Nutcluster Posted February 12, 2022 Share Posted February 12, 2022 Hi Everyone Does anyone experience sleep paralysis upon waking when in cycle. I find that trying to pass from sleep to awake can be really hard work sometimes. Sometimes when I am conscious I can’t speak/respond for a while even though I’m trying to. I haven’t had any of the more sinister symptoms (I’ve had those when I was a teenager) just generally cant pull myself out. Sometimes I feel nervous to come out of sleep too quickly as that’s when the cluster can kick in. Can anyone relate? **Details of my cluster headaches: Currently in cycle. CH usually come at night or upon waking. Have been using Oxygen for the last few years but recently added Zolmitriptan nasal sprays to options (use about one a day and the cluster seems to stay away for longer) The attacks aren’t as intense as they have been in the past but if I happen to run out of oxygen or nasal spray they last a lot longer than they would have and do get more intense. I get up to 3 a night and have just been given Verapamil to try (it’s worked in the past but due to pregnancies I haven’t tried it in a few years. Diagnosed around 10 years ago. Quote Link to comment Share on other sites More sharing options...
spiny Posted February 12, 2022 Share Posted February 12, 2022 Hi Nutcluster! That would be horrible I suspect. I have not experienced this myself, but had a boyfriend decades ago who had a hard time with sleep paralysis - wake up but his body was still in that sleep mode with the paralysis. It sucks all by itself. Is your Verap to be taken twice or three times per day? The short acting three per day works better for CH. ATB! Quote Link to comment Share on other sites More sharing options...
Nutcluster Posted February 12, 2022 Author Share Posted February 12, 2022 Yeah it’s just slow getting up but no terror or anything like that. It’s just my brain doesn’t seem to be connecting to my body or something. Very strange. oh that’s interesting, it’s twice atm. 40mg. Back when I was first diagnosed I was prescribed it and it worked (not sure on dose) and then one year it just didn’t work. The GP has referred to notes from Neuro so if it’s not working I will see if we can try your suggestion. you would think after all this time I’d have them figured out. Just seems like you get on top of them and then they change. 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted February 13, 2022 Share Posted February 13, 2022 17 hours ago, Nutcluster said: Just seems like you get on top of them and then they change. So true. It is well known for it's ability to morph and confuse/anger us. Makes it doubly hard to stay ahead or be mentally prepared for the changes it will throw out. Which is why you see so many trying to stay at least even with the changes! Getting out in front is truly a miracle. Sort of reminds me of how many scientists will attack a huge health problem for the world, they seem to go at it from many angles at once. I feel that is what our community does with CH. You may get a lot of duds, but always, something will stick and it mostly makes you scratch your head and wonder. Then the hole digging begins to try to figure out why or how X truly helps. 2 1 Quote Link to comment Share on other sites More sharing options...
xBoss Posted February 13, 2022 Share Posted February 13, 2022 Nutcluster! I gotta have a beer with this guy! GL with your cycle, may it end soon. 1 Quote Link to comment Share on other sites More sharing options...
Sue mcdonald Posted February 14, 2022 Share Posted February 14, 2022 I used to have this a loong time ago. Coincidentally? I today read a peice, it wuoted u if mich psychologist who said sleep paralysis upon waking is because the body is still in REM sleep and when in REM sleep your skeletal musckes are indeed? Paralyzed . He also said we dream while in REM. I used to awaken in such severe pain and i couldn't move. I used to keep emerg meds and a pop where i could manage to grab them without moving. I cannot remember taking them, though. I was on a completely different rx protocol then, also. I had completely forgotten about that lovely aspect!! I really do seem to be hugely improving 1 Quote Link to comment Share on other sites More sharing options...
Nutcluster Posted February 14, 2022 Author Share Posted February 14, 2022 17 minutes ago, Sue mcdonald said: I used to have this a loong time ago. Coincidentally? I today read a peice, it wuoted u if mich psychologist who said sleep paralysis upon waking is because the body is still in REM sleep and when in REM sleep your skeletal musckes are indeed? Paralyzed . He also said we dream while in REM. I used to awaken in such severe pain and i couldn't move. I used to keep emerg meds and a pop where i could manage to grab them without moving. I cannot remember taking them, though. I was on a completely different rx protocol then, also. I had completely forgotten about that lovely aspect!! I really do seem to be hugely improving I am always interested in the links. Sleep stages definitely play a part in Cluster Headache attacks and so there must be a link. It’s never been severe but getting up is hard when it’s winter and when you feel so stuck between sleep and awake. Quote Link to comment Share on other sites More sharing options...
