- This topic has 24 replies, 8 voices, and was last updated 4 months, 3 weeks ago by Ferret. This post has been viewed 1965 times
- April 17, 2018 at 11:23 pm #5221JasonKeymaster
Are you having trouble sleeping at night or trouble staying awake?April 18, 2018 at 12:34 am #5223dragonwoman9Participant
Going and staying asleep at night.April 18, 2018 at 1:27 am #5226TheRabbitKingKeymaster
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 - SpringfieldApril 18, 2018 at 5:42 pm #5231NatdocParticipant
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 luckNovember 26, 2019 at 12:36 am #11698PavelParticipant
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.November 26, 2019 at 9:29 am #11704FerretModerator
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!!November 27, 2019 at 4:37 pm #11720NatdocParticipant
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 informedNovember 27, 2019 at 4:52 pm #11722NatdocParticipant
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 traumaJanuary 26, 2021 at 2:09 pm #20691SnufkinParticipant
I hope things are looking up for you! I just found this forum as I’m wondering if I have narcolepsy, I read your posts and I can relate to many things you write. Feeling like an empty shell, that was my thoughts not too long ago. Remember it will pass!
And I also live in Sweden, age 33:)
I hope you write again and tell us how things are going?
Hang in there och ta hand om dig själv!
Edit: Oh, my brain thought it was 2020 and not 2021. I guess that post is quite old now..:/January 26, 2021 at 7:02 pm #20703FerretModerator
Hi! Yes, this post is getting old but I’m glad you found it because there is a lot of pertinent information in it for you.
Getting a proper diagnosis usually takes a very long time. The most important thing is to NEVER give up. Believe in yourself, your capabilities, your future, your limitations as well. Is there some point to working twelve hour days when you can be brilliant in six?
Please read the non-Rx section of this forum. There is so much that you can do to improve your life without a diagnosis or meds (which may or may not work).
Next year, in June, I will have lived thirty-five years since official diagnosis. That’s half my life.
You CAN do this! And you will learn to accept yourself and you will learn to build upon what works best for YOU. One day at a time.
- You must be logged in to reply to this topic.