Am I stupid or what?? ;)

[lurkernomore]

A while back I began to notice that the temazepam (generic Restoril) my rheumy has had me on for a few years now does not seem to work at all if I take it every night. As a matter of fact, if I take it more often than two to three times a week, it seems rather useless.

My lifelong fight to get any sleep whatsoever is beyond out of control. I have spoken to my rheumy several times and the only other suggestion he made to me was something called Rozerem. I rejected it, thinking it was an antidepressant and without really researching it. I don't really need an antidepressant causing me weight gain and more health problems, such as the weight gain that comes with so many AD's.

Sooo, I thought I had found the perfect answer. I began taking an OTC med called Percogesic on the nights I was leaving off the temazepam and now I am in worse shape than ever with the Sjogren's. I should absolutely have my behind kicked and I am embarrassed to admit that I have made such a gigantic mess up. Why? I had pharmacology in nursing school. I worked in a pharmacy. And here I was, taking something with Diphenhydramine in it with Sjogren's!

My eyes are a gritty, painful mess, my mouth is so dry that my tongue is split open. I feel as if my lungs are even aching from the dryness. There is nothing on me that is not aching and feeling raw and damaged. And yet, here I sit, knowing that if the temazepam does not work tonight and I cannot take the Percogesic, I am going to face endless nights with no sleep whatsoever and I cannot stand the thoughts of going back to that!

I have tried Melatonin and it did not phase me. Calms Forte only helps calm me but it still does not help with the racing brain and RLS. I already take Klonopin so...that doesn't help me sleep. It just keeps me from being so panicky while I lie there, wide awake for weeks on end. Please help me decide what to do next! Does any take Rozerem and if so, does it work for you? I'd try Lunesta, but hear it leaves a gross taste in the mouth. I don't need that when my mouth is already icky from being so dried out.

I cannot see my rheumy again until my next appt. in December and I doubt he could call in another sleep med without seeing me. Does anyone have any suggestions or ideas for me? I feel so stupid that I have been taking the equivalent of Benadryl and it did not even register with me. No wonder my tachycardia is out of control and I'm as dry out as a raisin. I swear, if I ever had any intelligence at all, it is completely gone now. And I still need help or I can not sleep.

[Calli66]

No, you're not stupid---we all do this thing----making decisions to take anything, just to get some relief! But you've got yourself in quite a fix, sounds like. For the tongue--some women in my Sjogren's support group swear by this---they take a Vitamin E oil capsule, cut the end, and slather the oil on the tongue.

Sleep. Are you unable to sleep because of pain in addition to the RLS and "racing brain"? I only have the perspective of someone who has never used any sleep aides at all, but I have heard of many of them because my sister used all of them when she was so ill. I remember learning that some have the opposite effect of making a person even more agitated, rather than bringing on sleepiness. You really need some outside counseling about this--somebody to take the time to sort out what's going on with your sleep cycle.

I can't help but think that your poor brain is showing signs of med-induced overload/fatigue. Sounds like you'll have to go without these types of brain-affecting chemicals at least for a while, until the levels reduce. But again, it would be so helpful to have somebody guiding you through it so you don't have to struggle with analyzing what's going on. Can you take a couple weeks off from work---to allow time to stabilize? Then you'd be free to stay awake, doze off, feel awful, and suffer on your own terms, semi-privately.

Try some "environmental" aides, quiet time outdoors, watching plants, birds, clouds. Use eye masks for resting, turn off the TV, get some quiet music going, cook some beautiful, healthy food, breathe deeply. I know that what I just wrote probably sounds corny and unhelpful to you, but I just wanted to give the perspective of somebody who doesn't use any of the sleep aides.

I wish you could find somebody to help you through this----your best friend, maybe? I also think of the religious retreat centers. I have been to one or two---they are usually in a peaceful, rural setting with little cabins and just the basics. But you're not alone and can go be with other people whenever you want.

C

[Scottietottie]

Hi  Lurkernomore   

Stupid? No. Brain-fogged - possibly.