Juss Posted February 19, 2022 Share Posted February 19, 2022 In the psychiatric world, I have known several Manic Depressives and several with severe trauma to have sleep paralysis. Some just had severe clinical depression, wait, they call it major depression now. Oh, I know a few on the verge of a nervous breakdown. Oddly, the schizo types I never saw having the issue. Physically, those with disruptive sleep apnea, who quite often sleep on their back, alarmingly have sleep paralysis. We all know they try to pass the CPAP as helping CH and I don't know of a single person that it has helped. Narcolepsy--especially with Cataplexy---can cause sleep paralysis. They thought Narcolepsy caused my paralysis. It turns out that I never had narcolepsy, fibromyalgia, most likely CH or Migraine, or Chronic Pain Syndrome, yeah, those eminent docs for the past 8 years did not realize that it was a movement disorder, most likely, progressive Multiple Sclerosis with possible damage to the lobes and basal ganglia-oh well, and anyway. I suggest a sleep study, good luck with Rona. All headache forms can cause paralysis as well, that is something I am a bit uncomfortable/unqualified giving an opinion on. I don't often hear of it based on headaches. I would see the head doctor, a sleep specialist, and possibly a therapist-preferably if you can find one, psychodynamic/psychoanalytic, or CBT. Anything else, downright questionable. I have heard of antidepressants helping; however, they have more side effects than benefits. Everyone hates it when I say this, it is true: CBT provides numerous benefits, works better, and it is cheaper, has no side effects. If uncomfortable talking, try the excellent book Feeling Good The New Mood Therapy by Dr. David Burns ($10). I'd double down that there are underlying psych issues. Pills just mask the problem. I know first hand that until I dealt with the unknown trauma and wigging out, the paralysis was unreal. 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted February 20, 2022 Share Posted February 20, 2022 Sleep paralysis is a sign of narcolepsy. Do you have any other symptoms? Quote Link to comment Share on other sites More sharing options...
Freud Posted February 20, 2022 Share Posted February 20, 2022 Oops see that was mentioned lol. Reading is fundamental 2 Quote Link to comment Share on other sites More sharing options...
Nutcluster Posted February 20, 2022 Author Share Posted February 20, 2022 No no other symptoms. I wouldn’t say it’s a serious as all that. It’s very minor sleep paralysis. It’s just like wading through mud for my body to catch up to my brain. Quote Link to comment Share on other sites More sharing options...
Juss Posted February 20, 2022 Share Posted February 20, 2022 That could be a reaction to the hell that you are going through. Please don’t take that as medical advice. I often wonder if any of these damn doctors, even the Ph.D. and PsyD are researching the trauma caused by CH. I could look into that I suppose. Anyways, again, with something like this, don't take my opinion as fact, but if it is not disturbing then I suppose you can roll with it. Or, you can always explore EMDR. Neuroendocrine Associations Underlying the Persistent Therapeutic Effects of Classic Serotonergic Psychedelics https://www.frontiersin.org/articles/10.3389/fphar.2018.00177/full Quote Link to comment Share on other sites More sharing options...
Juss Posted February 21, 2022 Share Posted February 21, 2022 Skip to page 394 if you would like, here is a clinical neurology textbook on Sleep Disorders. Sleep Disorders and Neurological Diseases https://elearning.medistra.ac.id/pluginfile.php/592/mod_folder/content/0/Sleep Disorder.pdf?forcedownload=1#page=368 I skimmed this NIH paper, Classification of Sleep Disorders, and it may helphttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480567/pdf/13311_2012_Article_145.pdf I hate giving bad advice, and I try to avoid speculation. The psychological comes first hand. I know some that take SSRIs such as fluoxetine and sertraline. That is an extremely, fundamentally dangerous, slippery slope. Especially since trauma and nightmares go hand-in-hand. New Insights in post-traumatic headache with cluster headache phenotype: a cohort study (British Medical Journal, BMJ 2020) https://jnnp.bmj.com/content/jnnp/91/6/572.full.pdf 1 Quote Link to comment Share on other sites More sharing options...
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