Cataplexy and now Narcolepsy around the corner?

Index Support Center Forums Treating Narcolepsy Cataplexy and now Narcolepsy around the corner?

This topic contains 22 replies, has 7 voices, and was last updated by Natdoc 1 week, 2 days ago. This post has been viewed 869 times

Viewing 8 posts - 16 through 23 (of 23 total)
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  • #5221
    Jason
    Jason
    Keymaster
    @jasonm

    Are you having trouble sleeping at night or trouble staying awake?

    #5223
    Avatar
    dragonwoman9
    Participant
    @dragonwoman9

    Going and staying asleep at night.

    #5226
    TheRabbitKing
    TheRabbitKing
    Keymaster
    @deathrabbit

    Trazodone and temezepam seem to a do a lot of people a lot of good as far as nightly sleep consolidation goes. You would, of course, be strongly discouraged from doing the latter concurrently with Xyrem therapy though. It’d probably be fine, but two respiratory depressants aren’t the best of ideas.

    My current jam: Anathema - Springfield

    #5231
    Avatar
    Natdoc
    Participant
    @natdoc

    dragonwoman9
    Have you been utilizing the xyrem on a nightly basis for the last several years?, how long has it been that you feel you are unable to sleep?
    Are you able stay awake throughout the day? Do you also experience cataplexy?.
    Have you made any adjustments to the xyrem dosing?
    Have you done well up to this point with the medication?
    Try to give us a brief description of what has been going on for the last several months, (family changes, lifestyle changes, work or school problems etc)
    Maybe we can help
    Best of luck

    #11698
    Avatar
    Pavel
    Participant
    @pavel

    Hi everyone,

    It´s been a while since I wrote my post here and I feel bad for becoming inactive shortly after. It´s just been an overall helpless situation where all I face within the healthcare system is sceptism and more sceptism.

    Not until recently, for the first time someone was ready to explore the idea of me actually suffering from this disorder. This was on my 2nd appointment with my neurologist (yeah, almost two years in order to get to see her a 2nd time).
    This was two weeks ago, and this time she could clearly see signs of cataplexy as I was getting really tired towards the end of our meeting.
    A test for a spinal fluid sample was booked immediately and as I write this, I am getting ready for the hospital visit where this will take place.

    I´m going to be honest with you guys, with friends, family, an entire society turning its back on me, almost succeeding in making me think I am crazy, imagining things that are not real and having cataplexy attacks as a result of “stress” (from sleeping too much?!?) and so forth…. I´ve not been far from just giving up on everything. At this point I have sold everything I own, I am barely able to keep my apartment and if it wasn´t for my beautiful dog I would not be here to write this. I desperately needed the strength and support I received in this thread one year and seven months ago, without it I also doubt I would make it this far. For this I want to thank you all and let you know I have not forgotten about all the support and kindness you have shared with me.

    I am super nervous now, as I´m no big fan of needles (who is?), but there is some hope again now. That with the right medication I could become a person again. Because I am really not anymore. Reading my initial post, recalling the ambitions and motivations I had in life not even two years ago, I can not relate to it. That person and several weaker versions of the same have died since. I feel like an empty shell holding on to the knowledge that things can get better, perspectives should change, and maybe one day I will find new ambitions, become a person with a healthier perspective than the one I have now and finally get to make some kind of progress in life at the age of 32.

    #11704
    Ferret
    Ferret
    Moderator
    @ferret

    @pavel,
    Welcome back! Wow. They’re cutting straight to the chase and doing a spinal tap. Let us know how it goes please?
    I re read this thread and this stuck out again… “due to misfortunate circumstances have made wonders for me after an accident I had at the age of 15 that almost left me paralyzed for life, falling on my had with such impact that my spine was compressed, 5 or 6 cms if I recall but the force luckily didn´t crack more than one of my discs(?) …. ” That accident may have been the final “environmental” blow that allowed the N with C to progress. @natdoc Any thoughts?
    It actually doesn’t matter “how”. I know you just want to get on with your life. One day at a time my friend. Please read the section on this forum called Non Rx Strategies. Each one of us is unique but I now know three people with cataplexy who have benefited from cannabis oil. Besides eliminating the cataplexy, they are also reporting deep refreshing sleep at night. Hard to say if it’s the deep sleep that eliminates the cataplexy or not. I just know that I started taking it in December of 2014 and very rarely have cataplexy now and it’s not noticeable if I do. Considering that I was diagnosed in ’86 and had just about daily cataplexy until 2014, I can say it has made a remarkable difference in the quality of my life.
    Hang in there!!

    #11720
    Avatar
    Natdoc
    Participant
    @natdoc

    pavel
    I know that the thoughts of a spinal tap are not what folks want to hear from their physician yet in the hands of an experienced practitioner it really is a simple procedure and relatively painless. It will also provide a more definitive diagnosis.
    I hope you hang in there as there is hope on the horizon, I am not familiar with what alternatives are available in your area, however, there are now many options available for folks with this diagnosis.
    I think it is extremely important for you to maintain a positive attitude, maintain a strict bedtime routine, utilize bright light therapy and vitamin D supplementation along with a regular exercise routine, these few things are as important to your recovery as any medication will be.
    I certainly wish you all the best and please keep us informed

    #11722
    Avatar
    Natdoc
    Participant
    @natdoc

    Ferret
    Recently we have uncovered several patients with posttraumatic narcolepsy due to a closed head injury. In most of our patients chart reviews there was no mention of sleep disturbance in clinical notes, however, on further questioning we found that in all of them there was a history of fragmented sleep and varying degrees of daytime sleepiness. The head injuries ranged from concussive injuries to subdural hemmorhage. We have found that all of these patients also experienced injuries to the Thalamus or mid brain region. The etiology of post traumatic narcolepsy is still unknown as far as I know. I am wondering if there might be such a thing as a dormant narcolepsy which may become activated by trauma

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