Sarcoiod and sleeplessness

Have any of you been troubled with sleeplessness during your battle with sarcoid?

I just had my spleen removed and was diagnosed with sarcoid in Sept 08. Since they though I had lymphoma or melanoma of the spleen initially, I'm happy for this change in direction. My first run in with sarcoid was back in May 2006 with the exact same concerns for the lymph nodes around my lungs.

I've had random, unexplained symptoms all my life since childhood. This diagnosis helps to connect all the dots and gives me a tangible beast to battle. Beside the pain causing the loss of activities I love (running, hiking, cycling, gym ratting, travel, etc.), I've become a chronic (what my husband calls) "night stalker" in the last 8 months, though I've always been a terrible sleeper.

I know dealing with my discomfort and pain which makes sleep more illusive. But being wide awake in the wee hours of the night has becoming the norm...and I'm so tired all the time.

Feel free to share your lack-of-sleep-and-fatigue woes and remedies.

Good health to us all.
Linda

By priscurl
Posted September 24, 2008 at 6:52 am

Hi LODonnell

I was diagnosed with sarc in 1999. I spent four years being treated by an immunologist for a sero-negative inflammatory disease. I gradually worsened under her care. She put me on ibuprofen and a cup of tea, then on Celebrex. This helped marginally, but i continued to deteriorate. I used to feel so ill some nights by bed time I was afraid of falling asleep. I thought that I wouldn't wake up in the morning. About two weeks prior to a diagnosis I worked out for myself by a process of elimination from symptoms and test results, I woke up gasping for breath in the middle of the night. My first thought was adult onset asthma. I went to my local GP, who told me (don't you love doctors) that I had had a nightmare. Two weeks later I was back there asking him to do a chest x-ray and ACE test. Bingo - Sarcoid.
After I was diagnosed, I slept a whole lot better. I had another scare late 2006 when I got irrefutable proof the beast hadn't disappeared. It lasted a couple of nights, but then I went back to sleeping like a baby. I figured, your gonna die one day, what is the point of worrying about it the rest of your life. It took me a while to come to terms with that.
Pris

By grpearson07
Posted September 24, 2008 at 10:20 am

I was diagnosed a couple of months ago but don't respond a problem with sleeplessness. I am on prednisone and this is what keeps me up. I either cannot go to sleep or up every hours running to restroom so I never get a goodnight sleep. Last night I took some simply sleep medication (recommended by pharmacist), it worked well. I did however intentionally forgot to take my prednisone just so that I could sleep. I did wake up in excruciating pain in knees and ankles. I don't know if it was the missed dose or the spaghetti (inflammatory food) that I ate before going to bed. I usually do not have problem with pain.

By pippin
Posted September 24, 2008 at 11:17 am

I too have been bothered by sleeplessness. I would fall asleep for about an hour and wake up for two or three. Then back to bed for an hour or so and then up for a while. Since I don't work and live alone, it wasn't a real hardship.
I have eliminated coffee after my morning cup. I try not to take a nap after 3:00. (I taught school for years and I got so tired around 3:00-4:00) When I quit work I would take a nap anytime I got sleepy.
I try to stay up a little later. I also take tylenol pm and melatonin. Lately, I have been sleeping a little better. I do feel though that it is probably temporary and sleepliness is lurking around the corner.

By jgrover
Posted September 24, 2008 at 11:33 am

I gave in and take ambien. With it I sleep, without I wake up every two hours. I am under a doctor's care, so I guess I'll be taking it forever.

By Linda_Turtle
Posted September 24, 2008 at 11:58 am

Wow, guys. I'm so glad I'm not the only one. And let me clarify, it's not the diagnosis that is keeping me up. That has actually given me a sense of peace and calm.

I've been chasing a diagnosis since April and finally have an answer which has given me something to battle...and that's a good thing.

I've had unexplained insomnia on and off for years along with my other random symptoms. I read somewhere that sleeplessness is one of the symptoms.

I'm pleased to finally know I'm not crazy or making stuff up...that there is one central reason for all of my ailments. I felt like there was constantly something wrong with me, but each ailment differed greatly from the other. It was perplexing...until now.

