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About Colomom

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  1. Colomom

    Question about Apneas

    I understand and relate to your frustration with doctors. The first sleep doctor/ pulmonologist that my son saw was horrible. We fired him and got lucky on the second try. My son also had difficulty tolerating the machine. To help my son tolerate CPAP his doctor started him on a low pressure and titrated him up slowly to the pressure he needed as he became used to the machine. Many people experience claustrophobia when starting PAP therapy, sometimes changing masks can help with claustrophobia. Your sleep doctor should have worked harder to make your sleep study more representative of your normal sleep and should have made an effort to help you find a treatment you could tolerate. My guess is that few people would be able to handle a starting pressure of 24. Your doctors rigidity and unwillingness to work find a solution for you is unacceptable, you were smart to move on. I encourage you to find another sleep doctor, one who is board certified in sleep medicine and Pulmonolgy would probably be your best bet. If you cannot tolerate BIPAP, ASV may be a better fit for you. ASV is the best treatment for central apnea’s, but because it is the most expensive option insurance generally requires that patients “fail” CPAP and BIPAP before ASV can be offered. To qualify for supplemental oxygen Medicare requires O2 sats be under 88 for 5 minutes over the entire night, you are well below that threshold. Hypoxia damages the cardio vascular system and the brain, it is likely a significant contributing factor to your high blood pressure. Your GP is wrong, your nighttime oxygen saturation’s are to low, your doctors should be doing whatever they can to address your hypoxia. The other issue with sleep apnea is arousals. With your “moderate” AHI of 21 your brain may be waking your body up every 3 minutes to breathe, it’s no wonder you are exhausted and unable to achieve deep sleep. Add on top of that the fact that they suspect RERAS which can create even more arousals. I am amazed that you ever able make it out of bed. My heart breaks for you, I can’t imagine how difficult it must be to be in your shoes. The one thing I am thankful for is that when my son’s problems began to manifest he was still living at home, with his symptoms my son would have never been able to navigate the complexities of autonomic dysfunction, sleep problems, and the medical system by himself.
  2. Colomom

    Question about Apneas

    My teenage son has autonomic dysfunction and sleep apnea. His AHI was split evenly with 50% of his events being central apnea’s and 50% obstructive hypopneas. Most concerning was that my son was hypoxic during sleep. Thankfully with CPAP my son’s nighttime oxygen levels have improved. Treating my son’s sleep apnea has been life changing for him. Sleep can vary from night to night, it’s not uncommon to have a variance in AHI numbers on different nights. Most people’s AHIs are highest during REM, it’s likely that your sleep studies may have actually underestimated your AHI because you had so little REM sleep during them. Your low oxygen saturation’s during sleep are concerning, I strongly encourage you to dig out your BIPAP and give it another try. Have you discussed your difficulties with BIPAP with your sleep doctor? Perhaps your doctor could start you on a lower pressure to help you adjust to using the machine. Trying a different style of mask might also help, it is common to have to try out a number of masks before finding one that is right for you. Some also find using the machine while watching TV or reading can help the brain adjust to using a PAP machine. Good luck, I hope you are able to find your way to a restful nights sleep!
  3. Colomom

    Back to School w/Dysautonomia

    Communication has been the most important factor in helping my son be successful in high school. At the beginning of the school year last year my son and I requested meetings with the principal, guidance councilor, and his advisory teacher to discuss my son’s medical issues and brainstorm ideas on how the school staff could help my son be successful. We also sent an email to the remaining teachers introducing my son,detailing his medical issues, and outlining accommodations the teachers may need to make in order to help my son. My son maintained good communication with his teachers throughout the school year. His teachers really appreciated the communication and went out of their way to help my son out. Good luck to you, it sounds like you have some great strategies already in place!
  4. My son is scheduled to go to Mayo for Dysautonomia, they scheduled a full weeks worth of appointments with room to add more if needed. I have taken family members to Mayo Rochester and Phoenix (not for Dysautonomia). The majority of Mayo patients travel great distances to go to Mayo and Mayo makes every effort to get everything in in one visit. Mayo will give you a detailed appointment guide and will add in appointments and testing as needed, I was blown away with their efficiency at scheduling. Mayo excels at interdepartmental communication, it was so refreshing to deal with specialists that communicate effectively with each other. If you do go to Mayo be sure to take advantage of their concierge service, they can give you a list of hotels that offer discounts to Mayo patients.