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

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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

Postby mwagner on October 22nd, 2012, 10:33 am

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 body


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

Postby Yuliasir on October 22nd, 2012, 12:10 pm

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

Postby Jujulia on October 26th, 2012, 11:01 am

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

Postby seventhcandle on October 28th, 2012, 2:54 pm

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.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Sleep problems are taking over me.........

Postby Ghayes420 on November 20th, 2012, 2:34 pm

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
Last edited by Ghayes420 on November 20th, 2012, 6:52 pm, edited 1 time in total.
A very proud fasciculator since 8/14/2011. :)
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Re: Sleep problems are taking over me.........

Postby Yuliasir on November 20th, 2012, 2:45 pm

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

Postby BFSBurger on November 20th, 2012, 3:27 pm

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.
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 mwagner on November 20th, 2012, 6:13 pm

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.

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

Postby mwagner on November 20th, 2012, 6:18 pm

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

Postby Ghayes420 on November 20th, 2012, 6:37 pm

Ha ha Mitra. That psychology degree put to good use! You know, that I know, that you know, your intentions are always for the positive. That's why I am glad to have met you. :)

Thank you for sharing the good news on the CPAP. I have heard both hot and cold stories on the CPAP, but I remember a couple stories now of "it changed their life." That would be great, because like you, I never have been a good sleeper, ever. Its just recently the sleep problems have changed and morphed into more severe concerns.
Thanks for commenting!
A very proud fasciculator since 8/14/2011. :)
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Re: Sleep problems are taking over me.........

Postby garym on November 20th, 2012, 7:42 pm

Greg,

I have sleep apnea and use a cpap every night and have for probably 11 years. It definitely makes a big difference in my life and i cant function without the cpap. Don't get me wrong, I have a love hate relationship with the cpap mask but its better than the alternative.

Take care,
Gary
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Re: Sleep problems are taking over me.........

Postby BFSBurger on November 20th, 2012, 8:54 pm

Greg this probably already came up but have you tried the Melatonin thing yet?
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 Ghayes420 on November 20th, 2012, 9:07 pm

Hi Burger. Yes, I have gone down the melatonin path back in early 2011 when I was withdrawing from a benzo. I tried 3mg and as low as 300mcg. Either way I had terribly intense dreams that made me wake up in either a sweat or a panic. Maybe it was a combination of the OSA and the melatonin, who knows. My dreams are intense and memorable as it is.
With melatonin they were downright scary.
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Re: Sleep problems are taking over me.........

Postby BFSBurger on November 20th, 2012, 10:29 pm

Bear with me.

Consider having your Test, Free Test, Estradiol, and DHT levels checked?

Just humor me on this.

Anything tied to muscles is worth looking into.

My estrogen levels are extremely low. (it was a 6 ... with a range of 0 - 77).

3 years ago my E levels were a healthy 33 on that scale. So I have no idea why I am way down at 6 and I am aware of the bone density problems it can cause. (yes HIV meds can cause bone diseases...)

No idea why i checked these. Its just such a strange test result given everything else is normal.

My T is also low (in my opinion) for a 38 year old (400, with range 387-1100)

Never know. ...
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 andrewbfs on November 22nd, 2012, 10:48 am

Greg,
I know this has nothing to do with your particular situation, nor BFS specifically, but can you describe the sleep study for the curious amongst us? Among the things I'm curious about:
Was it done at a sleep center, or was it a "take home test," so to speak?
How many different probes/wires were hooked up to you?
What type of data are gathered?
Was it easy to sleep, given the hook-ups?
If you were observed during the test, how was the performed - camera, window, in-room?

Anything else you care to share about the experience would be great to know, too.

Thanks much!
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Re: Sleep problems are taking over me.........

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