sleep issues

Post by **Polar Bear** » Thu Jul 21, 2011 9:49 pm

Yes Susan, neither of the GPs would go for temazepam. My d-in-l is a senior nurse and says that with all that my body is dealing with that it really is temazepam that's needed for the job. But d-in-law says she also knows patients who are on temazepam 40mg with nothing else left to try.

As for sleep specialist, I think doc was thinking of it only with regard to insomnia, not so much the WED as it is not such a bother at night, just sometimes. I take a much bigger dose of WED meds at night.

But wouldn't it be great if she found a sleep specialist who also knew something about WED.

Post by **Polar Bear** » Fri Jul 22, 2011 8:05 am

Last night I took Circadin 2mg at 10pm (two hours before 'sleep' time) and at 12 midnight took 10mg diaz. Next I knew it was 4am. I was up for 10 minutes and back to bed and back to sleep. There were a few minor awakenings but got back to sleep each time until 8am. I am so used to getting up when I awaken that was such a change of pattern to have to remember - don't get up out of bed.

This is wonderful and I hope that it is not a one off.

This morning I feel almost normal. It is 9am and I have the laundry sorted and a home made steak pie ready for the oven for dinner tonight.

The sun is shining and is to do so all weekend.
Here in N.I. we don't have the beautiful all day every day sunshine that most of you have.

It is a good day.

cornelia · Post by **cornelia** » Fri Jul 22, 2011 10:58 am

'm sooo happy for you that today life is as it should be for everybody.

I find it very positive that a sleep clinic will be the next step for your WED.

A sleep specialist gave me once Temazepam and I was on it for 5 months. I stopped it cold turkey, had a few difficult days and that was it.

Diazepam was a lot more difficult to stop, so pls try not to take it every day.

Corrie

Betty/WV · Post by **Betty/WV** » Fri Jul 22, 2011 11:45 am

Boy, do I have a sleep issue. Went to my doctor and he gave me cymbalta for pain and anti depressant. I took one yesterday morning and then it dawned on me that I should check it out in case it exacerbates the
WED. Well, guess what? It did and I haven't been asleep all night and it is now 7:40 am and I am in misery. I am at my breaking point. My arthritis
is killing me and the fibro is acting up and I have terrible pain in my foot.
I just took a tramadol and will take my mirapex in a little while.... And since I haven't been driving for several weeks, because I was falling asleep driving. My neuro said I am very badly sleep deprived.....I wonder why?????????? And I am very depressed. I just don't know what to do with myself.

HELP!!!!!!

BETTY/WV

Post by **ViewsAskew** » Fri Jul 22, 2011 5:43 pm

PB, that is just wonderful.

Betty, my heart goes out to you. It's so hard to formulate a plan when it's like this.

Maybe it would help to talk it out with us. What do you think your options are and how can we help you?

Betty/WV · Post by **Betty/WV** » Fri Jul 22, 2011 5:58 pm

Views::: You are right, it is hard to decide what to do when you feel like I did yesterday and this morning. But the cymbalta wore off, I took a shower. Then I took a tramadol and a little later took my mirapex. And I started feeling a little better. I laid down and slept for a little while. And I am going to lay back down. I still feel weak.

I guess I get "brain fog" when I have those episodes. I was ready to go to the ER and call the doctor etcetc.

Thanks for caring. And it does help just to get on here and let it all out. I try to explain to my hubby but I think he gets frusterated and doesn't know what to do or what to say.

Thanks again to all of you, just to be there to listen to my ranting when these things happen. And I know you all understand what it feels like. Because you have to have WED to realize how miserable it is.

BETTY/WV

Post by **Polar Bear** » Fri Jul 22, 2011 8:03 pm

Betty; I am so sorry that things are so bad for you. Sometimes there just seems no way to turn.

You will see from my last post that my understanding doctor helped me to get some sleep last night and I just wish I could send some your way.

When I woke up this morning having slept decently for the first time in...... who knows...... I realised just how deprived and 'abnormal' my life has been.

The brain fog is awful, almost feeling removed from the situation entirely. And concentration barely exists. How I feel for you.

And yes, you gotta have experienced WED to have any idea what it's about.

I hope you managed a nap today and are feeling a little stronger.

Betty/WV · Post by **Betty/WV** » Fri Jul 22, 2011 8:16 pm

Thanks for caring PB. I was up walking the floor all night. At about 8 am I took a shower (I think the cymbalta was wearing off) took a tramadol and I could feel my body starting to relax. I laid down and slept for a couple hours. It felt wonderful. I still feel weak but nothing like a did yesteday and last night. This I can handle. When I have one of those episodes, I get panicky. I'm just going to lay around today. Its to hot to do anything anyway.

