Rock and a Hard Place

[grandpianoman]

After 45 years of various RLS drugs and a little over a year of taking 3 different opioids, I have developed breathing issues--"respiratory depression"--one of the side effects listed. I simply stop breathing multiple times during the night--oxygen "desaturation events." I don't know if that is related to the heart pressure I'm feeling---a heaviness in the center of my chest, but I suspect it is. I will be going for a sleep study soon to investigate further, but... I seem to be out of options. Belbuca (buprenorphine) is said to be a "much safer" opioid with far fewer side effects, but ... one of its side effects is breathing issues. I do not know where to turn, because without the drugs, as all of you know, one doesn't sleep! And yet, if I take any RLS drug, it may bring on my death--especially now that I am showing such symptoms. I wish I knew of herbs strong enough to override the relentless restlessness that prevents sleep. That seems to be our only long-term hope. Any feedback would be appreciated. Maybe one or more of you has had this experience and lived to tell about it. Blessings to all my fellow sufferers.

[Joolsg]

Oh I feel your frustration & desperation. Opioids are last line treatment but respiratory depression is a serious side effect. I presume you’ve been through the Dopamine Agonist route & augmentation? Did pregabalin or Gabapentin not help?

I can only suggest making sure you’re not taking any meds that worsen it (anti depressants & anti histamines) & avoiding any food or drink triggers.

Have you checked serum ferritin and serum iron levels? Raising them can dramatically improve RLS for 60% of sufferers.

Is cannabis a possibility? It’s now legal in the UK but we have to pay (about £80 a month). Link below.

drugscience.org.uk/twenty21...

I wish I could offer more help.

[Sampsie]

Hi Grandpianoman,

This question came up on a webinar with the RLS Foundation and the reply was to not give up hope, and get an informed consultant because they will go back to the drawing board and look at different drug combinations not tried before for you.

Where are you based? What about emailing Dr Buchfurher for some advice? It is free and people in our community say he always replies. Do you have a specialist looking after you?

Also, do you have any other health conditions that affect your breathing? For example, if you have asthma is it under control? Do you have allergies that cause breathing problems? Etc. You may well have already looked into these things, but just in case.

[grandpianoman in reply to Sampsie]

Thanks for all your suggestions and areas to check. No lung or breathing issues prior to this rather sudden onset of serious symptoms. Have a call in to medical clinic now, but know I'll be dealing (again) with someone who knows very little about RLS. As I wrote earlier, to control my anxiety, which may make my condition worse, I must put this in the Lord's hands. Signing off for now, but hopefully not forever. Blessings to all of my fellow-sufferers.

[LotteM]

Difficult situation, grandpianoman. I feel for you. Others have already given you some suggestions. We always need to know there is light at te end of the tunnel, and that may be difficult to see for you right now.

Although it is illegal in the UK and in some states of the US, maybe as a last resort you could research kratom? Like opioids, it works on the opioid-receptors in the brain. And like buprenorphine it is a partial mu-agonist and delta- and kappa- antagonists. But it is not an opioids, but contains a series of alkaloids (mitragynine and derivatives). The site americankratom.org has good and interesting information.

Good luck. You need it.

[Parminter]

Grandpianoman, Have you measured your oxygen saturation? Unless you have a number, you cannot be sure what is happening.

Do you sleep on your back? If so, try switching to your side.

The chest heaviness you describe can, at least in part, be a result of extreme anxiety.

If you have to wait more than a few days for your sleep study, buy yourself an oximeter. They are not too expensive, and the market is awash with them since COVID appeared.

Otherwise, if your fear is as great as it appears to be, go to the emergency room, your symptoms warrant it.

[grandpianoman in reply to Parminter]

Thank you, Parminter and others, for your generous support. I love you all--and I mean that. We need each other and are there for each other. That means so much!

I am still alive, thank the Lord, though several times I was not sure I would be by morning. I did go to the ER because I was again afraid to go to bed, lest I have either a heart attack or simply stop breathing due to what is likely central sleep apnea. An oximetry test shows I have "desaturation" events up to 15 times per hour--sometimes O2 levels down to 50%. I simply stop breathing for unusually long periods. Often I wake up, aware I wasn't breathing, and take many deep breaths but inevitably fall back asleep due to the opioid I'm taking. Unfortunately, I see that with all opioids, there is a risk of "respiratory suppression/depression." Tag, I'm it. Others may have escaped this side effect, but I haven't. I am now awaiting a call for a sleep study to get more specific data, but will probably end up with nighttime oxygen (CPAP), for which I would be grateful, since I'm not getting it on my own. And I have no other issues like asthma or ..., so I'm pretty sure the opioids--and dopamine agonists for 4 decades--are the cause.

