Help with a diagnosis, I suffer from DSPD (diagnosed) but there is more to it
Posted , 5 users are following.
Hello,
I suffer from DSPD (Delayed Sleep Phase Disorder) for a period of 4 years (my entire adulthood). Only recently I have been diagnosed.
The thing I wanted to ask about is a strange symptom that my doctor couldn't identify.
Almost every single day at 4 o'clock in the afternoon (this changes depending on my sleeping pattern, which is largely abnormal because of DSPD) I experience debiliating states of exhaustion and derealisation. There is no additional drowsiness and I fail to fail asleep most of the times this happens. My doctor said this is not something typical for DSPD, referred me to a psychiatrist but so far nothing came from it.
During this state I experience:
- Strong feeling of being an observer, watching myself from 3rd preson (derealisation)
- Muscle pain and extreme fatigue without drowsiness
- Inability to focus on most trivial things
- Slight coordination loss (if I have to walk I tend to bump into objects constantly)
This is a great problem, perhaps bigger than DSPD itself. I am unable to hold a conversation, I tend to be irritable and have an urge to avoid contact with others. I have no choice but to withdraw quickly from any activity I might be doing (nowadays I plan my day around this).
This state dissipates within 1 to 2 hours. It happens almost every day at 4 pm (sudden sleep pattern changes alter the time it occurs).
I have no medical history other than DSPD and OCD (which I no longer suffer from thanks to succesful therapy) and take no medications.
This has been going for almost a year now with no explanation and nothing to help. As you can imagine I am quite desperate.
Anyone experiences anything similar? Perhaps any doctor here has encountered a symptom like this?
0 likes, 4 replies
denisita martin2501
Posted
I experience the following too (or similarly):
-Strong feeling of being an observer
- Inability to focus on most trivial things
- Slight coordination loss (if I have to walk I tend to bump into objects constantly)
But for me, these symptoms have no schedule... they just occur all day long in general if I didnt get enough sleep the night before. Those days I try to avoid people as much as possible.
Sorry you are experiencing this too, I wouldn't wish it on anyone. It's turned me into a flake sometimes cause I never know if Im gonna be up for social interaction which sucks cause I am a very sociable person and still young (28).
Anyway have they suggested any medication or anything like that?
Good luck!
martin2501 denisita
Posted
Hey,
thanks for the reply. It must be a pain to have this all day long, sorry to hear you have it like that.
I haven't seen the psychiatrist yet. I used to see them quite a lot, I must say I dislike them as they tend to never listen to what is actually happening (hence my DSPD misdiagnosed as depression for years).
One thing that helps me is Provigil (Modafinil), maybe you could try reading about it, it's prescribed for DSPD in my case. I had to put it off for a while though due to tolerance building up, but when it works this derealisation problem is not as severe.
Good luck!
lisa_52741 martin2501
Posted
I am writing to let you know that I was diagnosed with non-24 hour delayed sleep phase disorder about 8 years ago, but have lived with it since I can remember. I found your post very interesting and wanted to share my thoughts in case they're of any help to you.
I read somewhere that people with 'normal' circadian rhythms are programmed to feel sleepy at about 2-3pm in the afternoon, like a dip in energy after lunch, and I wonder if your 4pm feelings could be a more extreme circadian dip. The feelings of coordination loss and other symptoms sound like the body/mind preparing to shut off to sleep, almost like being in a pre-sleep state whilst awake?
I personally feel utterly totally exhausted at some point in the later afternoon on a daily basis, to the point where I can barely keep my eyes open and have to schedule my life around it if possible. It feels like a daily battle to fight going for a nap when this happens, and I often do have to sleep through it at least twice a week. I notice that these feelings of exhaustion are worse for me during my more natural nocturnal phases, so there's an element of prediction there as to when i'm likely to feel at my worst tired-wise in the afternoons.
I wish I could advise you on how to not feel like you do, but all I can suggest is going for a short nap, or sitting outside/going for a walk even if it feels like dragging yourself round the block like a zombie - I make myself walk through it and that does actually help even if making myself do so is torture. The exhaustion tends to predictably pass a couple of hours afterwards, it's a case of riding through it in any way possible. Another thing I do when I feel the afternoon dip is take a vitamin D tablet and drink lots and lots of water, sounds simple but it seems to help me with the immediate feelings of exhaustion. I also take vits B6 & B12 on a daily basis and notice I feel more exhausted if I forget to take them for even a day. I'm not personally one to advise medication long term, and I personally had pretty trippy/outer body experience symptoms with the modafranil when I tried that at one point.
Anyway, I truly utterly sympathise with you! DSPD is really tough to manage.
lisa_52741
Posted
p.s. I'm surprised that your doctor said your symptoms aren't usual for Delayed sleep phase disorder, is s/he a GP or a specialist sleep doctor? I ask because in my experience, the GPs I have seen have had little or no knowledge of circadian rhythm disorders. I attend a sleep clinic and see a sleep specialist who helps with the symptoms and have been assured that my afternoon exhaustion symptoms- desire to nap and the irritability, confusion, disorientation, etc- are all part and parcel of the entire disorder. The reason being because your circadian rhythms will dip and peak throughout your cycle, throw in exhaustion and long-term sleep deprivation and you get what you describe above. To make yourself stick to a 'normal' sleep/wake rhythm when you have DPSD is to be out of sync with your natural rhythm, hence symptoms of exhaustion etc similar to extreme jet lag during normal working hours as a result.