Sleep

[Ncr1980]

Does anyone else struggle to sleep? I'm so tired I fall asleep but wake up after two or three hours because my sinuses are so blocked. The only thing that helps is a shower. I'm taking 30mg of prednisone a day, and I've slept a bit better since I started taking it, but now I feel like it's getting worse again. I tried to taper to 25mg but my sinuses and the foot cramps/joint pain were too bad, so my doctor increased my dose again. It also seems worse after a busy day. I just want to sleep again.

[Rose]

Have you tried a humidifier in your room? Just thinking that if the shower helps maybe this will too. What about nasal fine mist salt spays? Do you have sinus crusting along with the blocked sinuses. Although my sinuses were bad on diagnosis they have really responded well to treatment and apart from a post nasal drip I really dont have problems with them. Sure others will have some more suggestions.

Rose

[Pete]

Some other things you may want to try include:

> Daily sinus rinses using a neti-pot and saline solution. You can get these items at a drug store. They're inexpensive.

> Eating a banana each day or drinking tonic (quinine) water will help with the cramping.

> Taking 1-3 mg of melatonin about an hour before bedtime will help you get to sleep easier. It's inexpensive and available over the counter. You may want to check with your doctor before taking it to avoid drug interactions or other side effects.

In general, slow pred tapers are a little easier on the body. You may want to consider dropping 5 mg every other week or every month down to 20. Then taper 2.5 mg a month down to 10. Final taper would be 1 mg per month until you're either off or have symptoms return. If your symptoms return, go back to the next higher dose and taper even more slowly.

I'm currently holding at 3 mg. I've been at this dose for 5 weeks, and my rheumy has told me to stay at this dosage for 3 more months before making any other medication changes.

Hope this info helps.

[gilders]

The cramps are very likely to be a side effect of the prednisone, so increasing the dose again will only make this worse.
The cramps get much easier once I drop below 10mg/day. But if your joint pain is due to Rheumatism then higher doses of prednisone should help. There's a lot of balancing acts with medication and Wegener's.

[annekat]

For the blocked sinuses, you could also try breathing over a bowl of steaming water with peppermint or other herb added and a towel over your head. This could be in addition to the hot shower, or in the middle of the night. When things were worse in my sinuses I would do this before nasal rinsing and it loosened things up so they could be flushed out. I also found it to be relaxing and calming.

The melatonin helps me at only .75mg, a fourth of a 3mg. pill. You can always experiment with the amount, and it may take more than that.

Pete mentioned a neti pot for sinus rinsing, but the NeilMed squeeze bottle also works very well. The company makes both and they are available all over, in drug stores and even large grocery stores. The neti pots they make are plastic; some people prefer the porcelain ones available at more specialty health or herbal shops, and I'm sure, online. The solution for nasal rinsing may be made of roughly half and half baking soda and uniodized salt, or you can use the packets that come with the rinse kits. There are varying opinions on the percentage of salt and baking soda, and people have been known to use just the salt. The baking soda acts as a buffer, making it less harsh.

[vdub]

30mg pred gets you pretty wired up. You might want to ask for some ambien in the short-run. For the long-run, you might want to ask for a CPAP.

I was put on a CPAP shortly after all the sinus damage and it is the only thing that keeps my sinuses clear all night.

[Donna-from-Philly]

I use a sinus rinse with antibiotic ointment dissolved in it. I Keep the room cool and raise my mattress by putting a rolled up blanket under the mattress.
Try taking the prednisone around 7am so it will give you more of a chance to sleep. When I was having a lot of problems I slept in our recliner.

[Jayne 14]

I find if I smear Vaseline in & around my nose it helps to lubricate it
And rinsing my nose before this
The prednisone is a hard thing to sleep on but helps in other ways : go easy on reduction :


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[chris.wg]

I use the sinus rinse and my ent has me on a steroid dissolve in it. I have a bigger bottle and a little bottle he gave me you mix the saline take part of the mixture into the little bottle rinse. About half an hour later mix the steroid into the little bottle and rinse. Seems to be working really well for me. And while this should go without saying I have not yet read it on the forum when sinus rinse comes up so I want to stress. My GP both the rheumatologists I have seen and both ENT's I have seen stress use distilled water for the rinse not tap. I have known someone rinsing for a different reason who boils tap but it seems pointless for the cheap amount distilled water is. We have enough issues with sinuses don't want to be putting something else up there with a rinse of tap water.

[Alias]

I use the sinus rinse and my ent has me on a steroid dissolve in it. I have a bigger bottle and a little bottle he gave me you mix the saline take part of the mixture into the little bottle rinse. About half an hour later mix the steroid into the little bottle and rinse. Seems to be working really well for me. And while this should go without saying I have not yet read it on the forum when sinus rinse comes up so I want to stress. My GP both the rheumatologists I have seen and both ENT's I have seen stress use distilled water for the rinse not tap. I have known someone rinsing for a different reason who boils tap but it seems pointless for the cheap amount distilled water is. We have enough issues with sinuses don't want to be putting something else up there with a rinse of tap water.

I have no active inflammation in my nose but the damage done still causes me sleep problems. Combined with the prednisone, it makes for a lot of sleepless nights. I sometimes use Ambien, but if I wake feeling like I am suffocating that is not really much help; I'm just awake and struggling with grogginess! Being upright for a while seems to help, or moving from bed to the recliner. Rinsing is a big help, and I find it is best to do it closer to bedtime rather than early in the day... or do both. I am using that steroid you mentioned, as well as Bactroban dissolved in the rinse.

In another thread about rinsing I was kind of surprised to see that some are rinsing with untreated tap water. Like you, Chris, my doc, a top rhinologist (sub-specialty of ENT), stressed the importance of sanitization of the bottle and using distilled water. She said that not doing this properly could introduce new pathogens to your nose... the last thing you need in an immune suppressed state. A cool mist humidifier is also helpful, but she also emphasized the importance of cleaning it frequently and changing filters to avoid having nasty things circulating in your bedroom.

Back to the OP's question, yes sleep is a challenge for a lot of us I think. Balancing the medications with good "sleep hygiene" habits and compensating for anatomical damage is the goal, but I can't claim very consistent success.

[chris.wg]

Well hopefully you will get it figured out. There are days I just can't sleep either so I understand.

[miracleshappen08]

Yup the sleep thing has been a tiring subnet for me. Lol As of right now, it's 2:38 in the morning and I have been up for an hour already. But you are right, you wake you in the morning feeling tiered. And then you have more problems when you have a busy day. I have found that if I don't sleep well at night then I have more WG problems for the next couple of days. Why? Cuz our bodies need sleep!!!! So if you need to ask your doctor about taking something for sleep do it!!