sleep issues

Post by **Polar Bear** » Wed Jul 20, 2011 4:37 am

I have an appointment tomorrow with nurse, Thursday, to have bloods take for ESR readings to see if I can reduce my steroid a furthern notch. Appointment with doc will be for after that result get back. - so possibly see doc next Monday.

OMG - I might have to make an appointment sooner. I can't think clearly at the moment as legs are all over the place as I text this post.

Right... I will go to the guest room as hubby has to get uip in a couple of hours and I don't want to disturn his sleep.

Post by **ViewsAskew** » Wed Jul 20, 2011 7:32 am

What a nightmare, PB. I hope you can see the doc when you stop in to see the nurse.

Betty/WV · Post by **Betty/WV** » Wed Jul 20, 2011 11:08 am

PB: I'm so sorry you are going through this, I totally understand. Have dealt with the same thing. Most horrible disease-----it is torture and that is not an exageration. Go to the ER maybe they will give you a strong opiate to get a little relief. I don't know if it would help you ( since we are all so different, but so much the same) but when I would feel like I was going to go crazy, I would run the tub full of hot water and sit in it. Sometimes it would relax my legs, not always.

Wish you some relief soon. Let us know how things are going.'

BETTY/WV

Post by **Polar Bear** » Wed Jul 20, 2011 12:39 pm

I am feeling much more sane today.

I had to check my posts to be sure of the time line cos last night is a bit foggy!!
Having taken 15mg Zopiclone on top of the Circadin 2mg, I slept 3 - 5 am.
When I awoke at 5am I was sleepy and disappointed that I hadn't slept longer on such a dose of sleeping aids.
However, my rls was going mad which is unusual at that time of the morning so I took a requip and a tramadol ( took me over my usual daily dose)

Back to bed around 5.30am legs still a bit twitchy and went to the guest room. I can recall thrashing around a bit but not for long (can't thrash about if in the shared bed). First I knew it was 10.30 am.

So that was about 5 hours plus the previous 2 hours. 7 hours is excellent and came about by me doing a test and taking 3 times what doc prescribed.

However I am pretty low on the energy factor. This is a chronic ongoing situation and I Don't know if fatigue is cos of sleep aids, or long term sleep loss, ..........or if my fatigue has another cause.

By the time I shower, do hair, make-up, etc. the energy reserve is rather depleted.

This is so unusual from the lady who used to paint a ceiling before going to work.

Betty: At present my biggest requirement is sleep. Although I mentioned that my rls was being difficult last night, this is not usual at that time of night. Youo mention ER. On occasion the waiting at local ER has been 12 hours !! But yes I do believe opiates would be good for me. Tramadol is at present part of my treatment and I can always take an extra Tramadol if desperate.

Betty/WV · Post by **Betty/WV** » Wed Jul 20, 2011 4:03 pm

PB: I probably mentioned it before, but I haven't been driving for several weeks because of being sleep deprived. (I assume it is from not getting enough sleep for years) and it finally caught up with me. I fell asleep driving 3 different times and the 3rd time scared the wits out of me. I could have been killed or killed someone else. So I'm not driving, I hope some of these doctors can help me and I can drive again. We're working on it.

I'm glad you finally got some rest.

Take care.

BETTY/WV

Post by **Polar Bear** » Wed Jul 20, 2011 6:19 pm

My lovely husband says... enough!!!! .... back to the GP..... now!!
when I phoned the surgery, doc is on hols and I made an appointment for his return in two weeks..
LH says...... not good enough.... get back on the phone and see that lady doc that you like.... maybe she will help for the two weeks till regular GP gets back. (I like it when he's masterful :wink:

)

Lady doc belongs to the practice, she is just not my usual doc but is really nice.

And I see her tomorrow afternoon - along with my sleep diary.

Betty/WV · Post by **Betty/WV** » Wed Jul 20, 2011 6:32 pm

PB: I love masterful husbands too. I hate it whenever I ask my husband something and he says whatever you want!!!!!

I'm so glad you are seeing the doctor tomorrow. Make sure you relate to her just how bad your condition is.

Let us hear what happens.

BETTY/WV

Betty/WV · Post by **Betty/WV** » Wed Jul 20, 2011 6:33 pm

I have never did a sleep diary but I should. I see where there is instructions on how to do it on this site. I better check it out.\\

BETTY/WV

Post by **Polar Bear** » Wed Jul 20, 2011 7:39 pm

I made my own sleep diary:
Date, meds taken, time slept exactly (each period of sleep during the night), total hours slept during the night, and a comments column.

