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Discussion Starter · #1 ·
I was prescribed a small dose of Xanax to help me sleep after complaining that I was falling asleep at the wheel during the day (with my kids in the car). I ran out of Xanax a week ago. Just got to the pharmacy today. No refills. Now I have to wait until the doc calls some in. GRRR...

Why can't my brain sleep??? Last night, for hours, I felt the physical sensation in my body that I always get just as I fall asleep. It's like a tingling. My brain, however, would not shut down, at least not any deeper than surface dreaming. I was more awake than asleep.

Two years ago, a sleep study revealed nothing. How can one have a negative sleep study, but have so much trouble sleeping? It is so frustrating, as the resulting fatigue is my most debilitating symptom.

With a year off from teaching, I have fallen into the strangest, but workable sleep pattern. Instead of 8-12 hours straight, I sleep in chunks of 2-5 hours several times in 24 hours. I actually feel more rested and spend less total hours in bed. The problem is that the rest of the world conducts business while I am asleep!!!

I know folks here can relate. Care to share? I'm just so frustrated by this problem and the lack of understanding from the medical community.

1tiredmama
 

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Pamela b
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Hi

I have a dreadful problem with sleeping a lot of the time. I go to bed and do all the right things, no caffine, relaxed after a warm bath and lay awake for hours, tossing and turning and constantly get up to use the toilet.
I never sleep for more than 2 hours at a time
I cant sleep during the daya lthough I do rest
I have dark circles under my eyes and look a mess.
None of my medical team seemt o consider this an issue, I suppose because there is so much else to deal with

It is annoying and frustating .

I have no idea why your sleep tests were negative but is it worth asking for them to be done again ?

Sorry for you and sending good wishes
Pam
 

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Hiya.. I think the medics should think this a big issue, the problem is the quality of the sleep if you only get two hours at a time... your sleep cycle is shot to bits. I struggle too, but have now latched onto white chestnut and valerian.... which helps, though not if my mind is in overdrive. I do have prescription tabs which I use on occasion. If you are not having the sleep time for your body and mind to repair and recover from the day your daytime hours will be in fuzzy focus and feel extra tired.. you need the rest, to be as well as you can. Think it is very hard when your body has settled into a different routine though... I wonder how much deep sleep you are getting???:(
Claire X
 

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Hi, lack of sleep is a major problem. Your sleep cycle does not sound restorative at all. I have some amitriptyline to help me sleep as my muscles spasm, this relaxes the muscles to allow me to sleep. I also have some other tabs which I call my knock out drops for emergencies. Sometimes I find I have real trouble sleeping.

Have you been back to the doc to discuss this? I would hope he would help you to find a workable solution or some meds to help you.

Deb x
 

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Is this a symptom or can you relate to my scenario?

Hello 1tiredmama,

I haven't got a Lupus diagnosis (yet :rolleyes:) but I can certainly identify with this, however my sleep studies did show up some interesting things. I really feel for you as this sort of thing wears you out over the years.

I never get out of REM sleep, as far as the docs can tell. My sleep test took place in a busy hospital at 9.30 a.m., with doors banging and alarms sounding in the coronary care unit next door. :eek:

I was wired up and asked to fall asleep, which was no problem - funnily enough. Afterwards I was told that I fell asleep within 10 seconds and within 30 seconds I was dreaming:sad:. This is always the case, I can fall asleep and within seconds my husband will be shaking me as I am obviously in a distressing nightmare. I also fall asleep at the drop of a hat during the day. We often visit the cinema in daytime and I can't remember the last film I saw completely from start to finish as I always drop off.

My dreams are extremely vivid, Tecnicolor and whilst some are wonderful - others can be extremely disturbing, like watching a tsunami occurring from a high place and watching alligators feasting on the remains (tmi) :worried:. It seems I don't get into Delta Wave sleep and I don't honestly know what the long term effects will be.

I was supposed to have a 24 hours sleep lab test, but at the time the department didn't have the funding and the neurologist left the hospital at which point my case was dropped. Narcolepsy was also mentioned (by the same neurologist) as I fall asleep if I get emotional - which really annoys me as I cannot cry without yawning widely - this hurts my TMJ and also makes me look terrible if it's the funeral of someone I care about:worried:. However I didn't fit in with this doc's personal theory that only certain blood groups get narcolepsy - I'm A+. Once again - case closed.

