Long-time Twitcher, First-time Poster

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: Long-time Twitcher, First-time Poster

Postby Fasci on July 30th, 2013, 9:15 pm

Got my initial sleep study results today. I found out I have severe Obstructive Sleep Apnea and some instances of Central Sleep Apnea. I have to go back and have a second study with a CPAP/ BiPAP machine. I'm concerned about getting this Dx, given how messed up my sleep has been over the past year, but at least the study may be uncovering my underlying issue. Not saying it is the main driver of my BFS, but it can only help my overall health if I can get some relief from a PAP machine. Of course I also read where central apnea can be associated with AL#. I don't want to read too much into this, and keep my faith in my EMG and conductance results.

Thanks again for those who've provided their perspective and support.
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Re: Long-time Twitcher, First-time Poster

Postby mwagner on July 31st, 2013, 10:34 am

I do have to say my symptoms are much worse on nights that I don't sleep. I have also struggled with insomnia for years and have been a frequent user of Ambien. Now I only take it once in a while, and take Simply Sleep for about half the week (which is benadryl).

I have always wondered if there is a correlation to my horrible sleep and twitching. I have always had horrible sleep, and have always had eyelid twitching, for instance.

But, like Johnny said, don't expect anything to rid you of BFS. If you are successful through more sleep, or a different diet, that's fantastic, but don't expect it to happen. I have tried everything under the sun the past two years and nothing seems to get rid of it completely. My symptoms totally wax and wane.

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Re: Long-time Twitcher, First-time Poster

Postby Yuliasir on July 31st, 2013, 11:10 am

good news is that central apnea is not unique for MND and happens independently for many reasons, and they are practically part of normal qiuck sleep phase at absolutely healthy people (and they often occur at falling asleep, practically people who can not get asleep because of very 'thin' inital sleep, most probably have episodes of central apnoe). Stressful conditions change blood gases level and this can messup your breathing center operation. Usually if the person is othervise healthy it is a result of some chronic hyperventialtion during non-sleep period (active phase of the day).
You may know that hyperventilation is our common symptom. So there i very high probability that your central apnoe episodes are caused by instable CO2 level and therefore instable operation of your breathing centre. as I said.

People with MND may have specific form of central apnea, caused not by external factors but by destructive processes in the brain stem. usually their episodes are so severe that they require not PAP but active forced ventialtion.
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Re: Long-time Twitcher, First-time Poster

Postby Fasci on August 6th, 2013, 6:29 am

Thanks Yuliasr. I was not aware of that. I'm not sure about hyperventilation in my case. I don't think I hyperventilate, but maybe it's not something that is as noticeable as it sounds.

I do appreciate your insight, as it is often very scientific and more information than I received even from my neuro.
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Re: Long-time Twitcher, First-time Poster

Postby Yuliasir on August 6th, 2013, 8:05 am

thanks for good words;)
I'm trying to keep scientific approach as much as I can because it really explains a lot in our condition.

another trick is that we often think we need to work hard or run or gasp intentinally to get hyperventialtion.
Nope. If you ever had experienced bad tightness in the chest like you can not breath deep enough and have to yawn once and again and still can not reach a point of satisfaction - it is hyperventialtion. Tingled fingertips, numb mouth zone - it is a symptom of hyperventialtion. Moreover, it would be enough for you to be nervous before the sleeping study, breath a bit more frequently but not deeply (it is called tachipnoe, fast breathing) - and boom! yu get your central episodes on the equipment.

Practically stress is about a main reason for hyperventialtion syndrome (other big is a CHF, but I assume you do not have it). People with acidosis (like those who have uncompensated and untreated diabetes) may also hyperventilate in order to alkalise their blood, but i also suppose that is not your case.
So most frequently it takes a form of tingling, dizziness, persistent (and bloody exhausting) yawning but neither kills nor causes too much deterioration.
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