Sleep problems are taking over me.........

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Sleep problems are taking over me.........

Postby Ghayes420 on October 21st, 2012, 1:07 pm

The thing about my experience with BFS that really really sucks, is that I get hit with new stuff seemingly every week. Everyweek it is something new, that I just have to sit there and scratch my head about. And its all secondary to the continous twitching that never relents. I will admit, this new symptom of sleep is one that really gets me on edge, let me explain why....

This started over two weeks ago...I notice that when I lay down, completely relaxed and ready to go to sleep, right before I go to sleep, when I am dosing off to sleep, I get an uncomfortable feeling and notice that I just FORGOT to inhale. Like there is a disconnect of some kind between my brain and my lungs that is affecting the breath reflex. I immediately wake up and feel a tad paniced as it is a scary feeling. I repeat this dose off/wake up cycle several times in the night before I can fall back asleep. This menas often not going to sleep until early in the morning.

Now....the above description has been experinced by a few people on this forum that I have talked to, however, my disturbances are getting worse and are now waking me even after I fall asleep as night as I awake seemingly every 1.5 -2 hrs, having to inhale and feeling a bit paniced. So now its even acting up WHILE asleep, not just before.

Here is my fear.....I am concerned that this will be dx'd as Central Sleep Apnea. I saw our original neurologist about this problem and he ordered a sleep study, which I hopefully will do this week. If, during this sleep study, that they confirm Central Sleep Apnea, and not Obstructive Sleep Apnea, or find nothing, you can expect a FULL STAGE freakout from me. It is VERY well know that Central Sleep Apnea is "very often accompanied with a neurological disorder such as Parkinson's, ALS, and MS." -- Mayo Clinic Web Site. To top it off, when I researched this topic, I found two people with the exact same sleep symptoms (along with multiple diagnosed neuropathy in several limbs) and they both discovered afterwards they had MS.

I can see the responses to this post now saying that "oh Greg, you are stressed, anxious, etc.". Duh, I know that, thank you. However I have been WAY more stressed before than I am now throught this 14 month journey (Hell, I just got an 'all clear' from one of the best) and my sleep has never been affected this way. Ever.

I will keep you updated on the results of my sleep study and will let you know for sure if this is Central Sleep Apnea or not, and then let you know what the neurologist says after that. To say I am a bit on edge about this new sx, would be an understatment.

Thanks for listening.
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Re: Sleep problems are taking over me.........

Postby Bosley22 on October 21st, 2012, 2:08 pm

Hey Greg, out of all the people on this board, you have been one of the one's that have helped me the most. I appreciate that like you will never know But i want you to listen to some of the advice you have given me, specifically in a pm. STOP GOOGLING!!!!! Like you have said so many times, you don't know these people's full stories, just bits and peaces. Yes, they might have CSA but they also probably have a whole sleuth of problems. (ie weakness). Listen to your own advice buddy, its good advice.
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Re: Sleep problems are taking over me.........

Postby Ghayes420 on October 21st, 2012, 2:23 pm

Thanks Chad, message well received. Just fyi... it was the neurologist himself who mentioned the posibilty of CSA. It was after that when I went and looked up what it was associated with.
I agree Googling "a symptom" is never a good thing, but in this case I was just looking for the definition of CSA and it associations. Of course stumbled on things I didn't want to read.
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Re: Sleep problems are taking over me.........

Postby Bosley22 on October 21st, 2012, 2:27 pm

Ahhh, i understand. It's happened to me a couple of times. What a biatch
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Re: Sleep problems are taking over me.........

Postby BFSBurger on October 21st, 2012, 4:03 pm

Hey - this may have no meaning for you but I wanted to add it to the pool of knowledge.

When I was healthy (circa - 2 months ago) Any time I would go out and drink heavily, and take Adderall (stimulant / amphetamine salts similar to Ritalin) recreationally, I would have this same thing happen to me on the nights afterwards.

In fact I would wake up in the middle of the night numerous times gasping for air because i stopped breathing. You probably already know this but its a recognized sleep disorder (apnea?). In addition to this, long before BFS set in on me, on these same nights, I would also have random muscle twitches.

