I have OSA along with my RLS. Since sleeping with a CPAP machine hooked up to my face is already difficult, adding worsening RLS to the mix has left me exhausted. Just wondering if any of you struggle with both conditions? My Dad had both conditions.....in his day there was no CPAP machine, and I remember him struggling to sleep and gasping for breath in a recliner chair. He also had jerking of his body, which I think was probably RLS. Poor Dad, I think lack of sleep contributed to his death at age 82. I don't want to end up the same. I am 68. I've read on this list about using opiates or opiate-like medications. I am on ropinerole, and I'm sure I am having augmentation as my symptoms are worse and begin in the afternoon now instead of just at bedtime. I plan to see a specialist I found on the RLS Foundation list of medical practitioners. I hope he can help me. This list keeps me going.....knowing I am not alone. Thank you all for your posts, please keep on posting about anything that helps. Cathy in Arizona
Anyone here have obstructive sleep ap... - Restless Legs Syn...
Anyone here have obstructive sleep apnea too?
Hi Cathy, it does sound like you are least beginning to suffer augmentation. If that's the case then possibly switching to another medication would help.
An alpha2 delta ligand might be a first choice. Opiates are possibly risky for someone with OSA because of the possibility of respiratory depression.
You can't just simply stop taking Ropinirole though, you would have to wean off it slowly.
Of course, you need to seek medical advice on this.
Thanks Manerva. What is an alpha2 Delta ligand....an example of a medication in this category? So I can ask for it when I see a specialist. Again, thank you
Cathy in Arizona
Oh I googled it. Appears to be a class of drugs used for epilepsy such as gabapentin. Do they lead to augmentation like dopamine agonists?
The main ones used for RLS are Gabapentin and Pregabalin. They are also used for nerve pain. They are significantly less likely to cause augmentation than a Dopamine Agonist. Some doctors now prescribe them rather than a DA as the first line treatment.
Unfortunately, I hear they don't work for everyone and they're not immediately effective like a DA, it takes a few weeks for them to take effect.
I was originally prescribed Gabapentin for nerve pain just over a year ago, but also found it helped with my RLS. I was taking Pramipexole at that time, I've now stopped taking it.
Thank you Manerva.
Hi Cathy. Yes , I too have OSA. I bought a CPAP machine, and it drove me nuts. Haven't used it for over a yr now. I get severe RLS attacks some nights, before bed. Like I'm having a seizere almost. My who body will fill with the urge to move, all at once. 25 yrs ago I try Sinimet, for about 3 weeks. Didn't help, and I learned it caused augmentation, so I stopped. This last yr, I have had relief, with Passionflower. It is a naturalpathic tinture you can buy at the health food store. It is a natural form of GABA. I take 35 drops, have a good 25 minute, hot shower, then go to bed. Many nights, it's the sleep apnea, and insomnia snacking that keep me awake now. I hope this helps. Research leaky gut syndrome and low grade inflammation and its affect on the brain.
Thank you Birdman 70. I know what you mean about the CPAP mask driving you crazy. I have learned over 14 years of using CPAP that I really need it in order to sleep through the night and not wake with severe headaches. But there are nights when I just remove the darn mask, at least for a few hours. Just to be able to move my head freely and not be tethered to the machine is a relief. I will try the Passion Flower extract. Thank you for sharing.
Your welcome. I hope you find some relief!!
Cut back on the ropenerol a little at a time and don't take more than 1 mg,break it into smaller pieces.
I had rebound trouble and just backed down on the medicine.
I don't have the daytime right now and it's not as bad as it was, I can sleep now
Thank you Blueeyes5265. I am taking the ropinerole in divided doses as my GP suggested. I take it in .05 mg increments, but still I end up taking a total of 2 mg before I finally get relief. I really wish I could take less, but after being on ropinerole for about 10 years, it just doesn't seem to work. I found a neurologist on the list of recommended doctors on the RLS Foundation website, and I will be seeing him. Hopefully I will get this under control.
Hi Cathy
I totally sympathise with you and your late dad.
I took a variety of prescription drugs which caused augmentation. I then had RL 24 -7 I didn't see anyway I could continue life, (I am now 61) with this condition.
I spoke to my GP, (I had read about Opiods helping). I was issued a prescription for Longtec and my RL is no more. The Longtec have save my life, literally.
The only thing is to remember to take only the prescribed amount and never overshoot.
I know that I will need to increase the dose sometimes, as my body gets used to it, (it hasn't happened yet and I have been taking the pills for a year). That is the nature of Opiods.
However I do think with constant research that other drugs will come on the market so that the change from Opiods can happen.
The main thing is that so one should have to suffer with severe restless legs, (and arms in my case), when there is treatment out there.
By the way have you read the study on RL on the RL foundation website?
