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fever/infection caused seizures

Shell

Senior Member
Messages
477
Location
England
I have a dx of myoclonus as a result of twitching and jerking movements especially on my "bad" side - the right arm and leg.
Sometimes i would get quite bad twitching and jerking following what seemed very like a migraine aura but without the black spots.

I did the right thing and went to the doc and was referred to the epilepsy clinic. Doc there dx myoclonus and wasn't that bothered. I've had a eeg and am due back in October.

Then about 6 weeks ago I started having seizures. I had a mild fever as a result of a UTI and hadn't thought it worth going to the GP until the infection was more obvious. Ha! Wrong decision!
I started having severe aura's with nausea and this would be followed with a seizure during which I wasn't with it but I was conscious. I would get back to "normal" fairly quickly once the fit was over.

The kids called an ambulance and I was shipped off to hospital where I had the lovely dignified experience of fitting in the corridor while in the queue for A&E.

Anyway - IV antibiotics stopped it all and the neuro said in passing I was probably prone to this as she rushed off.

So now I am brewing yet another chest infection. Woke up this morning and had a seizure with no warning aura!
When I can organise child care I will try and see the doc today.
But I am a little bit concerned that this can happen without warning.

Anyone else have this and what do you do? What other warning signs could I look out for if I am not always going to get an aura?

I am guessing this morning's fit was caused by a sudden spike in temp and now I'm sitting with doors open and wet cloth to try and prevent another one.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hugs. I have nocturnal myoclonus most nights and klonopin stops it. Do you have any on hand ? Theanine
might work but I've never tried it. I wonder if magnesium would help ? Or anything that calms us down.

I've only had one big seizure and it lasted 2 hours. I'm not sure what if anything they gave me at the er.
Fwiw, mine appear to be from gluten, caffeine and possibly eating too may nuts (glutamates).

Hope you feel better. Tc .. X
 

Shell

Senior Member
Messages
477
Location
England
Thanks xchocoholic.
I am now on antibios and prednis again. Going back on Thurs (the deal was hospital or extra appt - easy choice!)
I had a pretty full on seizure at the docs as the little room where the nebuliser is kept gets so hot and has no window. Waving a sick bowl franticly at my face didn't prevent the inevitable.
It does worry my that as soon as I get a slight fever this happens. Oh well - another joy of ME I s'pose.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
hi. I have a myclonus diagnoses which was given to me by specialists at a hospital too after going into mycolonus for 2-3 weeks. (I was once ambulanced to hospital by a doctor who freaked as he didnt know that there are symptoms like this in ME and hence then ended up with a tremors and myoclonus diagnoses).

I get those two things both together and separately but if Im getting one, Im more prone to also having the other. When I was diagnosed with this.. they werent interested in the actual cause (and didnt even put me under a neurologist or anything thou I guess it was one of the two emergency neurologists at the hospital which gave me the myoclonus diagnoses). I'd like to tell you that I dont get myoclonus no more.. as my ME improved as far as the neuro symptoms too.. so did that, my symptom complex shifted after being very neurological for a couple of years.

I used to get more seizure like incidents too back when I had more neurological symptoms. I still do get the very occassional seizure like incident (I had a near seizure a few weeks ago.. I could feel it about to happen, the one recently thou Im sure was related to my POTS).. but nothing like it used to be (Ive had some which didnt seem to be connected to the POTS).

My warnings signs are .. I can actually feel it coming on.. even before my body starts getting jerking... its like I feeling like Im shaking just before anyone can see it and then can try real hard to keep still and stop the body jerks up to a point. (that too involves me stopping all im doing at the time and lay down and rest as continued activity will certainly bring it completely on and send me into visable symptoms). If things have gone too far .. I cant control it and collapse with jerking and shaking.

Another aura I get before seizures.. is .. its like the world changes.. like expands, it starts to go weird looking on me.. but in a way I cant explain (It all becomes more beautiful and I went into like awe but also fear as I know something was badly wrong with me). If that happens I know Im in big trouble as it can go from that to me completely collapsed, with no proper awareness in an instant. Last time one of those happened to me it was brought on by excessive stress along with having to remain upright for time long for a court case. I ended up going out of it in seizure and collapsed onto a floor. ..coming too about 5-10mins later.. just before an ambulance arrived as people had called one while i was mostly out consciousnessly (just a little conscious) with my body twitching on the floor. (People around me were trying to speak to me but other then being aware a bit I was hearing voices it all meant nothing to me).

