RLS update

[Ephemera]

Well 3am and husband still awake, still pacing. Been a week now on 1200mg Gabapentin (2 x 600) and a 0.5mg Buprenorphine patch. No change, having to take a sleeper Loprazalam every other day to get a few hours sleep but that does not work very well. What next !!

[Jelbea]

Sorry to hear of ungoing torture. I cannot comment about the Gabapentin but I certainly feel that the patch is not strong enough. They come on 5 mcg, 10 mcg, 15 mcg and 20 mcg. I was on 15 mcg for some months and at the start it worked well. Eventually the patch was only lasting about 3 days instead of 7 and my skin was beginning to flare up with the adhesive. I changed then to Temgesic (buprenorphine) sublingual but did not have as good a response as many others and I am now back on to oxycodone.

I really do think that an increase in patch would be better than having to take the Lorazepam. Or perhaps you could persuade the doctor to change to the sublingual buprenorphine.

I hope you can get some more much needed help.

[manuelaguzman in reply to Jelbea]

I have had RLS for two years and lately been taking Ropininrole 2 mgs at night plus 200 mgs Gabapentin plus .05 Valium. I have now added Bacoflen 10 mgs at night. Has anyone with RLS has any experience with taking muscle relaxant Bacoflen 10 mgs at night?

[Joolsg]

I'd repeat my previous advice. 5mcg patch is too low and pills are better than the patch as the patch is better for 24/7 pain. Ask for a switch to 0.4mg Buprenorphine pills at night. Average dose is around 0.5mg but many people need higher doses. Some are on 2mg a night.

[Ephemera in reply to Joolsg]

Hi, just spoke to GP about changing to tablet and she says it can only be prescribed by a neurologist even on repeats. Is this correct in your experience?

[Joolsg in reply to Ephemera]

No. Any GP can prescribe Buprenorphine 'off licence'. They are then at risk of action if anything hoes wrong. Most prescribe gabapentin and pregabalin 'off licence' for RLS.Your neurologist has already approvec Buprenorphine in patch form.

You're simply asking for a switch to pills.

Many GPs have an irrational fear that their patients will abuse pills by taking more than prescribed.

So, you either argue your case with your fearful GP and ask for just a week at a time to prove to him You're not going to take too much, OR you call Dr Dhanjal and ask him to tell the GP to give pills.

Luckily my young, female GP was very understanding, read the opioid study I sent her and gave me a 3 week trial

She now tells other GPs in the surgery how effective and life saving it has been for me.

I'm not addicted, don't get any 'high', and have never taken more than the prescribed dose of 0.4mg.

It's incredibly annoying that RLS are paying the price of over prescription of opioid pain killers for pain in the last 10 years.

I hope your GP will read the Mayo algorithm and the Massachussetts Opioid RLS study again.

You should also consider legal action against the doctors who misdiagnosed and mistreated your husband by giving him enormous doses of dopaminergic drugs and leaving him with severe RLS.

[Ephemera in reply to Joolsg]

Morning. GP will only give 1 week of 0.2mg Buprenorphine tablet. Cannot get to speak to Dr Dhanjal or our NHS neurologist for a while. going up the wall here. Any other ideas????😪

[Joolsg in reply to Ephemera]

That's outrageous. They clearly refuse to take risks without the backup of Dr. Dhanjal.I suggest your husband takes 0.2 at 9pm and 0.2 just before bed. If it works, call GP the next morning and insist on more tablets. Put it in writing and attach a link to the Mayo algorithm showing the effective dose is 0.5 to 6mg.

I suspect your husband will need around 0.6 or 0.8mg each night.

Consider a formal complaint.

It's unacceptable that a misdiagnosis has caused RLS for your husband and they now refuse to treat him properly.

[daisydaisy26]

Can you ask for Clonazepam? My mom uses it, when nothing helps, and it works every time, takes about an hour, just 0.5 mg, rarely 1 mg. You should of course consult your doctor, so far for us it's been very helpful.

[SueJohnson in reply to daisydaisy26]

She said clonazepam put him in the hospital.

[Katyparis]

Hi from Albany Western Australia. My heart goes out to you as I know this hell when others are sleeping. They say our sleep time is when our body heals but what the heck can we do to heal ourselves if sleep is hard to get? I am slowly weening of Pramipexole after 20 years & takiny Pregablin but its a very rocky road so far and I feel so battered and abused by these symptoms. Are you prescribed anti depressants? You would know that these make symptoms worse. I have only just discovered TMS ( Transcranial Magnetic Therapy. Our medical centre has just brought the machine. I had never heard of it before.It is proving successful in 80% of depression sufferers as an add on treatment.

