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Had First Major Seizure Lasting 2 Hours


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Yesterday I started having what I thought was my normal TIA but it turned into a major seizure (tonic ? ) lasting 2 hours. I ended up getting an ambulance ride to the the ER .. And since then I've been on Klonopin all day to keep it under control.

What I thought was so interesting about it was that at times I couldn't breath at all without gasping for large amounts of air. I had to open my mouth wide in order to get air in ... It was as if my lungs wouldn't work otherwise ... And after gasping for air, my jerking would start up again ... it was a nightmare to say the least ..

any ideas ? Are seizures normally accompanied by this kind of breathlessness ? thanks

ps ... for some reason, the people in the ER didn't understand why I had to mouth breath like that and told me to stop it ... what?

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I am so sorry for your episode. The experience sounds horrendous and to have the ER people tell you to stop breathing is just too, too much.

I hope today begins a healing peaceful period for you.

yeah, i was totally surprised that they didn't know why i had to breath like that ... what do they learn in med school anyways ?

instead i got some sort of lecture on carbon dioxide or whatever ... ****, I was just trying to breath ...

thanks for the well wishes

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Wow, that sounds scary! I'm glad you're better today. I know nothing about seizures, so can't answer any of your questions. Did they check your blood sugar by any chance?

It was terrifying ... the upside was that I was at my docs so that I could show her what my TIAs were like when this happened .. she was great and made it as easy as possible ...

I think they checked my glucose... I wasn't mentally available most of the time .. they ran labs and did a CAT scan in the ER .. both were "ok" ... I'm not sure what that means anymore though .. I just learned that I had lung scarring on a CAT scan last year and wasn't told about it.

I have a call in to complain about my treatment .. my nurse told me that the doc wasn't going to run a CAT scan on me until he recommended it to him. :angry: NOW, why would a nurse tell a doc what to do ? Or was the nurse being an *** ? :blink: One other thing they kept doing which was insane was to ask me yes or no questions while my head was bobbing. How can anyone be stupid enough to ask those questions of someone who couldn't hold their head steady ? I felt like they were making fun of me ... yep, heads will roll soon .. lol ...

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I'm glad you are okay.

Thanks Lieze,

Me too ... I'm on Klonopin just to be sure and I really get nervous when my heart starts to pound again or I get SOB .... it just keeps happening out of the blue ... :ph34r:

I was thinking that others here had seizures too ... yes, no ? Anyone get that feeling that their lungs have stopped working / total breathlessness and / or heart pounding ?

my Klonopin has kicked in so I'm off to bed ... g nite ... Dizzy

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I have a question - you said it was what you thought was a normal TIA - that is a precusor to a stroke or a mini stroke. When you have those - you usually have cognitive function problems and possible paralysis of limbs or face. I've had a couple of TIA's and what you're describing isn't a TIA. That's why they did the CAT scan to see if there was any blockage from either a clot break off or a vein breakage (probably, my guess). But, what you are describing has happened to me. It comes along with a POTS eposiode and you are right - you can't seem to catch your breath and you feel like you're smothering. I do the hyperventilate thing too. I recently read why POTS patients do that and can't remember tonight what it said. I think I printed it out and will look for it tomorrow. After I have one of these eposiodes I'm totally wiped out - it zaps all my energy. I've only had it happen a few times, but it is scarry. Last time it happened, I was trying to work out and it was after I'd done some leg exercises. My husband said it took all the blood away from my brain and put it into my legs and he thinks that's why you feel the lack of oxygen - because of the blood flow not carrying it to the brain. I'll have to find that article to make sure his theory is right - but that seems reasonable to me. We had to just quit for the day. I sat in the gym doing the hyperventilating thing and slowly got control of my breathing and got well enough for my hubby to help me walk out. I was very weak after that and felt like I'd done a major cardio work out - but hadn't. Who knows what my heart was doing though. What were you doing when the attack started? Were you doing anything that would have diverted the blood away from your brain, or caused it to pool in your legs?

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Hi Issie

This definitely wasn't a TIA. My TIAs, or thats what we think they are, are when my mind shuts down and I start speaking garbable words. Did you see the video of that newscaster who did this on air ? That's what I do too. I also get REALLY angry / frustrated with anyone trying to talk to me because I'm trying to make words but can't ...

I've been having TIAs for a long time now ...

All I had done that day was get up, take a shower, eat and go to my docs ... after that appt I stopped by my cardiologist office for a second and the went to a HFS but never made it. So, nothing stressful ... BUT ... in the last few months, before XMAS, I've noticed that I don't feel well if I try to do too much in the morning. I'd already switched all my appts to afternoon ... I'm getting shakey in the mornings ... oh and after all these years, 5 and 1/2 I still have to eat a meal every 2 - 3 for energy ...

I wonder why we're unable to catch our breath. I'd love to see what you've found out about it. I've been sob for a few months now so my cardiologist is looking into it for me ...

I hear you on being tired afterwards ? Did you have the jerking and convulsions too ? That was quite a workout for me ...

I have OI, so getting blood to my brain is a constant problem. I've had to lay down every few hours for an hour to fix this but since it starts to drop immediately, I only have a few minutes or maybe an hour of feeling normal ...

thanks... Marcic

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I have had seizures, I did not experience the breathing issues. I also have only a few seconds of recall. In other words

I have partial consciousness - I think as I'm coming out of it. It is always (in fact)

longer then it seemed to me.

HI Pat,

Thanks for replying ... I "think" it's good that you didn't experience the breathing problems. The best way I can think to describe it is if you've been under water too long and come up gasping for air. I had to deep breath like that quite a bit but then it would stop again ... There was no way in **** my lungs were going to get any oxygen without that type of breathing though ... something shut down ...

