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#1 sleepyhead84

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Posted 13 October 2008 - 10:09 AM

Hi all,
I'm not sure where to begin. So I was diagnosed with N last year, or at least that's what I heard. Now the nurse calls it idiopathic hypersomnia and the doctor, well, I swear he called in N. Anywho, I'm on Xyrem and Provigil regardless. At my doctor appointment last week, the doc told me I have some apnea which he told me about last year and I went to see an ear nose and throat doc who said that my airways are fine. But my sleep doc is mad since my throat closes when I say "ahhhh" and my sleep test showed apnea. So that's the background of my question.

Whenever I try to sleep in, I get these electrical jolts that wake me up. After a while they get a bit painful. I've looked on other sleep sites and people are saying it's from anxiety (which I doubt as it doesn't apply to me) or apnea. Does this happen to anyone else?

I'm just trying to make sense of my diagnosis. It's all so confusing!

Thanks!
Erin

#2 Chuck Z.

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Posted 13 October 2008 - 01:43 PM

And here I thought I was the only one! smile.gif

I don't know why it happens, but it does. I find that it happens more often when I am overly tired. When I attempt to take naps, there is a switch in my head that jolts me awake - when this jolt is strong, it feels like an electrical shock/buzz in my head.

#3 Marcianna

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Posted 13 October 2008 - 01:52 PM

I have only had that happen a couple of times and It never occurred to me to ask a doctor about it. It is always in my toes and it hurts like all crazyness! I am always awake when that happens though. I was struck by lightning this past summer and assumed that it was like some sort of "Zap" flash back lol.... Maybe I am experienceing the same thing? or maybe I'm nuts....

#4 sleepless sleeper

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Posted 13 October 2008 - 02:32 PM

Now the nurse calls it idiopathic hypersomnia and the doctor, well, I swear he called in N.

My first tests pegged me w/ idiopathic h.s. and/or narcolepsy. My second tests, definite N.

I have:
1. nonstop EDS
2. hypnopompic hallucinations, sometimes hypnogogic
3. cataplexy
4. sleep paralysis

It seems that narcoleptics are supposed to wake up refreshed, whereas h.s. do not. I don't remember the last time that I have woken up refreshed from a nap, or any sleep for that matter, but I have the other (ALL) symptoms. So either you can have both, or the AMA needs to change the definition of N and get rid of the "refreshed" word.

I am also blessed to have insomnia.

I get these electrical jolts

I get electrical jolts, but they are not painful. I am not usually asleep, either. It is always in my spinal cord in my neck and its more like an electrical spasm. I've wondered if I was having seizures because I have what I call stop motion editing with time. Like brief milliseconds of time that are repeatedly cut out and tossed to the wind. What are your's like?

What's interesting is that last Christmas my mom-n-law stayed with us and said that I had symptoms similar to some of her MS patients. At the end of last January I visited my sleep doc and told him this and also about the electrical spasms. He sent me to (I just typed ess for see - anyone else do this) see a neurologist (my sleep doctor specializes in internal and pulmonary medicine, he's not a neurologist). I sent him an email asking if I should take my MRIs that I had done 6 months prior, which he replied no. I should have known better. Anyway, I get to the neurologist only to hear that my doc wrote in my chart that I thought that I had MS. After years of mis-dx's and being called a hypochondriac I was really ticked off.

**I'm going somewhere with this.**

The dr thought that probably it was my dexedrine, but he wanted to see my MRIs. Duuuuuuh - blank stare - drool. I had one taken of my brain by accident when it was supposed to be my neck, so I ended up with both. Anyway: I was so angry that the only thing that I focused on for the rest of the session was the comment that my sleep doc made. I know that he was being helpful. I am postive and truly believe he was not implying anything, however, I asked the neurologist a couple of times to please change from that to "I was told that some of the symptoms that I experience from N were similar to MS."

Since then (I never sent my MRIs to him because I'm sure that the radiologist would have seen any lesions and also the neurosurgeon that looked at them for my herniated disk would certainly have noticed any) I have meet a person that has MS and lo and behold, he has what he calls electrical shocks that also seem to splice up time for him.

