Be safe everyone! I live in the state of Jalisco in Mexico and I am very proud of the Governor of Jalisco for taking the coronavirus seriously. His stance is opposite to the President of Mexico who thinks that good luck charms and faith are going to be all that is needed. We are in lockdown and practising extreme safety procedures if we MUST go out. Personally, I’ve been in lockdown for two weeks already because of a sprained calf muscle. I have been carefully watching the spread of this virus worldwide since the end of December and was well prepared as I have a fully stocked pantry.
Be safe, be smart and survive!
Just my opinion but I would suggest weaning off all medications for the next 10 – 14 days and repeating the psg/mslt. I dont think that simply adding another drug that you would also have to stop before proper testing is a very good idea.
You are correct in that your testing is probably not accurate due to medications but your Physician should have advised you to stop these meds prior to testing.
From your post about all anyone can tell is that you are sleepy and frustrated, are there other symptoms you are experiencing?
What does your daily schedule look like?
How about lab results?
Any more info you could provide may prove helpful with any advice you may find here
Best of luck
Well, the first thing I’d be doing is looking for another Doctor. She needs an attitude adjustment.
So, let’s get down to the nitty gritty. What do you eat and drink… and when? What is your schedule for sleep and/or naps?
I want total honesty please or nobody can guide you.
Ever try CBD for anxiety? And have you tried to WEAN yourself off the meds?
Would love to try and help but there is far too little detail in your post except that your anxiety and frustration are very clear.
Everything you need to know is in the first post of this five page thread.
An INDICA concentrated oil that comes in a syringe. 1/2 a grain of rice worth sublingually just before bed. You don’t get high, or paranoid because you’re in a deep dreamless sleep. And, depending on the frequency of your cataplexy (mine was daily), it will be GONE in about two weeks. If you stop taking the oil, cataplexy comes back in about four days.
I also take CBD during the day (two drops sublingually at 7 am and two drops at 7 pm) and find it quite uplifting. Each drop has about 2.5 mg in it. Be careful when choosing CBD that it is FULL spectrum and not an isolate. Also that it has been third party tested for concentration and content. If the certificate of analysis is not shown ON the website BEFORE you go to purchase the product, I would steer clear of it. Lots of charlatans out there now.
Hi I just made an account so I could reply to your post. I have narcolepsy with cataplexy and have been using xyrem for 2 years. Long story short, I want to stop taking it. However, I cannot live even half a normal life without it. It is the only things that has ever worked for me.
I have smoked marijauna recreationally, I liked it more when I was younger but lately don’t care for how it makes me feel (insecure, paranoid when not in moderation). Lately I’ve been thinking about making the switch from xyrem to medical marijuana. I have no clue where to start though; there’s so much of it!
Can anyone give me some advice on what works best for them? Doses? Methodology? My cataplexy is very mild. My biggest concern is the EDS. I don’t want to go back to constantly being late, feeling attached to my bed, sleeping instead of studying and going to social events… well, you’re all narcoleptics here, need I say more?
Any advice would be appreciated. Thanks! 🙂
Also I did just read the cheat sheet. I do get muscle twitches unilaterally frequently by my eyes. I’ll have to see if it correlates with unexpected emotion changes.
Thank you. I had 20 min to fall asleep but after 15 min past sleep start time they woke me up.
I’m not really sure what to do about the PVCs anymore. I’ve already been seen by two cardiologists and they never had an abnormal EKG and echo was normal. I had to wear a Holter Monitor for two weeks. It showed PVCs and PACs (not daily but when they occurred it was on and off for much of the day) and a few very short episodes of SVT. I’ve had very unpleasant symptoms with the SVT but there wasn’t an explanation for it. Felt like I was going to collapse. For one of them my head felt like it almost dropped and slammers into the table when I was sitting down for dinner but when I looked up and felt normal again the person sitting across from me said my head didn’t drop at all. It felt like I almost lost consciousness. My HR can be a little tachy too but maybe I have an over excited heart. Caffeine doesn’t seem to cause the palpitations. They just seem to happen at random.
Ferrett is correct in that Wellbutrin has the effect of increasing REM latency. In most studies by an average of 22 minutes. It would not surprise me if the MSLT did not show REM episodes. The standard nap time for an mslt is 20 minutes. The Wellbutrin may have had the effect of suppressing you REM sleep enough that it did not show on the MSLT.
In addition if your Physician still suspects Narcolepsy there is no need to wait a year to repeat the study. Your physician may do a peer – peer review with the insurance companies medical director and explain that the results may have been affected by the medication and she can then get permission to repeat the test.
AT any rate you will also want to get those PVCs checked, multiple abnormal beats in an otherwise healthy person are NOT normal.
I certainly wish you the best and please keep us informed on your progress and response to treatment
Good. I’m happy that she will continue to monitor you. Please let us know how it goes with the Modafinal and please read the Cataplexy Cheat Sheet under Resources at the top of this page so that you will recognize the various severities that can exist. Some are subtle and some are in your face obvious to those around you. Perhaps your husband should read it too. Any extreme UNEXPECTED emotion can be a trigger.
I wish you every success as you navigate through this.
She did say it’s possible it’s narcolepsy but there isn’t evidence pointing that way right now. She said she will continue to monitor because sometimes narcolepsy evolves and it may just not be full blown at this point.