advertisement
Reply
 
Thread Tools Display Modes
Old 06-30-2012, 09:34 AM #1
Dawny Dawny is offline
New Member
 
Join Date: Jun 2012
Posts: 1
10 yr Member
Dawny Dawny is offline
New Member
 
Join Date: Jun 2012
Posts: 1
10 yr Member
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.
Dawny is offline   Reply With QuoteReply With Quote

advertisement
Old 11-09-2012, 05:53 AM #2
Goshawk Goshawk is offline
Junior Member
 
Join Date: Nov 2012
Posts: 10
10 yr Member
Goshawk Goshawk is offline
Junior Member
 
Join Date: Nov 2012
Posts: 10
10 yr Member
Default bean bag

Quote:
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!
Goshawk is offline   Reply With QuoteReply With Quote
Reply

Tags
autonomic symptoms, chiari malformation, sleep aids


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Is this Chiari? Advice needed please!! anon112114 Arnold Chiari Malformation & Syringomyelia 7 12-01-2014 02:59 PM
im new here! have chiari looking for good dr. in middle ga exp with chiari!!! gagirl74 Arnold Chiari Malformation & Syringomyelia 11 09-16-2011 12:19 PM
Chiari--How many mm... tupelohoney Multiple Sclerosis 1 05-02-2010 07:18 PM
AZ Syringo Chiari Group receives Proclamation Sept is Chiari & Syringo month! AzSyringoChiari Arnold Chiari Malformation & Syringomyelia 0 10-05-2008 06:39 PM
AZ Walk for Chiari/AZ Syringo Chiari Support Group AzSyringoChiari Arnold Chiari Malformation & Syringomyelia 3 09-01-2008 06:35 PM


All times are GMT -5. The time now is 08:07 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.