feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I am still having anywhere from 5-15 pre-sleep breathing stops per night on most nights. This makes for very little sleep because as I am just about to drift off it happens and the pattern continues.
I have been back to the sleep center and they insist that my hypopneas were/are taken care of with the APAP. I agree.
Whatever is happening, happens with the CPAP in use. I am not yet asleep.
They cannot rate an apnea unless you are asleep...so what the heck is this????? My inhalation is good, but then my exhalation just gets weaker and weaker until there is no breathing. I have to sit up and make my brain/body alert. breathing resumes.
I have also seen my PCP and will see the sleep neurologist next week. I have Googled this and there are many with this complex...it is debatable as to its cause.
I no longer panic, I am so tired, last night I said the 23rd Psalm and gave it up to God...if it stops forever?????
I know that others have been on ventilators and I can't go there. I couldn't live that way. I can't live with all of the fear either.....so I let it go.
Am I the only one with this symptom here?
Posts: 3975 | From usa | Registered: Aug 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I just don't know what to say. Will keep you in my prayers. Hope you get answers soon.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sending you prayers. I just responded to your post in General,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I am praying for you, that you have normal breathing patterns and sleep.
I am also praying that you find the strength you need to go on.
And of course, I am praying for you to be healed.
God Bless.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
FF.. sounds like you have an Auto CPAP but you might want to look into a BiPAP and/or Bi-flex.
google BiPAP for more info.. here's a summary i found:
BiPAP Therapy
Bilevel positive airway pressure, is similar to CPAP therapy however with BiPAP therapy there are two different pressure settings for the patient.
Patients who are treated with BiPAP therapy have been found to have breathing disorders beyond sleep apnea.
With continuous positive airway pressure or (CPAP) the machine delivers is a constant steady stream of airway pressure during inhilation and expiration.
BiPAP therapy is used to treat more than just sleep apnea. The bipap machine is able to detect how much pressure a patient needs and supply the adequate amount of air pressure on inhalation and exhalation.
The dual settings of the BiPAP machine, allows patients to get more air into, and out of the lungs without the normal muscular activity needed to do so.
Bilevel positive airway pressure therapy is really useful for people who have congestive heart failure and different types of lung disorders, particularly patients who have above normal carbon dioxide.
BiPAP therapy is also used in treating central sleep apnea a sleep disorder characterized by failure of the brain to signal the chest muscles to breathe.
New BiPAP machines are now in the market that have Bi-flex a very useful feature that provides pressure relief to smooth, the transition between the end of IPAP and the beginning of EPAP. -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
feel,
sorry you are having such horrible experiences.
can you check with your doctor?? i feel so bad for you.
hope you find answers soon. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thanks Guys,
((gem)). Carl, I sent you a PM. Sonic, I think that you are right on the money. My CO2 is always high in my labs. I also have mild diastolic heart dysfunction from this crap....this equals mild congestive heart failure. My inhalations are easy, getting the air back out is very difficult.
My belief is that I am having Central Apneas at sleep onset. I will go over all of this on Tuesday with the sleep neuro....thing that bothers me is that I am having problems with weak breathing while awake now too.
Again, thanks for all of the support
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I do not have any suggestions to offer, as I do not know much about this. I just wanted to say that I will say a prayer for you. I hope your sleep neuro can get this all worked out for you. Marcie
Posts: 323 | From Michigan | Registered: Sep 2006
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I too don't have experience or suggestions, but just wanted to tell you I am thinking of you and praying for you. I hope the sleep neuro can help you get to the bottom of this.
Additionally, I hope you can find effective Lyme tx as I blame all of this crap on the infections. I do understand that a person can have this stuff without Lyme; but, IMO - I believe it to be the culprit; my guess is you do too.
Please keep us posted. Your Friend, TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
I had uppp surgery done 1 year ago and it did not help much until I lost 35 lbs now I can breath better but mine was due to a over grown pallet and tonsils. If you have central sleep apnea, that's a harder one to fix.
You could go for a tracheotomy if it's really bad but if it central I don't think that would help ether. The uppp was very painful. Good luck to you
Posts: 5 | From Wisconsin | Registered: Feb 2009
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