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BARON
12-05-2009, 03:26 PM
D not been good up all night with sickness and I'm not that good been a male week stomach could join in at any time. I see other people are also up at this unreal hour' think the chemo drugs are starting to kick in i don't like to say it to her but hair is starting to go. dogs no happy they know when things are not wright they just want settle down. hope she can sleep a bit now good night to all the night owls

Sangye
12-06-2009, 05:34 AM
Oh, the late nights.... Most people don't lose all their hair with cytoxan-- it just gets thin. It'll grow back once she's off it, but it might be curlier or a different texture. I hope tonight is better.

BARON
12-06-2009, 06:09 AM
Thanks for the support Sangye it might sound daft but it is reassuring to know you have friends how understand all these changes that are going on in aw ere lives the forum gives such support as with this disease been rare there is not a lot of hands on support apart from close Doctors I keep spreading the word i now think most of the people i work with now know of wag's is I've even put the paper work in the rest room to creat moore knolege of this desise thanks again Gray

Sangye
12-06-2009, 06:25 AM
There's nothing daft about it, Baron, understanding goes a long way! I remember when I first realized that just because my doctors could list the side effects of a drug, it didn't mean they understood what it was like to experience that side effect. I'd leave there feeling empty and not validated, even though they had said all the right words.

I was a very empathetic doctor before I got Wegs--I had experienced illness and injuries that many people don't. But when I get to practice again, my experiences will enable me to truly tell patients "I understand."

coffeelover
12-06-2009, 07:32 AM
I want you fro a doctor!

Baron-we all feel for you. sleepless nights are a given for me with the pred and especially the night after taking the MXT
coffeelover

Doug
12-06-2009, 07:35 AM
Whew! The old days, because there was nothing good:):eek: about them, and they got old!

elephant
12-06-2009, 11:05 AM
Not able to sleep, really is a bummer. I watched late night shows, reality shows, movies and news! When your on prednisone it is hard to concentrate it's like you have attention deficit disorder. :p

onatreetop
12-07-2009, 04:44 PM
You nailed it!!! ADD that's it!! Pred induced ADD. The forgetfulness is frustrating too. That is the hardest thing to deal with for me.:D

jola57
12-14-2009, 11:27 AM
Oh the late nights, I still get them some times. I do the same, watch movies, tv, go onto internet, read, some others knit, paint, play instruments (that one you may want to do if you live in a house). Forgetfulness, don't let us started, we all suffer one way or another. These days I realy must concentrate and take my meds at the same time every day, if I don't I just plain forget and dont take them.

Terri
12-14-2009, 11:57 AM
Ah yes.....:mad:the lack of sleep or too much sleep
Sometimes I have a hard time finding a happy medium:eek:

elephant
12-14-2009, 02:18 PM
If you nap too long then you can't sleep at night, it's a vicious cycle!:)

onatreetop
12-16-2009, 12:06 AM
I have been getting knee pain while sleeping. It is the strangest thing. But when I hit the bed I am out like a light. I am usually very tired by the time I make it to bed. 6-8 hours seems to be perfect for me unless I wakeup with the hammer driven wedge in my knee pain crying. Then I run for the ice pack and pain meds.
The doc wants a sleep study done too. Could be interesting?

Terri
12-16-2009, 01:37 AM
onatreetop do you sleep with your feet elevated?
IVE BEEN SLEEPING THAT WAY FOR SO LONG IT IS UNCOMFORTABLE FOR ME TO SLEEP ANY OTHER WAY.
It seems to help me. Hope you can find some sort of remedy.:)

elephant
12-16-2009, 01:57 AM
Onatreetop, why does the doctor want to do a sleep study? Hopefully your knee pain will go away. I think once your in remission it should subside. Last summer both the back of my knees were swollen and painful and I put ice packs on them. :)

Jack
12-16-2009, 03:10 AM
I was wondering about that too. In what way will you gain benefit from a sleep study?

