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Restless Legs Syndrome

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Nightmare/hallucinations

Hoochybaby profile image
17 Replies

Thank you all who replied to my post about my terrifying ordeal on New Year's Eve.i managed to get an appointment with my GP today after describing my condition to him and my partners observation he examined my blood pressure,pulse ,temperature,reflexes etc etc and nothing was showing up. He noted that I was on medication for a irregular heartbeat and for restless legs syndrome. He said there was probably three scenarios:- 1 that I had had a mini-stroke although this was unlikely taking into account that I was already on blood thinking tablets. 2- that the Gabapentin I was taking for rls was responsible. 3-I had some kind of fit causing the nightmare was most improbable or could have been that I had suddenly awoken from deep csleep and didn't know where I was.

He said he could send me for further investigation but I declined for moment. He told me to stop the Gabapentin for a few days or a week to see if there was a reoccurrence and start again if not.

So I am left at the moment 2.24am fighting insomnia again and rls!!

Not sure what to do but I suppose his advice.

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17 Replies
pilateskid profile image
pilateskid

I was on gabapentin, several years ago and I would say I was wired to the moon on it....came off it , have been on several other drugs......the best thing I did was see a neurologist privately......I appreciate not everyone can afford to do that...

I had to use some of my savings.....but it was worth every penny. I'm off dopamine drugs and on a controlled drug.....daily life is much better now.

Hoochybaby profile image
Hoochybaby in reply topilateskid

Where in the uk did you see the neurologist privately??

Hi again, sorry to disagree with your doctor but your description of your experience sounds exactly like my experience of sleep paralysis. I experienced it many times.

Sleep paralysis can occur during "paradoxical sleep" also known as Rapid Eye Movement Sleep. It's called paradoxical because although the brain is very active, the muscles (apart from breathing) are paralysed.

If your partner observed that you also stopped breathing, that's another matter and it might be a good idea to see a sleep specialist. Sleep apnoea can cause sleep paralysis.

Sleep paralysis may or may not be due to gabapentin. Gabapentin isn't listed as a cause of sleep paralysis, nor is sleep paralysis listed as a side effect of gabapentin.

If you have sleep apnoea, I don't think gabapentin is associated with that either.

Heres some info on sleep paralysis

nhs.uk/conditions/sleep-par...

webmd.com/sleep-disorders/f...

sleepeducation.org/sleep-di...

sleepfoundation.org/narcole...

in reply to

As someone with disturbed sleep, I have also had sleep paralysis on a number of occasions. I had what were called "incubus" dreams where I was convinced someone or something was in the room with me and I could not move or speak. In days of old, these were interpreted as visits by a demon, because of their limited understanding of the process of sleep

I have since learned what it is so it is not as terrifying to me. I also keep a ticking clock in the room and will count that when it happens. It helps ground me and to realize that it really does not last too long.

My understanding of the disorder is this: When you go into REM sleep, your body is paralyzed so you are not acting out your dreams physically.. You are supposed to wake up in the order of having the paralysis disappear before you become conscious. In sleep paralysis, the opposite happens. You become conscious before the paralysis wears off. You them have a period where you cannot move, speak or change your breathing. This causes the mind to play all sorts of tricks. You may thing there is an intruder or a monster in the room and you cannot move, you may try to move or talk/scream for help but you can't. My ticking clock helps me realize that it really is just a short period that this goes on for. It is still disquieting for me when it happens, but not terrifying anymore.

I have read in journals that the average person may have it happen once in their lives, but those of us with disturbed sleep can have it happen more often.

Hope this helps:

Jerold in Citrus Park. FL "What can't be cured, must be endured."

I

in reply to

Thanks for this. This post is some months old and would have been helpful for the member whok started the post who appeared to have suffered sleep paralysis on new years eve.

I don't think they've had it again since.

It was kind of you to offer your reply. I did already know this because I repeatedly suffered it myself many years ago. I do associate it with drug use or alcohol abuse.

My sleep paralysis was also accompanied by dreams in which metal rods were inserted upwards into my spine.

This phenomenon is thought to be the origin of the modern myth of "alien abduction" replacing the incubus myth.

in reply to

Yes - I had forgotten that fact about the alien abduction aspect of it,. I was so embarrassed and upset the first time I had it happen. I was with a friend and we drove 225 miles to Homer, Alaska one afternoon to watch one of the volcanic islands out in Cook Inlet erupting. This was before I developed RLS. The hotel messed up our reservation so we were both in a double bed. Most men in America are very uncomfortable having to sleep in the same bed with another man and I was no exception. I did not sleep well.

I remember waking up and realizing I could not open my eyes, speak, move or even change my rate of breathing. I remember trying to scream. Of course. the longer I could not do any of those things, the more I panicked and struggled to yell and move.

When the sleep paralysis ended, I screamed and flew out of that bed. I woke my friend Jim up and he was all like "WTF, dude! What's wrong." I apologized and said that I had a terrible dream. I never mentioned this to anyone else until I started have RLS and my sleep medicine doctor asked me about it during a sleep disorder screening. I explained what happened and she told me what it was and it could be terrifying but it was harmless.

I still have an episode of it every couple of years.

Jerold in Citrus Park. FL "What can't be cured, must be endured."

in reply to

I agree, it's terrifying. It happened to me frequently at one point, but hasn't really happened now for years.

It was definitely associated with drug use in my case and when I stopped those particular drugs, it virtually disappeared.

I did experience a similar, perhaps related phenomenon, when taking pramipexole particularly in that when sitting still I could quite suddenly go from being awake, straight into a dream. I don't recall this has happened since stopping pramipexole.

