Looking for advice, yet again, please. - Restless Legs Syn...

Restless Legs Syndrome

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Looking for advice, yet again, please.

Mulberry100 profile image
15 Replies

I had an appointment to see my GP today regarding high blood pressure. I have been taking 10mg Ramipril for some time but recently BP has been high and erratic. Apparently, I cannot go to a higher Ramipril dose, therefore, need to change. I’m aware that some BP medication can interfere with RLS, so I am asking those of you very helpful and knowledgeable fellow sufferers for recommendations.

As I have been having the most terrible side effects from Oxycodone I seized the chance to discuss a trial of Buprenorphine. What actually happened was GP asked, as I walked through the door, how I was getting on and I just burst into tears! I am very blessed to have a GP who is very sympathetic and listens to what I say and admits I probably know more about RLS than she does. She agreed to let me try 0.2 /0.4 Buprenorphine tablets, however, when she attempted to arrange a script, she was blocked! She has promised she will investigate and contact me. She is also referring me back to Neurologist I saw a year ago, who agreed that Buprenorphine, used appropriately in RLS, seems to have much less opioid side effects that other opioids. I feel I have exhausted absolutely every other avenue, so praying that I may, at least be able to trial Buprenorphine, which seems to be so beneficial to so many. Should I be so lucky can, maybe Sue, Jools or any other of you so helpful and knowledgeable folk, advise whether I would need to slowly come off the Oxycodone before starting with Buprenorphine?

I am so very grateful to everyone on this site for the enormous support. Thank you.

PS I also take 100mg Levothyroxine, 70mg Alendronic Acid (weekly) and 10mg Rosuvastatin.

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15 Replies
SueJohnson profile image
SueJohnson

Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran), Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor.

Jumpey profile image
Jumpey in reply to SueJohnson

I really hope that the trial goes ahead for you. I have taken felodipine, a calcium channel blocker, for many years with no adverse affect on my RLS. By the way, statins are known to worsen RLS. It could be causing your problems.

SueJohnson profile image
SueJohnson in reply to Jumpey

I think you meant this reply for Mulberry. You might want to repeat it as a reply to her so she will be notified.

Mulberry100 profile image
Mulberry100 in reply to Jumpey

Thank you. Unfortunately, I heard fromGP this am saying she is unable to prescribe Buprenorphine! She is referring me back to Neurologist I saw a year ago in the hope they may prescribe it, may have a long wait for appointment though.t

Mulberry100 profile image
Mulberry100 in reply to SueJohnson

Thank you for your reply, I will discuss your suggestions with my GP. Unfortunately,I received a text from GP this am saying she is unable to prescribe the Buprenorphine we were both hoping for! She is referring me back the Neurologist I saw last year who seemed to approve of Buprenorphine, when all else has failed. I may have a long wait for appointment, but have to remain hopeful. Meanwhile, I’m considering coming off Oxycontin and going back on Tramadol, Gabapentin or Pregabalin as none of them had such awful side effects. Would I have to wean right off OxyContin before starting any other medication? Many thanks again.

SueJohnson profile image
SueJohnson in reply to Mulberry100

You should wean off oxycontin before starting tramadol but it is not necessary for gabapentin or pregabalin.

Mulberry100 profile image
Mulberry100 in reply to SueJohnson

Apologies if I have already replied, pretty hopeless at all this IT and precious little sleep doesn’t help! Thank you again for your reply. I’m thinking I will go back on Gabapentin as I already have a supply of 300mg tablets. I was previously taking 1800 split into 600 x 3. Would I .to begin with, stay on the 15mg OxyContin (currently 5mg x 3 - 4 hours apart) and introduced the Gabapentin in increments of 300mg? I apologise for so many questions.

SueJohnson profile image
SueJohnson in reply to Mulberry100

No need to apologize. That is what we are here for. Yes you can do that.

Mulberry100 profile image
Mulberry100 in reply to SueJohnson

Thank you

Strike26 profile image
Strike26

This is purely a personal response to one of the meds Sue mentions, Propranolol. At the lower dose I found it useful. For various reasons my doctor increased it and it affected my mental state significantly and adversely. I had read the contraindications section but didn’t register they were happening to me until I reached a crisis point- I came off it straight away and despite some withdrawal I felt much better, literally within hours. I should emphasise that I have had a similar experience with another med a few years ago- at a low dose really good, but the reverse when it was increased. My advice- read the leaflet carefully with everything and make sure a partner or close friend does the same and watches your reaction, if any. The trouble with RLS is we have to try a lot of meds generally, before we find the right one- and on that, I will thank Sue for the umpteenth time for suggesting Gabapentin- not perfect, but soooo much improved.

Munroist profile image
Munroist

This past post might be useful

healthunlocked.com/rlsuk/po...

Joolsg profile image
Joolsg

I've been away for a week, sorry for delay.You can switch straight from Oxycontin to Buprenorphine. I did.

Buprenorphine is red listed in many UK health areas and only a specialist can prescribe and monitor. I suggest you ask your GP to send an urgent email asking the neurologist to prescribe 0.4mg Buprenorphine.

However, Buprenorphine does have side effects as well. Nausea, sweats, anxiety etc, but you won't know until you try it.

Cut a 0.4mg tablet in half to try 0.2mg for the first night. If it doesn't stop all RLS, try 0.4mg the second night. I do brilliantly on 0.4mg but many need higher doses. The average is 1 to 1.5mg, the max is 6mg.

For the nausea and vomiting, I used my medical cannabis oil with 20%THC. It stopped the nausea. Kwells or zofran are RLS safe for nausea.

For the opioid induced anxiety, I take 25mg pregabalin and it stopped panic attacks within a day.

For opioid sweats, I find a 5mg cetirizine anti histamine really helps.

I do hope you manage to find a med that works for you soon.

Mulberry100 profile image
Mulberry100 in reply to Joolsg

I am so grateful for your reply, hope I’m not repeating myself as I have a habit of losing what I have typed and it just happened again! I will be seeing my GP again when she returns from holiday and will ask her to email the neurologist. I’m not expecting miracles, but feel I must give Buprenorphine a try as it feels like my last hope! Apart from the OxyContin I have not suffered too many side effects from all the other drugs I have tried, they have just stopped working! I’m 76 and have had RLS since my early 30s and would love to have a few years without this torture. I think it was about 25 years ago that I was prescribed the Neupro patches so I’m aware of the damage they caused and the augmentation I suffered is something I’m terrified of! This site is amazing and it is wonderful to read of the successes that you and others are having by persevering and knowing there is a drug out there that is helping.

Joolsg profile image
Joolsg in reply to Mulberry100

I was very reluctant to try Buprenorphine as I was terrified it wouldn't work and it was my last option.It did literally save my life as I had decided my quality of life had become so poor on Oxycontin and pregabalin, that it really wasn't worth carrying on. I wasn't depressed, just logically realistic.

It worked completely the first night. Zero RLS and I slept 8 hours for the first time since around 2012.

The nausea and panic attacks were awful but I was determined to find a solution and cannabis worked for nausea and pregabalin worked for the panic attacks.

As your neurologist has already said he would consider Buprenorphine, then that is very, very encouraging.

Mulberry100 profile image
Mulberry100 in reply to Joolsg

thanks again, I’m pretty much now where you were pre Buprenorphine. So pleased it’s working for you and others, gives me hope.

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