sleeping tabs.

[Whymelord]

Hi,I've been to see my gp today,she prescribed a tab.to help me to sleep,can anyone please tell me if Promethazine is a suitable tab.will it exacerbate my RLS,thanks.

[SueJohnson]

It's a sedating antihistamine that is likely to make your RLS worse. But you can try it to see.

[Whymelord in reply to SueJohnson]

Thankyou SueJohnson,when I read up on the tab.i sort of guessed it would make my RLS worse, I will try them and report back.

[SueJohnson in reply to Whymelord]

Safe antidepressants are Wellbutrin and trazodone, both of which may make RLS better.

[Whymelord in reply to SueJohnson]

im in N.Ireland, would you know if I can get either of these on prescription here?

[SueJohnson in reply to Whymelord]

Wellbutrin might be a problem. It is prescribed for smoking cessation but can be prescribed off label for RLS. You shouldn't have a problem with trazodone.

[Whymelord in reply to SueJohnson]

Thankyou soo very much ,you are a great help,good luck and good health to you.

[Joolsg]

Is the pregabalin controlling your RLS? Can you not sleep because of RLS or is it "wakefulness"?

Zolpidem is a safe RLS sleeping tablet but you build up tolerance so it should only be used once or twice a week. I agree with Sue about promethazine. it usually makes RLS worse but you could try it and see.

[Whymelord in reply to Joolsg]

Thankyou Joolsg,I'm not taking Pregablin as I found them awful, I'm taking 1 Pramipexole and 1 or 2 cocodamol but not helping at all.i will try the promethazine, oh wouldn't it be great if I find they help.

[Joolsg in reply to Whymelord]

Sadly, until you're completely off the Pramipexole, the RLS will remain severe.

Once off it, if you felt awful on pregabalin, a low dose opioid might be a suitable replacement med. Codeine, Oxycontin or Buprenorphine

Hopefully you'll find a suitable combination of meds.

[Whymelord in reply to Joolsg]

I know Pramapexol is not a good Med.i have tried so many blooming stuff and nothing eases this nightly horrible feeling.i suffer from high blood pressure which won’t stabilise because of no sleep,I will try the promethazine and see if it helps,thankyou for your time and thoughtfulness.

[Joolsg in reply to Whymelord]

low dose opioids are highly effective if pregabalin doesn't help. I'm on Buprenorphine, like Shumbah and sleep every night with zero RLS

Read Shumbah's posts. She is RLS free, sleeping well and has stopped her Blood pressure meds as sleep has helped so much.

But first, you have to get off Pramipexole.

[Whymelord in reply to Joolsg]

oh my Lord,sounds like Heaven to me,I will read Sumbah's posts thankyou.

[Moonwalker1967 in reply to Joolsg]

Wooow, unbelievable! I have not had zero RLS or PLMD in decades! Lucky you

[Joolsg in reply to Moonwalker1967]

Shumbah posted about Buprenorphine in around 2020 on the forum. Several others are now taking it with the same incredible results.

As Dr Buchfuhrer says, 97% of his patients are RLS free with the right treatment and medication

[Reb0013 in reply to Joolsg]

Hi Joolsg, I am on no meds and have considered trying gabapentin. However, a few nights ago I tried a teeny tiny (maybe 1 mg) piece of buprenorphine and slept like a baby for 9 hrs without any RLS. The next night I took nothing - and still slept great without RLS. However, the 3rd night the restless legs were back and kept me up all night as it has for the past 5 nights. I'm now thinking I might ask for buprenorphine. I understand it is addictive and difficult to come off of just as gabpentin is. However, intuitively I'm leaning towards the buprenorphine because of the brain fog and cognitive changes most experience with gabapentin over long time use. May I ask what dosage of buprenophrine you started with and did you need to increase it over time.

[Joolsg in reply to Reb0013]

I notice from your previous posts that your iron and ferritin are low and you have sleep apnoea.

In your case, you could be med free by increasing your serum ferritin above 100, preferably 200. Have you been taking iron supplements & what are your levels now?

The Mayo algorithm makes clear that raising iron levels is now the first step together with eliminating meds that trigger RLS ( anti depressants, anti histamines etc)

Opioids are considered for severe, refractory RLS, where raising iron hasn't worked and pregabalin/gabapentin have failed.

In your case, your sleep apnoea may cause respiratory depression on opioid treatment so please ensure you doctor is aware before you take opioids.

Also look at the Massachussetts Opioid Study which shows low dose opioids are safe and effective for RLS and DO NOT cause addiction unless there's a previous history of abuse.

We all become Dependent on our RLS meds because without them our RLS is unbearable. But that's the same for other neurological diseases like MS, Parkinsons or epilepsy

Tolerance is uncommon on RLS opioid treatment and the Massachussetts study shows most people remain on the same dose for decades and do not have to increase the dose. Those with severe RLS will need meds every night so there is no need to consider withdrawal as we will be on them for life. Withdrawal is an issue with dopaminergic drugs because they are the one class of drugs that actually make RLS much more severe and the only way to reduce the severity is to get off them.

