This topic contains 9 replies, has 5 voices, and was last updated by cape 1 month, 2 weeks ago. This post has been viewed 274 times
- May 7, 2019 at 2:07 pm #10008
I apologize upfront if this is not the appropriate topic/forum/place to be posting this to, or if anyone else has already started a similar thread that I have just reproduced. I am having quite a difficult time with all the “thinkings” and the “doings” and searching through the forum the check is too much work right now.
Anyways I hope this makes sense and I don’t ramble too much:
I was diagnosed with N1 last September and started Adderall XR in OCT. First couple weeks were incredible, I was awake, and felt like it. Then it stopped working and my symptoms did not go back to what was my original baseline, but worse. This has been happening in regular intervals. I am now taking 30 mg XR in the morning and 30 mg reg at noon. This past week has been the worst in regards to my EDS and sleep attacks. I am having sleep attacks (mostly microsleeps) start around 11 am and continue throughout the rest of the day. The microsleeps happen from then on about 20+ times a minute.
I am a bobblehead for about 8 hours every day now, can barely keep a sentence going, an incredible amount of anomic aphasia (trouble with word recall), and drastic reduction in motor skills and mobility.
I’m waiting to hear back from my neurologist, but I’m afraid she’ll just up the dosage again (5th time) and I’ll be left waiting to see when it stops working again.
(drinking coffee/tea [4+cups] on top of the Adderall doesn’t seem to help much either)May 7, 2019 at 2:25 pm #10010
Almost forget to mention the first part of the topic title.
On top of more usual cataplexic experiences, I also experience frequent episodes of full-body paralysis that last 20 minutes to 2 hours. I would say the average is around 20-30 mins. My nuero doesn’t seem to be concerned, even though it exceeds the max recognized cataplexy episodes of a couple minutes.
During this time I am fully aware of what is happening, but I cannot move and cannot speak. I can move my eyes for the most part, however. Intense episodes of anger or sadness usually precede it. I can always feel it coming on: my movements become slower and slower until I can’t move. Like a battery powering down. The “power-up” 20+ minutes later is also slow.May 7, 2019 at 5:11 pm #10014
@capeofgoodhope No worries about where you post something! Are you taking any medications for cataplexy like Xyrem or an antidepressant? Have you tried any other medications for alertness?
The trick with amphetamines like adderall is that they are known to rapidly cause tolerance in most people. The key is to take a day or two off once a week if you can so the tolerance goes down. It does suck taking a day off that day though. I would also avoid caffeine if it doesn’t do much for you. Regular caffeine use actually has been shown to make people more tired because it is great at disrupting sleep even if you don’t realize it is. This is true even if you only drink it in the morning.
What I personally do is alternate medications to avoid tolerance. I take nuvigil on the weekends and an amphetamine on work days. But if adderall used to be great and stopped working, you have probably just become tolerant.
There’s a bunch of stuff you can do to improve your daytime functioning, like regular exercise and keeping a healthy weight. For me to function, it’s a combination of lifestyle and medications.May 7, 2019 at 5:28 pm #10018
My insurance denied the Xyrem prescription in February and my nuero told me she is going to appeal but still has yet to. It’s May, so I’m pissed.
I have been on SSRIs for almost 10 years.
Also, I was super active leading up to the diagnosis. I would say that until this past week I was still more active than most, walking/biking everywhere (uni student so all over my city and campus multiple times a day), and my job requires me to be standing (25 hrs/week) so I was doing that as well.
I keep a healthy diet concerning the food itself, should just eat more. And healthy weight, check.May 7, 2019 at 6:49 pm #10020
@capeofgoodhope usually an SNRI like effexor is used for cataplexy rather than an ssri.
You have not tried any other stimulants? Xyrem is a pain in the ass to get covered. It’s because the pharmaceutical company charges 13k per month for it. Personally, I found it horrible as a medication but others find it helpful. It’s very hard to tolerate the side effects for a lot of people. They used to give a 30 day supply for free. I don’t know if they still do.