I don't know what the correlation is but things are almost always tied together somehow. Amphetamine stimulants / caffeine / alcohol drinking .... fatigue aftermath caused this for me. Being rested (several days later) resolved it.

Again there seems to be a theme of body being taxed. Agitated. Overstimulated. Love this stuff, as twisted as that may sound. Love a good mystery. Because when the answer is found, it all makes total sense at that moment.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Sleep problems are taking over me.........

Postby johnnythejet on October 21st, 2012, 5:28 pm

It will pass, Greg. Stop worrying about it so much and linking every new symptoms to something its not. The fact that you are freaked out by this so much will only make it worse, as I'm sure you know.
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Re: Sleep problems are taking over me.........

Postby Seepi27 on October 21st, 2012, 5:35 pm

johnnythejet wrote:It will pass, Greg. Stop worrying about it so much and linking every new symptoms to something its not. The fact that you are freaked out by this so much will only make it worse, as I'm sure you know.



Greg, my sentiments exactly - but the Master Berater got there before me ;-)

You're fine, man. Crazy as a bottle of frogs, but fine.
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Re: Sleep problems are taking over me.........

Postby Gerard on October 21st, 2012, 6:01 pm

And I get there after not only the Master Berater, but also the Master Bater. :)

Here's what I have. I don't think you'll like it.

My guess (and it's only that) is you have a chronic over-breathing disorder - much of your symptamatology (air hunger, "forgetting" to breathe) is completely consistent with this. You've also been repeatedly told - by renowned specialists in one of the most 'litiginous" medical environments in the world - that you don't have a serious neurological condition.

You can chose to dwell on the something like 1 in a million chance they could all be wrong, or man up and deal with your anxiety. Because while the overwhelming weight of evidence is that there is nothing neurological going on that will kill you - stress, and anxiety, can. At the very least they can totally ruin your quality of life. That is the real enemy you need to face.

I hear you totally - we've all been there, and still are there sometimes. But the longer you stay in this mindset, the harder it's going to be to crawl out if it.

Sorry to be such an ass :)

Gerard.
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Re: Sleep problems are taking over me.........

Postby Ghayes420 on October 21st, 2012, 6:40 pm

No, you were no being an ass, but it certainly looks like you have hung around The Jet long enough.

Gerard wrote:
My guess (and it's only that) is you have a chronic over-breathing disorder - much of your symptamatology (air hunger, "forgetting" to breathe) is completely consistent with this.


I do think you have a good idea here with the over-breathing/low CO2 levels. I found this tidbit:

"Here's what's happening!

Your breathing rate is normally controlled by how much CO2 is in your lungs... Basically, you breathe Oxygen in for energy, your body creates CO2 which you breathe out...

When you're on edge you get into an anxiety breathing habit because of stimulation to the Central Nervous System - i.e. you breathe in more Oxygen than you need and you deplete your body of CO2...

Now what happens when you try to fall asleep?

Your body can finally relax - your breathing slows down and becomes more shallow, your anxiety drops... When the anxiety breathing ceases, just before we fall asleep, the body gets back in the habit of waiting for CO2 to trigger the breathing reflex...

Here's when things go wrong:

If you're CO2 depleted, it may take as long as 60 seconds for enough CO2 to build up in your lungs to trigger the normal, relaxed, unconscious breathing mechanism - unfortunately, before this happens your body may interpret some kind of prolonged pause in your breathing or airway obstruction and wake you suddenly.

The cure is very simple:

- Lie down on your back before going to sleep and relax as much as you can

- We need to build the CO2 up to a normal level, so when your breathing is relatively relaxed and shallow, just breathe out gently by relaxing the lungs, and wait until you get the first signs of needing to breathe in again

- Don't gasp, just breathe in slowly and shallowly, into your abdomen, and don't be afraid of the slight feeling of air-hunger - this is a good sign and does not mean you're low on oxygen

- Continue to breathe slowly, shallowly and relaxed. After every out-breathe, pause until the urge to breathe in again - this is the breathing reflex

if you need more long-term help check out Patrick McKeown's "Close Your Mouth" treatment guide to breathing pattern disorders"
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Re: Sleep problems are taking over me.........

