You don’t have to look to see concerning stories about Xyrem on here but in my case I was diagnosed at age 10 and started Xyrem within a year or two of that and it was a game changer for me. Again others have had vastly different experiences with it. Also it should be noted Xyrem creates a very large increase in your daily sodium intake (820mg-1600mg depending on dose out of the recommended limit of 2,300mg or ideally 1,500mg for adults) Also also I have Narcolepsy w/cataplexy so its slightly different.
I have been taking Xyrem for around 10 years now and have had no notable side effects. I will say however that the amount of sodium in Xyrem is crazy high. It adds anywhere from 820mg (4.5g per day dose) to 1600mg (9g per day dose) to your daily sodium intake. Consider that when the daily recommendation is no more than 2,300mg per day and ideally no more than 1,500mg per day. Obviously “ideal” goes right out the window when taking Xyrem. My dose is 6g per night. For a while I was using the myfitnesspal app to track what I was eating and I can tell you for certain that there is already a ton of sodium in the food you eat as is that would make it difficult to meet the recommendations much less when you’re already up ~1,000mg from your meds. To give you an idea of the sodium levels in food take subway subs for instance on the nutrition facts for their subs on their website there are 25 subs in the list. 21 of those are over 500mg of sodium. 12 are over 1000mg. 3 are over 1500mg. 1 is over 2000mg (Turkey & Bacon Guacamole at 2070mg). Now here is the kicker: Those numbers are for 6 INCH subs! Those numbers can raise further still if you put more toppings than what is accounted for in their specs on a given sub. Granted the serving size in grams jumps all over the place for this (most in the 200-300g range) but I feel like most people consume subs in terms of halves regardless of which sub it is. The Veggie Delight is the lowest at 280mg with the next up being 480mg but that is for a cheesesteak slider sandwich which is a 64g serving size compared to 163g for the Veggie Delight. Consequently the Turkey & Bacon Guacamole sub I mentioned also has the largest serving size at 511g.
It sucks, but over time, it can get better. Even if you end up pretty much running the gamut of all possible treatments and don’t really have much luck (like me) you will find ways to cope if you don’t give up. I’ve developed a lot of little bizarre sleeping rituals over the years, but they’ve really helped me maximize my “good days” to the point where most of the time I am just normal person’s level of tired all day long, instead of brain melting into a gelatinous puddle of tired all day long. It’s important in life in general, I believe, to live incrementally, more than setting huge fixed goalposts, but it goes doubly so when you have to deal with a chronic illness like this.
This is NOT the end of the world for you, now you have a diagnosis, now you know what you are facing, now you simply need the correct arsenal of tools to deal with the problem. I am curious as to what the results of your overnight PSG revealed, sometimes treatments for hypersomnia lie in treating the night time sleep.
It is my opinion that it is as important now to have goals even more so than prior to your diagnosis I think that your plans for the future should not change. You will need to make some adjustments but placing your life on hold is not the answer.
There are many treatments available for this problem however, none are as important, or effective as your own attitude toward the problem
I certainly wish you all the best
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
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
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!!
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.
Thanks so much for the reply. I have been on varying doses of Modafinil for a few weeks without any luck. I’m hoping to have some luck on another medication, but I am not exactly optimistic. I think you’re right that I will just need to grieve for a while. Everyone keeps telling me that, it’s just very difficult and it’s hard to find good support. I have found a narcolepsy support group in my area which I’m looking forward to, and I will check out the resources you pointed out.
Thanks again for the response, it’s great to just hear it from someone who knows what it’s like.
Allow some time for yourself to mourn. It’s OK and it’s part of processing your diagnosis.
You haven’t indicated what meds you are going to be trying, if any.
You most definitely can have a good, long and successful life and career but you are going to set boundaries for yourself and learn to live within them. Be diligent about your sleep time and take a scheduled nap if possible. Your body, your clock… find out what works best for you. Eat nutritious and healthy food prepared by your hand if possible. No sugar, no alcohol.
Mosy on over to the Non Rx Strategies section… the OTHER things that you do besides “pharmaceutical meds” may have an impact on you in the same way that they have helped others deal with it.
It’s not the end of the world even though it seems like it today. You can still be the best that you want to be even with this disability.