Fatigue vs Hypersomnia

[ryan31337]

Hi all,

I'm contemplating how to best categorise my symptoms and have started to explore the difference between fatigue & hypersomnia, something up until this point I have mistakenly conflated. I'm hoping some of you out there have had formal diagnosis of hypersomnia and might be able to share your experience?

Put simply I'm wondering if the biggest day-to-day problem I have currently is hypersomnia related to OI. I get very sleepy (heavy eyelids, cognitive slow-down) every few hours during the day, without much in the way of physical tiredness. Its especially noticeable after meals & responds well to caffeine. If I lie down and give in I will often fall asleep within minutes, usually waking spontaneously feeling very refreshed and energised after ~30 minutes. If I keep pushing on I usually get a worsening of symptoms that seem to match that of OI (hyperadrenergic POTS).

This is markedly different from a PEM day for example, whereby the sensation is much more fatigue/pain/malaise and I generally can't fall asleep in the day regardless of how much I'd like to.

Does this sound familiar to anyone? Would be good to hear your thoughts and any tips you might have

Thanks.

 

[Invisible Woman]

I understand what you mean, but sadly have no tips.

The fatigue associated with PEM or even just ME feels very different to me than the fatigue I experience when I need to up my thyroid meds or when I am anaemic. This surprised my GP - I could tell her which was causing the problem by the way I felt - previously she had assumed it all felt the same.

 

[Seven7]

Does this sound familiar to anyone?

Yes I have both, in my case the hypersomnia is related to medication / supplement. When I go up or when I go down something, specially LDN. Once I start, I cannot do anything except to wait it out. If I get too desperate I take iboprufen and it will subside. If the hyperimsonia persist I know I am overmedicating and adjust down.

 

[GlassHouse]

Yes, I have both fatigue and idiopathic hypersomnia. However, I do not feel refreshed by any sleep. It has been 5 years since I have felt that. I feel worse when I wake up each day than when I went to bed. I can also fall asleep within 3 min of laying down at any time and was sleeping 22 hrs without an alarm on weekends. I was originally tested for narcolepsy, but I had no instant REM during the daytime tests.

I do not respond to stimulants (coffee or meds). The sleepiness is different from the weighted-down feeling of the PEM, which is also different from the weakness/ dizziness/ "feeling like legs will go out from under you" that I get from my hyperadrenergic POTS.

For me the POTS is the worst one before noon, then around 3-5 PM the sleepiness becomes worse, then the PEM is the worst until I can lie down (which also helps the POTS).

I also don't think my hypersomnia is as idiopathic as my previous neurologists say. I got copies of my 4th sleep study, and it shows that during REM sleep, my hypopnea index is 4.5. Mild sleep apnea is 5 events/ hour. Plus I have a spontaneous arousal index of 8 events/ hour. The third neurologist I'm seeing looked at my underdeveloped jaws and said I looked like an Upper Airway Resistance patient, and I think this latest sleep study lends credence to that idea. I'm pushing to get a sleep study at Stanford to know for sure if it is UARS.

Ryan31337, do you take anything for your POTS?

I have a hard time tolerating stimulants because they make the tachycardia much worse. One Dr. suggested a beta blocker for POTS, but my heart rate is in the 30s at night, so he thought it was too risky.

 

[CFS_for_19_years]

@ryan31337, how long have you been sick?

The reason I ask is because I had hypersomnia at the beginning of my illness, and it gradually got better, and now I have military-grade insomnia

I think others here might have experienced the same thing - hypersomnia at the beginning, which gradually went away.

I also have problems sleeping when I have PEM, but I have problems sleeping the rest of the time too.

 

[ryan31337]

Thanks for all your replies guys

@CFS_for_19_years, It's been approx 20 years now, gradual onset aged 10. Same experience here, lots of sleep but no restoration in the early days, always woke up feeling more sleepy & fatigued which wouldn't shift. Also had a lot more night sweats back then but otherwise tended to sleep through OK. Now its changed and I struggle to stay asleep through the night, but otherwise wake up feeling OK without fatigue but rapidly become sleepy during the day. As you mention, the sleep disruption is a lot worse after excessive activity - glad I'm not alone in that, I'm fed up telling well meaning doctors that sleep hygiene won't help a bit and that the problem appears to be 'reactive'.

@GlassHouse, that's rough, sounds like you're getting a double hit from POTS and sleep apnea. I need to do a bit more reading up on this I think, I don't know how applicable the term hypersomnia is if I'm not sleeping for excessively long periods and remaining sleepy? I've never slept more than about 10hrs a day in my life, I am also refreshed from short naps, which seems quite different to what you describe.

The timeline for me is fairly consistent peaks and troughs of energy/sleepiness throughout the day if I get the naps in. Tachycardia is worse in the early hours/morning. Blood pressure peaks in the late afternoon after activity. I'll get worse OI & pre-syncopal after meals and in the evening, or any time I try to push through the sleepiness.

I take Bisoprolol 2x 1.25mg daily, which seems to have helped a great deal in conjunction with electrolytes & salt loaded fluids. I got into a really bad place with more severe orthostatic symptoms a couple of months ago, something hormonal was out of whack I think, I was excessively thirsty 24/7 and think I washed everything out. Within days of the beta blockers + electrolytes/salt I saw a big change. Veins returned, blood pressure became less erratic, less severe OI symptoms, massive sleep and GI improvement etc. My heartrate dips into the 30s at rest on that low dose but the side effects have been minimal

 

[ryan31337]

I do wonder if my sleepiness is simply the hypoperfusion effect of OI/POTS, but if that's the case why do I get much better results from a 20 minute sleep compared to just lying down for 20 minutes?

