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Thread: Burning pain in head - can't even cry

  1. #21
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    I agree that a sleep study would be a good idea.

    My son has had some sleep studies as he has sleep apnea and uses a CPAP machine. I understand that they try hard to make you comfortable during the study--and they should since they do want you to sleep.

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  3. #22
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    Your description of the breathing problem with sleep certainly sounds like sleep apnea which can also cause high BP, elevated heart rate, fatigue and severe anxiety. It is possible with something like a CPAP machine you could get relief of all of this if that is the source of the problem. I hope you get answers soon. My husband has been using a CPAP for several years now and has so much more energy but it took him a while to get used to using the machine.

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  5. #23

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    Thanks, all. Unfortunately, the breathing issue isn't just at night, and I have not been able to correlate it to anxiety. The breathing issue is pretty much constant. It's happening right now but fortunately not as intense as it has been. Last night, I took Xanax, slept from 12 to 2. At 2:30, was able to sleep again until 4. Woke up feeling like I could not breathe. Seems to kick off a tendency to hyperventilate. But this intense feeling of not being able to breathe along with leg weakness and my tongue feeling large went on for several hours and then finally seemed to get a bit better. When I woke up at 4, I remember a lot of twitching, but that seems to have mostly subsided.

    I have something extremely weird. I am quite certain that what I had years ago is what this is now although much more intense and frightening, and it started out sensory like years before but seems less sensory for the last few days.

    It's not sleep apnea since I was sleeping 8 hours, never waking up through the night prior to this neurological attack, which seems to be intensifying. I am really scared, and I'm sure all of you know how this looks to a doctor - they see nothing, so I'm tossed in the crazy bag, just like years ago. That was all tolerable then since it was sensory and some dizziness in attacks that came, stayed weeks, and went, but not being able to breathe and sleep and feeling like my legs will not keep me upright are a whole other level. The breathing is the worst. It puts me in a constant state of discomfort - ranging from moderate to extreme. When I breathe in deeply, I can do it, and my lungs are clear....but something is impacting how I'm breathing.

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  7. #24
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    HWO, so sorry. Yes I know what it is to be labeled a crazy.

    What I did was went to yet another new
    Neuro, set down at his desk, looked him straight in the eye and said Please help me. I then told him I had heard he would bulldog something, that he was the most thorough Neuro. Then I told him my life was being completely interrupted and I needed help. I told him I was willing to undergo any test or do anything he wanted in order for him to get to the bottom of what was wrong with me.

    At that time I was older than you said you are. But he listened and it took both of us where we never expected to go. He did not expect to find ms nor did I.

    Just the end of my journey to get an answer, not the many years it took to get there. I just hope you soon find that one special Doctor who’s curiosity you peak.

    Stay with us we are good supporters, and maybe someone will come up with something, because you can’t give up.

    Good luck!

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  9. #25
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    Quote Originally Posted by hootswithowls View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Thanks, all. Unfortunately, the breathing issue isn't just at night, and I have not been able to correlate it to anxiety. The breathing issue is pretty much constant. It's happening right now but fortunately not as intense as it has been. Last night, I took Xanax, slept from 12 to 2. At 2:30, was able to sleep again until 4. Woke up feeling like I could not breathe. Seems to kick off a tendency to hyperventilate. But this intense feeling of not being able to breathe along with leg weakness and my tongue feeling large went on for several hours and then finally seemed to get a bit better. When I woke up at 4, I remember a lot of twitching, but that seems to have mostly subsided.

    I have something extremely weird. I am quite certain that what I had years ago is what this is now although much more intense and frightening, and it started out sensory like years before but seems less sensory for the last few days.

    It's not sleep apnea since I was sleeping 8 hours, never waking up through the night prior to this neurological attack, which seems to be intensifying. I am really scared, and I'm sure all of you know how this looks to a doctor - they see nothing, so I'm tossed in the crazy bag, just like years ago. That was all tolerable then since it was sensory and some dizziness in attacks that came, stayed weeks, and went, but not being able to breathe and sleep and feeling like my legs will not keep me upright are a whole other level. The breathing is the worst. It puts me in a constant state of discomfort - ranging from moderate to extreme. When I breathe in deeply, I can do it, and my lungs are clear....but something is impacting how I'm breathing.
    Have you checked out the possible side effects of Xanax? Among the less common side effects listed you find "difficult or labored breathing" as well as "hyperventilation":

    https://www.drugs.com/sfx/xanax-side-effects.html

    Also, when you say "it's not sleep apnea" since you slept 8 hours without waking up during the night, I wonder if you know that you can have sleep apnea without waking up at night? There are interruptions in your breathing that happen while you sleep but you might not wake up even though those interruptions in breathing are quietly causing problems for you. That's why a sleep study is needed.

    Sometimes sleep apnea can be corrected without the need for a CPAP monitor. There might be a nasal obstruction that can be fixed surgically, for instance. But first the sleep apnea has to be documented, and from reading your post I'd say that you haven't been tested for it? Or am I reading it wrong?