Perhaps I should make/have made a fuss, however knowing how stretched the NHS is, I always feel that there are people, children especially, having to cope with far worse things, so I just resign myself to coping. Not that I am saying that is the right, or in fact a good thing to do and I certainly don't advocate it for others, so please don't anyone take this the wrong way :unsure:.

I have been like this for the past 40 years after being rendered unconscious (aged 12) and blinded for two days with concussion - following an incident with a boy in my class who thought it funny to throw half a house brick at me. Unfortunately it bounced off the roof of a terraced cottage and connected with my head. I needed nine stitches in the head wound.

I now have one optic nerve larger than the other (often associated with RTA victims) and a lipoma in the brain lining - but I don't know if that is connected. The medical professionals say none of the above is connected so can someone tell me if this is also a Lupus symptom?

I usually take 3.5 mg (sometimes 7mg) of Zopiclone (Zimovane) to try and get some decent sleep - but only for a couple of nights as the effect is very short lived.

Is there anything by way of an injury in your past that you can link this to? I do hope that you can get some help as if you are like me - you worry for your sanity :blush:
 

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Hello there,

Not being able to sleep is a fairly common problem for people suffering from chronic debilitating disease. The causes can be numerous but it is definitely very important. Lack of restorative sleep doesn't allow us to recover or heal in any way so Claire is quite right, the doctors should be taking it seriously.

People are often prescribed low doses of anti-depressants as they can help with pain (sometimes also a cause of sleeplessness) and also restore proper sleep patterns. Anti-depressants are very frequently used for fibromyalgia sufferers who typically suffer from non-restorative sleep.

You need to get back to your doc on this one and find something that works for you. If you can get a proper sleep study done at some stage that would be well worthwhile.

Katharine
 

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Discussion Starter · #7 ·
Thank you for your replies. While I have consulted other doctors, I haven't consulted my rhuemy about this yet. I see her in 2 weeks. I'm going to bring it up and see what she has to say.

During a flare, it is clearly pain that keeps me up, but I can't sleep properly even when I am well. It really is a concern as driving can be dangerous.

Unravelling, I really feel for you. My problems are nowhere near as complicated. Have you seen anyone who specializes in sleep disorders? If not, perhaps you might look into someone at a reputable teaching hospital.

1tiredmama
 

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Hiya,
I too have sleep problems which is made worst by depression. Having said that, it's better now, I'm on pain meds along with I'm still having sleep issues. With two sedating drugs and sometimes a sleeping tablet and sleep hygiene etc. I still don't sleep through the night - waking every 2 or so hours (and that is way more than I got last year)

It's already been said - bring it up with your dr. Sleep makes a big different. It is highly detrimental when you are sleep deprived - them main thing is that it also worsens pain.

I do hope you van get this sorted and improved soon.
 

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It's definitely a good idea to talk to your rheumy about it as he/she is the one who can see more of the complete picture and who should realise the importance of good sleep.

Katharine
 

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I found years back that using foam pads on my bed is the only way I can get to sleep and wake without a lot of pain. I've worked it out to using 4" which basically suspends my joints and takes the pressure off them. I wait for the "back to school" sales and get the "memory foam" pads offered at Target stores. I use 3" (2-1.5" pads) and 1" of a standard eggcrate type pads. They let me sleep easier and without a lot of pain. I suggest these often, but don't know if others find them helpful. I found that if my joints can't relax without pain, then my brain will simply not shut down so I can sleep. I do take amitriptyline, but did that before I was dealing with diagnosed lupus problems.

I also have found that I need to follow the same routine at night in order to get my brain set to shut down so I can sleep. I do read before I turn off the light. The time of it can vary for a few minutes up to 1/2 hour. Either way, I wait until I am sure that I can sleep before I turn in. If I am not, I have found that I will battle dozing or lying there waiting which does none of us any good.
I have also found that putting on a tape which has calm or light music will help distract my brain so that I can fall asleep. Usually the dogs will come to me that they are ready to turn in. They are usually good for a few snuggles until I am falling asleep. The cat helps to purr me to sleep too. Possibly not for everyone, but they help me.

I wish you luck in solving this dilemma. It is not easy for any of us.
Sally
 

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Hi 1tiredmama - I have my first appointment with a rheumi at the end of October so will ask then.

Pink Pearl mentioned Amitriptyline and it reminded me that the rheumi I was seeing back in the early 90's took me off that as he said on of the side effects is nightmares, so as I was already having problems he thought it was a bad idea for me.