I suggest you hold off on starting Buprenorphine until you have raised your ferritin above 200.

Then you could ask for Buprenorphine if your doctor agrees, but 1mg is a VERY high starting dose. I'm not surprised you slept 9 hours!

Most people start at 0.2mg ( a fifth of your dose) and increase by 0.2mg a night. The average dose is 0.6mg.

I take 0.4mg and have done for 15 months.





[Reb0013 in reply to Joolsg]

Thank you for the thorough reply. You probably didn't see posts or perhaps I didn't share that I did have an iron infusion Jan. 2021. At that time my ferritin was 13 ng/dl and saturation was 16% ug/dl... other parameters were reflective of iron deficiency. Since the infusion my iron panel has been perfect - ferritin is 250 ng/dl. Blood work is picture perfect. Iron infusion decreased the restless leg symptoms about 60% - but did not resolve them completely.. I still have problems every night. Occasionally I'll go a week without any symptoms and can't for the life of me understand why. I have kept a journal of food intake, exercise, etc for the past 2 yrs now. All in all, I've fought taking meds... 3 yrs ago I was on ropinerole but once I learned of it's augmenting problems I backed off and finally stopped completely. Thank you for the info on buprenorphine; I have no history of drug abuse of any sort.

[Joolsg in reply to Reb0013]

That backs up what the experts say. Interesting that the infusion improved symptoms 60%. Read Kakally's posts. She needs her ferritin to be above 300 before she gets relief. She has regular infusions.

In the meantime you can take ferrous bisglycinate every other night to see if that helps. Maybe raising levels slightly would help give you 100% cover.

If you're in the US you're more likely to get Buprenorphine without trying gabapentin/pregabalin first. Here in the UK, doctors are around 10 years behind best practice and the UK guidelines still have dopaminergic drugs as joint first line treatment and opioids for refractory RLS

It helps to have a GP willing to read and learn and prescribe Buprenorphine on a trial basis.

Buprenorphine has been absolutely miraculous for me.

[Reb0013 in reply to Joolsg]

So expand further, the infusions (there were two of them spaced a week apart) lessened the intensity of the RL about 60% and the frequency maybe 10%. I am due to have lab work next week again to see if things are holding. Personally I am afraid to keep my ferritin much higher than the 250'ish range because of the possibility of iron precipitating into organs. My doctor hasn't said this; I have read to much on the toxicity of too much iron so that is my fear. However, after my infusion my ferritin shot up to around 750'ish range before it started to slowly decline over a period of about 2 months. My Dr. said this is the normal curve he expected from the infusion. When it was that high immediately after the infusion I was not cured... nor did I see much variation in my symptoms as the value slowly fell downward to the 250ish mark. I will be seeing a neurologist in Orlando Florida (end of November) who specializes in Movement Disorders... RLS is classified as such. I will discuss gabpentin vs buprenorphine with him as well as any other treatments on the horizon he might be looking into. Thks again!

[Joolsg in reply to Reb0013]

Good luck.

[Reb0013 in reply to Joolsg]

Thks, also forgot to mention that my sleep doctor sent me to a sleep dentist who only makes dental appliances designed for sleep apnea. I chose this route over the CPAP machine . I wear the appliance nightly and it helps tremendously.

[SueJohnson in reply to Reb0013]

Only some, not many experience brain fog and cognitive changes on gabapentin. But yes buprenorphine works well.

[Reb0013 in reply to SueJohnson]

Thks Sue

[Simkin]

if it helps you sleep let us know. I find all sleeping tablets make my rls worse.

[Mightily564]

I had the most awful RSL and palpitations with Promethazine but we are all different. You can only try them and see what happens.

[Whymelord in reply to Mightily564]

Hi,thankyou for replying, I took 1 tab.before bedtime last night,I had a horrible night,even today I still feel the effects of the tab.they are most definitely not for me.I was forewarned on this forum but like you say we are all different and so when we are desperate for some kind of ease we will give anything a try,I've been given some good advice on here so I'm trying to stay positive.

[Mightily564 in reply to Whymelord]

I am so sorry to hear that, I suffer with restless or fidgety feet and ankles and understand how you must be feeling. I do hope that you find something that helps you. Have you tried the Epsom salt baths before bed ?.

[Whymelord in reply to Mightily564]

Hi Mightily,it's seems no matter what I try nothing helps,I take gentle Iron,Magnesium Citrate, eat good food ie.no processed stuff,my gp doubled the strength of one of my BP tabs.yesterday,I had another restless,sleepless night so I'm up for trying anything, can you please tell me about Epsom salts

[Mightily564]

Hi there if you google Epsom salts it give you a list of benefits, one being Magnesium which you have said you take. I believe that by using it in the bath it is gentle.

Black & white

[Whymelord in reply to Mightily564]

thankyou,sadly I don't have a bath 🤭but I'm hoping that taking magnesium orally may help.

[Mightily564 in reply to Whymelord]

I hope it improves for you. Take care.