Aa
Whoa! Seizures? Or spasms?
Well, Sunday I started having those weird seizure-spasm things again. Except much worse, and they kept happening. I would get one, convulse, then relax, then another one would happen. This went on until 3:00 or so, when I finally went back to bed and slept. I think I had a couple while I was asleep, but I'm not sure. They went away after my nap...
But on Monday, they were still going. I decided it would be best if I didn't go to work - little hard to explain why I'm jerking around! I put up with them until I went back to bed around 2:30 or so. Slept for four hours, then got up and felt much better.
Today wasn't so bad. I had a couple in the morning, but I decided they were so small that I could get away with being at work without anybody noticing me flopping like a fish.
So now that I've had so many, I can start analyzing exactly what's going on. I think these aren't seizures, but spasms - specifically, dystonia caused by damage to the basal ganglia or the spinal cord. (Probably the spine, because I keep feeling these centers of pressure, which then follow up with a jerking spasm.)
It's all the way involuntary, and the sensation builds up as a feeling of buzzing and tingling - rather like the feeling one gets in a limb after it's fallen asleep and has started waking back up. Or like the sleepy feeling in my legs and arms when I first wake up in the morning, before I start moving. It's like that, and the sensation gets worse and worse, until my back arches and my head goes back. I tend not to breathe, or hold my breath while this is happening. Or my back compresses, and my head goes toward my chest.
Am I the Lone Ranger on this one? Or has anybody else experienced anything like this?
But on Monday, they were still going. I decided it would be best if I didn't go to work - little hard to explain why I'm jerking around! I put up with them until I went back to bed around 2:30 or so. Slept for four hours, then got up and felt much better.
Today wasn't so bad. I had a couple in the morning, but I decided they were so small that I could get away with being at work without anybody noticing me flopping like a fish.
So now that I've had so many, I can start analyzing exactly what's going on. I think these aren't seizures, but spasms - specifically, dystonia caused by damage to the basal ganglia or the spinal cord. (Probably the spine, because I keep feeling these centers of pressure, which then follow up with a jerking spasm.)
It's all the way involuntary, and the sensation builds up as a feeling of buzzing and tingling - rather like the feeling one gets in a limb after it's fallen asleep and has started waking back up. Or like the sleepy feeling in my legs and arms when I first wake up in the morning, before I start moving. It's like that, and the sensation gets worse and worse, until my back arches and my head goes back. I tend not to breathe, or hold my breath while this is happening. Or my back compresses, and my head goes toward my chest.
Am I the Lone Ranger on this one? Or has anybody else experienced anything like this?
Boy, I do love Aetna... :-\
I've been scheduled for an MRI of the cervical and thoracic spine, but Aetna's so weird - they won't do both MRIs on the same day. So I've got a c-spine on the 5th, and a t-spine on the 6th of november. At first they had scheduled me without contrast, but fortunately I asked about it, and got it changed.
Muy importante! Whenever you're scheduled for an MRI, ask the radiologist office if it's with contrast. Make sure they know it's to check for MS lesions - they know the protocol, even if your neuro office does not.
I've been scheduled for an MRI of the cervical and thoracic spine, but Aetna's so weird - they won't do both MRIs on the same day. So I've got a c-spine on the 5th, and a t-spine on the 6th of november. At first they had scheduled me without contrast, but fortunately I asked about it, and got it changed.
Muy importante! Whenever you're scheduled for an MRI, ask the radiologist office if it's with contrast. Make sure they know it's to check for MS lesions - they know the protocol, even if your neuro office does not.
Phew! No, fortunately I've been diagnosed with MS - hah! So when I go to my neurologist and tell him this weird stuff is going on, he doesn't blow me off.
Went to see him today, and we think this is something going on in the spinal cord, because of the sensation of pressure radiating from my back. I've also got a lot of sensations that seem to be coming from the back - numbness, tingling, buzzing in my legs - and my legs are weak this weak. Not to mention bladder urgency and the other thing...
So I'm going to get an MRI of the T-spine, and we'll see what's going on in there.
SunnyToday, sometimes my arms do move, and my head too. It depends upon how strong the convulsion is. Like Wish, I feel extremely fatigued after a few hours of this activity. It's more like MS fatigue - my head feels foggy and fuzzy, and I end up with vertigo.
