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Forever_Exhausted

814d

I need help trying to find a sleep doctor or neurologist and I’m finding it difficult in my area, any suggestions?

Top reply
    • Waterlemon

      779d

      @alliillaalli im SO intrigued by this. I personally take xywav and i’ve noticed a CRAZY improvement in my sleep quality but it does make me feel kind of crazy sometimes. I smoke weed pretty often (not while im taking my xywav duh) and if im not talking to anybody or distracted I start to become WAY too self aware. my mind goes down a crazy spiral and i over analyze my actions and thoughts and try to find/make up reasons for everything I do/say and the way i walk, etc. and sort of try to rationalize everything. While I am genuinely so sorry you guys had to go thru that, it is sort of validating in a way?? i live with my parents still and I don’t ever have any violent or dangerous intrusive thoughts so it’s not really the same situation but it makes me feel less insane to know that xywav has had weird affects on others as well and that i’m not alone. i’m so glad that you’ve gotten your situation figured out and I hope things are better/easier for your boyfriend. sounds incredibly exhausting and difficult!!

    • alliillaalli

      799d

      I know this isn't the answer you want, but xyrem/xywav may very well not be for you. My partner and I both have the same diagnoses, however he is bipolar as well and I am not. I encouraged him to try xywav anyway when it was prescribed, and both of us were very optimistic, as it's often talked of as the only saving grace for narcoleptics. He held his hand in front of my throat and I watched his face while he very strongly willed himself not to choke the life out of me. He laid and stared at the ceiling for hours, trying not to stab himself to death. He said VILE things constantly, screamed, sobbed, took his dose then got so antsy that he drove multiple times on it, illegal and dangerous af. He was nowhere near himself, but didn't communicate to me that he felt the xywav was responsible and wouldn't listen to me when I said so, because it gave him a "really good high" that was probably mania. After I flushed it while he was at work and he had cleared it out of his system for a few days (which was a fight wherein I had to threaten to call his doctor and have him banned from the rx instead and beg that he just please let it clear out and THEN see how he felt, refill it if I was wrong) was when he told me how bad it had actually been. He was spending the entire day fantasizing about picking a random small town, and killing enough people to be remembered in history. He was restraining himself from killing me, people at work, random drivers, fast food workers, himself, constantly. He had severe mania symptoms to the point I fully believe he was delusional more than I've ever seen him, multiple times a day. Your doctor is not wrong to not give you that medication while living alone. It's a risk for anyone, but especially for you. He was on it for less than a month and spiraled very quickly. If I had not been monitoring him and willing to take away something that was HIGHLY addictive to him because of the mania it produced, followed by the worsened depression he "needed" to overdose on it to fix, who knows what he would've done and to who, including himself. Please find someone who can stay with you, or even multiple people who can take turns, so that you are not home alone until you're leveled out and definitively stable, before you ever touch xyrem or xywav, whether you find a doctor willing to prescribe it rn or not, I'm begging you.

      • Waterlemon

        779d

        @alliillaalli im SO intrigued by this. I personally take xywav and i’ve noticed a CRAZY improvement in my sleep quality but it does make me feel kind of crazy sometimes. I smoke weed pretty often (not while im taking my xywav duh) and if im not talking to anybody or distracted I start to become WAY too self aware. my mind goes down a crazy spiral and i over analyze my actions and thoughts and try to find/make up reasons for everything I do/say and the way i walk, etc. and sort of try to rationalize everything. While I am genuinely so sorry you guys had to go thru that, it is sort of validating in a way?? i live with my parents still and I don’t ever have any violent or dangerous intrusive thoughts so it’s not really the same situation but it makes me feel less insane to know that xywav has had weird affects on others as well and that i’m not alone. i’m so glad that you’ve gotten your situation figured out and I hope things are better/easier for your boyfriend. sounds incredibly exhausting and difficult!!

      • Forever_Exhausted

        783d

        @alliillaalli that is very scary when I was first diagnosed I was married and on xyram and didn’t effect me like that but at that time my psychiatrist and neurologist worked closely together with my bipolar and narcolepsy

      • Tya

        786d

        @alliillaalli that's so scary! I'm sorry y'all had to go through that!

    • TammyW68

      806d

      I live in Indianapolis Indiana too.. I see a pulmonoligist in Greenwood. He prescribed me Xyrem.

      • Forever_Exhausted

        786d

        @TammyW68 could you give me his name I’m having so much trouble finding a Dr. There aren’t many options here! Is he taking new patients?

    • WWW

      807d

      What about Adderall or Provigil?

      • Forever_Exhausted

        783d

        @WWW my PCP is actually the one that sent me for my sleep study years ago and he’s been keeping up with my treatment with other doctors I’ve seen so he does prescribe me my adderral and xanax.

      • cathyapledger

        806d

        @WWW I've been on Adderall for Narcolepsy for years now ... Started out taking Ritalin, then Adderall, then tried Provigil. Always go back to Adderall. I've even fallen asleep during a red light n rolled into the stopped vehicle in front of me! Now that's bad!

        • WWW

          806d

          @cathyapledger yikes! Do you take the XR? I take the immediate release.

    • Poeticlycorrect

      811d

      You could call your insurance company and get a list that they cover then look up reviews on Google. There are also a few groups on Facebook or Reddit for Narcolepsy that you could ask around on.

    • Forever_Exhausted

      811d

      I live in Indianapolis, Indiana I do have insurance that covers everything in network but there are hospitals I’m not willing to got to because of past experience. But I also have bipolar 1 and the last doctor would not prescribe Xyram because she said it may send me into mania and the fact that I live alone

    • shortnapz

      814d

      Or at least introduce you to new medicine I've never found one like that either

    • shortnapz

      814d

      I don't know if it's as much as finding a sleep doctor as much as finding a good sleep doctor but as much as finding a good sleep doctor that will actually prescribe you what you need that's been my downfall with every doctor I've had and I'm 51

    • keallei

      814d

      What’s your zip code or city, state? Also, you can try contacting your insurance to see who is covered. Bold of me to assume you have insurance. It’s a difficult thing, American healthcare.

      • Forever_Exhausted

        783d

        @keallei Hi I’m on disability so I have a Medicare Advantage plan and Medicaid but the doctors here aren’t great!! Tbh I’m an alcoholic and the last sleep doctor I saw, the 2nd visit was virtual and she said that she had never had a narcoleptic patient with an alcohol problem and she would not treat me. Please no judgement because I battle this everyday and I want to quit drinking but then I can’t be treated because by a sleep doctor because my bipolar is currently not being treated and I live alone!! So I’m a complicated mess!! Lol…I live in Indianapolis, Indiana

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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