CP insomnia

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8 years 5 months ago #10925 by BIY
CP insomnia was created by BIY
Hi Kebsa,

I noticed you were awake in the wee hours as well. Been trying to go back to sleep for hours, but these darn restless legs have other ideas!

Isn't it great that we have access to a 24 hour forum where we can say "hi" and post at anytime of the day or night...helps with the loneliness of the wee small hours :)

Hugs,
Fee

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8 years 5 months ago #10928 by kebsa
Replied by kebsa on topic CP insomnia
yep, i am a lousy sleeper and used to get really stressed about the fact it was 4am and i was still awake- now i just distract myself and do something until i do feel tired- then try to go to sleep when that happens- i heard a sleep physicain on radio say that sleeping is like surfing, sleep goes through cycles where we feel varying levels of sleepiness- we go thorough the 4 different levels many times per night even when a sleep. He advised that if you tried to settle but could not, get up ot of bed, don't toss and turn and get frustrated, do something that is low stimulation but then AS SOON as you start to feel dopey and tired go back to bed- thats you trying to catch the next wave. i have never forgotten that analogy and it has hellped me -still i have one night per week on average when i just do not sleep, then i will stay up all day and have an early night

i am worse at present as i have been on a waiting list for ages to get an electric height adjustable bed, i cant trasnfer in an out alone and i cannot lie down flat - i have been sleeping in a recliner for a couple of yrs !finally i have a new bed and it is good but being in a seated position 24 hours a day for 2 yrs has made me contract through the hips and lower back - when i try to lie down that stresses the lower back were i fractured the 3 vertabra in a fall. Needless to say, my pain levels are up a lot at present. the bed is great and it should eventually be better- i have just got to re train myself to lie down a bit more each night- if i over do it like tonight i get severe nerve pain down both legs (even though i am an amputee and have oneleg!)

anyway short term pain for long term gain, if i carried on sleeping in the recliner i would evntually just sieze up through the hips with permanent contractures so its worth it!!

as for te restless legs, have you ever heard of restless legs syndrome- if not do a web search on one of the health sites or call health direct cal line (cant find the number rite now but you can google it) there are ways to help restless jumpy legs at night
hope that is useful
karen

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8 years 5 months ago #10930 by BIY
Replied by BIY on topic CP insomnia
I am so glad for you that you have your new bed at last Kebsa. I hope that over time, bit by bit, your body will get used to it and end up a bit more comfortable at night. I sit a lot in my recliner during the day and it gets uncomfortable; I can imagine how uncomfortable it must have been sleeping in it as well. It seems cruel to have to wait so long for these things.

I do have restless leg syndrome first brought on by an adverse reaction to lyrica which I trialled early 2011. I have been left with it ever since and I have the symptoms from it everyday including the sensation like someone with a really strong hand is squeezing the muscles in my legs throughout the day and electricity is constantly running through them. The electric feeling gets worse at night and that is also when the need to move them kicks in.

Each new medication that I'm trialled on that interacts with the CNS flares it up worse. my GP recently tried me on Tegretol and it's flared the RLS up big time again even though I stopped the Tegretol 3 weeks ago. I have had to resort to taking Paxam every night (which I don't like doing because of dependence). I have already built up a tolerance and have been awake most of the nite with the RLS despite taking a Paxam at bedtime. I don't eat chocolate or drink caffeine anymore as this also stirs it up.

I found an interesting journal article about it and it would seem my GP has been prescribing medications contraindicated to RSL. He even suggested taking Phenergen to help me sleep which, duh, flared up the RSL again. And then, instead of realising that antihistamines flare up RLS, once again put the onus onto me for being hypervigilant about symptoms. It would seem from the journal article that dopamine agonists are the first line treatments for RLS, but he has not offered this.

I have belatedly realised that I have wasted a lot of energy consulting him on RLS when I probably should have been speaking to the neurologist who treats my migraines?? Is a neurologist the best person to speak to re RLS? If not, who's field do you suggest this comes under?.

Have you ever tried "mirroring" for your phantom limb pain. I read about it in the "The Brain That Changes itself" it seemed a really interesting concept.

I hope your pain levels settle down soon.

Hugs,
Fee

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8 years 5 months ago #10931 by grappers
Replied by grappers on topic CP insomnia
Fee you said you had a adverse reaction to lyrica which brought on your RLS, and now you are on Paxam, are they both not anti-epileptics, just a thought if Lyrica caused the problem would not Paxam have the same result, therefore the continuation of RSL.
For me all anti-epileptics have the same outcome if I take them, my RSL is brought on by back spasms which I am glad to say is now slowly going away, but I still get the sensations of water running down my leg or insects walking up and down.

Don

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8 years 5 months ago #10933 by BIY
Replied by BIY on topic CP insomnia
Hi Don,

At first the Paxam seemed like the only medication I could tolerate. Apparently they are a second line treatment in RLS because of being a benzodiazepine and thus, a muscle relaxant. However, when I was looking them up the other day, I saw that they also have an anti convulsant component. However, they are notoriously addictive and tolerance is quickly built so I don't know if it's the tolerance or me getting even further sensitivity since trialling the Tegretol recently.

Quite honestly Don I don't know who to turn to about this as the less sleep I'm getting each night, the stronger the depression is getting each day.

I would really like to know the difference between the pain management clinic I went to and the pain clinics some members talk about where all their treatment seems to be coordinated from that one point.

However, people like you and I Don, present an even more difficult challenge because of our medication sensitivities.

Do the pain clinics that other members attend have a GP attached to them? Or do you have appointments with a pain specialist instead of seeing a GP.

I'd really like to hear other member's experience of this, because I feel so lost at the moment not knowing who to turn to about what the Tegretol has done and now the ineffectiveness of the Paxam. I feel like I'm going down that slippery slope of increasing sleep deprivation again and the corresponding depression gets a bit worse every day.

Fee

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8 years 5 months ago #10935 by grappers
Replied by grappers on topic CP insomnia
Fee I wrote a reply in another thread where you have asked the same question regarding pain clinics and GP's, as for who to ask about your RLS I would seek advice from the pain clinic as it is all tied to your injury in one way or another, they then should liase with your GP about treatment regimes they want to try and he then should comply with there requests, as they are the ones who specialise in CP, If your GP doesn't want to follow these reccomendations then it is time to find a new GP. We are constantly informed that we need a team behind us, all literature states that is the building blocks for all good pain management.

Fee I struggled for years on no or little sleep, so I know what it does and how you are feeling, lucky for me I have found a way out, I know how depressed you can get and have the added pressure of not being able to take a medication that lessons those feelings, life was very hard, each morning I would try to focus on the good things that I have so I would not feel so down and out for the rest of the day, but when you think you are coping pain hits and nothing you do makes it any less tolerable, it's times like this you fall into the big black hole and start wondering if life will get any better or worse. It amazes me how we manage to drag ourselves back from these times but we do.

Hugs Fee XOXOX
Don

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