For the last 4 + months I have been having a problem with sleeping. So I went to my GP and they sent me to Guys Hospital at London Bridge to study me for a night. Well my results are back and I’ve been told I suffer from sleep apnea. I then got told I have 2 options a gum shield which they don’t think will work or the ccap machine.
So today (15/10/13) I picked up an acap machine to record my breathing and hopefully I won’t snore so much and everyone will sleep better. So for 2 weeks I will be giving it a go. Then hopefully I will be able to deal my Dystonia better.
Well on Tuesday 3rd September I had an appointment with my specialist and was pleased with how my foot looked good but then he be grabbed it to see how much movement I have which is not a lot but its better than what it has been. But his man handling of my foot managed to wake my Dystonia monster and the pain for the rest of the day was that bad all I wanted to do was shut down and try and sleep through the pain until it was bearable. But as I’m not sleeping very much I’m not coping with the pain. I am hiding it from everyone and putting on a brave face.
Then on Thursday I had to go to Guys Hospital to be monitored to try and find why I am having problems sleeping. After an hour I was ready to be monitored for the night
I’m wired up to see why I don’t sleep well the night as always was a long one with the wires and a hot room was a struggle but all I can hope is I didn’t embarrass myself. So I am awaiting those results now. I’m finding I’m not coping very well close to tears but hiding my feelings so I don’t make people worry. So I thought I would put my thoughts on here.
My life with Dystonia feels a lonely one.
Well I’m just left waiting for results for the last 2 weeks hospital appointments.
Went to my GP as the chemists are having problems getting my medicine gabapentin so i was talking away and mentioned that i had a numb finger. So I also had to fit in a blood test as well because for the last 2 months I have had this numb finger. I’ve taken all my rings off and still no joy still puzzled so GP said you need a blood test. I hope it comes back all ok. But they always say no news is good so at moment no news. My lack of sleep is really bugging me grumpy is the polite word for it. Trying to stay awake while at work for my 3 days that I do is a major struggle. But on a good thing we have our new mattress coming on 22/8/2013 a tempura one I’m hoping it arrives. My foot is hurting and keeps twitching not sure what that is about. So I shall type soon take care all
Today no matter what I try and do I can’t hide my pain. My foot must be in overdrive for pain. Mmmmm what have I done different I’m not sure. Still not sleeping that good but this week I’m at Kings College Hospital for tests on my heart. Yes I have a heart cos when I’m with my hubby and family it beats a happy little tune. But if I’m honest I’m a bit worried as when I last spoke to someone they said what is going to happen is they will make me run when I told them I can’t they then said ok we will get you to run up stairs when I said did you not listen I can’t because of my Dystonia they said don’t worry we will sort it. Mmmmm what will they sort.
But I’m not giving in on this pain stuff today grrrrr.
Today I’m off a local hospital as I’m having some problems with my heart my Dystonia specialist thinks I’m having panic attacks. I’ve had one 24 hour test and found I have a sinus tachycardia (irregular heart rhythm) my heart doesn’t beat below 100 and when I lay down I can hear and feel my heart going 10 to the dozen.
When I did a trial test at UCL in London I was told panic attacks are just an extra us suffers have to put up with. I’m not sure if that is true. I found this note on the web called ehealthme an interesting read but when you read that article it reads different.
But I think today’s visit is a bit of waste of time as I have still not had any tests to help with this matter. But here goes nothing as usual.
I’m still trying to do my Zentangles to give me some relax. I have one question how do you meditate I’m still confused. Still having problem with sleeping and may of have developed sleep apnea problems breathing when asleep more tests due.
Take care all speak again soon