Sleep study on Thursday! HELP!!!!

[restlessstoz]

I'm back again and this time with a 'How to cope' question of a different sort. On Thursday night I have a sleep study booked. It's now 1.45 am and I've been up since before midnight with a bad RL episode. I'm dreading the sleep study and worry that it will be like tonight, only with wires attached everywhere and nowhere to run! Does anyone have any experience to share please or advice. I know that worrying will most likely exacerbate symptoms so I'm trying to relax and breathe......

[Heatherlss]

Hi!

I too have a sleep study in the coming days. I'm wondering as well how it shall go. Let's hope it doesn't get too bad.

Hope you have a better night ahead

[restlessstoz in reply to Heatherlss]

I had about 40 minutes before midnight... none since!!!! Arrrghhh!!!

[restlessstoz in reply to restlessstoz]

Here in Australia it's now 5 am!!!

[blueeyes5262 in reply to Heatherlss]

Nothing to it!

Lots of wires and Glu!!

Little hard to get comfortable, I have insomnia too

[LotteM]

Tey donn’t need very long stretches of sleep to assess your sleep situation. And if you don’t get to sleep at all, well that will clearly show the severity of your situation. Don’t worry about the wires and such, it is far less inhibiting that you think. On fact, I hardly noticed it at all - except when I looked in the mirrror 😱.

I am sure you will not only survive but do well, i.e. sufficiently to yield the essential information.

[restlessstoz in reply to LotteM]

Thank you Lotte for your encouragement. I've had three sleep studies before, the initial one diagnosing sleep apnoea. that was about 16+ years ago. I lost about 40 kg and the condition improved a lot. Now I'm having this one after the haematologist suggested seeing a sleep physician again to see if the sleep apnoea is affecting my legs. Nights are such a nightmare anyway when legs are bad, I hate to think of being wired up and having bad legs as well.

As you say, if they're bad, then that will show the doctor what I'm talking about. I gave him the info about Dr B and rsl.org. I hope he's read stuff as he didn't appear very knowledgeable about RL when I spoke to him last month. Thought that they kept waking me up and didn't realise I felt the sensations once awake. I think he was confused with PLMD but I know RL sufferers can have both. He's a fighter though and has said if we can 'prove' I have severe RL that doesn't respond to other drugs, he's prepared to get a case together for cannabinoids or methadone, both drugs not readily available here.

[LotteM in reply to restlessstoz]

Doesn’t sound bad. Good luck, Oz, with the sleep study. You’ll get through.

[restlessstoz in reply to LotteM]

Thank you Lotte.

[Shumbah in reply to restlessstoz]

Oz just wondering if you are In Australia ?

Hope I’ve not asked before it can get confusing sometimes on here

[Graham3196]

I haf a sleep study. When the RLS attacked I was able to walk around without a problem. I forget whether I unplugged cables jor if the monitoring unit was on wheels and came with me. The staff were very helpful and they are used to looking after people with problems. Dont forget its 3am to you but just another shift to them so your needs are not disturbing them

[restlessstoz in reply to Graham3196]

THANK YOU Graham. That's very reassuring. Did you get enough sleep to give some information? Last night I got less than an hours sleep! Pretty miserable and hoping tomorrow night won't be like that, but if it is, then so be it. At least I'll have someone who will see what it's like, and have probably seen before.

[Graham3196 in reply to restlessstoz]

It was a while ago. I felt like i slept for an hour but I think they measured about two hours. Enough to declare my apbea mild and not a real problem. They also recorded a lot of leg movement. Sleep apnea can cause or trigger RLS but its not common. The sleep study sales people still wanted to sell me a pump but I was interested in curing my RLS. In my case diet has been the major relief with perhaps some contribution from increased ferritin

[restlessstoz in reply to Graham3196]

My sleep apnoea is severe on my back and non existent on my side. I'm now wishing it was 7.45 not 6 pm! Just want to get there now, not hang around. Legs already not good! AS you say, at least there's company and a technician who's the same one I've had since the first study 15 years ago! At the time she said she'd never heard anyone snore quite as loudly as I did!!! What a claim to fame.

My GP doesn't believe my RL is caused/affected by food. I beg to differ with him. I'm positive glutamate is a factor and have many RL nights to show for it. When I eat chicken, my legs buzz horrendously. which then morphs into RL. Cheese too. What I do believe though is that with good medication cover, these dietary things will not affect RL as much.

Just (today) found a friend who can help with some oil to try. I will be very interested to see what that does. I'll rub it on to start with as I've read that can help.

[jjyankee]

I have horrible restless legs as well and did have to have a sleep study done- I had 2 actually. The first one was in a sleep study lab (I never sleep well in strange environments). Anyway, I was worried because I toss and turn so much. So I went and the number of wires and stuff they hook you up too is insane- got there around 9:30 and attempted to fall asleep around 11:00; I could not fall asleep though they said I did doze off for 30 min. Anyway, at around 2:00 AM I was still awake so told them I wanted to go home and left! Because they didn't have enough info they decided I could do another sleep study at home. That one was a breeze! All I had to do was wear a band (with a monitor) around my forehead. Was not uncomfortable at all- I think I had some little type of control device too- was all super easy and I got clear results (severe sleep apnea unfortunately-but totally treatable with CPAP).

I live in the U.S.- in my area, most sleep studies seem to be done at home now; my sister and husband also had at home sleep studies-

[restlessstoz in reply to jjyankee]

It sounds as if America is quite different to Australia. Certainly the bi I live in. They don't have that option. I did sleep the other times I've had a sleep study, but RL wasn't in the picture in the same way then- about 5 or more years ago at least since I had one. It will be an experience! Time will tell if I can stay in bed or not because if my legs are bad, I'll be up and out before they can tell me to stay in bed. Even standing won't help, it would have to be walking if I can't distract. Still, no point worrying yet. Time to get ready and go. Will post tomorrow when it's all over and done with.