Very best of luck and love
Jane in England
Thank you smilingjane. I am glad you are still smiling after dealing with RLS! I do visit the RL Foudation website often, but I'm not sure which study you are asking if I have seen. One on opioids perhaps? Another member of this forum suggested that opioids may not be the right choice for me due to my obstructive sleep apnea. I found a neurologist listed on the RLS Foundation website and I will be seeing him. I am very thankful for your reply and I will mention that Longtec worked for you when I see the doctor. I suspect he will order a new sleep lab study, as my last one was about five years ago. Although my RLS is getting worse, my OSA has remained stable and I am only on setting 7 for my CPAP machine. It has remained on 7 for 14 years. For that I am thankful.
Hello!
just reading through old posts.
I have recently read on this site about buprenorphine, Check it out if you haven't already. Kind of a semi -opiod. A possibly better option for RL sufferers that also have sleep apnea.
Hope you are okay?
Jane x
Hi smilingjane. I too have been prescribed Longtec in the past few months and find fair relief from RLS. However I developed Blood clot in a leg vein and am now having to take blood thinner (Xarelto) which has a side effect of making RLS worse. Hopefully I will be able to stop this drug in a few weeks and perhaps the Longtec will be able to do a better job. I take 5 mg in morning about 9.00 and 10 mg at 10.00 pm. I am interested to know how much you take and at what time. I would be grateful to hear from you.
Hi Jelbea
The GP started me on 5mgs every 12 hours. I realise that they want to start you on the lowest dose possible. That didn't work for me so 2 weeks later I started a 10mgs twice daily. I found that this worked but that it took 2 hours after taking the med before I could lie down and that my RL would start back up before the next dose was due.
We settled after a month on 15mg twice daily. I tend to take my evening dose around 6pm and the night time dose between 4 and 6am when I wake. It works well for me.
Do you mind me asking are you in the UK? I have read that there is a lot of resistance amongst GPs to prescribe Opiods.
The very best of luck and well done for getting a prescription that works
Jane 
Greetings. I have had sleep apnea for 15 years..and rls now for 2 years.
Best to work with Neurology.. they see lots of this..a good machine is really important for sleep spnea..
Catch the professor here. In webinar really good ingo for RLS..
Hi gfischer4. I also have had sleep apnea and have been on CPAP since 2005, so it has been 14 years for me. I have found a neurologist listed on the RLS Foundation website in my area. I suspect I may need another sleep study, and then hopefully a change in meds to help me regain my ability to sleep at night. Thank you for sharing that you also have OSA.
Hi Cathy, yes I too have both conditions. I have had a CPAP (actually mine is a BiPAP) for about 7 months. I love it! But it took me about 6 weeks to get used to it and changing to a different mask (I now use just the nasal pillow type instead of full face). I encourage you to make yourself wear it every night because OSA can cause health problems such as stroke, etc.
I took Ropinirole for 5 years and it worked great for my RL until 6 weeks ago when augmentation became a problem. I am now in the middle of switching from Ropinirole to Gabapentin and it has been rough because it takes a few weeks for the Gabapentin to help. I have started taking an iron supplement every morning along with B vitamins. I have cut out any alcohol which seems to be a major RL trigger for me. And an hour before bed I take the Gabapentin and magnesium. Also I take a product I found online called Nervestra. It seems to to give some relief almost immediately. I am not endorsing Nervestra, just saying it works for me. Lately I sleep maybe a total of 30 minutes one night, don’t let myself nap at all the next day, then I will sleep 8-9 hours the next night. Just hang in there Cathy and trust that you will find the right combination of medications and supplements to get rid of this horrible condition. Praying for you.
Thank you Blessings123. I will be seeing a neurologist I found listed on the RLS Foundation website. I am hoping he will help me find the right combination of medications, as you said. I have been on CPAP for 14 years. Most nights I do fine. There are some nights when I just get sort of claustrophobic wearing the nasal mask..I have just the triangle that fits over the nose, not a full face mask. I agree, it is a lifesaver. Thanks again for your insight.
Hi Kickininaz - sleep apnea might have other causes such as a deviated septum, allergies or side effects of drugs, and sometimes if you are hypothyroid or over weight the muscles such as the uvula relax and the air way shuts off. You must have painful memories of your dad in the same situation and this must increase your anxiety, So hope the specialist is able to see you and may be a referral to an ENT specialist would help breathing and respiratory function and help restless legs too. I had a deviated septum where the cartilage in the nose was blocked on one side and my sinuses needed draining so had the op . 80 percent of people have mal alignment of the nasal cartilage so serious cases are usually attended to.
Thank you hawaii60. I actually am hypothyroid, as well as overweight by about 30 pounds. I take levothyroxine for the hypothyroidism which originally was due to an autoimmune disorder called Hashimoto's Thyroiditis. My labs show that thyroid levels are OK on my current dosage. I did see an ENT originally, he was the one who diagnosed me with OSA. No deviated septum here nor any sinus infections. But I am overweight, and I know that losing weight could help with the OSA. Do you limit caffeine? I think I should stop drinking coffee. I am so tired during the day that I use coffee to keep me going, but it may be making things worse at night. Thanks for your comments, and for sharing. Cathy in Arizona
Hi yes I have sleep apnea as well as RLS and PLMD. I have both obstructive and central apnea so I need Bipap rather than cpap. It is I agree a damn nuisance to wear especially in hot weather but I put it on every night although I sometimes take it off in my sleep. My RLS hasn't got any worse since using Bipap, if anything it has improved as tiredness is a trigger for my RLS and I get better quality of sleep using the Bipap as I am not waking up gasping for breath all night! X
I also sometimes remove my mask in the middle of the night. But it is really important for me to wear it most of the time.