I've been trying to understand the different types of seizures but I'm really too drugged up right now to understand it ... And I was really just trying to see if it was going to happen again.

I was in and out of consciousness .. or else maybe it was that I simply couldn't hear or respond at times ... at one point when most of my jerking has stopped, I welcomed hearing someone's voice and attempting to talk on my own ... I'm a people person though and always need to talk when I'm nervous or having blood drawn ... it soothes me ...

what a nightmare this was ... I was in and out of sleep most of yesterday even without taking Klonopin. I just didn't wake up long enough to remember it ... I feel a little better today ... we'll seee ...

thanks for all your support ...

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Does anyone know if this could be related to allergy meds ? I read that antihistamines affect more than just our histamine receptors ... even the second generation ones aren't sophisticated enough to stick to just histamine receptors ... so these affect other receptors as well ..

I was on Claritin, Nasalcrom and Benadryl at times during the last week ...

other than that, there really wasn't anything new in my regime ...

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Does anyone know if this could be related to allergy meds ? I read that antihistamines affect more than just our histamine receptors ... even the second generation ones aren't sophisticated enough to stick to just histamine receptors ... so these affect other receptors as well ..

I was on Claritin, Nasalcrom and Benadryl at times during the last week ...

other than that, there really wasn't anything new in my regime ...

Benadryl is known to cause some people to have Parkinson's type shakes. It does me that way. Any antihisitamines can affect the resporitory system. So, you might have figured part of it out.

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Does anyone know if this could be related to allergy meds ? I read that antihistamines affect more than just our histamine receptors ... even the second generation ones aren't sophisticated enough to stick to just histamine receptors ... so these affect other receptors as well ..

I was on Claritin, Nasalcrom and Benadryl at times during the last week ...

other than that, there really wasn't anything new in my regime ...

Benadryl is known to cause some people to have Parkinson's type shakes. It does me that way. Any antihisitamines can affect the resporitory system. So, you might have figured part of it out.

thanks ... I'm too drugged out to research this right now but it sounds familiar. I'll have to look at that closer ... especially since this was the newest addition ... tc ... "extra" dizzy ... :blink:

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I've had these kind of seizures before. They aren't uncommon with dysautonomia, but doctors only recognize two types of seizures: epileptic and "other" (mental problems.) Which means if your seizure is NOT epileptic in nature you are either mentally disturbed or faking it and you will be treated as such, including but not limited to doctors poking fun at you, staring at you or walking away in disinterest.

The best emergency treatment I've found is fluids and oxygen.

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antihistamines (or decongestants)can prolong your QT wave. And can cause serious heart rhythm problems.

You could talk to a pharmacist to see if any other meds you took compounded the effect.

Cipro is one I think. Norpace is one. This is very unlikely but can happen.

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I've had these kind of seizures before. They aren't uncommon with dysautonomia, but doctors only recognize two types of seizures: epileptic and "other" (mental problems.) Which means if your seizure is NOT epileptic in nature you are either mentally disturbed or faking it and you will be treated as such, including but not limited to doctors poking fun at you, staring at you or walking away in disinterest.

The best emergency treatment I've found is fluids and oxygen.

Sugartwin,

I'm sorry to hear that you've had some bad experiences with doctors. We all have but I prefer to think that is the exception and not the norm. As soon as I've stabilized, I plan on speaking with someone at this hospital or writing someone in the patient advocate arena about my experience so that this hospital can improve on their treatment. My insurance companies will be hearing about this too ...

I'm still not up on what's considerered epilepsy ... but I thought it involved any type of seizures.

I've seen info on the web that discusses various types of seizures so maybe what you're saying doesn't apply anymore or at least not where doctors have this info available to them.

I'm still leaning towards the idea that one of my allergy meds brought this on. I felt really weird on both the benadryl and claritin ... But, I also was taking Nasalcrom from time to time ...

The only relief I've found from my petite mals and what I think are TIAs is to sit completely still and wait for it to go away.

tc ... dizzy

PS ... I've been sleeping a lot since this happened but got out yesterday to run some errands with a friend. Still feeling waaaaaaaaaaaay too drugged to enjoy life though ...

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antihistamines (or decongestants)can prolong your QT wave. And can cause serious heart rhythm problems.

You could talk to a pharmacist to see if any other meds you took compounded the effect.

Cipro is one I think. Norpace is one. This is very unlikely but can happen.

Thanks Pat,

Like you I think it was the antihistamines that got me ... I have a left bundle branch block so I'm an easy mark ...

With these chronic illnesses, it's always something, isn't it ? tc ... dizzy

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has the Dr. ever mentioned QT waves to you?

Hi Pat,

Not that I remember ... I have a left bundle branch block which shows up on my EKGs. I found this when I googled QT waves ...

Due to pathological conditions Hypothyroidism, a condition of low function of the thyroid gland, can give QTc prolongation at the electrocardiogram.

A shortened QT can be associated with hypercalcemia.[15]

I just had some labs drawn about 2 weeks ago and my thyroid antibodies have gone from 3? to 46? in the last few months which is when I started getting winded a LOT easier ... I wonder if there's a connection.

I'm just waking up from a nap so I'm not ready to understand QT waves yet so I'll have to get back to this ... thanks though ... dizzy

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http://celiacfacts.wordpress.com/2010/11/30/progressive-myoclonic-ataxia-associated-with-celiac-disease/

this looks like what happened ... I knew about the myoclonus and ataxia being from gluten but didn't realize this part ... bummer ...

this explains why I'm running into things again too ... my ataxia is back ... I thought it was the Klonopin ...

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