 

[GlassHouse]

@ryan31337 I'm glad to hear that the beta blockers and salt loading gave you some improvements! That's awesome!

I think a lot of people with CFS have lower levels of the deeper stages of sleep, or do not get any at all. That's one way in which I differ, since I get normal amounts of deep sleep, I'm just having breathing trouble when I get there.

I have noticed that for 3 years I had progressively worse hypersomnia and the last 2 years I've had periods of insomnia (well, maybe, haha my sleep studies also showed I'm actually in stage 1 sleep when I think I am awake. It makes me feel like I'm going crazy). I do get that wired but tired feeling if I've gone too long without resting and then I have a harder time getting past light sleep into deeper sleep. On nights when I wake up constantly, it seems to be from POTS. I will go from freezing cold to feverish within minutes like my body keeps overshooting on temperature control. My heart rate will jump from 40 to 100 and I will sweat enough to drench the bed and be crazy thirsty, but I'll need to pee immediately if I drink anything.

I'm sure the hypoperfusion is a contributor to the sleepiness. The only time I feel brain fog lift is if I am doing heavy cardio, with my heart rate around 200 bpm. I will lose all feeling in my arms/ legs (pins and needles), but my brain will feel so awake and alert. It all goes to hell as soon as I stop exercising though and then I am likely to black out as all the blood rushes to my core. It's like my heart can only get the blood up to my head if I make it work crazy hard.

 

[u&iraok]

Hi all,

Put simply I'm wondering if the biggest day-to-day problem I have currently is hypersomnia related to OI. I get very sleepy (heavy eyelids, cognitive slow-down) every few hours during the day, without much in the way of physical tiredness. Its especially noticeable after meals & responds well to caffeine. If I lie down and give in I will often fall asleep within minutes, usually waking spontaneously feeling very refreshed and energised after ~30 minutes. If I keep pushing on I usually get a worsening of symptoms that seem to match that of OI (hyperadrenergic POTS).

I get this sleepiness twice a day--ranging anywhere between 11:00-4:00 pm and 7:00-10:00 pm. I nap both times for 5-30 minutes. (Bedtime is 11:15) Feel much better afterwards. I've gotten refreshment from just being half-asleep/dreaming for a minute or two! (Microsleep). Often I HAVE to sleep, eyes will not stay open and if there is noise I get very irritable and miserable.

The fatigue associated with PEM or even just ME feels very different to me than the fatigue I experience when I need to up my thyroid meds or when I am anaemic. This surprised my GP - I could tell her which was causing the problem by the way I felt - previously she had assumed it all felt the same.

Me too. I can identify different types of fatigue. Thyroid fatigue/malaise has been the worst for me.

@ryan31337, how long have you been sick?

The reason I ask is because I had hypersomnia at the beginning of my illness, and it gradually got better, and now I have military-grade insomnia

I think others here might have experienced the same thing - hypersomnia at the beginning, which gradually went away.

I also have problems sleeping when I have PEM, but I have problems sleeping the rest of the time too.

Me too. But insomnia is much better now from melatonin and other natural sleep aids.

 

[Wendymay]

I have been awake all night. Even had some wine before bed and that didn't make me sleep. My heart was racing during the night no exertion just lying down. This condition/disease gets more bazaar as time goes on !

 

[ryan31337]

A little update to this thread: I've now had Polysomnography & Multiple Sleep Latency Test investigations done. Really looking forward to the results at the end of the month

The more I learn, the more my symptoms match Narcolepsy w/o Cataplexy rather than Idopathic Hypersomnia. I'm sure it won't be that clear cut though, I think sleep-disordered breathing (I'm hypocapnic) and autonomic instability (hyperadrenergic POTS surges) are playing a big part in messing up my sleep.

 

[Aclanton]

Hi, Ryan. I have fatigue and sleepiness issues and see a neurologist at Emory who researches hypersomnia. Just wanted to add that taking Wellbutrin and Vyvanse changed my life...woke me up for the first time in years. Dr. Trotti says they see some overlap between primary hypersomnia and CFS at Emory. (I've been diagnosed with both but am not sure which is correct.) She prescribes her patients Wellbutrin, Nuvagil, various stimulants, Clarithromycin, or Flumazenil. There's also an orphan drug in clinic trials that has shown promise for sleepiness. Not all of my symptoms went away, but those two meds at least keep awake. Thought I'd share.

Hope your study is conclusive!

 

[ryan31337]

Hi @Aclanton, thanks for your tips. I'm a bit wary of stimulants because of my quite variable hypertension But the others could be worth a look if all else fails.

An update for everyone:

My results were unhelpful! I had 'atrocious sleep' in terms of induction & maintenance, but no sign of classical disorder like restless leg or apnea. Despite getting under 5hrs overnight I apparently didn't sleep at all in the MSLT - though I have definite memories of drifting off more than once and dreaming briefly before waking up with limb jerks... so maybe we have a different definition of sleep

The doctor said overall it was very typical of a POTS patient. I haven't seen the report detail yet but would assume that means messy sleep architecture and high arousals of unknown cause? I was prescribed CBT for Insomnia (meh...) & Circadin (extended release pharmaceutical melatonin). Also another drug called Pizotifen, primarily as migraine prophylaxis but which also should aid sleep.

When I pressed for speculation as to the causes of the 4am insomnia and post 7am 'surges' that wake me up he said an endocrinologist would be better placed to answer that. I've since seen a really good POTS-literate one and he seems to think the excessive daytime sleepiness and the 4am insomnia are all linked to hypoglycemia, which makes a lot of sense with the excessive adrenaline interaction. Starting a super low-carb diet today to see what happens...