I do not think that these diseases are overtly related, but they can both be auto immune diseases. In most cases a person (at least I'm convinced) is most likely predispositioned to get a certain disease except in rare cases such as extreme radiation sickness, etc., possibly even then. Conversely, if you're not predispositioned, then most likely you won't get it. There was research published a few years ago that showed some prostitutes in Africa had been repeatedly exposed to the HIV virus, yet never contracted it. They found what they believed was a genetic connection, please don't ask me details - you'll have to search for yourself. I was just trying to give an example of what I'm saying.

Anyway, I am not a medical professional, but I deeply believe that there are some strange connections within our infinite neuropathways and dna strands and they make shortcuts, deviate, overlap, backtrack, and do all sorts of strange things to provide us with a mix of odd symptoms. We suffer from a neurological disease (I don't call it a disorder because our society puts a negative connotation on that word) that is, as of yet connected 1. to low or a lack of hypocretin/ orexin found in the hypothalamus and 2. auto immune disease, and 3. a certain gene(s), which is probably the cause of 1. and the predisposition factor of 2.

1. is also associated with other diseases. It is also connected with the body's clock for sleep and appetite control. Hence many diseases regarding weight, REM, nutrition, etc.

2. covers a myriad of health issues, including N and MS.

Why isn't it possible for a person's brain to pick up a few of these other diseases' symptoms? If it's all neurological, which is still incredibly misunderstood by even the most advanced medical professionals, and if the same genes are involved, then how can it be inconceivable that N can't absorb a few of these symptoms? Or maybe, rather, the question is, once 1. and/or 2. take place, and 3. is already in position, could a slight amount of one disease be developed when another becomes full blown? I know that it is not unheard of for people to have multiple problems, -my daddy is the posterboy for that- but could it be that our mutant genes provide for these slight amounts of one disease to be similar to a parasitic conjoined twin to N?

You've most likely noticed that I've given a lot of thought to this lately, because not only is my N a *BEEP*, but these other symptoms make it the mother of all *BEEP*es.

Then again, at least I'm not laying in bed dying with my children crying. Anyway, that's my perspective on electrical jolts. If you find out what yours is, please let me know. I'd appreciate it.

Also, I noticed today, for the (I don't know) 5th to 10th time, my vision kind of flicks on and off. Like the light very quickly fades in and out in the room. Have you experienced anything like this?

#5 sleepless sleeper

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Posted 13 October 2008 - 02:34 PM

QUOTE (Marcianna @ Oct 13 2008, 12:52 PM) <{POST_SNAPBACK}>
I was struck by lightning this past summer


Me too, but it was 17 years ago (17?!! where did that time go?). I had symptoms before then.

#6 sleepless sleeper

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Posted 13 October 2008 - 02:47 PM

QUOTE (Marcianna @ Oct 13 2008, 12:52 PM) <{POST_SNAPBACK}>
It is always in my toes and it hurts like all crazyness!


I get tingling/numbness in my hands, fingertips, heels, arches, and toe tips. Two neurosurgeons say it is not related to my c4/c5 herniated disk, and last year I had a nerve conductor test, which ruled out pinched nerves. They and also two neurologists (I've moved) have no reason for these. Stretching a (I think it's called) brachial tendon helped with my hands a bit, but nothing for the lower body. The other day I went with a friend to work out with weights for the first time in years, and between the cataplexy attacks, I enjoyed tingling, pins and needles, and numbness in my hands and the first time in my forearms. When the trainer told me to grab a bar over my head and allow gravity to stretch out my body, I began to pass out. The whole situation was embarrassing, and I'm going back for more tonight. Wish me luck. wink.gif

#7 Marcianna

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Posted 13 October 2008 - 03:12 PM

I hope we get tons of feed back on this subject.... I am wondering if I should be worried about it or not... since the lightning thing I figure I would give it a year or so before I brought it up.... but now...hmmm..... Great subject Erin thank you for bring this up!

To sleeplesssleeper: I cant believe you are working with wheights! OMG I would drop them for sure! OUCH! Your are crazy brave for it!!!