Sangye
12-16-2009, 09:39 AM
My Wegs doc has wanted me to do a sleep study for a year now. I tried one a couple years ago at a terrible facility in Arizona...

One cause of fatigue is sleep apnea. Sleep apnea is more prevalent in heavier (okay, fat) people and in people with upper respiratory problems. He wants to rule that out as a cause of my excessive daytime fatigue.

Jack
12-16-2009, 06:47 PM
Well, I already know that I wake up every hour or so, so it would be wasted on me. ;)

timbo vic aust
12-16-2009, 09:31 PM
thats the thing thats getting too me at the moment as well, i go to bed on average 10.30 - 11.00pm and toss and turn till 1 or 2 in the morning then the alarm goes off for work at 6.45 and i feel like i have'nt even slept some mornings i get the nods at work by 10 or 11 am . then i finish at 5pm and by 6pm i am nodding in the chair before dinner any tips on a good night sleep would be appreciated. i have been trying to take every wednesday off to break the week up a bit and rest but i dont feel any different between having a day off or not. i find i hit a wall about 1-2pm most days but thats when it is busiest at work and that gets me through it im lost at the moment still have the bad legs too professor has put me on mobic anti inflammatories which have got rid of the fluid on the knees and the swelling has gone down but the more the day goes on the more i get around like a litttle old man and i keep off them as much as i can. :)

elephant
12-16-2009, 10:28 PM
Tim, if your on high dose of Prednisone it is very hard to fall asleep and stay asleep. I finally slept when my Prednisone was down to 10mg.
I just stayed up late, that way I wasn't tossing and turning. I totally understand you have to go to work and you want to go to bed at a certain time. It's too bad that you can't take a cat nap under your desk. :D

onatreetop
12-16-2009, 11:10 PM
I think it was because of the heaviness in my chest while breathing?That and all the noises I have been making while sleeping. If I snore it usually wakes me up. But I am also a side sleeper with body pillow for back hips and knees. Cant sleep without it. My husbands been sleeping on the couch for a while now because of all the noise. At first my feelings were hurt but after I told him that I have been able to trainmyself to go to and stayasleep when he brakes out the chainsaw(snore really loud you can hear thoughout the whole house) he couldnt say anything else. For 16 years I have handled it without much complaining, I still have the face pain that goes from my nose done the back of my throat. Dull and annoying. swollen hands, face, the pred look! I have been making my self sweat to release some of the fluid last night when I finally got home my face.....................felt like it was going to pop! So got on the eliptical for 25 min at a slow pace , just enough to sweat and out it came. Then got a shower and feel asleep fast. I do toss a bit but usually I am so tired that I dont wake often and thanks to the elavil I sleep deeper quicker and longer. It has saved my sleep for years now.I cant sleep flat on my back because of my knees and hips and back. Need the side to line up the spine and coushion the knees.

Sangye
12-17-2009, 11:57 AM
Jack, you could still have sleep apnea with that type of sleep.

Sleep apnea - MayoClinic.com (http://www.mayoclinic.com/health/sleep-apnea/DS00148)

Jack
12-17-2009, 06:19 PM
Sangye, you may well be right, but I just can't take on board any more problems at the moment. I'm getting on top of the lung infection now, but I think I underestimated it and left things a bit too long. The antibiotics are having a big effect for the good, but I had a bit of a rough day yesterday. Hoping for better today.

Have not admitted it to anyone else, not even myself, but I now have a slight ache in my lower right leg that feels quite a bit like a thrombo. :(

timbo vic aust
12-17-2009, 07:06 PM
not good to hear your not the best Jack keep your chin up and get well soon and look after number one . regards Tim:)

Jack
12-17-2009, 10:33 PM
Oh damn! :(

I've just put some of my symptoms together - ache in the leg, pain in the lung and up into the shoulder - and it sounds like thrombo trouble to me.

