Nowhere else to go

[Whymelord]

Hi everyone, I was taking Pregabalin for some time but it did not help me,I went to see my gp recently as I wanted to discontinue Pregabalin. My particular surgery are vehemently against this medication for RLS,I feel utterly helpless and hopeless now as I'm sick and tired of trying everything but nothing helps.my gp suggested she help me wean off Pregabalin but guess what advised Pramipexole for the umpteenth time.as I'm desperate I took the prescription but just don't know what the heck to do now,no sleep,panic attacks,severe Tinnitus, burning feet and legs nightly itchy blurred eyes(trying eyedrops)should I ask to be referred to a private consultant or would that be just more of the same, I feel that this last year or so have been unbearable and with no hope of a gp helping, thankyou for listening.

[LotteM]

I am so sorry to read your post. As I am not in the UK, it is difficult to advise. However, I do know that there are several specialists in the UK that more or less adhere to the Mayo Clinic paper recommendations for RLS. Joolsg and Kaarina have the best overview. If you let them know where you are based, they may suggest someone near you, if available.

Meanwhile, don't give up. As an ultimate (self-)medication, you could either try medical cannabis (Joolsg has written several times about how to obtain that) or kratom. The latter can be ordered from The Netherlands. I mainly use kraatje.eu. Red vein borneo os the first to turn to. If you go that route, mske sire to buikd up slowly and rotate strains.

I hope others chime in quivckly and more helpfully.

[Whymelord in reply to LotteM]

Thankyou LotteM for your prompt reply, I'm in the North of Ireland (Derry)as it happens I do have a very good friend with some serious illnesses, she uses prescribed cannabis and would certainly help me out.Can I just explain that I decided to come off Pregabalin myself as it was not helping me in any way so I cannot blame my gp for that but the fact that she prescribed Pramipexole AGAIN ,I'm sure she is aware of augmentation, I haven't started taking the Pramipexole for obvious reasons.Any help and advice is greatly appreciated 🙏

[Nightwalker6 in reply to Whymelord]

Hi Whymelord,

If you have never taken a Dopamine Agonist before then it is possible that it may help you. Your GP would need to monitor closely for signs of Augmentation &/or compulsive behaviours.

I took it for 10 years with few issues prior to beginning the augmentation process. Then, of course, it was pretty difficult. Would I do it again? I don’t actually know. But I would be much more aware of what to look out for and avoid increasing the dose etc.

For me it had far fewer side affects than any other medication I have been offered except perhaps CBD oil. However the CBD oil doesn’t fully treat my symptoms & of course it’s very expensive.

Good luck and I hope things get better for you.

[Wanted-sleep in reply to LotteM]

cannabis and kratom stack = near 8 hours uninterupted sleep (bladder not withstanding)

(kratom is gross and it works)

[SueJohnson]

You are smart not to take the pramipexole. Did you try the pain clinic I recommended in Dublin? Did you ever ask your doctor for your ferritin number? Did you ever try switching to gabapentin? Did you ask your doctor for buprenorphine which is really your best choice now or try increasing the co-codamol? Were you able to change from the medicines you were taking that make RLS worse - the sedating antihistamine, omeprazole, the high blood pressure medicines?

Kratom and other opioids can cause adrenal fatigue Ask your doctor to test all adrenal hormones, particularly testosterone and DHEA if you go that route since you have kidney disease.

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[Whymelord in reply to SueJohnson]

Thankyou SueJohnson for your reply,sorry but I haven't tried the pain Doctor you suggested,I don't take Omeprasole now,my BP will not settle to a safe reading so I'm being monitored fortnightly, my gp has changed my BP meds from Losartan to Irbesartan150mg.plus 1 Lercanidipine daily,this is only my second day of switching so hopefully will work.Each time I discuss treatment for RLS with a gp there is never a mention of any other tabs.other than Ropinirole or Pramipexole thats it.I do take 2 co codamol at night so maybe I should up the dose earlier on in the night as I definitely feel there is very limited help from my gps.Ive been feeling soo tired and anxious lately and the fact that a talk with a gp never gives me hope.

[SueJohnson in reply to Whymelord]

Lercanidipine is a calcium channel blocker and they make RLS worse. Can you persuade your doctor to switch to ace inhibitor or better yet to propranolol.