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  11. #26
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    Quote Originally Posted by hootswithowls View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Thanks, all. Unfortunately, the breathing issue isn't just at night, and I have not been able to correlate it to anxiety. The breathing issue is pretty much constant. It's happening right now but fortunately not as intense as it has been. Last night, I took Xanax, slept from 12 to 2. At 2:30, was able to sleep again until 4. Woke up feeling like I could not breathe. Seems to kick off a tendency to hyperventilate. But this intense feeling of not being able to breathe along with leg weakness and my tongue feeling large went on for several hours and then finally seemed to get a bit better. When I woke up at 4, I remember a lot of twitching, but that seems to have mostly subsided.

    I have something extremely weird. I am quite certain that what I had years ago is what this is now although much more intense and frightening, and it started out sensory like years before but seems less sensory for the last few days.

    It's not sleep apnea since I was sleeping 8 hours, never waking up through the night prior to this neurological attack, which seems to be intensifying. I am really scared, and I'm sure all of you know how this looks to a doctor - they see nothing, so I'm tossed in the crazy bag, just like years ago. That was all tolerable then since it was sensory and some dizziness in attacks that came, stayed weeks, and went, but not being able to breathe and sleep and feeling like my legs will not keep me upright are a whole other level. The breathing is the worst. It puts me in a constant state of discomfort - ranging from moderate to extreme. When I breathe in deeply, I can do it, and my lungs are clear....but something is impacting how I'm breathing.
    I’m no expert but I think one of the reasons people have to do sleep studies to confirm sleep apnea is because they wake up a lot during the night but have zero memory of doing so. So I think a sleep study would still be worth your time but the breathing problems during waking hrs needs to be addressed immediately as well. I'm so sorry for your discomfort!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  13. #27
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    Yes, that's what happens. In fact often someone sleeping in the same room as the person notices the problem, the interruptions in that person's breathing, or it might be someone who routinely snores but there are interruptions in the snoring while the person has no awareness of it. It's dangerous because your brain is being deprived of oxygen during those interrupted breaths, and they may happen often during sleep.

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  15. #28
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    I am going to bump this in case HWO happens to read here sometime. I know we all would love to hear from her.
    Virginia

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  17. #29

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    Hi All,

    Still not doing very well. Very scared. Weakness in legs and also in arms - more left arm - but nothing that can be seen clinically, maybe because I was pretty strong to start - hiking and going 3.5 miles on the treadmill.

    Still have a breathing problem - varies in intensity. Worse at night when trying to sleep. Am able to sleep with Trazodone, given urgent care PCP (saw Tuesday), due to inability to sleep for literally - days - averaged 2 hours for days.

    Also have a weird feeling that comes over my mouth and tongue like a swelling/fullness where it feels big, and my jaw feels weird then also....but that seems to fade and has not really been continuous in intensity.

    The other weird thing is a spasm below my sternum and sometimes comes on and keeps repeating after eating. It's very annoying and uncomfortable when I lay on my back particularly. It feels like a wave of tightness above my belly button.

    Also saw a 3rd Neuro on Monday (still with Kaiser Permanente HMO but in Redwood City, CA). He basically said, "Well, you've seen 2 other neuros, so I don't know what you expect from me. And I looked at your history and see you saw a neurologist years ago." My symptoms years ago, which were all sensory - numbness/burning/buzzing and dizziness, coming and going, were nothing incapacitating like what I'm having now. Those old symptoms were only uncomfortable, worrisome, and annoying. Actually, what I'm having now reminded me of that at first when it started coming on April 20th, but since then, there is infrequent sensory. Mostly, it is leg weakness and sometimes twitching which I feel everywhere (mostly legs, also left arm particularly) and have seen on occasion. The weakness is not something that is bad enough to see clinically except I do shake a bit if pressing my muscles.

    I am going to pick up a machine for a sleep study this afternoon and will use it tonight to see if it figures out the breathing issue. When I am at the doctor's office, my breathing is 96%. It seems the problem is the shallow breathing when falling asleep or even at rest. Yesterday, the breathing problem seemed better, but it is worse again today. It is the issue that scares me the most, but in general, I am very frightened.

    Another odd thing - my resting heart rate was 62. Now is is generally 72. I wear a Fitbit, so I can see how my resting heart rate crept up to 70 or above starting 6/9.

    I have an appt. with the Kaiser ALS specialist on Tuesday.

    Thanks for listening, Everyone.

    HWO

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  19. #30
    Distinguished Community Member Sunshine's Avatar
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    Oh HWO— I can hear how scary and overwhelming this all is. I wish I had a magic idea, of what to do or ask...I am glad you will see an ALSspecialist: If they can rule that out, that goes a long, long way to allay fears about what this all means. One can learn to live with MS— ALS is much much scarier, imo....

    Keep coming here for support and to let us know your progress in getting help.

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