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About Colomom

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  1. My family has had a different experience than OP’s experience. My first experience was a health issue with my father (not dysautonomia ). The hospital was a life saver for my Dad, numerous local neurosurgeons chose to ignore his debilitating issues for over a year, but the doctors immediately recognized his problems, did emergency surgery which saved my dads life. After my Dad’s incredible experience when my son started having health problems our local docs couldn’t figure out, I pushed to get him in at that clinic and am so glad I did. We traveled a long way from Colorado, and while a few of the docs my son encountered were not helpful, some of the docs offered tremendous help. It’s rough when you are suffering from complex health issues, it’s hard to have to wait so long for appointments, have to travel so far, and spend so much money. All of these seemingly insurmountable issues are probably amplified by 1000 with COVID. Doctors are people, it has been my experience that in-spite of the “stellar” reputation of an institution, there are always some bad eggs. My advise to you is don’t get discouraged and make the most of your follow up appointment tomorrow. If your some of your tests were negative perhaps that is a sign of progress, if that is the case hopefully your docs can help you build on that progress. Some of the things I found that Mayo does well is interdepartmental communication, appointment and test scheduling, and online patent access to tests and records. Hopefully your appointment tomorrow will be informative and helpful, if not don’t loose hope.
  2. Which Mayo are you going to? My son went to Rochester, for my son they scheduled more appointments/ tests then were originally booked throughout the week we were there. Mayo runs like a well oiled machine. I was blown away with their efficiency at scheduling. Any time they add an appointment or test they will print you up a new detailed schedule that outlines times, locations, and detailed instructions outlining how to prepare for the test. If your doctor decides extra specialist visit or tests are warranted they will try their best to schedule it while you are there. Good luck!
  3. Finding a doctor to treat my son's POTS was an uphill struggle. A particular low point was an appointment he had with an electrophysiogist in Denver. We had to wait months for the appointment and Denver for us is quite a distance to travel. Traveling to Denver our flight was delayed due to weather. When they finally called us to board the plane my son passed out as soon as he stood up. Thankfully he soon regained consciousness and we were able to make it onto the plane and somehow we made it to the appointment on time, but it was a long stressful day of travel. The appointment unfortunately was a complete waste of time. The doctor said because my son had a clean echo nothing was wrong with him and recommended he see a psychiatrist. It was incredibly frustrating to wait so long and travel such a great distance to see such a cold, arrogant, and dismissive doctor. That is one of many frustrating doctors stories I could share, but the good news is my son is doing so much better today. It took trial and error, but eventually we found the right doctor to manage my son's POTS treatment. Many doctors didn't learn about dysautonomia in medical school, the key is finding a doctor who is a good listener and will take the time to educate themselves beyond the limited information they may have learned many years ago when little was known about dysautonomia. Don't loose hope there are good doctors out there who can help you better manage this : ) Look for a PM from me with a link to list of doctors, I hope it will help you in finding a doctor to help you manage this!
  4. My son has POTS and because he is 6’6” tall his doctors want him drinking a minimum of 4 liters of water a day. For my son we add 1/8 tsp salt and 1/8 tsp nusalt (salt substitute found near salt that gives you potassium) per liter of water. We then add fruit simple syrup to taste to flavor the water. I make the simple syrup with whatever fruit is in season (you can also make the syrup with frozen fruit). We also like to use sparking water on occasion make an electrolyte soda. Fruit simple syrup recipe: 4 parts fruit 1 part water 1 part sweetener; sugar, honey maple syrup, or agave work well (if you use agave use a lessor amount) Simmer for 20-30 minutes (until fruit is very soft). Purée and strain if necessary. Store in the fridge.
  5. I posted this in a previous thread of yours, but you may not have seen it. I recommend that you join Dysautonomia International’s Colorado support group then put up a post asking for doctor recommendations. To find the CO support group go to the Dysautonomia International website, click on patients, click on get connected, then scroll down to find a link to the Colorado group. You have to submit a request to join. When my son first began having problems we quickly learned how difficult it can be to find a doctor who understands Dysautonomia. You aren’t likely to find an automatic specialist, but if you reach out to the CO DI community they’ll offer suggestions of docs with the knowledge needed to diagnose and treat you.
  6. As far as I know there aren’t many Autonomic specialists in Colorado. Jill Schofield is one I have herd of, but she doesn’t doesn’t take insurance so all costs with her are out of pocket. For my son we took him out of state for autonomic testing and his long term care is managed by a doctor who is not a specialist is Dysautonomia, but has a great deal of knowledge about it. Dysautonomia International has a Colorado Facebook support group, it is a great resource for doctor recommendations. You can find a link to the group on DI’s webpage, you will have to submit a request to join the group.
  7. I’m sorry you are going thru this and understand and relate to your frustration. I hope you can find a doctor who has expertise in Dysautonomia, unfortunately doctors who understand Dysautonomia can be few and far between. If you haven’t been to the Dysautonomia International website check it out, it is a great resource. If you click on the patients tab you will find a link that will help you connect with a local support group. If there is a group in your state reach out to them to get recommendations of doctors in your area.
  8. Sorry you’re having such a rough day:( Hope the ER docs are able to figure out something that will help make you feel better!
