Re: brain won't shut down to sleep/allison

[Guest guest]

Krystena,

Praying for you. Hope your eye doc. can give you some insight and help.

[Guest guest]

,

I have been praying for you and so sorry you've been so sick.

I know my probs. must seem petty compared to yours.

However, I feel that if I don't get proper help this time, I'll have another major set back. I didn't have any idea that I had a mitochondrial disease in 2000 and was left to fend for myself. My own neurologist summed it up to be anxiety-even looking at my MRI! Yep! ONE big blob of anxiety on my MRI!

How psycho! He was initially very concerned about me and thought I had Atypical MS but once it was not confirmed through spinal fluid, he totally changed his view. Jerk! I got myself well, I guess you could say. I knew to rest ( because that is the only thing that seemed to help ). NO drugs helped me. They actually made things worse. I took Neurontin with no help. Ambein made me want to scream. Ambein (sleeping pill) is the worst drug I've ever taken! It totally worsened things. I did try some antidepressants to try and relieve the "actual anxiety" I was having from NOT being able to get anyone to help me. The ONLY one that ever worked was Xanex. VERY lose dose as I respond very sensitively to meds. Although, I Hate being on meds of any kind, I'd try something again. BUT, I dont' think it's going to fix the actual problem. I am afraid brain cells are dying. I worry that I won't be around for my children. Without ME, they have noone! Well, they have their daddy and a GREAT daddy at that BUT, he's not ME (Mommy). He doesn't know all of the mito. stuff like I do. He just doesn't have time. Anyway, I have an eye dr appt. this morning. I am going to talk to my eye dr about it. She's GREAT! SOO intelligent!

Talk to you soon,

Krystena

Re: brain won't shut down to sleep

Krystena,

I have the same prob. I feel so fatigued and like I cannot stay awake but when I lay down my brain won't shut off. I use the exact same phrase. It makes me feel like I'm in a deepest state of relaxation but not asleep. When I try to "wake-up" I'm left feeling very sedated and out of it cognitively. This mostly happens if I try to lay down and take a nap during the day. I just can't go to sleep but my body and mind become very weak like I've been given a sedative. I try to describe to my doc's all the time but they just don't seem to understand. I feel like I can't function and regain my brain power afterwards. It's really awful. I'm sorry you too are experiencing this prob.

Please contact mito-owner with any problems or questions.