Please keep me posted on your sleep situations and if any of you discover some fantastic, miraculous remedy. I'll do the same. Seems that pain meds and anxiety meds keep me down for only an hour or two...then it's wandering time.

Thank you all for welcoming me so warmly into this sarcoid community.

Best to each of you,
Linda

By nomoresmiling
Posted September 24, 2008 at 1:01 pm

hey linda,
Isn't the recommended daily dose of sleep 2 hours?????? LOL.
on prednisone since march (and i take it in the a.m.) have LOTSA of energy only from 10 p.m. on tried ambien- just laughed at that. (bathrooms spotless)...tried lunesta day five hahahahaha! (kitchen spotless, i love the smell of a mr. clean kitchen unfortunately had to give up the pine sol thats a good weeze) i gave my husband earplugs so i can run my h2o floor cleaner in the middle of the night... yes i pay for it in pains and mental fog. when i finally lay down at 4:30'ish but i'm up again at 6 all over again. woo hoo. computer gets a lot of use at night also. My best restorative sleep is in the whirlpool tub with candles (but just make sure someone else is home with you just to check in every now and then.)
when someone comes up with a miracle for this "no sleep" thingie they will make a fortune. i know the experts say do nothing that stimulates you before going to bed like lower the lights and other things but i can lay in bed in complete darkness and i swear "i see the light" (i must be a gizmo or a vampire, and yes halloween is my favorite holiday so i'm just a little early this year) I know if someone can actually bottle a FULL thanksgiving dinner i think that might be a perfect solution.........hahaha.
all kidding aside
I hope you feel better real soon. Happy thoughts and prayers are coming your way! eileen

By nomoresmiling
Posted September 24, 2008 at 1:06 pm

hi gr...... please don't forget to take prednisone..... ask you doc if you can take it all in the a.m.(i'm sure he will probably say yes) unfortunately sometimes the sleep still doesn't come but at least you won't be harming yourself by missed doses.... be well! eileen
we will all get through this bump in the road together.

By Texan-in-GA
Posted September 24, 2008 at 1:47 pm

I have been on prednisone for about 3 months now and have had problems sleeping every night. Have been taking 1/2 ambian pill every once in a while just to try and get caught up but it makes me a zombie the next day. Also have used tylenol pm (1 pill) which works as well. Dr said it was ok as long as I didn't do it every night....just when I was absolutely exhausted and needed the sleep. I get a ct scan on lungs this Thursday and hopefully things have cleared up enough to start lowering dose and get off this stuff.

By Sarasota
Posted September 25, 2008 at 9:35 am

Hi Linda! For a kick - check out the weird times on each reply. Most are after midnight!! Perhaps we should be called Sarc Zombies!!?? I am on NO MEDS and I didn't sleep for 9 months. I'd fall asleep at midnight and be up by 2am. Fall asleep about 5:30am and have to get up for work at 6:30am. I tried everything. So, I quit fighting it and slept when I could and got up and paced in the dark house, or out on the patio, and drove my cats crazy!! They were asleep! My husband still worries. Now, I'll sleep 2 or 3 nights and then be up the next 2 or 3 nights. At least, I'm not having the heart palpitations, night sweats, or strange dreams!! That's a plus!! I wish you the best and pray for us all! Sarasota

By Linda_Turtle
Posted September 25, 2008 at 10:02 am

Thanks for sharing, Sarasota. I feel better knowing I'm not the only Sarc Zombie pacing the floor boards every night. Prayers and blessings to you, too.

By Cloudnine
Posted September 25, 2008 at 12:33 pm

I have read numerous articles on good sleep hygiene. I have done all the suggestions they list. This has been an on going thing. I am not on prednisone. It started way before the diagnoses. I like take naps now. I don't sleep for any length of time. Instead of good sleep hygiene, I guess I am a dirty sleeper. I am a very tired dirty sleeper, I feel a nap time coming on now. Yes, I have tried not to nap and I just get really sick and sometimes collapse. So now they just tell me to sleep when I can. This has been going on for at least 16 years.

By bern17
Posted September 25, 2008 at 9:17 pm

Linda,
I have been having sleepless nights for years.Would wake up exactly at 3:17A.M. Was it the sarcoid, who knows . My remedy a sound spa with crashing ocean waves or thunderstorms and sometimes soundscapes on the music channel. Hope you find some relief.