Hi Cathy.
Like others, I also sleep with a CPAP machine. I actually like it, as it keeps me from sleeping with my mouth open and drying my mouth out at night. I never used a standard mask, but got started from the outset with ResMed nasal pillows, which work quite well for me. There's an even newer approach now, which I believe is called DreamWear, that may work even better than nasal pillows.
I also suffer from RLS and have been able to mitigate it with kratom. Before kratom, I used oxycodone, and that also worked, although the kratom works better for me. Without one or the other, trying to sleep with the CPAP - or even without it - would be almost impossible. I did go through the process of dopamine agonists, and found that they either didn't help, or eventually made the problem worse. In my experience, pramipexole in particular was very difficult to withdraw from once I was on it.
I hope you're able to find some approach that will work for you. As you can see from the number of replies, you have a whole team of allies here who understand how challenging this is.
All the best,
Doug
Doug, I have Kratom, given by a friend,, but I have no idea how much to take. What would you suggest?
Hi Grandpianoman.
My first suggestion would be to ensure that it's pure kratom from a trusted vendor and contains no added ingredients. I mean no offense to your friend. It's just that there have apparently been issues where people have been sold kratom that was tainted with other ingredients. Assuming it's pure, I'd check next to see if it's a slow, medium, or fast strain. As you may be aware, different kratom strains produce different effects, ranging from calming to stimulating. In my personal experience, the slow strains have worked the best, as they can help relax the body.
Then, I would start with a very small dose, such as 1/8 to 1/4 teaspoon. (I mix mine in hot water with a bit of vanilla and sweetener.) Then wait an hour or so and gauge the impact. If the effect on your RLS is not enough, then I would slowly increase the amount, probably in increments of 1/8 to 1/4 teaspoon until you feel some relief. It requires some careful experimentation to find the optimum amount that works best for you. The ideal dose is the smallest amount that will mitigate your symptoms. The effect will likely last about 3-5 hours, although this can vary.
If kratom works for you and you decide to use it further, I suggest rotating strains so as to avoid (or slow) the development of tolerance.
I hope this is helpful. Good luck on your journey!
Best,
Dougg
I am 67, and also am plagued with OSA and RLS, I'm also, claustrophobic and have chronic insomnia.
I'm certain that my mother and father,both had OSA and mom had RLS
In any case, it's miserable living like this and the only thing that works for me,is Tramadol, with a pinch of ropenirol and 1 mg of Xanax
I can't sleep without them
I tried stopping and was awake for 5 days and nights
At this point I'm sleeping.
I have dry mouth and no energy 😭, which I hate because I'm Bi-polar and ADHD,,gone undiagnosed until 50 yeas old. My Dr didn't even know much about RLS, I had to read up on my own.
I have played with the augmentation and just backed up to a lower dose of ropenirol and I seem to be okay except I don't have any energy 😭..
When my mom died, I walked into the room and she was laying there with her mouth open, like she had simply stopped breathing.
However, she had previously had a pig valve put in her heart and was very unhappy with it and didn't like taking pills.
So, I can see by the things I have read here, it's possible that she just stopped breathing.
The 1mg Xanax,calms my anxiety, but doesn't make me sleepy, it's the combination of the Xanax and ropenirol together, that puts me to sleep, without it, I'm miserable and I know I'm not addicted to Xanax because I only take that one 1mg,at night and it's at least 12 hrs or more in between
If the RLS gets started, Tramadol stops it pretty quick but without this concoction, I would have thrown in the towel, I was just wishing life would end
I guess I need the Bi-pap, because that's what I was on but couldn't tolerate the mask.
I have recently found a nazsel , that I may be able to tolerate, but had a problem with the Dr and never went back to get the machine.
He wanted me to drive over two hours to see him, just to tell me about what I already knew when, he could have sent the order to a close established place where I live and I have felt so bad, I went to my appointment,a day early so I refused to go back the very next day and told them if they couldn't order the machine locally, I wasn't coming back.
I've been thinking about going back to sleep study close to home, since I've found this new mask, but haven't done it yet.
I have other health issues also, and I guess I'm just wore out with Drs
I'm sorry you are having problems getting quality sleep. I also sometimes feel claustrophobic when wearing my CPAP mask.
I've been thinking about seeing a doctor about the new Inspire sleep system but since it is fairly new I am waiting to see if serious side effects will come to light as more people use it. Also I don't know what it costs.
The part I like is that it treats apnea without a mask or hose. No CPAP machine . I've sent the link here.
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