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9 years with VERY LITTLE sleep... and MORE
An_255301 posted:
Over 9 yrs ago, my life totally changed at age 43. I feel like I'm slowly dying from sleep deprivation & other symptoms. I've been to more docs than I knew exhisted. I've also been tested for more diseases than I knew exhisted. Out of desperation, family members brought me to the Cleveland Clinic (from PA). Practically, every test imaginable was run; yet, nothing was discovered. They looked at me as if I had 3 heads... as if they didn't believe what I was/am going through. I've been to other specialized centers, too. Now, here I am yrs later, and I'm only a ghost of the man I used to be -- looking like I've aged far more. Background information: For as long as I can remember, I've suffered with anxiety (including social anxiety) as well as depression. Psychiatric treatment as a adolescent/teenager was unsuccessful. Now, the insomnea is exacerbating my anxiety/depression to the point that I can hardly function. This all started with excessively dry eyes -- considered fairly serious & needing constant care/drops/meds. Then, I developed the driest mouth imaginable. I was tested for RA. Initially, the test was positive; however, a specialist retested & said it was neg. Within 2 months, both of these conditions/symptoms abruptly stopped. That's when the horrific insomnea started. I do have sleep apnea, and I sleep with a CPAP. However, wearing several CPAPs for years has NOT helped my insomnea. The docs indicate that the sleep apnea is most likely caused by a thickening of my throat area/neck (I'm about 20 lb over-weight). The docs also indicate that they can operate, but I've been through so much already and too anxious to undergo the knife. My social anxiety has become "extreme," and it keeps me isolated -- even from extended family and friends who my wife may invite over. I isolate myself in my room. I can't "bring" myself to talk on the phone... at all. I miss entirely too much work, since I'm SO tired and can hardly concentrate on anything. Esp affected is my short-term memory. I forgot to mention that I have a heart condition requiring heart meds. (Diagnosed long before 9 yrs ago, though) I can't stand driving -- totally stresses me out -- and I can only take back roads to work making the drive much longer. I exhist... but just barely. I have an MA in computer science, so you'd think I'd have found something -- anything online -- to resolve/treat this "condition." Yet, no one has answers for me. As you can imagine, I take anti-anxiety meds, an SSRI, & my heart med. I also need mega-doses of Vit D. As u can imagine, I've been on a vast aray of psychiatic meds. Yet, I don't have a diagnosis. I'm so utterly exhausted that my wife has to do practically everything for me as well as take me places (besides work). She's a saint, and I feel lucky that she stands by me. My memory and cognition are SO BAD that I can't even remember all my symptoms that I need to "report" in order that u may have the answer or even be able to lead me in the right direction. I have a wife, children, and a spiritual side; so I refuse to give up on what little "life" I have left. As a side note: Not too long ago, I was successfully treated for skin cancer -- most likely my immune system continuing to deminish. Reaching out like this is so difficult that I'm having a panic attack right now, and I must close. This is so ATYPICAL of me ... far from my normal behavior.

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Have you ever known a middle aged man who hasn't been able to "really" sleep for years on end -- even with a CPAP?
  • Yes, I have this problem!
  • Yes, I used to suffer with this!
  • Yes, I know someone who has this problem/condition.
  • Yes, I'm an expert, and I treat patients with this condition.
  • No, I've never heard of this condition.
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An_255626 responded:
My conditions overlap some of yours. I have muscular tightness and pain. Depression and anxiety are less but I am almost a hermit. I too have a saint of a wife. Mine has progressed for almost 20 years. The only thing I have found that reduce the effects of my poor sleep is Xyrem. My BP went high and I stopped and I felt like hell again. I started avoiding breads as a gluten experiment. I have lost 30 lbs. I am back on the Xyrem and part of my night I sleep better. I also think a low dose of testosterone could help but I want to study the effects of the Xyrem before I add anything else. My days are better on the Xyrem. I have had two sleep studies. One I had no Delta sleep the other no REM. Some want to call it Fibromyalgia and another doctor narcolepsy. I really am concerned how much longer I can last like this too.
desperate4sleep replied to An_255626's response:
Thank you. I truly appreciate you sharing your health situation with me. Yes, we are luck to have wives that are saints. Though, I know that my family loses patience with me. It's really hard on them as well as me. I'm sure you can relate. 20 yrs -- I'm so sorry . I'm 10 yrs in, and I can barely keep my head afloat now. It's strange that you mentioned some of these things. I was found to have slightly lower testosterone, a few years ago. I'll go back and have it retested. I'm taking Xyprem too. I take that and wear my CPAP mask, and I still struggle all night long. Too often, I have to take off work, since I'm totally exhausted. I never thought of avoiding gluten and other grains; however, I have heard of people that benefit from that. It's worth a try. Losing 30 lbs in nothing to sneeze at. Congrats! I agree that trying one thing at a time is a good idea. I'll be interested in hear how you do. I hope you'll share again. Your sleep studies sound just like mine. No one have mentioned fibromyalgia to me. I'll have to read up on that condition. THANK YOU so much for sharing your "story" with me. I never thought anyone would respond. I hope to hear back from you regarding how you're doing. I'll keep a closer eye to my WebMD account.

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