Post by **Polar Bear** » Wed Jul 20, 2011 7:41 pm

Aggghh.... I hate the 'whatever you want' !!!

Would you like fish or beef..... whichever you prefer, pet. - I hate that!

Post by **ViewsAskew** » Wed Jul 20, 2011 9:20 pm

Polar Bear wrote:My lovely husband says... enough!!!! .... back to the GP..... now!!
when I phoned the surgery, doc is on hols and I made an appointment for his return in two weeks..
LH says...... not good enough.... get back on the phone and see that lady doc that you like.... maybe she will help for the two weeks till regular GP gets back. (I like it when he's masterful )

Lady doc belongs to the practice, she is just not my usual doc but is really nice.

And I see her tomorrow afternoon - along with my sleep diary.

YEA!!!!!

I hope she helps. And, maybe if she's interested and inclined, she can become your new regular doc :-)

.

Post by **Polar Bear** » Thu Jul 21, 2011 6:46 pm

At lunchtime today I saw the treatment nurse who was taking bloods to have my ESR checked, this is done regularly each time I try to reduce my steroid. I ring the treatment room and make the appointment bypassing the doc. When nurse was drawing blood for the ESR I asked, 'do you think you could get a ferritin test done now as well'??? Last time I suggested this the nurse said that it had to be ordered by the doc. Today's nurse had no such qualms. Yeaaaah.... She drew blood for the ferritin also.

Later I saw the lady Gp that I've only ever seen a couple of times. And now I ask myself 'why'. She was so understanding, looked at my sleep diary and said she'd only ever once before come across anyone coping with so little sleep. (Diary for the past 2 months shows an average of 3.2 hours per night - fragmented).

I went to her regarding sleep, she also talked to me about aches/pains, WED, etc. etc. Says I am in a very complex situation. She did not know a lot about WED treatment but we talked about the suffering involved. When I told her how it was necessary in a restaurant to get a table at the edge of the room (so I could stand and stretch) rather than in the centre of the room, she was astounded, and put her hand over mine.

Next week I am due to see a Rheumatologist with regard to my Giant Cell/Temporal Artritis, the appointment was requested in July last year!!! thank you National Health Service :roll:

I was going to cancel this appointment as that aspect has improved so much but she reckons I should keep it as it is very possible my aches and pains are connected with the Temporal Artritis (Polymyalgia).

Tomorrow she plans on discussing my sleep issue with another of the doctors and reckons I need to attend a sleep clinic as a matter of urgency. I thought we didn't have one here in N.I. Doc says we used to have one tho it may have been a casualty of the cutbacks. But that in any case there has to be a sleep specialist somewhere, she will make enquiries. Wants to know my REM etc. etc.

This is the first time the possibility of a sleep specialist has been raised.

In the meantime we need sleep. She wants me to stay on the Circadin (SR Melatonin) and gave me Diazepam 5mg, take two if I wish. And continue with my sleep diary and return to her in 3 weeks. I asked could I not have something stronger that the zopiclone but she said that would mean temazepam and she preferred not to use that because of the addiction likelihood. My other regular GP said the same.

Doc kept my sleep diary for discussion with other doc.

We shall see tonight how the 10mg Diaz works with the Circadin.

It was wonderful to have someone say - this needs sorted.

Post by **ViewsAskew** » Thu Jul 21, 2011 7:17 pm

I have happy tears in my eyes. I love reading stories like this. They're so bright and full of hope.

I'm so glad you got to see her, PB.

Post by **Polar Bear** » Thu Jul 21, 2011 7:24 pm

Thank you Ann....... now you're going to make me cry.... boo hoo..... only kidding..

SquirmingSusan · Post by **SquirmingSusan** » Thu Jul 21, 2011 8:37 pm

So glad you've found someone who cares, and truly wants to help you feel better, PB. I hope the diazepam works for you and you get some great sleep. I do find it odd that she would prescribe that and not temazepam, because one of the metabolites of diazepam is temazepam... But doctors always seem to get really weird about which benzos they prescribe and which ones they won't.

Let's just hope that it helps you for the meantime, and that you can find a sleep specialist that really understands how to treat RLS. You've been suffering too much, too long with this.