[jjyankee in reply to restlessstoz]

Awwwww- that's too bad (not having the option to do it at home). I hope you're able to at least sleep enough for them to get enough info- good luck!

[Shumbah]

I had mine a few months ago at John Hopkins

I was worried as we do with this disease and sleep it’s stressful alright

You can get out of bed as much as you like I even had a cup of tea and a sandwich when I could not stay ini bed .

My results I wake from periodic limbs both arms and legs 48 times an hour so that is nearly every minute.

just make sure you get a a detailed full printed copy of results so if you change doctors down the track you don’t have to re do sleep test .

[restlessstoz in reply to Shumbah]

Thanks Shumbah. I will do that. From memory the doctor gave me print outs when I had the other three studies I've had. He's good that way.

I'm looking forward to getting it over with now. Not very worried about the legs aspect. It will have to be however it will be. At least I will have it documented it I have a rubbish night! And company as well with the technician there!!! Bonus.

I have severe sleep apnoea when sleeping on my back and none on my side. I did have a CPAP machine but ended up giving it up after 11 years as I kept swallowing air and getting dreadful stomach pains so the specialist told me to leave it off and wear a stuffed bum bag round my waist back to front so that I couldn't roll onto my back. He's now looking at a mouth brace... if he can get them made and available to people on a concession. Otherwise they cost over $2,500! Which I couldn't afford regardless. I'll post tomorrow when I know how it went. Thanks for the encouragement.

[byrnzy4]

I was exhausted for my sleep study at mayo clinic in minnesota. And it turned out ok. I slept enough for them to know what they needed.

[restlessstoz]

WELL, here I am after my sleep study! I survived, but only just.

According to the technician who's been conducting sleep studies for over 18 years, only one other person in all that time had as bad a night as I did! I had in total about 60 minutes sleep. The rest of the night was spend standing by the bed hopping from one leg to the other, and other assorted jiggling, trying not to get tangled in wires and cables or to move further than a metre from the spot!

The first episode went for over two hours without stopping. The second, at least that long then in and out of bed several times with no sleep in between with my legs furiously buzzing! Not my best night.

However, on the positive side, at least my hellish symptoms have been documented which will be invaluable if I need to apply for methadone or another restricted treatment. I will go back to the sleep specialist in 3 weeks. I still have severe sleep apnoea when on my back but who cares, I'm never in bed on my back long enough to have ANY sleep apnoea!!!!

Feeling relieved and soooooo tired but I don't expect bed will hold any sleep but will try.

Thanks everyone for your wonderful support. I'd have felt a lot more anxious about it without your encouragement.

[Heatherlss in reply to restlessstoz]

I'm sorry you had a rough night. On the bright side, as you noted, they will now understand that you and people like us have not been kidding when we say we have tingling feeling in the legs at night which disturbs us. It's not just a 'small little thing' as one of the junior doctors I saw said it is. This might be the beginning of good things for you. Again, I'm sorry for your troubles. I hope it gets better for all of us.

[Megg5]

Hello, I've had RLS for many years. Have tried different medications but nothing helped so gave up as couldn't stand the side effects. To cut a long story short I had sleep studies done recently and they have now also diagnosed me with 81% PLMD (Periodic Leg Movement Disorder). And yet another specialist confirms lower limb neuropathy. I seem to be going round in circles with doctors and specialists and quite honestly have no faith in any of them. Unfortunately my symptoms are now worse than ever and with an upcoming appointment with my specialist if nothing else works would consider cannabis. For anyone reading this good luck to you and I hope you've received better advice/help than I have.

[restlessstoz in reply to Megg5]

Thanks Megg! I do feel for you and for all of us who suffer from RLS. I just saw my GP after another week with 4 nights sleepless. The only times I could sleep was when I uses a left over Neupro patch which work brilliantly- I can sleep for 10 hours with one. The trouble is that when I used them full time, I augmented within two weeks! So, I will keep the left over ones for emergencies and when I simply cannot go without sleep for one more day. Meanwhile, my GP has given me Targin which will replace the Lyrica/pregabalin, and tramadol which both were useless. Let's hope that this will give me some rest. I'm running out of hope and energy to keep on going. I've tried everything and running out of options.

[mags55]

Nice to hear back from you. I’ve had another bad night, just grateful I don’t need to get ready for work!! At least one good thing. Good luck to us all. xx

[restlessstoz in reply to mags55]

You can say that again! How we are all still here I sometimes don't know. It shows how resilient the human spirit is to keep on coming back for more! We all deserve the highest accolades and yet here on the forum is about the only place that we will get them. And some still have the ability to keep their sense of humour! (Thinking particularly of Raffs here!) At least we can keep each other going and listen to our nightmares.

[Abby14]

Hey, You will be fine I have had one & it was ok. You go in & get your self settled in your own room there is a tv to watch & I took my tablet with me so I could go on facebook ect. Then they come get you & wire you up to a box, then you go back to your room & a bit later they come & plug the box in. I did find it hard to sleep as I am a very restless sleeper. You have a bell so if you need the loo or anything they come in. Try not to worry to much In the morning they come get you & remove all the wires ect! You will need to wash your hair as the gule they use is very sticky! There is a bathroom in your room. It will diagonse your sleep problems & then they can help My sleep Dr was lovely Let me know how you get on, I am sure you will ok

[restlessstoz in reply to Abby14]

Hi Abby, thanks for your kind reassurance. I did have the study a week ago. You can see the result if you look up the post. I do appreciate you responding though.