Fortunately today I haven't been having the spasms, but I do have these weird sensations in my torso and legs. It's like the volume has been turned down on my symptoms.
Went to see him today, and we think this is something going on in the spinal cord, because of the sensation of pressure radiating from my back. I've also got a lot of sensations that seem to be coming from the back - numbness, tingling, buzzing in my legs - and my legs are weak this weak. Not to mention bladder urgency and the other thing...
So I'm going to get an MRI of the T-spine, and we'll see what's going on in there.
SunnyToday, sometimes my arms do move, and my head too. It depends upon how strong the convulsion is. Like Wish, I feel extremely fatigued after a few hours of this activity. It's more like MS fatigue - my head feels foggy and fuzzy, and I end up with vertigo.
Fortunately today I haven't been having the spasms, but I do have these weird sensations in my torso and legs. It's like the volume has been turned down on my symptoms.
Hi Jen,
I have similar episodes, although I have not been dx'd with MS. I have a lot of the symptoms but no clear diagnosis of my condition, in general. I have seizures that are not typical. The closest definition of mine would be partial complex and absent seizures. At times I have a lot of muscle jerking, too (mostly when I am physically tired). My seizures begin with an elevator ride feeling up and down my spine and then my right arm and leg twitch and my head hurts (more than the usual). I may have one of these episodes, or as many as 5 in a row. Sometimes they turn into full blown seizures and both of my legs cycle (as in riding a bike) and I rub and smack my face a lot with my hands. Pretty attractive, huh?
After being off work for a little over 3 years, I finally completed the appeal process for Social Security Disabilty (OHIO) and had my hearing last week in which the judge ruled that I was unable to work in any vocation due to severe headaches, seizures, and other symptoms.
I definitely think you are doing the right thing by seeing a neurologist and I am curious to hear what he has to say.
Keep the faith and never give up,
Sue
I have similar episodes, although I have not been dx'd with MS. I have a lot of the symptoms but no clear diagnosis of my condition, in general. I have seizures that are not typical. The closest definition of mine would be partial complex and absent seizures. At times I have a lot of muscle jerking, too (mostly when I am physically tired). My seizures begin with an elevator ride feeling up and down my spine and then my right arm and leg twitch and my head hurts (more than the usual). I may have one of these episodes, or as many as 5 in a row. Sometimes they turn into full blown seizures and both of my legs cycle (as in riding a bike) and I rub and smack my face a lot with my hands. Pretty attractive, huh?
After being off work for a little over 3 years, I finally completed the appeal process for Social Security Disabilty (OHIO) and had my hearing last week in which the judge ruled that I was unable to work in any vocation due to severe headaches, seizures, and other symptoms.
I definitely think you are doing the right thing by seeing a neurologist and I am curious to hear what he has to say.
Keep the faith and never give up,
Sue
Now this is strange, but trying to keep myself awake all night makes everything strange. No help I'm afraid, just sharing a buried old memory you've aroused.
When I was in my twenties and some of my thirties, I had something very similar. I would feel very strange and fatigued suddenly, lie down on the floor, and start twitching violently all over, for several minutes. After I finished I would sometimes then fall asleep on the floor, and wake a few minues later, feeling weird. Now you may not believe this but it absolutely never occurred to me I may have been fitting. My knowledge and interest in medicine was non-existent. I just accepted it as part of being me.
Kind of feel it's too late in the day (metaphorically), to tell my doctors this now. I have a feeling they may not believe me, just you triggered off an old memory. Well, am having a sleep study soon, and my first EEG. This has got me thinking, maybe my problems have their roots further back than I think.
Sorry, this is of no practical use to you, just brought back a fairly incredible I forgot it memory with me. If I had bought that one symptom to a doctor decades back, who knows, they might have picked up on what was to come. Strange what some of us dismiss when we're young.
Thanks for letting me share that,
wish
When I was in my twenties and some of my thirties, I had something very similar. I would feel very strange and fatigued suddenly, lie down on the floor, and start twitching violently all over, for several minutes. After I finished I would sometimes then fall asleep on the floor, and wake a few minues later, feeling weird. Now you may not believe this but it absolutely never occurred to me I may have been fitting. My knowledge and interest in medicine was non-existent. I just accepted it as part of being me.