Thanks again for your concern. What would I do without you all to pour out my feelings too.

BETTY/WV

Post by **Polar Bear** » Fri Jul 22, 2011 8:25 pm

A lovely thing happened to me today.
Lady GP that I saw yesterday telephoned me at home today and asked how I slept last night after adding the 10mg Diaz to my Circadin.

She says she had chatted with another doctor in the practice.

I am due to see a Rheumatologist next week and she wanted to tell me to take with me to this appt a copy of the papers that I gave her yesterday, i.e. Sleep Diary and also a record of my conditions, how each condition affects me and the relevant medications for each condition. And then she gave me an appointment to see her for the day following the Rheumatologist appointment.

Lady GP said that Rheum.... should be able to advise regarding WED also, and I said... don't think so.... WED is neurology/dopamine etc. (or am I missing something ?) It was clear that Lady GP was uneducated in the ways of WED but what she did have was a willingness to help. And I know what she meant, it was the vicious circle of lack of sleep/ pains and aches/ WED all affecting each other.

Lady GP said she would try and locate a Sleep Expert and if unsuccessful she knows of a particular General Physician Consultant who is very caring and thorough and would be a starting point.

However !!! her words were.... this Diaz is only a short term solution to get you some sleep. She wants to see me next week and to start me on Amnitriptiline. Says it serves lots of useful purposes and is excellent for pain and sleep. Indeed my cousin takes it for fibro and finds it most helpful.

I said I had reservations cos it has a bad reputation regarding its affect on WED - tho I understand that the bad affect is not as high as previously reckoned and is something like around 20%.

It may be that I need to give the Amnitriptiline a go, work on the sleep issue, and deal with any increase in WED if it happens (nightmare thought).

But didn't Lady GP show an interested and caring manner.

Post by **Polar Bear** » Fri Jul 22, 2011 8:35 pm

Betty, I feel the same about this board.

Each day I come to it like an old friend, to see how the folks are doing. To have a wee rant myself sometimes (the equivalent of kicking the cat!! kidding.. kidding... I wouldn't kick the cat) if I've had a bad time.

Someone always comes back with encouragement and advice, or even to tell me I'm wrong in what I'm thinking.

Experience of others is what it's all about, and their willingness to share.

Betty/WV · Post by **Betty/WV** » Fri Jul 22, 2011 10:29 pm

I'm so happy you found that doctor. Makes you feel good doesn't it, when you find someone that shows compassion. Especially someone in the medical field.

The first night I found this site, by accident. I was having a terrible night. And when I got on the Discussion Board I just let all my emotions, and feelings out and it felt so good when I started getting replys. I thought "these people know exactly where I am coming from". From then on I was a daily visitor. And for the first time I began learning so much about WED. For years I didn't even know what was wrong with me.

Wish you the best, and please let us know how you are doing....

BETTY/WV

Post by **ViewsAskew** » Sat Jul 23, 2011 5:32 am

PB, if you can educate your lady doc, you'll be in a happy place! She cares, now all she needs is a bit of info here and there.

Do you think she'd read the Clinical Management of RLS if you gave her a copy? I'm assuming it's available in Northern Ireland...

Post by **ViewsAskew** » Sat Jul 23, 2011 5:34 am

Betty/WV wrote:Views::: You are right, it is hard to decide what to do when you feel like I did yesterday and this morning. But the cymbalta wore off, I took a shower. Then I took a tramadol and a little later took my mirapex. And I started feeling a little better. I laid down and slept for a little while. And I am going to lay back down. I still feel weak.

I guess I get "brain fog" when I have those episodes. I was ready to go to the ER and call the doctor etcetc.

Thanks for caring. And it does help just to get on here and let it all out. I try to explain to my hubby but I think he gets frusterated and doesn't know what to do or what to say.

Thanks again to all of you, just to be there to listen to my ranting when these things happen. And I know you all understand what it feels like. Because you have to have WED to realize how miserable it is.

BETTY/WV

Oh, how I know about the weird brain panic you get when it's that bad! You really can't think straight.

I hope that you can find a way to help them help you better. You need more than you're getting and - as I know all too well - it's so difficult to get that sometimes.

Post by **Polar Bear** » Sat Jul 23, 2011 8:13 am

Views: Yes I'm sure the book is available on amazon.

Alas, I didn't get as much sleep last night. Got over 7 hours the first night and was over the moon. Last night I got 3.5 plus 1.5 = 5 hours. Why the difference, who knows.

Post by **ViewsAskew** » Sat Jul 23, 2011 6:29 pm

Hmmm....five is better than 1 or 2, but I find myself getting more greedy, less tolerant of no sleep as time goes by. Been there, done that and don't like it!