  9. Before settling on fludrocortisone as the best treatment option for you it would be helpful to get a fuller picture of what’s going on with your BP. You should ask your doctor to order ambulatory blood pressure monitoring. It’s a blood pressure monitor that you wear for 24 hours, it takes your BP at consistent intervals thru the day and night. Considering there had been previous concerns about high BP, i’m surprised that a doctor determined that you should be given a med to raise your BP based on a marginally low reading that was taken after you had been administered Metroproponol. Another thing that jumped out at me while reading your story is that you often wake up panicked with tachycardia. Perhaps it is the result of the tremendous stress and anxiety you are under, but it also could be a symptom of sleep disordered breathing. Has anyone ever told you that you snore?
  10. I took my son to Mayo Rochester, for us it was worth the trip from Colorado to Minnesota. I chose Mayo because my past experiences with Mayo were amazing! My son was already a Mayo patient, so we didn’t haven’t to deal with the long wait times that are typical when going to Mayo. As far as insurance coverage, my advice is to try to get appointments at all the top places. Once you have the appointments you can always cancel if you find that your insurance won’t cover it, call ahead of time to confirm insurance coverage. If your doc will give you a referral it would likely help with insurance coverage and may get you an earlier appointment. With my son I was surprised to find that Mayo Phoenix, which is relatively close to us (one state away and less than an hour by airplane) didn’t accept our Colorado insurance, but at Mayo in Minnesota our Colorado BC/BS insurance was golden. My son spent a week at Mayo Rochester seeing numerous doctors and doing multiple tests, we only had to pay about $400 out of pocket for a couple of tests that our insurance didn’t cover. My final piece of advice is if you do go to an automatic clinic; temper your expectations. The clinics are great for expertise and diagnosis, but ideally for ongoing care you need to find a knowledgeable local provider.
  11. If I were in your shoes I would consult with a sleep doctor/ pulmonologist before making any final decision on treatment. There are a number of drawbacks with mouth guards to consider. First of all they are expensive and aren’t always covered by insurance. The generic buy them online guards don’t work, and ones purchased thru a dentist are expensive. My brother has mild sleep apnea and looked into having his dentist make a mouth guard, the dentist quoted him $2500 and his insurance would not have covered a penny of the cost. Mouth guards used to treat sleep apnea often work by opening up your mouth by pushing your teeth forward which can create problems with your teeth and jaw. The other major drawback with a mouth guard is that it is not as nearly as effective as CPAP at preventing sleep breathing events and the only way to know if the mouth guard is working is to get another sleep study. My son’s APAP machine records data on his breathing when he uses the machine,so it’s easy to evaluate treatment and make changes when warranted. You don’t have much to loose by trying CPAP first. The way it works is that for about the first year your insurance technically rents the machine (instead of paying the entire cost of the machine up front they pay monthly rental payments). Once you receive the machine you have 90 days to become “compliant” which is defined as using the machine a minimum of 4 hours a night for 21 of 30 consecutive days. If you can’t tolerate CPAP and don’t use the machine they will take it back and the rental is ended. If you do use the machine the “rental” payments are rolled over into a purchasing deal and after about a year you will own the machine.
  12. Most CPAP machines have a humidifier. When the moist air travels from the machine thru the long hose that connects the machine to the mask the moisture in the air can condense causing rainout (water in the mask). A heated hose prevents rainout because if the air is kept warm the water vapor doesn’t condense. I believe that most machines are set up to accommodate either a heated or regular hose. The heated hose is more expensive, but a doctor can specify a heated hose in the persciption so that insurance will cover the extra cost. Alternatively you can by a fleece hose cover of Amazon for about $10 (not quite as good as the heated hose but works good for preventing rain out).
  13. My teenage son has sleep apnea, POTS, and EDS. Sleep apnea was the first thing his doctors figured out and treating the sleep apnea has been life changing for him. My son had mild to moderate sleep apnea (AHI 14.8). Most concerning to me was that my son was also diagnosed with hypoxia, his O2 dropped the 70s and was under 88 for over an hour while sleeping. Like most on this forum figuring out my son’s health issues was an uphill battle. By the time we got my son’s sleep apnea diagnosis he had been struggling so much in school that we had to get him designed home bound midway thru the school year and continue his educate at home. Because my son was being educated at home I could see the tremendous improvement in his cognitive abilities once he started using CPAP. It wasn’t easy to for him to get used to the CPAP machine, but my son stuck with it because it helped him so much. My mom also has sleep apnea, her’s is severe (AHI 64 during REM). My mom loved her CPAP machine from the moment she put the mask on, with CPAP splinting her airway open for the first time in years my mom was able to sleep and wake feeling like she was well rested. My mom also has high blood pressure, which has improved significantly since using CPAP. Over the long term sleep apnea can cause a whole host of health problems including cardiovascular issues. Sleep apnea can also keep you from getting a restful nights sleep. Although most sleep apnea patients aren’t aware of it when you have an apnea your brain is triggered to wake up to breathe, these frequent awakenings often prevent people from getting enough deep sleep. CPAP is the gold standard treatment for sleep apnea. Unfortunately in sleep medicine all the money is made up front with expensive sleep studies, the follow thru care after CPAP is prescribed is more often than not inadequate. I believe many more patients would be successful with CPAP if they were given better follow up care. Simple things like a different mask, changes in pressure, or heated hose can often make CPAP comfortable for patients. There are some great online forums that really helped me problem solve some of the problems my mom and son experienced with CPAP (I like apnea board and CPAP talk).
  14. 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.
  15. 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!
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