You are most certainly valid in requesting further evaluation, unfortunately at times we have to insist on being taken care of rather than pushed aside. Sound like your GP could use a little education. How the hell do you get diagnosed with anything over the phone? or misdiagnosed shall I say.
At any rate I have included 2 places that I am aware of that diagnose and treat narcolepsy, I am not sure how far away this is for you but I wish you all the best. Please keep us informed of your progress.
Edinburgh Sleep Centre
13 Heriot Row
Tel: 0131 524 9730
Dr Peter J H Venn
QVH Sleep Disorder Centre
Queen Victoria Hospital
Tel: 01342 305420
Hi Ferret and Natdoc, thank you so much for replying 🙂
I live in Kent in the UK. Going to make another appointment on Monday with another DR and take in information this time to show I have some kind of sleep disorder and not be totally fobbed off again! I asked to be referred to some kind of sleep specialist and he asked me who I could be referred to when there is no such thing! I think he would of laughed at me for even suggesting a neurologist! Don’t know how old he was as it was over the phone.
I am valid in going right, makes me feel like my sysmptoms are not as bigger a deal to the outside world, which could be easily done given it is me going through them, things are always a bigger deal for the person?
Hope you guys are ok, I take it you guys live in America? So jealous!! Thank you again for your replies.
I had to quit Xyrem for many reasons, among which is that I started getting a motor tremor and my blood pressure rose from the 140/90 range to 180/105. I also developed a certain tolerance and had to move up to the highest end of the dosage range. Bottom line is that I chose to quit Xyrem. This stuff seems to produce different, and severe, side effects in a lot of people. It’s certainly not for everyone.
Hey welcome to the forums. It would be helpful to know what dose you are currently on and how quickly you were titrated up to that dose. Sometimes to rapid titration will lead to the symptoms you describe.
These symptoms may also be caused by the large mount of sodium in the drug.
At any rate, give yourself a day off and see if the symptoms dissipate, if they continue then may not be related to the medication.
All my best
Hi, sorry to hear of your difficulties. I am not sure how things work in the UK but you need a physician experienced in dealing with sleep disorders, either a sleep specialist or neurologist preferably.
If you could tell us where you are located in UK perhaps we could suggest someone who is more familiar with your particular problem.
All my best
I am so sorry you are going through this. When those things first start happening, they are terrifying. Your Doctor sounds like a real piece of work. Do you have access to another or are you stuck with him? What’s his age and where are you located? He needs educating… BIG TIME! And you do NOT have a mental illness but if necessary you could calmly ask for a referral to a Neurologist…a Neurologist who specializes in sleep medicine.
Best of luck!
So I was doing more research today and found this as relates to syncope:
“Syncope is often preceded by a symptom complex characterized by lightheadedness, generalized muscle weakness, giddiness, visual blurring, tinnitus, and gastrointestinal symptoms. These subjective symptoms are very important in guiding the diagnosis. In our experience, the impression of coming out of a dream after the syncopal episode is a subjective symptom commonly reported by patients, if questioned.”
So I think syncope, which was my original diagnosis from the cardiologist, is correct. So when I thought I had cataplexy I needed to learn my triggers. With syncope it’s no different, I need to learn my triggers!
I appreciate all the feedback. I agree about further tests. I’ve been keeping a log to take to my sleep doctor and cardiologist. I see them both again in June. I’m trying to do my own research in the meantime since I don’t seem to be getting answers from them. It disappoints me that my sleep doctor was so quick to give me a diagnosis of cataplexy simply because I dream when I pass out. He didn’t ask questions or explain cataplexy. He was also dismissive towards my concerns about my weight loss. He has helped me so much for him to be this way now. And I have heard about checking with a neurologist. I’ll figure it out eventually.
Thanks for your post. It seems that the psg and MSLT were both performed, was there any mention of REM sleep either during the overnight or during the MSLT. I see that you slept during the naps,however, the important distinction here is if it was sleep or REM sleep.