Last time, I ended up on a tiny dose of warfarin (2mg) because my blood is already quite thin, but even this was enough to give me big problems with bleeding. I don't want to go there again and I can't face any more hospital visits at the moment. It's too much for me so I'm taking the denial route!

My lungs and shoulder are good today. The ache in my leg is nothing like as bad as the last time when I had DVT. I'm feeling relatively well in myself so unless anything gets worse, I'm taking no action.

Yes, I know all the potential consequences and I promise to act if things change, but for the time being that's my decision. Hope I don't regret it.

elephant
12-17-2009, 10:50 PM
Jack, get well soon sorry to hear more aches/pain. Hang in there, here to listen.:)

onatreetop
12-17-2009, 11:34 PM
Sorry Jack. That stinks. I hope you are feel much better soon. Pain isn't fun. Hope you can rest and feel better quickly! :)

Doug
12-18-2009, 04:51 AM
Jack- You know what you have to do. Please don't give a bad impression that the deniers will take as a sign to continue to deny they need help. You have just earned 10 angry faces! :mad::mad::mad::mad:plus 6

BARON
12-18-2009, 06:13 AM
Sorry to here your not good take care and please see your doctor D dose the same tries not bother them with every thing but the sooner you go the sooner they will sort you i know what your thinking don't want to be in hospital for Xmas bet I'm wright and all the added worry will do you no good either

Sangye
12-18-2009, 09:58 AM
JACK! No, no, no... that is a bad denial. I've had tons of leg and lung clots and no one knows how I survived it. All it takes is one tiny clot to go to your heart, or for a larger piece to go to your lungs, or for any clot to go to your brain. That is a ridiculous gamble!

Please get to the hospital right away and have it properly evaluated. Wegs is one thing, a stroke is another. I've lived on blood thinners for 3.5 yrs and do just fine. I'll be on them for life. It's not the worst thing in the world. Easy to manage. Easier than damage from a stroke, for example.

BTW, you can wait for things to change, but that's not how emboli work. I had NO clue my leg clots were traveling to my lungs until I was at death's door. We didn't even know my legs were packed with clots.

Jack
12-18-2009, 06:29 PM
Yes, I know you are right. I just needed some time to get my head around handling another problem. I'll go to the hospital today. :(

elephant
12-18-2009, 11:09 PM
Jack I knew you come around. Keep us posted!:)

Sangye
12-19-2009, 01:57 AM
WHEW!!! I was wondering how I was gonna afford a plane ticket to England so I could drag you there myself. ;)

I hope it goes well.

BARON
12-19-2009, 06:03 AM
Hi sangye he just needed that push that what makes this forum so good it helps so much to here there is someone who cares and understand someone said to D to day doesn't it get you down some times and D replayed yes but there are people wears off then me that what i call brave she is always thinking of others

Sangye
12-19-2009, 08:50 AM
That helps me, too. It's easy to get stuck in our own stuff when we forget how many have it much worse.

Blood clots did a lot of permanent damage to me. I feel especially obligated to make sure others don't ignore them!

DuaneHart
12-19-2009, 06:20 PM
Jack, you could still have sleep apnea with that type of sleep.

Sleep apnea - MayoClinic.com (http://www.mayoclinic.com/health/sleep-apnea/DS00148)
I have sleep apnea and have used a CPAP for about 5 years now and it was the best thing that I've ever done. I would fall asleep at work at my desk, watching tv, reading, etc, etc, etc. After getting the CPAP machine that all stopped. Now that I have got the weight gain from the prednisone I had to have the pressure increased on the machine and am now sleeping much, much better. I had the sleep study done at Mayo in Rochester and was very happy with the results.

Sangye
12-20-2009, 05:18 AM
Duane, can you describe what the CPAP machine is like? Noisy? Big?

