Are seizures related to ME?

[leela]

Oh Laurel, that is appalling. It's hard to imagine such a huge miss, and from two facilities no less! <sigh>
I am sending you both love and light, and trust the surgery and recovery will go really well.
So much love to you both.

 

[LaurelW]

Thank you so much, Leela!

 

[taniaaust1]

They still don't know what caused them. Yesterday they were getting ready to send her home because she's much better, but then they discovered that both of her shoulders are broken from when she had the two toniclonic seizures, and she's havin surgery today. The small-town hospital she went to first completely missed that, and so did the big-town research hospital she's in now, for five days! Needless to say, a lot of us are having flames coming out of our ears at the moment.

oh geeze, how terrible. One really wonders how that was missed. I hope they are now treating her much better.

I get seizure like incidents or seizures with the ME/CFS. I end up on the floor violently jerking in some of them but I maintain slight conciousness (eg the last one I had thou I crashed onto the floor due to it, lost my sense of time and the awareness of my body yet I was still aware of just one arm with my hand nearly being shaking off of it but had no awareness of my body other then that (but from my limited arm awareness I know my whole body must of been in a seizure).

I only picked up my latest EEG results several days back.. and once again (this is the third EEG ive had over the years).. it dont show epilepsy up (my specialist has told me that sometimes epilespy only shows up if one has a scan while actually having the seizure.. he still thinks I have epilepsy). It does thou show the common ME/CFS non specific finding thou (with some of my brain waves being faster then normal).

You may want to check out http://wwcoco.com/cfids/bernesx.html


Be aware that POTS too can cause seizures (due to lack of blood going to brain) if your mother also has POTS.

 

[LaurelW]

Thanks, Tania. :Retro smile:

 

[leela]

Hi Laurel,

I imagine you have much to do, and are quite tapped out by all this, but when you have a chance, please do let us know
how you and your mum are doing. I hope you are able to get the rest and care you need for yourself as you
support your mother through this ordeal. We wish you both both all the best.

 

[Firestormm]

Awful thing to have happened Laurel. I can't quite understand how they missed the broken shoulders at the hospital. Sounds incredible. I hope your Mum recovers well.

 

[fla]

fla, what do your seizures during sleep consist of, if you don't mind saying? I've been told I do some pretty extreme muscle twitching in my sleep, but I don't know if these are actually 'seizures'. I'm taking methyl B12 and experience twitching at rest on this supplement, though nothing I would call a 'seizure'.

My wife told me I had "seizures" again during the night but I have no recollection. I asked her to imitate them. It looks more like large involuntary movements mostly in the legs (greater amplitude than shivering). She said she is unable to imitate the movements with the same sharpness. She said my legs were very cold at the time. My guess would be weak heart mitochondria causing bad circulation and the body trying to "kickstart" circulation to the legs.

Living with a severe M.E. patient is no picnic. She sometimes has mysterious bruises on her legs and now I'm the prime suspect.

 

[LaurelW]

Hi,
My mom is leaving the hospital and is on her way to a rehab facility where she has to stay for six weeks while her arms heal. She'll get lots of PT and OT while there. I happened to be at the hospital today when the team of seizure doctors came by, and they are still clueless as to what caused the seizures. They want her to take Keppra, an anti-seizure medication, for the rest of her life. They won't let her drive until she's been seizure-free for 3 months. There goes my regular extra-vegetable delivery!

I spent 3 1/2 hours in the hospital today because various family members have gone out of town and I'm completely knackered. At least she will now be only 5 minutes and a short walk to her room away instead of a 20 minute drive and a long walk. I've been having family members push me to and from her room in my wheelchair.

Thanks for all the concern and good wishes. I think now I need to stay home and rest for a couple of days. :In bed:

 

[leela]

Thank you for letting us know, Laurel! Glad you have had wheelie-help!
Get some good rest, and be well.
Much love to you and your Mum.
Virtual vegetables are much less nutritious, but sending you some

 

[LaurelW]

Yummmm.

