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12-08-2013, 01:52 PM
Wow. SleepyHead software is amazing and thank you so much. I'm still working on trying to figure it out but this is helpful. One knows it's bad when you are in pain and at 3AM you are in the med cabinet trying to figure out what to take that might not increase the CA events. My AHI for this week have been: 10.39, 9.17, 17.99, 20.94, 15.77, 9.91 then last night they dropped back down to 4.59 so I guess the Tizanidine (if that is a factor-with neurology who knows) didn't make it worse. I have the pulse ox tomorrow. Do they come to your house for that or is it in the mail? So much to learn and so little energy. At least with the software I can see what is happening. How do doctors feel about using the software. I did ask the technician once and he told me it was impossible to see my data. I really like my pulmonologist and it would seem to be helpful to mail it to her but it seems the SleepyHead is easier to interpret. Everyone have a wonderful Sunday!
12-08-2013, 03:22 PM
Hopefully you will find a dose of Gabapentin that helps you. I have been in it for just over two years and it helps a lot with the spasms I get in my back. I have mild hypermobility but over the years of having injuries my body now is so stiff but I also have fibromyalgia so that wont help. when did you start your journey on CPAP mine was last December when my GP asked me to fill in the epworth daytime sleepiness scale and I scored 23/24 not bad. I had my two nights of a sleep test at home on 5-7 February and then on 28 February I was told that I have sleep apnoea and would have to have a cpap when a sleep.
I finally got the machine on 9 April and from the start I started wearing the mask without any problem. My thought was if I have to wear this for the rest of my life I might as well wear it all night. Since April I have only had a few days where I havent achieved the minimum of 4 hours.
We must have started around the same time. I had 4 studies before they finally diagnosed it in March of last year. I was so hopeful for that elusive restful sleep everyone talks about so I was like you and went into it with a thankful heart for a diagnosis. I have insomnia too so they couldn't get good readings because I couldn't fall asleep in the lab. So funny because the tech kept telling me I didn't fit the pattern of apnea at all and later apologized. I quit the Gabapentin as I ate everything in the house up…lol and went back to the Ropinirole which controls the restless legs, which I guess I've had all my life. I just never realized that was what the weird sensation was. I use my CPAP even when I nap. Since you are hypermobile you might like this link as he seems to be one of the top doctors on sleep/hypermobility/EDS. Sorry, I didn't realize we couldn't post links. Just google Pocinki Ehlers-Danlos syndrome and you will get the information.
Peaceful restorative sleep to you!
12-08-2013, 10:10 PM
Currently, I take Baclofen for the spasms. I am one of those EDSers that is in near constant spasm to the point of spasticity vs floppy. After years of trying every muscle relaxer I could (Skelaxin is really the only one that worked for me), a neurologist prescribe the Baclofen (in pill form) to help with headaches due to my neck issues. After several weeks, I realized some of my muscles were softer to the touch and I asked him about it. We increased my dose and I have seen some marked improvement overall. I'm no where near bad enough to need a baclofen pump (thank god) but the pill form is doing more than enough to stop the rigidity that was putting stress on the joints the rigidity was trying to protect.
One thing to look for when taking meds is to really look for trends in the CPAP data. Note what your normal ranges are. When you start a new medication, write it down so you don't forget which day you started it. Then keep an eye on the data. Overall, I've not noticed that much of a change in my ranges in terms of pain medications that I take. What I do notice though is HUGE differences in which anti-depressant I am taking. The one I am on now is very good and my AHI is lowering. The one I was on previously, my AHI was all over the place starting the fourth day after I started that medication.
I have a notebook on my desk and I jot down what extra meds I take before bed. Like if I have to take a Vicoden or an extra Baclofen or Relpax (migraine med). Then later, if I see an odd day in the CPAP data, I check that day against my notes. That notebook is also where I write down when I started a new medication, when one was increased or decreased, when one was dropped, etc. I actually sleep better and have a lower AHI on the nights I take the Vicoden. I think it is because I am in less pain and in deeper sleep (la-la land). I move around less so lower leak rate, too.
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