I had used antidepressants for 20 years so I am undergoing TMS to hopefully reduce or cut out my SSRI antidepressant meds. This is in my view an experiment by me to see if my RLS will be less traumatic if I can stop the antidepressants but I am still not setting my hopes too high as RLS is a monster. All the very best to you.

Please ask me any questions as I wrote and published a medical book in 2017 with support from my doctor. I cannot give advice or medical information as I am just an ordinary lady without degrees.

[Canterberry in reply to Katyparis]

Please let us know if it helps your RLS

[Hidden in reply to Canterberry]

Bear in mind, TMS for depression targets different parts of the brain to TMS for RLS. I have had TMS for RLS.

[Canterberry in reply to Hidden]

Did it work?

[Hidden in reply to Canterberry]

In a word, no.

healthunlocked.com/rlsuk/po...

Another member Arjiji (sp?) had good results from rTMS.

[Canterberry in reply to Hidden]

Thank you. Someday we will find something that truly works!

[Simkin in reply to Katyparis]

I agree. I am sick of EVERY health article I read saying "our advice is to sleep 7 to 8 hrs a night to keep fit& well & have a longer life".How we wish ....

In my experience as well the older I get the worse the symptoms.

I could cope with the off & on effects of RLS in my 30s but it is the night after night after night of RLS in my 70s which is wearing beyond belief.

[SueJohnson in reply to Katyparis]

SSRI antidepressants make RLS worse or most. There are 2 antidepressants that are safe for RLS - Wellbutrin and trazodone.

[MamaBear44]

Has he had his blood thoroughly checked? Iron panel? You’re treating the symptoms with painkillers and nerve disrupters but if he’s deficient in a key nutrient it will never get better until that underlying cause (low iron? Low magnesium? Etc) is addressed. We cured my son’s RLS with daily supplements (and water and exercise!) and he’s off prescriptions now. Wish you the best of luck!

[Ephemera in reply to MamaBear44]

Hi, yes had his iron checked, all ok. Have tried magnesium but not worked. Speaking to doc later and hope they increase dose of buprenorphine and convert to tablet from patch.

[Hidden in reply to MamaBear44]

Hi MamaBear, I have been thinking about you. My son is 24 and moved out last June 🥵, but I worry about him everyday so I can kind of imagine how painful it is to see your son suffer. Are you still giving him the 5htp? Does he take the ferrous bisglycinate before bed -an hour or so? Any other vitamins? Lastly, is the RLS completely at bay?

[Jelbea]

Hello again. I see your GP has stated that the buprenorphine tablets have to be authorised by a neurologist and even repeat prescriptions have to come via the neurologist as well. In my case Professor Matthew Walker from London prescribed the tablets for me and wrote to my GP accordingly. She reluctantly allowed me to try them and she also gave me repeat prescriptions without applying to Prof. Walker again.

I think on the whole many GPs are very reluctant to co-operate in giving opioids of any sort, but this seems especially true of buprenorphine sublingual tablets. I think they often spin a yarn that they cannot do this. However, if your husband's neurologist supported the changeover then the GP would probably agree.

I wish you both well. It is so hard watching someone you love suffering in such a way and also you are obviously suffering very much as well with sleep deprivation etc. I hope you can get a quick resolution to this. Perhaps as a first step you could get a stronger patch and then work on getting the tablets. At least that way you would know if a larger dose of BUP would help.

[CookiePooki]

I m so sorry. I totally understand. My Did have me clonazepam but I was useless for two days..so sleepy, but it did allowed to finally rest . I'm in the United States and have an understanding doctor. I do finally have relief by taking two at a time 50 mg tramadol. I pray that she will be able to prescribe this medicine because do far it's the only thing that allows my legs to be more quiet however my legs are not always quiet. This syndrome is such a nuisance especially when you can't sleep. The worst for me was for three days when I only got six hours of sleep. The way I'm taking the tramadol now has given me much quieter legs and arms, although my arms have been much more active than ever, but I just shake them until they are not tingling. It seems there's not a good remedy that works for all. Just keep praying for relief. God created us and He can give relief if it's in His plan. To God be the glory.