 

[ixchelkali]

I'll be thinking of you and your mom. I hope you can both get some rest. And I hope the physical therapy people she has take her ME/CFS into account in her exercises. I imagine all the physical stress of the seizures, hospitalization, surgery, etc, will exacerbate her ME/CFS symptoms. I hope the rehab people understand that and don't push her to do too much.

Did you ever get the results of the listeria?

 

[LaurelW]

Nope, something went wrong with the test and they have to do it over. Now they expect it on the 12th.

My mom is pretty vocal about letting people know about the effects of ME, so I'm not worried on that account. Besides, she's way more high-functioning than I. As recently as a couple months ago she was out camping in the desert by herself!

 

[leela]

She sounds like a *really* cool person!

 

[bigmama2]

interesting that some of you mentioned seizues while sleeping. i get those. they are very strange, and i have never had them while awake. my head and neck start shaking, can feel it most in the chin. nothing else in body is shaking. it actually wakes me up. doesnt hurt or bother me- just so wierd. then usually i fall back asleep and seizures start again. etc. not sure how long the whole event lasts because i am pretty out of it the whole time. when cfs is worse i get more of this, and when my cfs is better i get much less. had these for years.

does anybody else get this same type of thing?
thanks

 

[leaves]

I have the body shaking but not the head perse. I am scheduled for a sleep deprived EEG this week...(IEKK!!) wish me luck...

 

[kurt]

I had seizures many years ago and that baffled my doctors, including a top neurologist. Had all the tests, sleep study, etc. They tried to give me drugs, including neurontin, but I had a terrible drug reaction that was far worse than the seizures. Turned out I react to a certain class of drugs, typical CFS issue with the P450 system, but that's another topic. Anyway, eventually the doc gave me a diagnosis of partial complex epilepsy, but really I think that was a guess. I was sent home with no solutions, so decided to do my own research. Turned out I have a type of hypoglycemia, and when my blood glucose got low, sometimes I would get the shaking seizure. Also, stress or adrenal depletion could sometimes trigger this. So they may have been right as that matches partial complex, particularly since I would stay conscious. Anyway, after a few years of self-treatment with a hypoglycemic diet, and a bunch of supplements for general CFS treatment, as well as use of north-pole magnets when I had seizure activity, they have stopped. Just part of the strangeness of CFS. I think it is important to NOT let doctors treat us as typical patients and try their usual therapies without a lot of intelligent patient involvement in therapy (self-monitoring, getting some education about CFS, etc), because we are anything but typical.

 

[leela]

Very interesting, Kurt. Thank you for sharing this really useful info--but sorry you had to got through all that as well!

 

[Firestormm]

That Neurontin can be a buggar to tolerate but I persevered and it has actually lessened the terrible pains I was getting in my head generally - especially during mental exertion. Prescribed actually for pain it is also I noticed a drug used for epilepsy; and the two for me seem to have 'worked'.

Maybe my diagnosis of epilepsy is strictly true (though I was subjected to EEG etc. I recall) but the drugs seem to have helped quite a bit. The Epilim most noticeably I think - no more falling unconscious in public and 'fitting' at any rate. I have noticed though that anti-convulsants are sometimes prescribed for 'ME'. There was something about them if I recall correctly in the ME Association's Clinical Issues guide.

Will try and dig it out for you Leela if you like.

 

[Enid]

I had a similarly good reaction from Neurontin Firestormm - originally low dose for pain raised to full epilepsy dose. It gave good sound sleep too. All in all a bit of turning point for me regarding anything like "seizures". Didn't of course change all the other symptoms.

 

[Firestormm]

Yeah I forgot to mention the sleeping Enid. I too did not associate it with that but for sure and in general I am sleeping 'better' than before. Still not for the full six hours mind, I still wake but much deeper when I do

There is more to these 'seizures' as well. And that is that one learns to manage them or rather to 'cope' better I think. I mean if I feel one coming on then I am better prepared I guess. I still get them mind but mostly at night - why I need assistance during this period really. I think I could probably manage things on my own though now. Be good to be independent once again