first ever post so if it looks like I don't know what I'm doing, I don't...
I have had sleep problems from a very young age. At school and as an adult, I was always being accused of being lazy and disinterested because at times, during the day, I needed to sleep.
My symptoms are just about every one going from REM to non REM disorders. I had one overnight test and MSLT (multi sleep latency test) the next day about 4 years ago. Overnight showed nothing (even though I had a mega nightmare and false awakening) apart from waking up 27 times and being aware of only 3 times. MSLT showed <6 mins over 4 sleeps during the day but would have been believed lower as a maintenance guy was clattering about outside my door for the first one!
Was told it wasn't Narcolepsy, even though it all points to that. No reason given.
I have tried every medication known for my sleep at night as I said I'm now afraid of the dark and what it brings. I have fractured a tooth & dislocated my jaw after having terrifying hallucinations, wake with bruises and recently a hand injury (that lasted 6 months) that was agreed by hospital it could have been done during the night and none of the tablets have worked. Some actually made things worse. I am now on 200mg of Modafinil a day for the daytime sleep and admittedly, it has transformed my life in such a positive way, I'm probably addicted to it already for that alone sadly.
I now feel a bit lost as I am being told I have an "Atypical Sleep Disorder" with crossovers from parasomnias/disorders. Nothing fits into a neat box apparently. I find it difficult to explain to my employer and other people as it has no official diagnosis. I've had conversations where everyone tells me they have trouble sleeping, they can't sleep either etc and it feels dismissive to me and it made me question the validity of my symptoms with the consultant.
Do I now just say Thank You for your time and live with it? Do I insist on a second overnight test? Do I just take the Modafinil and be grateful? Should I be seeking a definite diagnosis?
What would you do?
Any thoughts would be appreciated 😊
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CreamTea6
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Couldn't be Periodic Limb Movement Disorder, could it? Wakes you to threshold but you don't become conscious, as you describe. Setteles down with Clonazepam.
most people have ‘atypical’ sleep conditions. Also people will always try to get a ‘ones upmenship story for you. I would never tell my boss about this kind of thing. Try to get yourself to a large teaching hospital such as Mayo. More to follow if you like. My wife & I did not realize how bad my problems were until after I was using the cpap machine
_ yes, it could be an atypical sleep, however I would keep exploring a better diagonostic. Keeping on Eliotf's track, I have a strong bias toward sleep problem been provoked by SDB (sleep disorder breathing). Only after this side properly worked out, I would believe in other possibilities for a broad range of ilness (not only sleep, but also depression, diabetes, teeth grinding, and so on).
_ My foremost question: have you ever gone to one (one more) polisonography? what were the results, in terms of RDI? If yes, could you eventually post them downhere? ( RDI means - from Apnea Board Wiki -: The respiratory disturbance index (RDI) — or respiratory distress Index — is an formula used in reporting polysomnography (sleep study) findings. Like the apnea hypopnea index (AHI), it reports on respiratory events during sleep, but unlike the AHI, it also includes respiratory effort-related arousals (RERAs). RERAs are arousals from sleep that do not technically meet the definitions of apneas or hypopneas, but do disrupt sleep. They are abrupt transitions from a deeper stage of sleep to a shallower);
thank you for your response (and to EliotF too). Very interesting and informative.
I've not had a polisonography and my breathing, I have mentioned to the consultant I have woken up a few times gasping for breath but was told I was probably having a nightmare as I "don't have apnea". I will have a look at RERAs, not heard of that so appreciate you explaining it to me very much.
I have had sleep problems from as early as I can remember. When I was born I was not breathing, I was strangled by the cord, my head was completely purple and I was not expected to live. I'm not an expert and I'm probably grasping for answers but I thought that would be a starting point. It wasn't.
_ yes, it would be advised you go for a deep educations on SDB (best treated with CPAP machines, such the Bilevel PAP's). Absolute majority of doctors either don't know or don't want go deeper on this association; unfortunately. However, there are good literature and two blogs out there , whereby you could learn a lot on SDB, and so on. (if you want I could guide you to some of them). Everyhing coming from Dr. Barry Krakow would be a good starting point, if we decide to (see some links below).....
_ but, as I said, good diagnostic is very important first of all: PSG (with RDI measurments) is a good starting point. Or alternatively, a little bit more complex (not that much with support of peers on apnea board or CPAP talk, in the Web; I also could help) at the beggining, you could go out and rent Bilevel CPAP machine (Resmed is preferred from my experience), take out the card daily and see your parameters on flow rate, tidal volume, waveforms characteristics, how ofter you have arousal, awakenings (< 15secs), wake ups, and so on ....
"I have mentioned to the consultant I have woken up a few times gasping for breath but was told I was probably having a nightmare as I "don't have apnea". Sounds like me, 7 years ago, when I retired, and started using a CPAP machine, and deep educating myself in all the stuff. Poor sleep for decades (since teen); it was my rebirthing at age of some 61's.
_ waking up gasping for breathing, is strong indication for UARS. I also always had nigthmares, truncating my REM stages (easily spotted on the dataset coming from my Bilevel machine and interpreted by msyself on the free OSCAR app).
_ I have got to a good point of managemente on my two issues, UARS (RERA is the measure for this) and /resltless legs, managed with 0.5 mg of Clonazepam, tailored CPAP parameters, and, quite recently I have been perfoming a kind of DreamWork, by using EFT (emotion freedom techibque)...
no, don't lose muscle tone as such but do feel lightheaded as if I'm going to pass out?
Totally agree with the hallucinations, they are always terrifying ! I have lots and even stupid ones like a barbie doll coming up the side of my bed at head level just grinning at me and action man sitting on my curtain rail pointing a rifle at me. I've had copious amounts of people staring at me, sitting on my bed, in my bed. Colours, mists, shadows, the list goes on.
Sleep paralysis scares me too and I can have 5 in a row if I don't get up and walk around. I feel like I'm being pulled into some dark underworld and will never escape.
I'm so pleased that you finally got a diagnosis 😀 and can maybe understand it a bit better and that you aren't crazy at all. The relief must have been quite intense!
I do understand how hard it has been for you. I have actually stayed single for 12 years now to not put a potential partner through my nighttime me.
Thank you. I think my main objective is to come to peace with it first.
I was born (at home) not breathing as the cord was wrapped round my neck. A midwife was there and got me breathing, apparently my head was black and I wasn't expected to survive more than a week. Obviously I did! Not a head injury as such.
I did have a couple of stays in hospital before the age of 7 for concussion and was pulled unconscious out of a swimming pool at 5. Can't recall any toxic chemicals and my dad admitted to a few bouts of sleep paralysis but no-one else in my family has ever experienced what I do.
I was asking because they have linked narcolepsy to brain damage . So I’m sure with all you encountered as a child you may have damage to that part of your brain. My mother was exposed to high toxins when she was pregnant with me and weighed about 90 pounds and was really sick. I also fell at age 3 off back porch hit head and blacked both of my eyes and also had hard blow to back of head at age 12 . Anyway with what you have told me I believe you do have narcolepsy. I’m not a doctor but been to many. Lol. There are other things though that can cause hallucinating so I would maybe go to another sleep clinic and get a second opinion. Then go from there. I pray for your well being . God bless.
Sounds like you had a tough time growing up as well! Were your injuries seen as clumsy or accidents? I was always called clumsy and it was my fault.
I have always wondered if my difficult birth had an impact. I did mention it to the consultant, I was asked if I made my milestones, I said yes but with difficulties and that was it.
I will see what my options are and I will ask the consultant I have now why it wasn't seen as something worth exploring etc.
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