Have you ever tried any kind of meditation or self hypnosis? I haven't but I do know people who find it really useful. I know I gave up doing yoga because they always did a meditation at the end of it and I used to have to be woken up - snoring on my yoga mat and it got a tad embarrassing.

I don't find sleep easy either - but somehow I get enough. Once I am asleep I can sleep for hours but normal night sleep when the alarm goes off for work is usually late to bed and then intermittent.

The other obvious things are don't eat too near bedtime and don't drink stimulants.  In my case I also find foam earplugs helpful as otherwise I can't zizz off through hubby's snoring.

Take care - Scottie 

[lurkernomore]

I don't know why but the sleep evading me had been a lifelong problem. It must be inherited because my mother and my son are the same way. I never slept properly as a child and eventually was diagnosed with fibro. I strongly suspect that my mother has it as well, but she will likely never be dx'd, as she thinks it is a "garbage can dx." Umm, okay, so I'm faking it. Oh yes, she thinks Sjogren's is all in my head as well.

As for being in a chemically induced haze, very possibly. I don't even have time right now to go see a physician to sort anything out right now. There is so much family upheaval right now, I have a son getting married in about a month and I can't even find time to look for a dress for his wedding because I am the only one caregiver my mother has.

So as you can see, yes, I am desperate for sleep just to be able to what is expected of me for the next couple of months. I haven't tried yoga or alternative measures other than biofeedback and the hypnosis tapes. Nothing seems to work right now. My mind is scattered with everyone's needs that I don't seem to be able to find time for a single thought of my own. I will just have to muddle through somehow, eh?

[Pooh]

Aww Katie you are NOT stupid or whatever.  We all try to get sleep anyway we can and think nothing of what it takes to do it.  Before I was dx'd with Sjs, I had an old family doctor tell me to take Benadryl to sleep because I was allergic to every thing he gave me.  Yep, my doctor told me that.  So NO, you are not stupid. 

I hope all goes well for your son's wedding and taking care of your Mom.  I just bought a new game for my computer and I stay up playing it at night until I literally fall asleep playing.  Then I go to bed and go right to sleep.  I just wish I could sleep longer than 3 or 4 hours before waking up. 

Take care and don't be so hard yourself. 

Hugs, Pooh

[Sandra]

How difficult things have become for you. I have been reading allot about FM and the sleep patterns you describe are textbook. I posted a bit ago about Sjs vs FM....I have found a great website where a US Dr, professor and researcher is the formost expert on FM. The report I wrote about is amazing, it describes how I live to a T. I ask you how could something that describes how I live and deal everyday be "garbage can dx" when he has never met me or I him??? The report is worth reading and studying.  In fact it is the Clinical Case Definition for Practitioners by Dr I. Jon Russell, University of Texas, on the FM Canadian web. There are detailed guidlines regarding sleep including in depth discution re medications inluding clear side effects and there is also a comprehensice practical guidleine as well. Do you see a  psychologist? I see one as I was too unable to manage the pain, it has helped allot, I am not crazy I just hurt allot. I have regained so much confidence in my self again regarding my own health/body, confidence that had been stripped away appointment after appointment, year after year by physicians that were too busy, too illinformed or in the profession for completely the wrong reason. It all adds up especially when you are not getting anywhere, still hurt, still can't sleep. I know for a fact that Clonazepam is a drug that is highly addictive and as someone mentioned I too get a reverse affect when given sleeping pills. They always ramp up my brain so it just won't shut off. I think allot of your issue is the meds but be very careful just stopping anything you have been on over night, as symptoms could get worse. Actually a psychiatrist at this point is better for you to sort out the brain chemical problems. I think that's who I'd go to first if I were you. You are absolutely not stupid you are questioning and doing you best to listen to your inner voice amid the noise of pain and medication. That's not a stupid person at all. Keep listening, cut yourself a break, repeat to yourself that all is well and you will relax a bit maybe get a bit of rest and then be able to sort out what it is you have to do now, you have discvered something big by listening to your body that's a good thing.
Slow down, take care. Sandra

[Dolly Dimples]

  As Scottie has said, no not stupid- but probably brain fogged is what you are. Sorry that your so beat right now, and more sorry that I can't help in any way, but a couple of tips to add to the rest.. Have you tried Biotene Oral Balance for dry mouth, it is the best!  I also swear by pure pineapple juice to drink and also to swill around the mouth, it has enzymes in it that are good for the mouth , also a simple trick that might possibly induce sleep to come is to lay back but DONT close the eyes,  fight the resistance to close as long as it takes,  and keep off all stimulants,  you lose nothing by at least trying such simple tips, it has worked on others... Can't help any on any drug potions, but I do wish you well and prayers are with you. Good luck, Dolly.