[Whymelord in reply to SueJohnson]

Hi Sue,when the gp changed one of my BP tabs.through the week he said to keep taking the Lercanidipine along with the new Irbersartan for one week while monitoring my BP at home,then if it stableised I should stop Lercanidipine so I will do what he suggested but will definitely take your advice re.asking for an ace inhibitor. Wouldn't you think that my gp would check the meds he is giving me knowing full well my RLS history,AAAAH.thankyou.

[Joolsg]

I'm so sorry to hear this. Have you messaged Jelbea? She is in N. Ireland, but has been seeing Professor Walker at Queen Sq by phone appointment.You could email him. An NHS appointment will take over a year, but a private call would be much sooner.

Pramipexole is really not a good idea. It's no longer first line treatment because of the high rates of Augmentation.

If pregabalin hasn't been covering your RLS, opioids may be better. A specialist at a Sleep Clinic or a neurologist would decide which opioid would be best for you, particularly considering your kidney issues.

[Jelbea in reply to Joolsg]

Hi Joolsg - I did get in touch with Whymelord some time ago and told her about Prof. Walker. Here in Northern Ireland I have not heard of one decent neurologist regarding RLS and anyhow the waiting list is now three years. I was told this by my GP ten days ago.

[Joolsg in reply to Jelbea]

The NHS is truly broken. I know there's a shortage of neurologists, but 3 year's wait is outrageous.Other neurological diseases have treatment protocols- you have to be seen by a neurologist within a short time frame. It just proves that RLS is regarded as a minor inconvenience by medics rather than a serious disease with the highest suicide rate of all neurological diseases.

[Dotmowatee]

I am in the UK. I saw a consultant privately and he advised me to take Targinact, a low dose opiod. It's now prescribed for RLS. He wrote to my GP. It works very well. I educated my GP and she took it on board.

[Retiredlady in reply to Dotmowatee]

Can u please tell me how much Targin u take and how long u have been taking it?Have u had to increase your dose ?

I also have been lucky enough to have been prescribed Targin by my sleep specialist here in Australia..I take 10/5mg nightly at 9pm .. takes 90 minutes to become effective but lasts all night thankfully.Previously I took Codeine which only lasted max 4 hours.I also take 75mg Pregabalin at 10pm..think it helps me sleep but I am stacking on the weight!

My concern is I will have to increase my Targin dose eventually or it may stop working.

[Dotmowatee in reply to Retiredlady]

I take 5/2.5mg at 8pm, usually lasts all night. Have been taking it nightly for about six months. Keeps me sane. I am still on pramipexole and have put on weight.

[Nikos64]

Hang in there and be optimistic !

There are effective treatments and you will find a solution tailored for you that allows you to sleep peacefully.

At least here in the US sleep specialists and pulmonologists are the correct doctors to see for RLS.

GPs don’t understand this condition or prescribe treatments that are either out of date or ineffective in many cases.

I also would like to recommend Sue Johnson’s advice. She is quite knowledgeable and helpful. You found a great community to help you find a good solution. Good start

[Jelbea]

Hi Whymelord - I am sorry to hear you are still suffering so badly. I did contact you three months ago to tell you about contacting Professor Walker to try to get opioids.

He helped me so much and I am now on Buprenorphine and getting good results. My GP practice are not happy about it but do not argue anymore.

I do not think you will find a neurologist in Northern Ireland who understands RLS. Anyhow the waiting time here for a neurologist is three years. My GP told me this ten days ago as I am having trouble with neuropathy.

I think you should try Professor Walker because if you could get relief from the RLS then your blood pressure would surely settle on treatment. It is all about getting some good sleep and therefore the ability to go on. Good Luck

[Nikon-]

Hi Whymelord im no expert but just a couple of things that work for me although you may already have tried them

Tens machine about half hour before bed time

I am presently on pramipexole and looking to change but have found magnesium very helpful together with the Tens

Good luck hope the above help 👍

[Joolsg]

I've sent a private message with Prof. Walker's email address.Please, please get in touch with him.

Your GP is totally in the wrong to suggest Pramipexole when you have augmented on these drugs before.