DuaneHart
12-20-2009, 01:36 PM
Duane, can you describe what the CPAP machine is like? Noisy? Big?
I have a ResMed CPAP. It fits on my bedside table and is maybe 8" by 10". though they do make smaller ones. It is very, very quiet--you can't hardly hear it run. It has a small resevoir that you put distilled water in to supply humidity so your nose doesn't dry out. The sleep study showed that I would stop breathing 80-90 times during the night which would cause me to not get into the deep sleep that you need. That is why I would be tired all the time and have headaches, etc. Like I said, the CPAP works wonders! Also, sleep apnea causes alot of strain on your heart which is something I did not know. I am a very firm believer in my CPAP and will not go to sleep with out it!

Sangye
12-20-2009, 02:52 PM
How long did it take to get used to wearing the big headgear thing? Does it go in your mouth or your nose?

Sangye
12-20-2009, 03:03 PM
I'm asking all this because ever since I gained all the pred weight I snore. I wake myself up with it, and even wake myself up in a startle pretty often. And daytime fatigue is a huge problem for me. I suspect I may have some sleep apnea.

My Wegs doc wants me to do a sleep study at JHU. I did a horrible one a couple years ago in AZ. They kept me up way too late hooking up equipment, and had no idea how to measure my oxygen levels in my nose because I was on oxygen. They shoved both the oxygen nasal cannulas and the measuring nasal cannulas in my nostrils and expected me to sleep! I was so weak and sick at the time. Couldn't fall asleep and sleep aid drugs don't work for me. They unplugged everything and I left early in the morning, having had no sleep at all! I was sick for days.

My Wegs doc assures me JHU has an excellent center. They're 2 hrs away and I'd have to find someone to take care of my animals overnight. Not an easy task! But I'm starting to consider doing it, if it might get me stronger sooner.

jola57
12-20-2009, 06:00 PM
Sangye, I snore like an rough engine and no longer sleep with my hubby of 25 years to keep both of us sane. During the vacation we didn't have to think about him getting a full night's rest so it was OK. I often wondered if the snoring makes me tired during the day but with all the meds its hard to say. Now that I have this blessed cold/flu my throat hurts more because of the snoring. I too wander if getting sleep tested might be a good idea.

andrew
12-20-2009, 06:17 PM
Hey Jack, how did you go? Hope you're doing ok mate! Don't make me come over there! ;)

timbo vic aust
12-20-2009, 07:42 PM
:) thinking of you too mate hang in there and be strong .:)

elephant
12-21-2009, 12:28 AM
I was thinking the same thing. Hope all is well Jack. :)

DuaneHart
12-21-2009, 01:03 AM
Sagnye, it didn't take long at all to get used to it. There are many different kinds of headgears. I started with a mask that covered my nose with this plastic apparatus that was connected to the headgear and was terribly uncomfortable. Now I just have this head gear that you hardly notice wearing and use what are called nasal pillows that are simply cushions that fit over your nostrils. I can lie on my back, sides or stomach and have no problems. If you go to resmed.com thee are pictures of different types. I'm sure JHU will have different for you to try also. Like I said, I have a ResMed CPAP and use Swift Nasal Pillows. I very much recommend you have the sleep study done. If you are stopping breathing and wake yourself up snoring it is not good. Your brain is not getting oygen when this happens--had I not done this I would probably not be here to tell you about it. I don't mean to scare you but sleep apnea is very, very serious condition! My son, brother-in-law, brother and mother-in-law all now have CPAP and are all grateful that I pressed for them to have a sleep study done. They all agree that they feel sooo much better, more rested and more energy. Keep me posted!

DuaneHart
12-21-2009, 01:06 AM
One more note about the sleep study. I also thought that I was up all night with them wiring me up and things, but that is how they get all the measurements for your brain activity, oxygen levels, etc. Kind of a bother, but is necessary to do.

