I’ve posted previously about my ongoing headache (which i only get between 3am and waking ). You may remember I had a sleep study done basically wearing a watch for 2 nights .
It has taken me 5 months to get the results and I even had to write to pals in the end .
Results showed no evidence of any apneas no snoring . But the heart rate changes (especially between 3 and 5am ) recorded were consistent with PLMD (periodic limb movement disorder ) and apparently this can cause headaches according to lung specialist who read report .
My question is surely my husband would know if I was moving around all the time and does anyone else have PLMD ?
My GP didn’t agree with headaches being caused by PLMD 🤦♀️. Neurology cancelled my last appointment due to staff sickness . So here we are no further forward and still blighted every morning with hangover from hell.
Thank you for reading and I did say I would provide an update on sleep study 😊xxx
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Tiggywoos
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I have not got PLMD but at 2 - 3am in the morning if I have inflamation it is at its worse. Often I wake then with joint pain, sweats, tender abdomen, flesh burn feeling dry mouth, sore gums,nose toothache etc etc.
(Exact time may depend on time we get to sleep and get up. So being an hour out might be of less significance.)
So I think I toss and turn then, affecting limbs and probably breathing.
I think natural steroid levels reduce then. Blood glucose levels lowest due to increased insulin release.
Maybe they could look for any underlying changes in blood chemistry that might be causing symptoms like limb movement, headache and any breathing changes.
PLMD never heard off. Seems a bit of strange term - one of those ones that explains nothing.
Sorry you had to wait so long and go to PALS to hear back. Hoping that you get a proper explanation .. You deserve one.🤷
Thank you ☺️ and you are so right why don’t they focus on what might be causing it !? They suggested Parkinson’s patches but seems very drastic . That is so interesting what you say about cortisol and blood sugar levels ….. I’m sure someone else mentioned that … really appreciate your reply hun and we often have similar symptoms xxx
Periodic Limb Movement Disorders occur commonly and relate to movements or “jerking” of legs, arms and sometimes the body which can occur in an “involuntary” fashion over which you have no control.
The reason you have had Parkinson patches suggested is because Dopamine is a drug that can help this condition. Having said that my husband was prescribed one of the Dopamine drugs for his PLMD and it did nothing. I actually found boosting his B12 had a better affect.
As for the headaches, I’d insist you get referred to a headache clinic and forget the sleep study. You obviously have a form of headache disorder which will need a specific medication which only a headache specialist can diagnose. They have an excellent clinic at Kings if that helps.
Very much so. The clue is in the name!! I suspect this Lung Doctor has looked at your study and “assumed” that your results fit this diagnosis. Normally a good sleep study ( my husband had one) is also videoed with a helmet with numerous attachments and wires fixed to your scull in a special hospital room setting. I’m not sure what you had done but it does not sound like a classic SS.
I’m sorry to say they have wasted your time with this. I really think you need to get the headache diagnosed.
Have you tried mct oil just before bed. 3am is the time for low sugars which can cause headaches. Apparently it's good to help regulate yr sugars, worth a shot.
This all sounds so familiar to me. My husband used an app with a watch for just one night for his sleep study - which he was so tired trying to install that he slept pretty well. The results came back months later in a letter saying he has mild sleep apnea but they wouldn’t suggest bothering with a CPAP device for this and discharged him. GP has re- referred him but it’s tricky as he genuinely doesn’t report feeling sleepy while driving and I think this is their main concern.
He is always tired these days and I sleep in our spare room now as just can’t cope with the volume of his snoring. It actually puts me off going on holiday with him ever. And I doubt he would notice my own restlessness at night as he snores through it all and only notices when I “prod” him - which I hate to do but I do get desperate. I actually recorded him earlier this year when we were sharing a bed and played it back and he was horrified! He has a bit of RLS in his light sleep periods as well. If he drinks anything alcoholic at all he’s had it and is awake from 4am.
I had a sleep study done prior to pandemic around 2018/19 and it showed no sleep apnea at all. My neurologist tells me that my headaches divide into cervicogenic and aura migraine. I often wake with a bad hangover headache but assume this is due to my sleep position because my bed head is so raised for reflux and I slide off my old tempura pillow down the bed so neck is then unsupported. I have MRI confirmed arthritis in my C5-7.
My neurologist blames arrival of aura migraine on my neuro vascular disease (SFN and EM) and on Sjogren’s dry eyes and sinuses. She says many Sjogren’s patients acquire migraine and I do notice that posts about headaches annd insomnia are extra frequent on Sjogren’s platforms. So for me it’s a neuro manifestation of Sjogren's disease and has noticeably improved since I had my first Rituximab infusions. I don’t know if any of this helps you much though xx
Thanks so much oldted . Your husband sounds so much like mine and I also hate prodding him but I hate to hear him struggling to breathe. Your neurologist sounds fab !!
I’ve got a tele appointment with rheumatologist next week to discuss starting MTX or mycophen so I’m sort of pinning hopes on that helping headache maybe .
Was your oxygen level all right? I had a study done for hallucinations. Didn't get any answers on that, but my oxygen leverls are seriously low. So I use the Cpap to get more oxygen. I think my morning headaches may be a bit better and I wake up during the night less which makes for less hallucinations as they only happen when I am awake. All quite strange. I also think my dysautonomia is part of the low oxygen. Sorry I can't be of more help.
Thank you so much pumpkin . I find the headaches so upsetting and so distressing especially as no one medically seems to care . I’ve had them pretty much every early morning now for 5 years . Every drug they give me makes them worse (apart from doses of over 7,5mg pred which I know isn’t the answer ) . Pot of interest does your headache subside when you get up ? Mine goes when I stand up for about 20 minutes . But if I went back to bed and laid down it would come back (worse so if I went back to sleep )
You’ve been a great help as I will start to monitor my oxy levels myself again with garmin. . I’ve asked for sleep study report so I can see pulse oxy and heart rate but they are ignoring me . Interesting you say about hallucinations as I get horrendous nightmares and I’m not even really asleep , if that makes any sense . Thank you for caring 💕💕xxx
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