Unexplained sleep? Disorder?

[Jersey Girl]

Sleep paralysis. In my not-so-professional opinion. I've experienced that only twice in my life that I can think of. Does it feel like dementors are sucking your soul out and you really can't move or speak?

Props to Jersey Girl for the Harry Potter reference

Always.

[malkie]

The first time it happened, I wasn't trying to move. I heard the sound of an airplane taking off and a high pitched noise. My heart felt weird. I thought I had a heart attack and died. Then I had a feeling of doom when I was out of it. I spoke to the GP and we considered it to probably be like a deer in headlights anxiety attack.

Then I wondered if it was seizures. There have been times I've smelled burning just after. Usually I hear footsteps and when I finally realised it was hallucinations, I had heard my husband talking but her wasn't home.

I have trigeminal neuralgia. I feel crawling up my head and across my face.

Did you resolve it when you figured out what was involved?

I went through a number of diagnoses and treatments, including psychotherapy (a whole other story) without any real resolution. But it just went away at one point, seemingly unrelated to any of the treatments. So it remains a mystery, unfortunately.

[Imwashingmypirate]

Ahh.

My earliest night time hallucination was when I was about 5 or there abouts. I saw a dragon fly and thought it was real but my mum couldn't see it. I think I saw things earlier than that but that was the first time I actually became aware of seeing something that wasn't real. Diagnosed as hypnagogic and pompic hallucinations with a "vivid imaginary life" relating to child hood trauma.

Hallucinations stopped when I had my son with only one here and there but have returned in full force this past year. I wondered if hormones made them stop.

I think it has to be related and I know when I finally see neurology they are going to say it is anxiety. The last message they sent to the GP was that they suspected I had somatization disorder without even seeing me. Probably do. Kinda coming to the point where even I am starting to believe it's psychological lol.

[malkie]

Ahh.

My earliest night time hallucination was when I was about 5 or there abouts. I saw a dragon fly and thought it was real but my mum couldn't see it. I think I saw things earlier than that but that was the first time I actually became aware of seeing something that wasn't real. Diagnosed as hypnagogic and pompic hallucinations with a "vivid imaginary life" relating to child hood trauma.

Hallucinations stopped when I had my son with only one here and there but have returned in full force this past year. I wondered if hormones made them stop.

I think it has to be related and I know when I finally see neurology they are going to say it is anxiety. The last message they sent to the GP was that they suspected I had somatization disorder without even seeing me. Probably do. Kinda coming to the point where even I am starting to believe it's psychological lol.

{{{{ Pirate }}}}

[Imwashingmypirate]

What does "{{{pirate}}}}" mean?

[malkie]

What does "{{{pirate}}}}" mean?

The { } around a name is a sign for a virtual comforting hug. I hope you'll accept it in the spirit in which it is intended.

[Imwashingmypirate]

Aww {{{malkie,}}} thanks.

[msnobody]

for what it's worth, in the past, I’d have episodes of what I think was sleep paralysis, and hypnogogic hallucinations. I’d go to sleep, feel like I had slept a good while, wake up only an hour later, in a pool of drenching sweat, night after night. The most vivid time was waking to the sound of glass shattering. The waking to glass shattering sound was one of the moments where I told myself there is definitely something wrong with me. Daytime sleepiness became an issue, and, then, clinical depression. I was put on antidepressant after antidepressant which didn’t help at all. When to a psychiatrist and at the fourth visit, he told me to go back to my PCP because he didn’t see any mental health reason for my depression, and I should tell my PCP that the psychiatrist said he thought it was something medical causing the depression.

I finally on my own, faxed my medical records to a doctor at the sleep disorders center who agreed that polysomnography and a multiple sleep latency test may be beneficial. There was a long period of time where I’d wake up after and hour of sleep and have a very morbid feeling. I still wake up every night after about an hour of sleep, but no morbid feeling like I did years ago.

I had the sleep study and MSLT. Sleep study was normal. MSLT revealed hypersomnia syndrome. I didn’t get a narcolepsy diagnosis because I didn’t fall asleep within 5 minutes, but instead 8 minutes. On the nap opportunities during the MSLT, when I went to sleep, I thought I didn’t, and when I didn’t think I had gone to sleep, I had. Back then, I also remember being in church watching something on the screen, thinking I was awake, but maybe someone on the pew would say something, and it felt like I was awaken from sleep when they spoke.

Anyway, after the sleep study/MSLT, I was put on modafinil. After 10 days, the clinical depression and everything went away. Over the years, insurance quit covering modafinil for hypersomnia, and I was put on dextroamphetamine sulfate. At some point, that wasn’t covered by insurance, and I tried to go back on modafinil which was no longer effective. It was a struggle dealing with insurance, and mail order pharmacy— a soapbox I’ll spare you from. There were often gaps in having the medication due to insurance and mail order pharmacy rules. At one point, I went without it for a while, and when I’d turn the corner at work, my legs would almost give way. I’d be slow to bring things to mind, and it was like I had ADD.

Several years ago, I stopped the dextroamphetamine sulfate out of frustration because of the difficulty of getting the rx consistently without a huge hassle with each rx. Two years went by and I felt like the clinical depression was returning. Started on modafinil, and the depression again went away. My theory is my hypothalamus is defective in some way, and without medication, I slowly build up a sleep debt, which eventually ends in depression.

I feel for you with what you are experiencing. That was one of the few extremely difficult things I’ve gone through in my life, and definitely tops the list. It is my opinion that there is so much that is not known about sleep disorders, and people are undiagnosed, and suffering, and takes a toll on your body.

[Jersey Girl]

I don't think I have anything significant to add here. Pirate, I hope you can find the way out of this state. It sounds pretty complex and something beyond sleep paralysis. You know I loved you from the first post all those years ago and I absolutely hate this for you.

I wanted to say, too, that it seems as some of us here are really going through some tough medical things or our loved ones are. I think many of us come here and post to distract ourselves. I know that I do that. All in all, I'm glad these threads are happening because maybe it can help someone else and the support here has been so genuine and caring.

It's a good community of posters here. For sure.

[Imwashingmypirate]

Jersey Girl,

This is interesting. I will look into it. I know that my thyroid causes my pituitary to cause other systems to not function properly including fertility.

There have been nights where I've barely slept or woke up constantly. When the thing happened the other day, I was dozing off. I was so exhausted but had no reason why. I get that morbid feeling. But I have noticed that the next day or two after it happens I feel very low. I generally don't have depression. But yesterday, I felt dreadful. It has improved today but I have been riddled with anxiety.

I am used to negative experiences lol. I always tell myself it will pass and it does pass.

I love you too. I hope you find answers and solutions. I think you are right about having a community. I have felt quite alone for a while and didn't think to ask anyone else about these experiences other than the Dr and my mum and husband and I can't really talk to them and just getting the experiences out there, out of my mind made a difference.