[irish]

Katie, You are not stupid, but I think you are overstressed. You are trying to do the wedding thing and then have to care for your Mom. Seems like it is time for you to get some help. I know it is hard, but have you tried getting someone from the county to come and give you a break? At least you would be able to work in a doc appt and get a dress. Shopping for a Mother of groom or bride dress is the most stressful thing I have ever done. I swear that we put more miles on the car and so many of the dresses looked like they were made for a hooker!!!!

Now, the doctor issue. I know that you don't want to be on antidepressant etc but the suggestion to see a psychiatrist is a good one. It sounds like you could benefit from a sleep study to find out what is causing you to have such bad nights. I haven't slept well all my life and had 2 sleep studies and turns out I have some low oxygen or breathing issues during my dream sleep. Sooo, I just started the CPAP and will see if I get over my terrible fatigue.

There are meds that can be used to help with sleep. They may cause some dryness, but I doubt if they will be as bad as the benedryl. Burning the candle at both ends doesn't help you at all as you probably are in a sjogrens flare also. I hope and pray that you can get things sorted out so that you can enjoy the wedding. Let us know how things are going for you. Irish

[lesleyjoy]

Hi Katie...with all that's going on, it's understandable that you're not sleeping. It's a vicious circle, poor sleep...worry/anxiety/pain...less sleep...more anxiety...less sleep... depression...etc. Many people with autoimmune conditions find sleeping difficult because of over activity in that part of the brain responsible for sleep. Anxiety about not sleeping only makes it worse! Often with anxiety sleep is the first thing that 'goes out the window.' When it's dark and quiet at night and everyone's sleeping except you, the night is a lonely place  We are so conditioned that we need 8 hours sleep to survive, that's it's very hard to handle when we don't 

I had an experience of not sleeping 20 years ago. I was stressed, then I just couldn't sleep, the more I worried about it, the worse it became...I ended up with depression. Sleep or lack of it became an obsession. I didn't sleep naturally for 4 months. I tried all sorts of things...I got dependant on a 'diazepam type' medication. I realized after 3 weeks and came off that (bad rebound symptoms). Then I was put on an antidepressant that didn't work  I switched to a lower dose one Doxepin and it worked, but I still had trouble sleeping some nights.
Then I read somewhere that the worry about not sleeping, was actually worse than not sleeping! This helped me alot... I had to face my worse fear, that sometimes I just wasn't going to be able to sleep, so I began reading or doing something else during these hours. I found out that my neighbour had the same problem as well and that helped. Somewhere along the process, I began to relax and then when I was tired enough, I would sleep well for a few nights. During this time of my life, I often felt unwell but never knew I had autoimmune stuff going on!

When the dryness symptoms set in 2 years ago, I had a bad depression, but couldn't go on the tricyclic antidepressants in high doses because of their drying effect I couldn't take SSRI's/SNSI's or any of the newer type AD's (they just make my system so agitated and hyped). I ended up going back onto a very low dose tricyclic AD, Doxepin 10mgs which is similar to Amitryptiline, but more sleep inducing. It's also good for certain types of pain. These are non addictive and in low doses don't act as an appetite stimulant.
I know things will improve for you as they did for me. I know it's hard not to worry about sleep but you will get through this. Please let us know how you get on.

