emotionally stressed at the time). i tend to go weak with the dysautonomia before other symptoms happen, so that is probably where my weakness also came from at the time.

Wonko.. ive gotten what others say looks like gran mal seizures too (thou it hasnt happened to that degree for a while). The neurologist thou said it wasnt epilespy as it didnt show up like that on EEGs. When i get like a gran mal.. i'll collapse and violently spasm on the floor.. i froth at the mouth and drawl while that is happening but weirdly, i do mantain some consciousness during eposides thou cant speak etc
 
muffin;bt3043 said:
Apparently, many of us with CFS/ME do actually have seizures. I KNEW i was having them in the late afternoon during my deeper naps. No one believed me since they said that I would not know if I was having a seizure in my sleep. Well, I made it a massive point to try to remember how the seizure started, what went on, etc.
Several years after CFIDS I went to a CFIDS doctor who asked me if I had ever had late afternoon seizures. I screamed at him "HOW DID YOU KNOW?" He said it was not uncommon, esp. early on in the disease. I was so thrilled that someone, a doctor, believed me when I told him that it started out with my teeth chattering so hard I thought they would shatter and my body would start vibrating and then off into some other place where I would hear voices. The last part about the hearing voices when i was asleep sounds odd, but I did hear voices talking in my bedroom. I assume damage or something done to the brain was going on and not some sort of "mind travel" as a friend said was going on. I think I was just too sick to even do a "mind travel" if that was possible!

Agree with all the others who told you that the mental efforts are just as hard on us as the physical efforts. Much is required from our brains and putting too much strain on the brain may well have set off some odd neuro symptoms. So, go easy in all things.
Muffin it sounds more like you were getting Hypnagogic imagery (voices happen in that) while in a Hypnagogia state. With ME our brain waves are often stuffed up and hence when we are trying to sleep or sleeping, they arent always going how they are meant to be and hence we can be like stuck between sleep and wake state.

Some will get the vibrations and voices.. just before having an out of body experience!! That teeth chattering feel can happen to at the time due to the vibration. (Before i was sick.. i used to be able to on rare occassions consciously cause that and those things you mentioned happen just before one..some yogis, occultists etc etc make that happen till they are like consciously thrown out of the physical body). Dont freak out if you ever find yourself having a very very weird experience after those hypnagogic symptoms.
 

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