Dexedrine is more wake promoting than adderall supposedly. I prefer it. It’s similar to adderall but has less side effects for me.
Focalin is another possible medicine you could try. It works differently.
Nuvigil is usually first line for sleepiness and it doesn’t have the rapid tolerance problem. My doctor did the clinical studies on it.May 7, 2019 at 10:04 pm #10029
Are you taking anything to improve the quality of your sleep? It really cheeses me that Doctors give stuff to stop cataplexy and stuff to keep you awake but leave you with the crappy sleep quality which is the cause of the other two things.
If you are in an area of the world that allows cannabis, please go to the Non Rx Strategies and read the Cannabis Oil Cheat Sheet. Great sleep and eliminated my cataplexy. This was a game changer for me and I only started it in 2014 with the hope of getting some quality deep sleep. After having daily episodes of cataplexy since 1985, you cannot imagine the difference it has made in my life.
If you can’t use the cannabis then please consider a CBD oil from hemp because you most likely won’t be having the anger episodes or sadness. Just no CBD after 6 pm.
You need to consider alternatives to your pharmaceutical meds because I think you sound a lot like me in the years ’86 to ’89. Have you talked with someone close to you who has noticed changes in your personality and behavior? Please listen to them if that is the case.
Best of luck going forward… and don’t EVER give up. You will find what works for you.May 17, 2019 at 11:45 am #10406
Hello. So sorry you’re in such a rough place.
It’ll take time, having a diagnosis is one step, the next is grasping it, as it is for yourself. It’s a different path for each of us and a bumpy one for sure, a rollercoaster I often describe mine as.
I’m totally with Ferret, slightly on a different plain in regards to my method being vaping Cannabis more so than ingesting it. As I read your posts I felt like you need a rest, some down time to recover, to help cope with the stresses and/or just being overly exhausted.
A) just the discovery of the term such as Cataplexy is like a huge door opening, if you’ve been dealing with it unknowingly, yet it all depends on too many circumstances and I won’t begin being thorough there…
B) if you’ve been exerting yourself physically and mentally, beyond say what you may eventually discover as, to be, your own ‘limits and boundaries,’ there’s a good connection of that to amplified, increased, progressing Cataplexy.
In time, with time, things appear clearer, which is of good and bad.
-Some good, being you can arm yourself by learning through the internet, focus on terminology, medical writings and definitions, and interacting, reading other experiences on forums like this. You can improve Narcolepsy symptoms by improving your overall health situation, it goes both ways, and I’m definitely not saying you’ve brought anything upon yourself, not at all.
-Some bad, many things are frustrating repetitively, that being others misunderstandings, confusions and the conflictions out there in even the last places you’d expect it to be, or for that matter where it should be solid but there’s no quality assurance overseeing nor control (that’s my knock on the medical realm in regards to this disease which involves an enormous spectrum).
Get this, statistically (according to people speaking at a Narcolepsy Network conference, yet this is my description of what was said) people who have at some point collapsed regularly from Cataplexy is around or less than 10% of the total, including both types of Narcolepsy, 100% of persons with the disease, around 70% of that 100% have experienced some form of Cataplexy.
The only reason I mention this is to say, there is very limited expertise and knowledge on or of it, Narcolepsy is more known but hardly, obvisouly. It’s very hard to find anyone willing to talk about the depth/s that Cataplexy reaches.
Basically, personally, I must be neurotic AF (in many ways, one could say) about what I eat, how I behave, with whom and when, to what extent I interact and/or participate. To be blunt and honest, I don’t do much socially, I don’t have a career nor relationship, I hang on and cherish what I can, doing what I can manage to do. That may sound worse than it is, but I’m content and comfortable, which is all that I dream of being, hoping to make it work trying to figure the non lifestyle, reality of living type shit out. It took me many years but for me the ‘lifestyle’ part was what I had to figure out, how to possibly balance it, preserve and maintain as best I can; a grounded mindset, behavior and environment are everything.