Take care Lesley (NZ)

[SeaBreeze]

Hi...
I'm sorry you can't sleep. I can really relate... I have some mental health issues and I take seroquel it works for me, and psychiatrist says its not as addictive as benzodiazepines (klonopin,ativan,etc). We'll see... the jury is still out on that one...
From my own personal experience my doseof Klonopin increased over time as I became more dependent.  I needed more and more for same effect and when I was not taking 'enough' I had some major withdrawal-like' symptoms, such as racing mind, sleeplessness, anxiety, shaky, hand tremors... I couldn't imagine it was 'withdrawal' from a drug I was still taking...it just didn't make sense... but that's what it was........
I'm sure you know from working in the field, that benzo's are one of the most difficult to withdraw from ... I had to titrate my dose down very very slowly over many months ... Sorry...way to much info, but it was such a tough road... I do worry about the seroquel as that is very potent too, but I can't (none of us can) function, stay physically and mentally stable without sleep... You've had a lot of great responses here, I hope you find something that works soon...

[beverley]

Katie, it must be awful to be so sleep deprived.  I have poor sleep patterns, exarcebated by an irritible bladder wall which means I am up and down to the loo every 5 minutes if I don't sleep.  It is really difficult to not get worked up and worried ... in fact going to bed becomes a bit of a challenge and you get so you dread the whole 'trying to go to sleep' process.  I have used a breathing and meditation exercise to help calm me down.  Basically you breathe in to the count of one and out to the count of one, then repeat but to the count of two and then the count of three and so on.  It takes a lot of concentration particularly when you get you get to the higher numbers (you go up to 10 and then start to count down) as you have to really control how quickly you fill your lungs or you end up holding your breath, which is not the idea at all.

You've probably tried this already and it is not a cure all, but it does help, particularly if you make yourself start again if you get distracted because you get so fed up with going back to the start that you make yourself focus your mind.

Hope you get your meds sorted soon.
Beverley

[lurkernomore]

Wow Seabreeze, that is terrible that you had to keep increasing the dosage on your Klonopin to get the same results. I have been on the same dosage now for close to twenty years and have never needed to do that. But I am taking it for tremors and I guess it depends on what it is that you are needing it for. I am thankful not to have ever experienced a withdrawal as I have heard they are terrible!

I did get at least three hours of sleep last night, yay! I think I literally prayed myself to sleep, if you can believe that! I just spent the evening in my pajamas, lying on the couch and sort of making it a point to decompress. I didn't think about sleeping or not sleeping. About 1 a.m. I laid down on the couch and just drifted off into a really nice sleep. I had to get up and go potty once and looked at the clock and it was only 3:15. Instead of getting upset, I just thought "oh well, at least I got a couple of hours of sleep in."

Somewhere between there and 5 a.m. I dozed off again because I didn't hear hubby walk through and go out the door at 5:30. So I may have actually gotten four hours of sleep. How 'bout that? Pretty good, huh? I'm not feeling too badly today so I am actually going to shower, dress and go buy groceries.

And to all who may be reading this, I want to thank you all for being so supportive. It is a terrible thing to be awake, sometimes for days on end. Especially when so many are depending on you. I told hubby that sometimes I feel as if people don't stop leaning on me so hard, I may just topple over. But sleep is an amazing thing. I think I may just be trying too hard and working myself up, setting myself up to dread it, so it never comes. I really think it may just be a matter of retraining my mind. Thank you for all your ideas and suggestions. I promise to keep you updated on my "quest for rest."

[lurkernomore]

Hi Beverly. Your method is very similar to one I have tried in the past. I would lie down and count backwards from one hundred. I think I got the idea from some medical show on television where they were putting someone to sleep, LOL! Some nights I would get down to one and start over again five or six times. But the good thing about it is, when one is counting, they aren't able to allow the worries and dreads come in, so it does work...eventually.

I did get three or four hours of sleep last night, so I am feeling much better equipped to handle things today. I think that it's possible I may just need to change the entire way I think of sleep. It use to be something I dreaded to think about, because it was such a chore, just to get there, Kind of like a job I hated to go to.

I think that maybe if I can just change my mindset about it, it may come to me easier. I am trying, I really am. I'm just going to keep telling myself that sleep will come eventually and leave it at that. I'll keep you updated over the next few days. Thanks so much for being so supportive.