Concerning my heart, the chest pressure in the center of my chest used to wear off during the day, but it got to the point where there the pressure was constant, day and night. I was very worried that the low oxygen had taken a deadly toll on my heart. I called a local clinic after hours, and was advised to go to the ER, which I did. Amazingly--this was early evening, around 7:30-9 pm--my O2 level was consistently 98-100, and my heart beat perfectly, and an x-ray showed no problems at all. And yet I still had the distressing pressure. The diagnosis was inflammation of the cartilage joining ribs to breastbone. How or why that happened, I have no idea. The literature I was given says it could have been a blow to the chest (I would have remembered that, I think) or lifting heavy objects (that's possible), intense exercise (no, just a lot of outdoor physical work), or coughing/sneezing a lot (nope). And it often occurs during times of emotional stress. Imagine that! The pressure persists, but I am no longer so worried about going to bed and dying quietly during the night.

So ... that's the update. Blessings to all of you.

[Hidden in reply to grandpianoman]

The usual treatment for central respiratory depression is the removal of the cause.

If yours is caused by opioids then your use of them will have to he changed. This is your rock and hard place.

CPAP is usually used for obstructive sleep apnoea to keep the airways open and may not work for central apnoea.

[grandpianoman in reply to Hidden]

Thanks, Manerva. I much appreciate your feedback. You have assessed my probable situation quite succinctly: rock and hard place. I will know more after sleep test, which I hope can take place soon. I don't want to give up hope that there is a reasonably sustainable solution out there somewhere.

[Parminter]

Thank you for letting us know.

I'm so glad you went to the ER.

I have an acquaintance who had to go on to a CPAP for similar reasons, and her life changed very much for the better. She bounds with energy now - I hope you do too!

May I ask how many many mg/mcg of buprenorphine you are using? And is that your only RLS med at present?

[grandpianoman in reply to Parminter]

Well ... I don't know how many mcg of buprenorphine I'm taking because even though Belbuca film was prescribed for me on Monday (75 mcg), it is now at the end of the day on Wednesday and I'm still calling the doctor who prescribed it and the insurance company which should fund most of it to find out why the pharmacy is still waiting for "prior approval." While I'm waiting for the prescription to be filled, I am shaving off "powder" from a mistakenly-prescribed 8 MG tablet and surviving on a tiny amount of the powder, since I don't want to go back to oxycodone. The buprenorphine is that much better! It is the only med I take for RLS. I guess I am fortunate in that respect. However, as Manerva pointed out, if "respiratory suppression" is the side effect of opioids for me, then ... I need to go off them. I don't know what my options are, since opioids were my last resort. Have been through dopamine agonists and can't handle pregabalin or gapabentin, and kratom also has respiratory suppression as a possible side effect. I wonder if anyone has found relief via significant doses of homeopathics as well as leg massage pad. And, I'll add, lots of prayer. And if all fails, then I may have to combine an opioid with CPAP, but that's IF CPAP will work with central apnea. My situation is quite unsettled at the moment; hopefully, the sleep study will answer some serious questions. Am still waiting to get scheduled for that, too. Blessings to all. I'll keep you updated.

[grandpianoman in reply to grandpianoman]

A question for anyone from grandpianoman: Is quinine safe and effective for RLS--as in quinine water or some other form I don't know of? In case I need to stop taking opioids, which is possible, I am already searching for something--anything--to deal with the symptoms.

[involuntarydancer in reply to grandpianoman]

I feel for you gpm, it is really scary when the drug options seem to be running out. Unfortunately (or maybe fortunately), it appears that quinine has NO positive impact on rls. It is now considered a dangerous substance and I believe it was recently banned in the US on account of the number of deaths attributed to it.

There are any number of suggestions made by posters on here of options that have worked for them and I would not give up hope just yet. Dipyridamole, ldn, kratom, any of the various diets which have their passionate advocates (wahls, vegan, low-oxalate, ketogenic etc), the various massage and stretching techniques etc may all be worth a try. I find kratom very effective and I understand that it is not considered to cause central sleep apnoea in the same way as opioids which might make it a good option for you. Good luck.