Jack
12-23-2009, 10:12 PM
Went to the hospital on Friday and they would not let me come home. :(

I had a scan, X ray and all the usual tests and it seems that I have pluracy in my left lung that was causing the pain and a clot on the right lung causing the shortness of breath. I managed to get let out last night after a lot of discussion amongst the various specialists and I'm now on a home care scheme with visits from an anti-coagulation nurse.

Looks like I'm on warfarin for good now.

elephant
12-23-2009, 11:33 PM
Wow what a combo. Glad your home to celebrate Christmas with your family. Sorry you have to be on warfarin for life, but it will save your life.:D

Sangye
12-24-2009, 02:18 AM
I figured they kidnapped you and held you in the hospital, Jack. I'm sorry it turned out to be a clot AND pleurisy.

I have 3 suggestions for you :
1) Get a hematologist to monitor this aspect of your care. A regular PCP can manage it for a non-Weggie, but it can be trickier for us.

2) Ask for a home testing monitor. You can test your INR weekly with a finger stick, like a blood glucose meter. Without that the usual method of monitoring is via weekly/every few days blood draws until you're at a stable level, then once a month. This is very hard on your veins and quite dangerous. INR levels can fluctuate dangerously high (risk of hemorrhage) to dangerously low (risk of clots) within a month and you'd never know it. The home testers have greatly lowered injuries.

3) Your hematologist should have you eat your regular diet (ie as much vitamin K foods and supplements as you want) and adjust the warfarin to you. NOT the other way around, which is how they've traditionally done things--limiting vitamin K foods just to maintain the INR.

I see the Chief of Hematology at JHU. Before him, I had PCPs monitoring. My veins are terrible. They had me terrified to eat broccoli (or had to eat the same amount every single day). I had a lot of trouble stabilizing my INR and got new clots. They never mentioned home testers.

I had so much trouble with warfarin because of that, that I stayed on the Lovenox (heparin) injections for 2.5 yrs. WAY too long. Painful and dangerous shots. My JHU hematologist was really upset at that. He said the monitors are just as accurate as vein draws. We've proved it, actually.

Now it's a total piece of cake. I don't change a single thing about my diet. When you have a home tester, you can see if you're starting to move too high or low. My hematologist taught me how to adjust my warfarin a bit if that happens. VERY easy.

I know you might feel like this is just one more dang thing to worry about, but I can't tell you how nothing it is. I take the pills (no side effects) and forget about it. Really.

Jack
12-24-2009, 02:45 AM
Thanks for all the advice Sangye. :)

I've already been through this once with the DVT I had earlier in the year so I'm happy with the anti-coagulation unit they run here. It seems to have a good reputation with the other departments too and was one reason why they they let me out. Standard hospital practice is to detain you until its all sorted!

They have already taken on board my previous experience and started me on half the usual levels of warfarin. The heparin only continues until they can see the warfarin taking effect.

They are quite happy for me to eat whatever I like, but must tell them if I make any significant changes to my diet or drugs.

I might look into the home testing kit, but I don't want to get obsessive about this and last time, my test results remained pretty stable after a month or two of adjustment.

All advice gretfully received. :)

jola57
12-27-2009, 10:05 PM
Get better Jack. That's quite a combo of drugs.

Sangye
12-28-2009, 01:29 AM
Jolanta, that's the typical protocol when they start you on warfarin. It takes several days for warfarin to start working fully, so they have to "cover" you with injectible heparin meanwhile. They measure the INR (blood clotting) daily, so as not to go out of range.

coffeelover
12-28-2009, 06:27 AM
Thinking of you Jack! Wishing you success

timbo vic aust
12-28-2009, 05:37 PM
hi all i did'nt have a good chrissy at all iv'e been crook only just back on board now and good to see jack is doing ok i thought the same as sangye that they kept him in hospital when we did'nt hear anything for a couple of days . glad all is on the mend now jack , and sangye you are a wealth of knowledge you certainly know your stuff not only from personal experience but from being in the medical field as well im guessing. ah back to work tomorrow as well :(

