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Chiari Advice - VERY USEFUL!

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Unread 06-30-2012, 09:34 AM   #1
Dawny
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Join Date: Jun 2012
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Default Chiari Advice - VERY USEFUL!

HI, I have Chiari 1 Malformation with accompanying syringomyelia. When I used to go to bed, immediately I would have horrible symptoms. I would miss a heartbeat, miss a breath and feel this terrifying pressure move up from my chest to my head and I would stop breathing. The pressure used to be so hard, I would feel like my head was going to explode. My last straw was when I shot up, gasping for a breath and coughed up a mouthful of blood whilst having a nosebleed.
Luckily for me, my back had also gone into meltdown and I could not find a position I could sleep in. My daughter suggested I sleep on her giant beanbag.
I have slept on this beanbag for the last 2 years and, lo and behold, the horrible symptoms I had been experiencing for the past 7 years disappeared. Honestly, no more apnea, no more blood pressure hikes, no more missed heartbeats - all thing that used to terrify me at bed time. I found that you may have to settle the beans in to find the right density for you - took me about 2 weeks. I also know when I need to refill my beanbag because I will once again start experiencing apnea and the missed heartbeat.
The beanbag has made so much of a difference. Yes, I still suffer the burning and the pain but at least I can sleep now and go to bed without the fear.
I would urge anybody who has autonomic symptoms with Chiari 1 to get a beanbag. I tried to post a link here for a giant beanbag but it wouldn't let me. My beanbag is 6ft x 4 ft, called a 'monster beanbag' and you could find plenty of products like that on ebay. Please, just give a beanbag something like 2 - 4 weeks and I promise you will see a difference. I am not selling anything, I am just trying to help. I spent a very long time trying to convince my doctor that the worst of this thing was postural. I proved it to myself and her. Thank you for reading.
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Unread 11-09-2012, 05:53 AM   #2
Goshawk
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Join Date: Nov 2012
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Default bean bag

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Originally Posted by Dawny View Post
HI, I have Chiari 1 Malformation with accompanying syringomyelia. When I used to go to bed, immediately I would have horrible symptoms. I would miss a heartbeat, miss a breath and feel this terrifying pressure move up from my chest to my head and I would stop breathing. The pressure used to be so hard, I would feel like my head was going to explode. My last straw was when I shot up, gasping for a breath and coughed up a mouthful of blood whilst having a nosebleed.
Luckily for me, my back had also gone into meltdown and I could not find a position I could sleep in. My daughter suggested I sleep on her giant beanbag.
I have slept on this beanbag for the last 2 years and, lo and behold, the horrible symptoms I had been experiencing for the past 7 years disappeared. Honestly, no more apnea, no more blood pressure hikes, no more missed heartbeats - all thing that used to terrify me at bed time. I found that you may have to settle the beans in to find the right density for you - took me about 2 weeks. I also know when I need to refill my beanbag because I will once again start experiencing apnea and the missed heartbeat.
The beanbag has made so much of a difference. Yes, I still suffer the burning and the pain but at least I can sleep now and go to bed without the fear.
I would urge anybody who has autonomic symptoms with Chiari 1 to get a beanbag. I tried to post a link here for a giant beanbag but it wouldn't let me. My beanbag is 6ft x 4 ft, called a 'monster beanbag' and you could find plenty of products like that on ebay. Please, just give a beanbag something like 2 - 4 weeks and I promise you will see a difference. I am not selling anything, I am just trying to help. I spent a very long time trying to convince my doctor that the worst of this thing was postural. I proved it to myself and her. Thank you for reading.
Thank you! I'll give it a whirl. I'm tired of shoving sleep aids in my mouth that don't "amount to a hill of beans". Sorry, couldn't resist. But seriously, thank you so much! I'm going to give this a try. And thanks for suggesting looking online. I probably would have gone to Wally World and gotten an ordinary bean bag and decided, well this fails. Thanks again!
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