Not frightening but very weird!

Hoochybaby profile image
Hoochybaby in reply to

Thanks Manerva fortunately I have only had one reoccurrence of my nightmare since new year eve and although scary it wasn’t had bad and at least I knew what was happening at the moment I’m not taking any drugs at all for rls dave for a paracetamols now and then and valerian root also now and then. I’m greatful to get rid of the dreaded pramipexole it was hard stopping but worth the hardship

Josana13 profile image
Josana13 in reply to

I used to have these episodes. One day I went to my GP and he put me to sleep to do some work on me. That evening he was on the news. He was accused of putting girls to sleep (at the time I was 23) and sexually abusing them. That night I was paralized when I felt someone coming towards me in a white doctors gown. I couldn't move. Several times I felt that I woke up and I didn't. It was the scariest and most horrific experience. I finally woke up and screamed for my daughter who came to sleep with me. When I would fall asleep, it would happen again and she would wake me up. I have no idea if this doctor abused me or not.

Jelbea profile image
Jelbea

Glad to know you saw your GP. Although the information given with gabapentin does not include nightmares there is plenty of information on the internet of how others have suffered very realistic horrible dreams. We are all different and whilst some can take this drug it is obviously very bad for others. I note there is a warning not to stop gabapentin abruptly as it can cause a seizure but I am sure your GP is aware of this.

I hope so much you get this sorted as it is very disturbing for you.

nightdancer profile image
nightdancer

Did your doctor suggest a sleep study> RLS is neurological, you might want a reference to a neurologist or a sleep doctor. To be clear, RLS is not diagnosed with a sleep study, but other things can be going on in your sleep.

DTache profile image
DTache

With no reservation whatsoever, if you were my patient my advice would be that we are scheduling you for an attended sleep study… Not a home sleep test which are woefully inadequate for what you present with! you need a polysomnogram no doubt, hands-down, end of discussion! I have a patient referred to me for facial pain upon awakening… Long story very short she had a 20 year history of epilepsy and despite five medications and two brain surgeries she continued to have five seizures a week.

We placed her in an oral appliance design to stop snoring and control sleep apnea and since the very day or I should say night that she started wearing The device , The weekly seizures Ceased! . So many central nervous system and cardiac problems and neurovascular problems can occur at night time with severely fragmented sleep and restless legs, Which is a sleep problem when you are awake, often continues into the night as Periodic Limb Movements but it must be confirmed and only can be confirmed with an overnight sleep study. This movement disorder of sleep is documented to be a huge risk factor for stroke… Nobody would argue with that-no one! Like Restless legs, periodic limb movement disorder of sleep is a movement disorder associated with dopamine deficiency which can lead to cardiac activation and can bombard your central nervous system with all sorts of high energy arousals which can lead to not only stroke and a bunch of other medical problems including Cardiac arrhythmia s And insulin Resistance leading to diabetes as well if the irregular heartbeat doesn’t get you first! I wish I were not correct when I say all these things!

All this discussion about gabapentin etc.… That stuff is aimed at only controlling the SYMPTOMS of the problem - let’s get down to the root of the problem… Let’s get a diagnosis and stop throwing medications at the symptoms! for anyone who’s had advanced training in sleep medicine this is a total no brainer in my opinion! You need a polysomnogram, yesterday to confirm any part of this or all of it! That’s my opinion and I’m sticking with it! God bless you and I hope that you get a handle on this and get it treated because the treatment is most often rather simple you just need data and the guessing needs to stop!

Hoochybaby profile image
Hoochybaby in reply toDTache

Hi thank you for your detailed discussions of my sleep and rls/plm disorders. I took my last pramipexole tablet a week ago and as per myGP instructions I am stopping gabapentin for one week before starting again with 100mg three times per day. As you can well imagine I’m very confused by the whole episode not knowing which way to turn. I do know that when I was taking pramipexole before augmentation set in if I’d get a good nights sleep which to my untutored mind suggest a lack of dopamine. The episode that I had on New Year’s Eve was frightening but could have been a one off hopefully but I have never experienced anything like it but since then with no medication save zopiclone I have been ok apart from rls which keeps my awake most of the night. My GP that I saw some weeks ago at my suggestion is going to refer me to a sleep clinic that also specialises in rls at Sheffield hallamshire hospital. I am most concerned about my condition but I do take apaxiban a blood thinning drug since I had an episode a few months ago when I did stay in hospital overnights for irregular heartbeat my HP did say that would prevent a stroke any suggestions would be welcome thank you

Hoochybaby profile image
Hoochybaby in reply toDTache

Hello dr Dan

Back again maybe you could give me your opinion to me.

I had arranged to go on holiday on the 13 jan this year in your opinion do you think I would be wise to cancel considering my position? I was going to Spain for 4 weeks but do you think my condition is serious enough not to go . Thank you for your opinion

Hoochybaby profile image
Hoochybaby in reply toDTache

Dear Dr Dan

Could you tell me in what branch of medicine you specialise or are you a GP?

You seem to have a much greater knowledge and understanding of any of my GP’s at my local surgery

kelka profile image
kelka

It does sound like sleep paralysis. I get it often and it is always scary. Main trigger for me is sleep deprivation. I've had some terrifying hallucinations and they always unnerve me. Hope it passes soon. Wikipedia have quite a good entry on it btw

Arkangel profile image
Arkangel

Best follow your doctor's advice, at least for a few days if you are going to continue consulting with him. I hope you find the answer soon.

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