The amount of injuries I've had (I also don't get the normal sleep paralysis) from trying to escape things in my dreams - everything from wasps to zombies is quite alarming :eek: and needless to say my husband is sleep deprived too.

I was dxd with fibromyalgia and M.E. back in the early '90's and remember reading that some sleep deprivation testing had been carried out in the USA with a bunch of Marines. After seven days they all exhibited symptoms of fibromyalgia, in terms of widespread muscle pain and extreme fatigue. If this is what happens to an elite group of soldiers, what hope do the rest of us have?:(.

Good luck to everyone coping with this annoying, debilitating and depressing problem.
 

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Zzzzz

You know i think the more I fuss and worry about not sleeping (because I don't like most of us sleep well) the worse I feel. The anxiety just breeds tension and the tension breed pain...it's a vicious circle. I have quite fighting and take it when I can and i am quite amazed that just a few hours of quality sleep is enough...it has to be
unravelling fast, do you use prednisone in your regime? I have to take it in a small dose for Addison's disease, sometimes when I flare from the Lupus my rheumy asks me to double and then look out for nightmares it also can make your mind work on overload.
claire i hear you about the mind that won't quit, so annoying and tiring.
I get something also called hypnick jerks...it happens just after i fall aslpeep then snap it feels like someone has just pugged me into a light socket...
I'm ok with it for awhile but i too give up after a week or two and take what ever, tylenol3, or clonazepam, or a muscle relaxer sometimes just a gravol will help. Good luck everybody, Sandra
 

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I have a similar problem with sleep...I just can't turn my brain off. I don't have to be worried about anything, I just can't stop thinking about anything and everything. What works well for me (but is a big no-no I'm told) is, watching television. I try to watch something bland but interesting enough to hold my attention so that I can stop thinking. Watching a bland show is a mindless activity so my brain can relax and shut down. I then get tired and fall asleep because my mind is foggy enough so that I can't concentrate on two things at once, so the TV lets me sleep. I use the timer on the TV set at about 60 minutes so it shuts off after I'm asleep. I much prefer this to taking yet another drug, especially since this is an on-going problem and I'm sure I'd be on the sleep meds forever. Before I started the "TV therapy" I would lie awake for hours on a regular basis. Now I give myself about 45 minutes and if I'm not able to fall asleep, the TV goes on.

I totally understand and sympathize with your problem. It's a nightmare (no pun intended). :(
 

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hello

just a thought meditation classes. Ive been meaning to get back to them. Its been over 2 years now since I last went but found them helpful also relaxation tapes.

Chatting to my friend she knows of a hypnotist who was treating a patient with Lupus. After a few sessions she was able to know when she was going to flare, so was able to take a week off work to rest up. so as not to get real poorly and end up having weeks off of work. Also helped her to relax more so as she was able to sleep better.

dixy
 

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Hi Tuffymason

Just a quick reply to say that I don't take Prednisone - as I don't have a Lupus diagnosis as yet - although things seem to be pointing in that direction. I was dxd with MS in the past, although this was then ruled out. Then in 1994 I was dxd with fibromyalgia and M.E. It seems that many of these diseases/syndromes are very closely linked and are often treated similarly too.

I would just add that about four years ago I had a sudden episode of anaphylactic shock following an infusion of Procaine (for fibromyalgia) and this was treated with Prednisolone via an I.V. I don't know if this drug is similar, but Within 30 minutes the worst was over and I was able to breathe without assistance. My GP gave me a prescription for this in tablet form - as a precaution in case I should ever have a recurrence.
 

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i to go through periods where i can go weeks even months not sleeping good at all, go bed wanting to sleep, light goes off and hey ho, wide awake, usually its when im aching nothing is comfy pillowsw mattress, and it not either of them, its me, hubby keeps saying cant keep changing mattress like we do,

im sure there are lots of ppl out there the same, i have read somewhere where lots of lupus paitents have probs with sleepless nights

Lin xx
 

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Just another that suffers with sleepless nights.:( I feel bad for all of us. It is very wearing.

Here is hoping we all get to sleep and stay asleep for a night..at least! :)


Sandy
 

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I agree that you need to chat with your Rheumy doctor and maybe another sleep study is needed, not sure.

Anti depressants did not help me with insomnia but anti anxiety drugs did. If I am having a tough time I take Lorazapram (spelling?) and it helps me a lot.

Good luck getting help with this. A good nights sleep is worth it's weight in gold.:wink2:
 
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