Jack
12-28-2009, 08:13 PM
Sorry to hear you've not been well timbo. Hope you are on the mend now. :)

Thanks for your thoughts on my own health, I'm not feeling too bad now and I'm on home vistits until the end of the week so I don't have to go out or do much for now. Blood results are starting to come good. If I hadn't broken a rib yesterday, I'd be feeling great!

timbo vic aust
12-28-2009, 10:30 PM
thanks jack . Oh crap a broken rib as well thats all you need with the pluracy + clot in lung as well , you would be trying very hard not to cough i bet oh i feel that pain without even trying ouch. I have been feeling weird lately i have put on 9kgs since starting the pred which normally would'nt bother me too much , beforehand i was 5'11" and 78 kgs which was perfect for my build + weight now im 87kgs which is borderline for my perfect weight which still dose'nt bother me the only problem is i have pretty much just put it on in the stomach which is very hard all the time and uncomfortable i have gone up 2 trouser sizes as well from an 87 to a 97, and the last two weeks i have been feeling nausea on and off and certain days i can move my bowels up to 4 times in a day and the site or smell of oil cooked foods turns me off as well eg; bacon sausages
and getting a lot of heartburn lately as well which is affecting when + what i eat as well the oversize tummy is that uncomfortable it is a struggle to bend over to tie up my shoes . i dont know if this is a normal part of it all or not but i dont see my rheaumy again till 18/01/2010 which seems a life time away when i only saw him two and a half weeks ago . maybe i should see my normal gp to see if there is maybe something else going on . :)

elephant
12-29-2009, 12:31 AM
How is your kidneys doing? You might want the doctor to do some labs on your kidney function. Rapid weight gain, nausea, heart burn, tired reminds me of something going on in the kidney. Does your skin itch? Rapid heart beat? Sometimes some of the medicines were on can mimick these symptoms. I would check it out very soon.

Jack
12-29-2009, 01:09 AM
As above - get your kidney function checked out if there is any sign that you are retaining water, ankle swelling etc.
As far as stomach problems - you should be taking something to protect it with the medication you are on. Ordinary anti acids are no good, you need something like Lansoprazole. I can't manage without it!

Sangye
12-29-2009, 03:12 AM
Jack-- a broken rib??!! I'm so sorry. What a way to end the year.

Timbo-- I agree with Jack and Elephant that you should get your kidney function checked this week. And Jack is right about the acid-blocker with pred. It's a must--not just for comfort, but you can cause gastric bleeding by being on pred "unprotected." Any doc should know that.

Assuming your kidneys are fine, your symptoms are normal responses to pred. It makes you gain weight rapidly in the abdomen, neck/chin, upper arms, and shoulders. No way around it, just try the best you can to limit excess calories. I never had a fat abdomen before, and now it interferes with bending over, tying shoes, etc.... :(

timbo vic aust
12-29-2009, 10:38 PM
Thank you all for your advice should i go to my gp -family doctor because my rheaumy is'nt back till the 18th jan, or the other option would be to go through the emergency department but the wait o.m.g. Dont want to do that unless i really have to but my wee is very dark yellow all the time the last time i saw him he did another wee test but dont get those results till the 18/1 and the test they did early december showed blood in wee thats why he said we will have to keep an eye on it. I will ask my doc about the medicine for the tummy to settle that down as well jack thanks again all :)

elephant
12-29-2009, 10:46 PM
You really need to go now. Have a urinalysis done to see if there is blood. If there is blood then your kidney function is not working properly. Need to have lab work to see if your creatine is up. You don't want to get worse, then more complications. I have been there many times, I know ( kidney transplant).

Sangye
12-30-2009, 01:07 AM
Urine changes? Yup, Elephant is right-- GO NOW. I don't have kidney involvement but have learned from those who do that you can have extensive kidney damage and only have a few symptoms.