-Allergies can be hugely heavy and burdening, it’s also easy to overlook or not pick up on for what they are. There’s a lot of stuff we can be allergic or sensitive to, and lot of ways to avoid or minimize being exposed to it.
-Don’t fight nor resist, mentally nor physically, Cataplexy, doing so will amplify and prolong it. Learn to be comfortable with it, if you’ve not already learn to meditate (count and breath, take yourself out of your mind) as it is valuable for much and very much severe Cataplexy. It’s an odd thing to say you’re comfortable with ‘unexpected complete temporary muscle paralysis’ but fearing or being angry at it, gives it a card to play.
The best of luck to you, you’ve come to a good place.July 30, 2019 at 9:20 pm #11011
It’s been a little while (or at least it feels like it) since I’ve been able to get on the site 🙁 It was down for me for some time.
Anyways I’m back, with some updates.
1) Jazz Drs denied my usage of Xyrem on the basis of other medical issues.
2) My neuro has left my hospital. I have my first appointment with my new one next Monday, hopefully she takes me more seriously than this last one, but it sucks to have to start over with a new Dr. (Maybe this time she’ll know at least a little more about Narcolepsy not to do something as stupid as hand me a signed paper Rx for Xyrem and tell me to go to CVS….)
3) Meds have changed to 50 mg Adderal XR, and 200 mg Modafinil. I honestly do not feel a difference with or without the Modafinil. And neither does the increase in XR dosage seem to keep me more awake.
4) I was able to get a hold of 95%+ THC cannabis oil. Sadly, same amount of EDS after a 3 weeks of taking it every night. I will say that the full-body cataplexy-like attacks have decreased during the day, but if I stay awake long enough for the THC to ‘hit’, it seems to exacerbate the symptoms I am trying to avoid.
Truthfully, I am not really sure if my problems are all narcolepsy at play, and if they are, these must be symptoms that a rare percentage of PWN have or just ones people don’t like talking about/sharing. I think I may have some brain damage (multiple ways that could have happened, born 2 months early with a brain infection, a bout of botulism, post-op docs overdosed me on hydromorphone to the point where I stopped breathing…) which could have caused the narcolepsy, the other strange symptoms, or both.July 31, 2019 at 5:05 pm #11014
Sounds to me like you have alot of crap going on all at once here, you sound like a hamster running in a wheel.
Not sure who has been attempting to treat this for you but it is NOT correct.
Way too much medication with virtually zero results.
Im not sure who told you that Jazz Physicians denied your xyrem but they do not make that decision, the decision is between you and your physician.
If you have Narcolepsy typeI with evidence (PSG, MSLT, Orexin levels) to back it up then there is no reason you cannot get xyrem. Someone is yanking your chain. As Jason alluded to Jazz also still offers a 30 day trial of xyrem available on your physicians request.
If it is your insurance company that is denying the medicine then your physician needs to do a peer to peer review with their Medical Director, this generally resolves any problem. If it does not then get the Physicians name and qualifications , denying xyrem to a pt. with documented Narcolepsy is Malpractice plain and simple. (Jason might provide further clarification here).
Though I am not a fan of throwing meds at a problem it is an avenue you have to investigate. I may also add that Sunosi is also available now as is pitolisant if you live in the U.S.
I wish you well and just remember to never give up.August 1, 2019 at 1:46 pm #11021
I won’t say it hasn’t been rough.
Concerning the Xyrem. At first, my health insurance had denied it, then my Dr. fought and it was appealed. Then I was being set up with the pharmacists to get it shipped and during the intake call where they gather more of your health info (to make sure it is safe for you) they decided against it.
This was due to my other conditions related to breathing difficulties. (Xyrem can induce respiratory depression)
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