Postby Ghayes420 on October 21st, 2012, 6:43 pm

I have been trying the above approach for a couple nights and it seems to help with the falling asleep a bit but not so much with the repeated awakening. At least it's a step in the right direction and further evidence of a psychological component.
Now I will see what the sleep study says and go from there.
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Re: Sleep problems are taking over me.........

Postby plainslady on October 21st, 2012, 6:52 pm

Proud of you Greggers for considering this may not be another end of the world symptom! (and you know I mean that with all the love in the world) :D

Frances
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Re: Sleep problems are taking over me.........

Postby andrewbfs on October 21st, 2012, 10:00 pm

Greg - I don't have the same symptom as you, but I sympathize with your situation, specifically where you write:
"I can see the responses to this post now saying that "oh Greg, you are stressed, anxious, etc.". Duh, I know that, thank you. However I have been WAY more stressed before than I am now throught this 14 month journey (Hell, I just got an 'all clear' from one of the best) and my sleep has never been affected this way. Ever." I, too, get the "well, it's because of your anxiety" reason from friends, family, PCP, even my neuro -- but what they don't always realize is that the anxiety kicks up AFTER the body starts exhibiting new, weird symptoms, NOT before. Frustrating sometimes. And hard to know just how much is caused by anxiety and how much isn't. Chicken and egg, as they say.

BOL w/ your sleep study. Glad to hear you're considering less dire causes, and hopefully you're on the right track with the breathing techniques.

I look forward to your report. I suspect that I may have a sleep study in my future, so I'm curious to read what it's all about.
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Re: Sleep problems are taking over me.........

Postby Ghayes420 on October 21st, 2012, 10:10 pm

andrewbfs wrote: - but what they don't always realize is that the anxiety kicks up AFTER the body starts exhibiting new, weird symptoms, NOT before. Frustrating sometimes. And hard to know just how much is caused by anxiety and how much isn't. Chicken and egg, as they say.


Thank you very much for understanding this. I try to explain this, but as hard as I try and it's not possible for others to understand. I thank you and glad to know I am not alone in this thinking. It is very hard to differentiate the two.
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Re: Sleep problems are taking over me.........

Postby Gerard on October 21st, 2012, 10:58 pm

Ghayes420 wrote:
andrewbfs wrote: - but what they don't always realize is that the anxiety kicks up AFTER the body starts exhibiting new, weird symptoms, NOT before. Frustrating sometimes. And hard to know just how much is caused by anxiety and how much isn't. Chicken and egg, as they say.


Thank you very much for understanding this. I try to explain this, but as hard as I try and it's not possible for others to understand. I thank you and glad to know I am not alone in this thinking. It is very hard to differentiate the two.


Two points to make here.

- by the time we are cognisant of our anxiety, we have probably already been anxious for a while.
- maybe, for us, bfs is how we manifest anxiety. I, for instance have never had classic anxiety symptoms (heart pounding, sweating, tingly fingers etc) in my entire life. But I have recently come to realise that although I may "feel" relaxed, I do somatise (ie feel physical symptoms) when I am under stress. Maybe bfs is just a further variation on this theme.
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Re: Sleep problems are taking over me.........

Postby mwagner on October 22nd, 2012, 10:28 am

Hi Greg!

I just read more about this on the Mayo site, and it looks like you don't have neurological issues to fear (honestly, Greg - you must have dug deep to find what you did - because short of a stroke, or brain stem issues, there wasn't much tied to neurology with CSA), but heart issues. And, I'm sure at your age, you don't have to worry about heart issues. But, probably a good thing to check this out, regardless, just in case it's related to cardiology in any way.

I suspect, and am almost sure, that this is all anxiety related. The fact that both you and Matt have had the exact same thing (and he was worried about Central Sleep Apnea as well), both twitch like there's no tomorrow, seems much more than a coincidence.

I'm just hoping and praying that somehow you can get a reprieve from your symptoms. The increase or change in your symptoms = more stress, more doctor visits, etc.

Keep us posted with your results. I'm thinking of you and sending lots of good vibes that this isn't CSA.

Hugs,
Mitra
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Re: Sleep problems are taking over me.........

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