With my seizure incidents thou.. I also can have them without any warning at all. I had one where Id got up to see a visiting friend out who was leaving and only got a few metres and then suddenly collapsed, violent shaking as went down but fortunately was grabbed as I fell by my friend.. he has a daughter with epilespy and he said it looked half like her grandmals.. (my face went ghost white according to friend which was there) ... thou I remained conscious.... That seizure incident was triggered off by just getting too tired while my friend was visiting. Another time.. I actually frothed at the mouth during one of these incidences.


About five months ago.. I had one immediately after getting out of bed.. suddenly went down before I even got a chance to walk away from the bed and the only awareness I had left was of one hand wildly flapping hence why Im aware it wasnt just a collapse but rather must of been a seizure (no other body awareness or mental awareness at all..so I dont know what the rest of my body was doing but only assume the rest of my body must of been in seizure too due to the violence of that one hand flapping that I was only just aware of).

***note.. they didnt find evidence of epilespy on my EEGS (only non specific abnormalities which are actually common ME abnormalities) but Ive been told it may not sure if one just has rare incidents of epilespy, that they may need to be doing the scan while one is having a seizure to diagnose it. So my actual seizures.. whatever kind they are.. remain undiagnosed as they only occassionally happen so Ive never had one in front of a medical person and they dont last long (less then 10 mins, often only minutes). (one specialist just said.. possible epilepsy).

I think all this stuff goes on as those who have ME are more closer to a seizure like state (said by Dr Cheney),..due to the way our nervous systems are... one side (sympathetic?) of it is over active. Hence some ME specialists use Klonopin to help balance our over active nervous systems.

Best luck
 

Shell

Senior Member
Messages
477
Location
England
Tania, thank you for your description. I too have been getting clear aura's and other warning signs before a seizure happens.
For me the aura is very like a migraine aura but without the black spots and nausea. I get a sort of purple haze and then a sense of being - not sure how to describe this - far away and fuzzy. I can't focus my eyes and just feel really odd. Sounds seem to fade in and out.
I also get shaky and then a couple of severe jerks and then a few moments later it happens. Afterwards I feel spaced and utterly shattered. It's hard to stay awake.

When I was there yesterday I raised the question of either Gabapentin or Pregabalin with the amytrip I already take to deal with both pain and seizures. She quite reasonably pointed out that as my seizures seemed to be infection/fever based these probably wouldn't help. She also didn't want to change meds while I was on other stuff for infection- sensibly enough.
But I'll ask about Klonopin as that, at least, is indicated for myoclonus and might help the seizures.
She gave me a full 10 days of antibiotic which is so unusal these days and, bless her, she even gave me three extra days of steroid to keep back for emergencies.

I've cancelled the hospt Lung Specialist appt for thurs as I'll be on too much med to make the tests worth while.
The seizures forced me to see the GP before the infection was properly established and bubbling away. My chest was quite clear - but because I've gone earlier than normal the primary infection was easier for her to spot - throat and larynx (hence my disappearing voice which my husband cheekily tells me is good for him!!:lol:)
Today is good - temp down, no seizures. :thumbsup:
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Tania, thank you for your description. I too have been getting clear aura's and other warning signs before a seizure happens.
For me the aura is very like a migraine aura but without the black spots and nausea. I get a sort of purple haze and then a sense of being - not sure how to describe this - far away and fuzzy. I can't focus my eyes and just feel really odd. Sounds seem to fade in and out.
I also get shaky and then a couple of severe jerks and then a few moments later it happens. Afterwards I feel spaced and utterly shattered. It's hard to stay awake.

Some of that sounds much like mine too (I think you described some of that better then I managed to)... "far away and fuzzy" like Im not really a part of the world.. it looks weird. I struggle to focus and feel weird too. Sounds can go weird on me too in this aura time.. sounds "loose clarity" would be the best way I can explain it.. the world on occassions can also start to sound like hollow or like echoey or far away too . Then if I dont just go into one at this point.. I get shaky (and may get a few jerks but usualy at that point it will hit).

Afterwards like you, I do feel spaced out and very tired (often needing to go to bed and sleep and hence will then often go and sleep the experience off). Something you didnt mention with yours but I also usually also get a headache as an after effect of these caused by ME seizures.

Fingers crossed you are just having them due to infection and being close to that seizure place Cheney talks about.
so maybe when you wont get another without infection also being present??

Best luck