The treatment you received is in line with options for treating narcolepsy. Everyone has different effects when taking xyrem and sometimes it is a choice between dealing with the side effects or the disease. Wt loss is a big deal and especially if you do not need to lose any. Milkshakes work well for weight loss by the way.
I am also curious to know if other neurological issues have been ruled out. have you had an MRI of your brain and cervical spine and if so was it done with contrast? How about an EMG? Have you had a complete neurological examination?
There is certainly something else going on here beside narcolepsy and it is important to get results.
Best of luck
Perhaps you could tell us how you were diagnosed with narcolepsy and what the results of your testing were. Also is the xyrem helping with this problem whatsoever?
You have alot of symptoms here that need sorted out, not all attributable to narcolepsy.
Sometimes we need to just back up, slow down, think and then develop a plan.
There are many intelligent folks here who would be more than willing to help
For my sleep study I did the overnight study first and didn’t have sleep apnea. I did the daytime study and they asked me how I felt I did for each session afterwards. I told them I didn’t fall asleep at 9AM because my brain was too active. I said I didn’t fall asleep at 11 AM because I was hungry and I knew I’d be eating lunch after the nap was finished. I knew I did fall asleep at 1 PM because they woke me up when the nap was over. And again at 3 PM I didn’t think I had fallen asleep. I actually fell asleep all 4 times and averaged falling asleep in 4 minutes. This was eye-opening for sure. I then went on Modofinil but I had an adverse reaction to it so I went on Adderall. The doctor gave me Lunesta to sleep at night. Then Ambien. Then Doxepin. Then Klonopin. Nothing put me to sleep. I then went on Xyrem in December, 2017. It took it about a month and a half to really start working, but it did start helping. I found at this point Xyrem made me a normal person during the day and I came off Adderall.
Xyrem works for me, but I’m over the side effects. Two initial side effects (tingling in my extremities and ringing in my ears) went away over time. Here are my persisting side effects. Xyrem has totally killed my appetite during the day. I’ll be hungry for dinner, and starving when I take the medicine at night, but I have to force myself to eat lunch while not being hungry. At the time I started Xyrem, I was in the gym and in the process of trying to gain 10 pounds. Since I’ve been on Xyrem, I’ve actually lost 20 pounds instead. It also makes my forehead feel weird. It’s like I can always feel my veins moving and that wasn’t a thing until Xyrem. My scalp tingles and I believe that’s due to Xyrem. Call me crazy, but Xyrem makes my teeth feel like they don’t fit together. It’s hard to describe, but during the day my teeth don’t feel normal together, and when I take Xyrem at night my teeth or gums often feel swollen or something making them touch in places they wouldn’t normally touch and makes my upper and lower teeth seem to have an awkward fit together. I came off Xyrem a couple nights in February and my teeth went back to feeling normal. I am a musician that plays a wind instrument and it has affected that aspect of my life as well. In the morning it’s hard to have enough air for the instrument. It also makes my lips feel quiver while trying to play. This gets better as the day goes on, but I’m not playing at my top level.
As noted in my original post I was having issues working out and would have reactions to it, so I was seeing doctors and cardiologists trying to figure that out. I was diagnosed with having syncope. I believe this is what I was confusing for cataplexy. In Dec. 2018 I asked my sleep doctor if there was a relationship to narcolepsy and dreaming when I pass out. He stated people don’t dream when they pass out and that I have cataplexy. That’s when I started doing research and found this page thinking I had it. I now see that I don’t. I do have something that causes reactions and I go out and dream. As ferret mentioned, maybe that’s a sleep attack. I will say while having tests run last year I did a glucose tolerance test. At that time we thought my gym issue was a blood sugar issue. This is the one time that I passed out and didn’t dream. So that speaks to syncope being a correct diagnosis. Every other time I’ve gone out I did dream, so I don’t know how to answer that one!