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Seizure-like episode


RunnersHi
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Hi all - I’m new here but not new to CH. I was diagnosed 15 years ago and, as I’m sure with most of you, my headaches have evolved and I have experienced some different symptoms/presentations year on year. 
 

I had recently been enjoying some respite and hadn’t had a bad attack for about 18 months, which gave me hope that maybe I was leaving them behind me. However, last week the ceasefire was well and truly abandoned and I had one of my worst attacks ever.
 

After about 4 hrs of writhing around on the floor and banging my head into things my wife took me to the ER because we didn’t know how to stop this one. This attack was already different to most others as I had vomited 3 times, which has only happened twice before in 15 years. I had been in the hospital bed for about 30 mins before I started to find it difficult to form sentences and I briefly lost consciousness a couple of times (though I think that was probably just from hyperventilating on the oxygen).
 

However, soon after, I began to shake uncontrollably (not rigorously like a seizure, but significantly more than shivering). As this happened, my eyes also rolled back in my head and I couldn’t get them to come down. My hands began to spasm and contort and my right knee locked at a 15 degree angle. At this point I felt an electrical sensation all over my body - not like pins and needles but more like when you touch an electric fence but over every inch of my body. This all lasted for about 30 seconds and I was fully conscious and aware though could not speak.

It took about another 30-40 minutes for the headache to subside so all in all about 5.5 hrs.

Has anyone else experienced symptoms like this before?

 Thanks 

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Wow this sounds down right awful! I can't say that I have experienced any of the symptoms but am curious if they ran any type of tests while at the hospital? These symptoms certainly seem to warrant some testing? The inability to speak or control your eyes and body parts sound a bit stroke like.. 

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Thanks @Bejeeber and @BoscoPiko. Yes, had a CT and blood panel but nothing to report. The doctor and nursing staff suggested it was an anxiety attack but I’m skeptical - I’ve never suffered with anxiety before and having had CH for many years already, I’m not worried during attacks as I know they will resolve soon enough. Moreover, I don’t think I’d be capable of anxious thoughts as the pain is more or less the only thing you can think of. Overall, the doctor was quite dismissive because she said it couldn’t be a seizure if I was aware of what was happening and not a stroke or TIA because the CT was clear.

I’m waiting for an appointment with a neurologist because I’m interested to see if they have any theories.

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2 minutes ago, RunnersHi said:

Overall, the doctor was quite dismissive because she said it couldn’t be a seizure if I was aware of what was happening and not a stroke or TIA because the CT was clear.

Uff... It's always sad to see a Dr. being dismissive but unfortunately not surprising<_<  We are our best advocate when it comes to our health so I'm glad you are following up!  

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Yes, see the Neuro!!! That is NOT typical in my experience or from my reading. I really find it upsetting that you were sort of blown off too!

You need an MRI to see what is going on up there in your noggin Runners. It will tell them more about what is going on. Please push for that appointment!!

Also, were you on a non-rebreather mask breathing only pure O2 when you went out? I have huffed enough O2 on two occasions to nod off, but not from a cannula. That alone might be important.

ATB!!!

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3 hours ago, spiny said:

Yes, see the Neuro!!! That is NOT typical in my experience or from my reading. I really find it upsetting that you were sort of blown off too!

You need an MRI to see what is going on up there in your noggin Runners. It will tell them more about what is going on. Please push for that appointment!!

Also, were you on a non-rebreather mask breathing only pure O2 when you went out? I have huffed enough O2 on two occasions to nod off, but not from a cannula. That alone might be important.

ATB!!!

Thanks @spiny, yeah I’m definitely going to push for an MRI because I’ve never had one for CH. Also, RE the O2, it was just nasal cannula.

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Definitely should not be an issue with a cannula. Glare.......................... 

Any decent Neuro will order an MRI to check for 'other' stuff going on. That makes it important to get in quickly. This may have been a 'one of' situation, but perhaps not. 

The times that I blacked out on O2, it was when I did not feel the need to breathe. Meaning that I was O2 saturated and my body wanted some CO2 at that point in time. I just nodded off with my head against the tank. 

Some have blacked out from the pain in my reading, but few and seldom. How I would love that at times!!! But nope. 

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1 hour ago, spiny said:

 Some have blacked out from the pain in my reading, but few and seldom. How I would love that at times!!! But nope. 

I’m sure it’s terrible in its own way, but I know what you mean! Lol. Woke up with an attack last night from 1:30-5:00am, got a couple of hrs sleep and then another small one from 7:30-8:30. 
 

I’ve reached out to several neurologists now so hopefully I’ll get an appointment soon. I’ll post updates as I get them.

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I'll chime in with a ditto on the need for a neurologist (preferably one who's also a headache specialist) and an MRI!!

The thing that stood out to me in your last comment is the length of your 3.5 hour attack last night!!  Ima go out on a limb here and assume that you're not using high flow O2 to abort your attacks???  I've experienced those long assed hits before I found out about O2 so I would urge you to push for a script when you get in to see a neuro doc!!  

Dallas Denny 

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@Dallas Denny, thanks for the input. I think I’ll request it this time, it’s been a few years since I’ve had these long attacks and whenever I’ve tried O2 before it hasn’t really done anything for the pain. However, I’ve never used as a preventative measure in the build up/onset so could well help stop the attack in its tracks. 
 

Yes, the neuro I want to book in with most does specialize in both headaches and seizures but hasn’t returned my calls when I’ve left voicemails (strange that they don’t answer their phone). I’m going to drive there on Monday to schedule in person.

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40 minutes ago, RunnersHi said:

I’ve tried O2 before it hasn’t really done anything for the pain. However, I’ve never used as a preventative measure in the build up/onset so could well help stop the attack in its tracks

Yes, this is how so many of us have reported it is effective (and often the only way it is effective) - you wanna catch the attack near onset.

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There is a fairly thorough discussion of oxygen in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/.  It includes advice about how to get it and how to use it, and also some potentially useful discussion of a conversation you should have with your oxygen supply company as soon as the prescription is sent to them. 

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