New BFS Symptoms Every Week

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GHayes420

Well-known member
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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
 
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.
 
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
 
One more thing. Don't ignore things like this, when you google. You have NONE of these symptoms, so I think you can check this off to NOT being neurologically related. And, we know the only reason you think it is, is because of your twitching...Other symptoms may occur if the apnea is due to a neurological condition. Symptoms depend on the underlying disease and what parts of the nervous system it has affected, but may include: Difficulty swallowing Voice changes Weakness or numbness throughout the bodyTwitching is not on the list! And, you don't have any of these symptoms. Try to keep that in mind. I know it's so hard. Last weekend I had laryngitis and spent the weekend wondering if it was a virus or if my vocal cords were paralyzed. I totally get it. (My voice is back btw).Mitra
 
I would like to join Mitra, because I was reading and translating some papers on central sleep apnea, and it is (as far as I can understand) never an early symptom of any severe neurological condition, it lways become evident when the brain damage is quite progressed. Most probably it is hyperventilation symptome, as somebody suggested before, adn I also read that a couple of our fellows went through it successfully. Wish you good resolution with your breathing trainings.
 
I can't wait for the results of your sleep study because I have the same problem (the one you described in your first post). It's really an awful feeling. However, if that can reassure you, I've had that problem well before the onset of bfs.What seems to be ''newer'' for me it's the ''panic attacks'' (I don't think it's the right term for what I'm experiencing, but I don't know how to call it) I'm having every now and then, while sleeping. Yesterday night, a little less than an hour after falling asleep, I woke up in a panic mode because I was not breathing at all and even after jumping out of my bed and walking in my bedroom I had problems breathing and really though my heart was going to explode. I can't remember all the details because I was confused and panicked but it is not the first time it happens to me since the beginning of this bfs crap. I wonder if it's related to some kind of apnea problem. Maybe I should do a sleep study too... but your first post scared me with the Central Sleep Apnea stuff! Anyway... good luck with your sleep study. I hope they won't find anything wrong.
 
Well Greg, you know I can relate to sleep issues with BFS, although mine are more related to the myoclonic jerks I get every night. I really hope they can do something for you after the sleep study. IF you have apnea, it will be easy to correct with a CPAP machine, although using that machine may take some getting used to. If it's not apnea, the only thing I can really think of is it being something like a myoclonic relaxation (jerks can be both positive and negative...I think Matt has had several of the negative/relaxation ones), but instead happening in your diaphragm, maybe? One thing is for sure on this, however - the sleep study will definitely rule out apnea. We are all very interested to hear the results. Keep us posted, man. I am sorry that you have to go through this.
 
Well I just got home from the neurologist. This is my general neuro, the guy who did my initial EMG and gave me my BFS dx initially. I was diagnosed as having severe obstructive sleep apnea. He said that the obstruction was only evident while laying on my back, and went away when I was on my side. My oxygen dipped below 90 several times throughout the study. Admittedly, I don't know if this dx is making my anxiety about my intense BFS better or worse. I have read too much about problems with people sleeping on their backs and nasty rare diseases, so I am not so sure how I should process this. The neuro recommended that I sew a tennis ball into the back of a tshirt that will force me to sleep only on my side at nights. He said that if that did not work, then I was to go back to him for a CPAP machine, but he didn't seem too confident that a CPAP would be that helpful. Does anybody have any experience good or bad with CPAP???Initially, when I met this neuro, he contributed my BFS to chronic sleep deprivation. I do notice on nights with less sleep, that my twitching is way worse the following day. On a side note, he happens to know the ALS specialist that I see, Dr. K, at Forbes Norris. He can tell I am still a bit on edge with this BFS diagnosis so he went into a detail about his fellowship that he did for MND/ALS. He said that they did see patients with this BFS disorder whose EMG's actually were not perfect, however were not ALS/MND. He said he and his group considered writing up a paper for a journal, but because there was already said papers available, they decided against publishing a study. He wants to start me on 400mg of Tegretol to see if it has any effect on the body-wide fasciculations. I will do a search on the forum and see if there was any success stories from Tegretol, I believe Docen and a few other current members have tried this drug. Thanks for listening. Greg
 
Hi Greg,in fact OSA often happens to the people who are generally well healthy otherwise... so I do not think you should add more worries...as for CPAP i only was translating some manuals :))) well, it is still a mask unit, and you must really use it carefully, but it helps to maintain your airways open and increases O2 saturation, so it allows patients to sleep. it might supply usually warm air, humid air etc., and modern models even can be in contact with your doctor sending files and logs so you would be always under control.I have read that except some nasal surgery, this is still the best noninvasive management in case of purely mechanical obsturction.
 
Greg! I have had that whole "Gasp for air" thing since i was a teenager!And dont get me started on the Sleep Paralysis nonsense. I was the poster child. Absolutely stress related / nervous system agitation blah blah ... My whole life I have found myself gasping for air while sleeping ... i mean its very random and sporadic - maybe on nights after I went out and partied .... and the next night. But way before i ever drank it would happen. And im perfectly healthy, just look at me hanging out on this board all day! SO HEALTHY! kidding ... But seriously its been years of this nonsense. So for what its worth it can be benign too..In fact man just a couple days ago I was working, sitting in my chair, and reading something, and I had to stop and take a deep breath because I realized I wasn't breathing properly. While awake. Happens to me somewhat frequently. I dont have an obstruction though.One other comment - very strange thing happened at the doctor the other day. The nurse couldn't get a reading on the Oxygen Saturation thingy she put on my finger. It simply wouldn't work.She tried a few times. Then I took it off and put it on my other hand, and it worked okay. Maybe my left arm is dead.
 
Greg,I wonder sometimes if a whole bunch of us have sleep-deprivation-related BFS. I haven't slept well, pretty much my whole life and now literally cannot sleep without taking some sort of sleep medication (prescription or OTC) and even then most of the time just toss and turn. I remember as a little kid, my eyelid would go on a twitching spree and my mom would tell me it's because I was tired.Anyway, don't worry about obstructive sleep apnea. It's ridiculously common. My husband has it, two of his cousins have it, it seems like every other guy I know has mild to severe apnea. And many have sworn by the CPAP machine and said that it's very easy to get used to and has made a world of difference to their lives, because they're now getting enough oxygen. Not to mention, people who have severe OSA are at high risk of dying of many things, so I'm very relieved you go this diagnosis.I think this could be the reason your BFS is so severe and maybe this will be the key to getting it under control.Mitra
 
I need to clarify - I'm happy you got this diagnosis, because you can now be treated and you will be okay!!! That sounded so wrong...Hugs,Mitra
 

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