Kind of feel it's too late in the day (metaphorically), to tell my doctors this now. I have a feeling they may not believe me, just you triggered off an old memory. Well, am having a sleep study soon, and my first EEG. This has got me thinking, maybe my problems have their roots further back than I think.
Sorry, this is of no practical use to you, just brought back a fairly incredible I forgot it memory with me. If I had bought that one symptom to a doctor decades back, who knows, they might have picked up on what was to come. Strange what some of us dismiss when we're young.
Thanks for letting me share that,
wish
Do your arms move? I mean, when your head goes back, do your arms move out? Mine always fling outwards when my head snaps back and front (hmm, not safe, I hit anyone and anything that is near). Not so fun, is it? But I'll take these over those long seizures that last over 10 minutes any day though! :)
That feeling I get, that sneeze-is-coming feeling, it's more like I know it's coming, a sort of knowing feeling (i think they call this an aura or something like that), not really a feeling in my back. A few times I've sorta knew it was coming and then I jerked very small and it wasn't that bad, but when I get that feeling it always happens and it's normally rather violent looking. Thankfully, I usually don't get them one after another like you were describing, on my very worst days I've counted 15 or 16 of these, but that was the most I've ever had in one day (I finally went to bed in the afternoon and slept the rest of the day)
~Sunnytoday~
That feeling I get, that sneeze-is-coming feeling, it's more like I know it's coming, a sort of knowing feeling (i think they call this an aura or something like that), not really a feeling in my back. A few times I've sorta knew it was coming and then I jerked very small and it wasn't that bad, but when I get that feeling it always happens and it's normally rather violent looking. Thankfully, I usually don't get them one after another like you were describing, on my very worst days I've counted 15 or 16 of these, but that was the most I've ever had in one day (I finally went to bed in the afternoon and slept the rest of the day)
~Sunnytoday~
I could probably demonstrate it for him! I get the funny sneeze-is-coming sensation, but it's in my back. It's almost like my body wants to stretch out or convulse, but I don't get any rapid movement - it's a arch of the back, and sometimes the neck.
hmmm... i have something similar that they are calling possible seizures. I have a funny feeling, kinda like a sneeze or a yawn-is-coming-feeling that I get before they come, and then my head snaps backwards and then forwards and my arms fly outwards really hard. I usually stop talking when it happens, but it only last about 3 to 6 seconds. then it's over. I get them when I am very tired, and sleeping usually helps them to go away.
I hope this is just spasms for you, but I would describe it in detail for the neuro, and if possible get it recorded for him/her.
~Sunnytoday~
I hope this is just spasms for you, but I would describe it in detail for the neuro, and if possible get it recorded for him/her.
~Sunnytoday~
My gosh--that sounds scary! Especially when you are quite aware that you're unable to breathe. Can you get a tape of you doing this on like your telephone or something to show your neuro?
Deb
Deb
The not-breathing thing is weird, because I don't think I'm losing conscious control over my lungs. What happens is my whole torso clenches up, like a tonic spasm, and when that happens, all the muscles just want to tense up. Which doesn't leave enough room for me to breathe! I force everything to relax, and then I can breathe again.
I must have been writing this before you posted before me. I'm glad that you have an appointment.
Deb
Deb
The closest thing to me having something like this was years ago--I'd have one after another jerk whenever I was trying to get to slee (myoclonic jerks?). I understand that what I was experiencing wasn't serious, though.
Having so many, is a concern, because you are not breathing during these episodes. If you are having seizures, this is considered an emergency (status epilepticus--sorry about the spelling) because of the breathing issue. Maybe a call to the neuro may be warranted to put your mind at rest.
Hugs, Deb
Having so many, is a concern, because you are not breathing during these episodes. If you are having seizures, this is considered an emergency (status epilepticus--sorry about the spelling) because of the breathing issue. Maybe a call to the neuro may be warranted to put your mind at rest.
Hugs, Deb
I've got an appointment tomorrow at 10:45, so I'll get to tell the neurologist about it. Hopefully he'll have more of an answer than he did last time!
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