The Good the Bad and the Ugly

I had a big crisis again about 2 nights ago, the burning in head was so hard I was crying and ready to curse the day I was born. I prayed, haven't done that in a long time, I have not received relieve in such a long time that I don't bother to ask for mercy anymore. The feeling of desperation was so big that I remembered the verse:

1 Corinthians 10:13
There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.

I don't know about you all but I am way over my head here. I keep telling God I cannot take or bear more pain. Where is the way out?? How is so much suffering possible in one human been??
I can tolerate most days, but some days are so hard, that I feel trapped in this body. I just want piece, not to hurt or suffer anymore.

I felt relieved from the prayer, I think I was at the end of my rope and God somehow could see that I had nothing left. I think the burning episodes are the hardest for me. I can understand why people jump of the buildings when they are on fire. It is such a desperation one feels, that all the reasoning goes out the window. It is pretty scary feeling.

Soo that night after I used the CPAP better with no air leaks, I could feel all the brain burning gone!!! So now, basically I use the CPAP every time I feel the bad brain burning and just try to take naps with the CPAP. So far so good.

My IBS is gone!!! I just noticed it was less frequent then it just went away. It has been a few months now. Not sure how or why. But the break is welcome.

My energy production is also better. Back on the Dr T vitamine powder! I will worry about the B12 levels later.

My neuro symptoms are bad and progressing, I am dropping stuff left and right. Also I feel my left leg to stop working, kinda like muscle fatigue, weak. I am falling a lot too, usually when I stand up.

Overall today is a good day and tolerable.


Hang in there! I know those dark nights. For me, it was the IBS/constipating w/ abdominal pain again last night. Today, useless, from poor sleep.
Have you had Botox for head pain? I spent three months in bed on ice wrapped around my head.. Nothing helped until I had botox injections. I still have the usual bad head pain, it is down 50% with the injections. I recently started pain patches, after I saw Dr. K. who sent me for pain management. Oral opiates had stopped working.
I don't get pain. Is burning. Like acid reflux feeling but in brain and spine and I feel inflammation, Like a balloon in my head and somebody is blowing parts of it. My nasals pops and my ears too. Also feel needles like but it only lasts seconds, I am learning to use advil (iboprufen) does seam to help. I will work with Neuro on the burning. I just wanted to avoid YET another medication. But I think gonna have to go for it. I go crazy when burning. Thanks for the suggestion will keep it in mind for pain.

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