#8 mtc

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Posted 13 October 2008 - 03:27 PM

QUOTE (Marcianna @ Oct 13 2008, 03:12 PM) <{POST_SNAPBACK}>
I hope we get tons of feed back on this subject.... I am wondering if I should be worried about it or not... since the lightning thing I figure I would give it a year or so before I brought it up.... but now...hmmm..... Great subject Erin thank you for bring this up!

To sleeplesssleeper: I cant believe you are working with wheights! OMG I would drop them for sure! OUCH! Your are crazy brave for it!!!


I have those electrical sleepstarts too. I have asked every neurologist I have seen over the past twenty+ years no one has been able to give me a difinitive answer. What I have learned is they are called sleepstarts and can be caused by medication, too much caffine and being overly tired. They are also benign. I hope this helps a bit.

#9 Marcianna

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Posted 13 October 2008 - 03:40 PM

QUOTE (mtc @ Oct 13 2008, 08:27 PM) <{POST_SNAPBACK}>
I have those electrical sleepstarts too. I have asked every neurologist I have seen over the past twenty+ years no one has been able to give me a difinitive answer. What I have learned is they are called sleepstarts and can be caused by medication, too much caffine and being overly tired. They are also benign. I hope this helps a bit.


hmmm very interesting. Overly tired? really? lol... I'm just kidding... Actually the more I am seeing with all your responses, The more I think it was the lightning. So hopefully for my situation it will just go away...



I leave you to discuss... biggrin.gif

#10 angellus

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Posted 13 October 2008 - 04:28 PM

QUOTE (Marcianna @ Oct 13 2008, 04:40 PM) <{POST_SNAPBACK}>
hmmm very interesting. Overly tired? really? lol... I'm just kidding... Actually the more I am seeing with all your responses, The more I think it was the lightning. So hopefully for my situation it will just go away...



I leave you to discuss... biggrin.gif


where are all you people standing or doing to get struck by lightning? Does Melting a 4 foot long screwdriver count as lighting on a 220 line. I i remember were sparks and my face being sooty. That's what you get when someone with a finance degree install a commercial conditioning system...lol

I actually think i fell asleep when i did that. and.. I just hijacked this thread....

#11 sleepyhead84

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Posted 13 October 2008 - 07:48 PM

Ah so at least I am not alone. The nurse said those jolts are when the brain changes sleep stages (goes from a deeper sleep to a lighter sleep) and is probably from my apnea. But really I'm not sure. I don't think she is either. She was concerned about whether the jolt starts from my legs, which it doesn't.

I've never been struck by lightening. But it feels like I am when I get those jolts!

Sleeplesssleeper, interesting to note that my mom has MS. I should ask her if she experiences that. And my mom, she gets hypnogogic hallucinations and sleep paralysis when she naps...

Erin

#12 sleepless sleeper

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Posted 13 October 2008 - 08:54 PM

QUOTE (angellus @ Oct 13 2008, 03:28 PM) <{POST_SNAPBACK}>
where are all you people standing or doing to get struck by lightning? Does Melting a 4 foot long screwdriver count as lighting on a 220 line. I i remember were sparks and my face being sooty. That's what you get when someone with a finance degree install a commercial conditioning system...lol

I actually think i fell asleep when i did that. and.. I just hijacked this thread....


I don't have the energy to pay attention to how to start a new topic for this. You start it and I'll tell you all about it. but I was indoors. Marcianna, you'll have to let us know, too.

#13 sleepless sleeper

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Posted 13 October 2008 - 08:58 PM

QUOTE (sleepyhead84 @ Oct 13 2008, 06:48 PM) <{POST_SNAPBACK}>
Sleeplesssleeper, interesting to note that my mom has MS. I should ask her if she experiences that. And my mom, she gets hypnogogic hallucinations and sleep paralysis when she naps...

Erin


Let me know, please. It sounds like what I experience is not painful compared to what you guys go through, but I'm still interested to find out more.

#14 Marcianna

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Posted 13 October 2008 - 10:05 PM

QUOTE (sleepless sleeper @ Oct 14 2008, 01:54 AM) <{POST_SNAPBACK}>
I don't have the energy to pay attention to how to start a new topic for this. You start it and I'll tell you all about it. but I was indoors. Marcianna, you'll have to let us know, too.



I started a thread on the subject in free writing.
Here is the link:Lightning Strikes and other YIKES!!!!!

