DancingLight Posted July 20, 2006 Report Share Posted July 20, 2006 I would like to continue a bit the discussion started under Roselover's Vanderbilt post about sleep (ironic that it came up b/c I was JUST getting ready to write this post anyways...).Mainly I am looking for some clarification on sleep disturbance issues. I know that this topic has been discussed many, many times, and I have also looked for a link to an article stating what I am looking for and can't find it. (It may very likely be right in front of my nose, but I have so much trouble with reading and concentration as many of you know and my computer doesn't read to me like my books on tape! I will ask my major question and then give some background on what is going on for me.Can we truthfully say that the ANS disorders are the CAUSE of our sleep problems? I have probable chronic Lyme disease as well as POTS and NMH. My understanding has always been that the sleep problems I have (trouble falling asleep, staying asleep, getting refreshing sleep, and like Sophia when my ANS is wired I am awake forever and ever and it is awful) are a SYMPTOM of my Dysautonomia and I need not be looking for another 'cause' to treat. I am asking this b/c if anyone has a clear link to research or quote from the NDRF handbook or Fainting Phenomenon that my local doc could use with MA I would be eternally grateful. Also, I do not want to have to go through an unnecessary sleep study at this point if I am correct in my understanding.Second, my sense is that many POTS docs are prescribing Ambien (Dr. Grubb does this also I think?) for long term use b/c we just dont' have other options sometimes available or that work. B/c MA keeps telling me it isn't for long-term use unless 'medically necessary'--which I think it clearly is in my case. Also, I know Ambien CR is approved for long-term use, so I may try for that.Two issues here: 1. Getting MA to cover Ambien. I have been fighting with them for several months now and have officially exhausted the appeal process.If anyone has written letters to their representatives about such a thing and would be willing to share a copy with me that I could use as a template I would be eternally grateful.My mom and I (especially my Mom b/c I am so sick) have spent ENDLESS hours writing about my case and why I need Ambien. I have documentation from my POTS doctor as well as our initial consult letter in which we discussed my sleep issues, that I do meditation, blah de blah. I could go on and on about how absolutlely infuriating the process is, how insulting and condescending it is, and how you are absolutely set up to fail. I even had a lawyer for the first part and still lost, then tried to get a lawyer for the next phase and they said they wouldn't take my case. I have had a telephone hearing with a judge and 'advising doctor', and sent extensive information on my situation and need for this med. My mom and I joke that she has a PhD and the stuff they send is in such legalese and gobbledigook it makes no sense!Bottom line is that I was denied b/c they do not cover sedative-hypnotics except under very specific formularies. (Except, maddening to me is that they WOULD cover it for someone who needed to work the night shift and would lose their job if they didn't have Ambien to sleep during the day! I thought, okay, and that is MORE medically necessary than my condition).To MA I have not proven that Ambien is medically necessary, despite my doctor's saying it is. They insist on a 'formal evaluation of sleep hygiene.' They will not accept the letters from my POTS doc b/c they are not 'clinic notes'. It's ridiculous. The doctor making the call on my case had NO understanding of ANS disorders--said there was no relationship b/w them and CFS or sleep disorders. He insisted that we do not treat depression with Ambien, we need to find the root cause and use the appropriate meds. Blah de blah.DOES ANYONE HAVE ANY TIPS AS TO HOW TO PHRASE THIS SO THAT MA WILL 'BUY' IT...OR JUST BACK ME UP THAT I AM ON THE RIGHT TRACK THAT THE ANS PROBLEMS ARE THE REASON FOR MY SLEEP PROBLEMS?I am so frustrated.2. Now to answer your questions about other meds, such as Klonopin. I have been sick for eight years now and the sleep problems started about 6 months after I got sick.I have worked extensively with psychiatrists (who were amazing) and also my POTS docs to deal with the sleep problems. I have tried over 50 medications since I first became sick and many have been for sleep--or to calm the ANS and in turn help sleep.I have tried almost all of the anti-depressants, the benzos, clonodine, bbs, melatonin, valerian, on and on.I have tried several times to go off of Ambien over the years and each time my doctors and I have made the CAREFUL decision that the benefits of being on it outweigh the risks of being on it. When I do not take Ambien, I literally just don't sleep. It's one of the only meds that I have tolerated or had success with, without miserable side effects.I actually recently started taking Klonopin daily for pain, myoclonus, and the heart pounding stuff...and I do take it every day, but it doesn't help with sleep much. If I take more than a teeny bit I get too dizzy. We have gone so far as to try things like Marinol to help me sleep, but always come back to Ambien.I feel that I have truly worked SO HARD on the sleep stuff and Ambien is all that has worked. I feel that if my POTS doctor (who is very amazing) felt that he didn't want me taking Ambien long term he would not continue to let me, as we have discussed it many times. Unfortunately, 'clinic notes' are not available for every word we exchange on the phone or via email and this is all MA will accept. Also, the psychiatrists, Dr. Grubb, and my previous CFS doctor all felt comfortable prescribing Ambien long term.HELP!!!!!!!! It makes me sooooo angry that a doctor and a judge from MA can overrule years of medical care, and the advice of people who are SPECIALISTS in this disorder. Our doctors should be able to decide on the meds we need, not a doctor MA hires who knows NOTHING about Dysautnomia!I have an appt. with my PCP on Monday and am wondering if I should try to have him do an evaluation of sleep hygiene? This is hard though b/c it is very hard when you have to lie down all of the time to engage in what they consider sleep hygiene???Sorry for the incredibly long post. I feel completely caught b/w a rock and a hard place and don't know who else to ask for help!!!!THANK YOU!!!!!!!!!!!!!!!!!EmilyP.S. Sophia...thank you so much for your email...I do appreciate it! I am so grateful Klonopin works for you...I wish it did for me! It would make my life so much easier! Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.