Hi Everyone,
So I have been struggling with fatigue for the past year, but more than that I feel like I am going to fall asleep sometimes when I am driving, standing up, etc. I had to pull the car over the other day and sleep a little before I could drive, and have to sleep during the day. I just thought it was sjogrens fatigue, but now I am thinking it may be more.
More than that, I have been having weird sleep disturbances. Episodes of yelling in my sleep, and dreaming 10 mins. after I fall asleep.
I have an appt. with the sleep doctor in a few weeks. I am very nervous. I am 36 years old.
Is this common in Sjogrens?
Thanks.
Justin
Hi Justin
Sorry to hear this.
Sjogren syndrome can cause more than 100 diseases. Most doctors are not even aware of this full list forget diagnosing them.
Your best bet is to search Google for your symptoms along with "pubmed" keyword. Find couple of conditions that match your symptoms and take these research papers to the doctor.
You're doing absolutely the right thing in going to see a specialist sleep consultant, as clearly it can be dangerous if for instance you're driving with this condition.
I had a quick look online, and it seems that even if you have narcolepsy, there are things that can be done to manage it. Perhaps it's similar to Sjogrens in that respect, you would need to be realistic, not panic, find a doctor you trust, and possibly adapt your lifestyle somewhat.
I have found specialised online forums (like this one) invaluable when dealing with health challenges. Talking to others with the same condition often seems more helpful than anything else.
If there is any chance you could have Lyme disease, I would get that checked out. It is a stealth infection that is often missed in testing.
I prefer Igenex Lab for any tick-borne illness testing.
Keep us posted on what you find out.
This is the third time I?m leaving a response in my phone keeps deleting it. ARGH!
So pardon any typos I?m going to go fast here. I was diagnosed with Sjogren?s and 2011 and narcolepsy in 2015. I had symptoms of narcolepsy as a teenager but had no idea that?s what it was. And 2013 and 2014 my symptoms were uncontrollable and I was sleeping in inappropriate places at inappropriate times.
My life has changed for the better since starting the medications. I am on Nuvigil, Xyrem and Adderall. Not everyone needs this much stimulant but over the years I?ve had to add medications to stay awake. For a few months Nuvigil was enough and then I started on the Xyrem and that was great (life changing!) until about 5 months ago when I added Adderall
You don't list what meds you're taking (if any). I've had that problem of uncontrolled sleeping from time to time. I now don't drive if I haven't slept much the night before. It can be really debilitating.
I never take anything that affects my energy - no uppers - caffeine, chocolate, kombucha, even decaf anything. I don't take anything to slow me down, from sleep-aids to even the mildest herbal. the thing that got to me last time, was "non-drowsy" Zyrtec.
Be careful with driving. After a wakeful night, I was in endless stop and go traffic. I fell asleep for an instant while stopped and my foot slipped off the brake. I rolled a few feet into the car in front of me - dents in both cars. It could have been so much worse.
A sleep doctor and sleep study yielded a CPAP which helps some with sleeping. An ENT I saw, for an unrelated matter, was actually more helpful in talking to me about sleep (nasal congestion and an abnormal uvula were more of an issue). She recommended among other things an app called "SHUT i" for insomnia. I hope to try that this winter.
Hi Sooki,
I am on Nuvigil, Xyrem and Adderall. I started with Nuvigil and it was pretty good for a few months, then the EDS came back. They added Xyrem and it was LIFE CHANGING! I could put my toddler down for a nap and not fall asleep! I could watch a movie and not fall asleep, life was so much better. Then this spring the EDS started coming back slowly until I needed help. Went back for advice and was given Adderall. I take a small amount if I'm able to nap (weekends) but I'll take 100mg/day if needed to function all day.