Come and share your stories of run ins with Mother Nature!

#15 Kirstie

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Posted 14 October 2008 - 04:04 AM

QUOTE (sleepyhead84 @ Oct 14 2008, 12:48 AM) <{POST_SNAPBACK}>
Ah so at least I am not alone. The nurse said those jolts are when the brain changes sleep stages (goes from a deeper sleep to a lighter sleep) and is probably from my apnea. But really I'm not sure. I don't think she is either. She was concerned about whether the jolt starts from my legs, which it doesn't.

I've never been struck by lightening. But it feels like I am when I get those jolts!

Sleeplesssleeper, interesting to note that my mom has MS. I should ask her if she experiences that. And my mom, she gets hypnogogic hallucinations and sleep paralysis when she naps...

Erin


My husband too suffers with these electric shock type jumps through his body, he says it is one of the worst things about having N (not sure of the relevance but he has hypersomnia, so never feels refreshed after sleep either), I'm pretty certain his consultant called them hypnic jerks....? but we know that when he is really tired they seem to be worse and they jolt him out of the sleep he's so desperate for

#16 m00se

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Posted 15 October 2008 - 02:36 PM

The term you all want is probably this: myoclonic twitch.

#17 Lais02

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Posted 18 October 2008 - 11:51 AM

QUOTE (sleepless sleeper @ Oct 13 2008, 01:47 PM) <{POST_SNAPBACK}>
I get tingling/numbness in my hands, fingertips, heels, arches, and toe tips. Two neurosurgeons say it is not related to my c4/c5 herniated disk, and last year I had a nerve conductor test, which ruled out pinched nerves.



I get the jolts in my arms and sometimes my neck. I had no idea this was in any way related to N. I started going to Neurologists as early as age 14, but none of them ever figured anything out. They never related it to N either, or maybe I'd have been diagnosed sooner.

#18 Mike M

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Posted 18 October 2008 - 01:36 PM

I keep finding this thread fascinating because I too experience "jolts." They are often worse when I am more run down or injured in some way. They also range from spasms to electric pain. I had never associated them with narcolepsy before reading this batch of comments. Seriously, you have to respect the total weirdness of this condition.

#19 Henry G

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Posted 18 October 2008 - 05:09 PM

Hypnagogic Spasms

It can happen occasionally in normal individuals.
It's the body getting out of sync. Like the body falls asleep first and the mind freaks out - or the other way round.

Even cats and dogs might get the one or two jolts .

When it becomes chronic, it could be many things but my doctor in Brazil assured me it was stress related.
I heard that before from other ppl.

In my case it has been taking a long time for it to get fixed. But what I believed would be impossible (3 years of this crap) seems now to be happening. Frequency and intensity has waned from a once pretty unmanageable condition (couldn't fall asleep - or even relaxing barely dosing would make me jump; I was getting self-conscious it could happen in front of people) - anyway to something more manageable (5 jolts without drugs? I dont know for sure)

Rivotril / Clonazepam is what I have been taking to try and control the condition. It is an effective anti-spasmodic but with problems:

  • May increase your Narcolepsy
  • May interactive with other meds
  • May create tolerance
  • Can be extremely addictive.
Fortunally I haven't encountered any of the above.

But I have met non-Narcoleptics extremely addicted to the substance ; hence one should treat it with utter care - never increase the dosage (a temptation I might add since Rivotril does give you a cooling lullaby moon-like bliss). Clonazepan makes you pretty chilled-out de-stressed where you care less.

The quantity recommended was minute 0.5mg ; very easy for the patient to slip into taking more.

Recently I've been trying to not take any at all before going to bed.

Allegedly this can be dangerous - since if you take any class of benzodiazepam for a long period and suddenly stop your body may experience one massive withdrawal shock.

Anyway no shock so far. but still a couple of jolts before falling into deeper sleep.

#20 duff8

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Posted 18 October 2008 - 06:11 PM

I think you need to focus on the initial issue, sleep apnea. Untreated sleep apnea can be dangerous. The most important part of this is to get treated for the sleep apnea. Then, and only then can the IH or N or whatever be treated. Just my two cents. My hope is that you know you are not alone.