By SarcoidPrincess
Posted September 25, 2008 at 11:40 pm

Hi Linda,
I have had sleeplessness but usually when I'm having a flare I get the sleepies instead. But I do take a sleep aid. I take Trazadone the designer name is Deseryl or it may be the other way around. Its actually an antidepressant but it will knock you out. I don't sleep without it. I literally don't sleep without it. I'm on prednisone too and have leveled off as far as the sleep thing goes there. I find I don't nap as long or as hard. It may be time to ask for something. I would hate being up in the middle of the night by myself. I would surf, watch tv or play games but after a while you get sick of it at least I did. I hope you can find a happy medium soon!

By NWtransplant
Posted September 26, 2008 at 12:38 am

No. 1: Should I be taking the prednisone at night? Based on, I think, a doctor's advice in April 2008, I've been taking the dosage in the morning. When I've forgotten and take the pills in mid to late afternoon, I have a significant problem sleeping.

No. 2: What is the name and breakdown between morning and night for those of you on antidepressants? I take Lamictal for depression and a mood stabler. The neur mentioned that it also addresses seizures and split my dosage between morning and night. So far that's gone well.

No. 3: Linda, what have you learned about the interactions of your drugs? So far I haven't found any in my checks on the internet. I carry an Excel doc listing all my current meds to each doctor's appointment. It reduces the need to mentally tick off my meds and allows the doctor to actually be able to read the list to examine the possibility of drug interactions.

Anna

By snappykappy
Posted September 27, 2008 at 6:39 am

i am about 1-2 hours sleep and then sometimes get more there is really no pattern to it all for me

and constantly going to use the bathroom which is pathetic

i am on oxygen 24/7 liquid type and i know i have to walk really slow or my eyeballs start to whirl around and get glassy and sorta fog up and i am huffing and puffing

so i have to set down on the edge of the bed before i slide back up to it

if i dont do it then i am huffing and puffing and ding my fred sanford impression (for those who remember sanford and son he was always calling lizabeth when he thought he was gonna have the big one)

so i just have to learn to walk real slow and take my time cause it wont get done any faster

i just say if u want it done faster then do it urself

By Krissy
Posted September 28, 2008 at 4:32 am

Insomnia IS a common problem with sarcoidosis sufferers. Prednisone also causes insomnia. During the 12 months that I was on Pred I had the best sleeps in years. I think sarc wins as the strongest cause of insomnia. My doctor did tell me to take pred early in the morning.
My common sleep history: Initially, although very tired, I have trouble falling asleep; after one hour I wake up because (I think) discomfort & pain in my limbs, hands & feet & left hip. It could also be because of fever, because I am always hot when I wake up. As soon as I wake the unpleasant tingling begins in my limbs, especially hands & feet; After around 30 to 60 minutes finally fall back to sleep - this pattern continues all night.

By Bunny
Posted September 29, 2008 at 3:14 am

I habitually stay up til 2a, 3a, 4a....!! thank god I work 3-11. I actually can sleep from 6-12 hrs at a time. sometimes I feel like if I don't lay down that I'll just fall down from extreme exhaustion. but I've always been a night owl and I love Halloween too!!! I can work more spells then!!LOL I think it's just a symptom of the sarc. I've been this way for years too. My husband just puts up with my "prowling" - bless him. Sometimes I think it's just needing the private time - just me reading or watching movies or whatever just me! oh well.take some Benedryl and go to bed. Beth

By Linda_Turtle
Posted September 29, 2008 at 9:47 am

Thanks to all for sharing. Your input and comments have been very helpful to validate.

I do sleep for the first two hours then wide awake to wander the house. I usually end up in the guest room where I can toss and turn freely without disturbing my husband. Often, this is activity time; reading my current book selection, playing tetris, solitaire, doing crosswords. This continues until I'm tired enough to not actually 'fall' asleep but rather pass out...usually around the 4:30 time slot.

And, I'm not on any meds yet. I'm going to see my first specialist November 3rd. I pray there are holistic options to the Pred.

Happy nap time everyone. :)
Linda

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