Severe RLS, med works only at night

Hi Jackie,

I know all to well what your feeling i was similar on 1mg pramapexole for some time then i started to have it during day, my dr did up the dose it worked for a time but has many side effects that are not worth it.

So to cut a long story short i really suggest you make an appointment with a neurologist who will work best with you to find something that works to relieve the symptoms he/she are the best to consult on the matter not saying your dr. is not but some aren’t really in the knowledge of RLS that was my experience.

I met with neurologist and we tried many options he recommended i come of the Pramapexole, it’s a lot of trial and error to find right meds to suit i know it won’t completely relieve symptoms but bearable.

If you need any info on medications I’ve tried and any of the side effects of any you only need to ask me, but make that appointment as soon as you can there will be a waiting list I’m sure.

Good luck

Frankie

Sounds pretty awful Jackie, I started with RLS 10 years ago (aged 60!) on a long hail flight to Australia - wondered what was happening to my legs. Spent half the journey walking up and down the plane. I was put on pramipexole 0.08mg - now up to 0.27mg - I hope I never get to 1mg, but it looks like I will, eventually.

Some good advice from Frankie, which I think we should all consider.

Take care and I hope you find relief soon.

Norman

Hi jxkrus5

I have had severe RLS for more than 30 years.  I am currently 64 and my RLS also started with a pregnancy.  Your story is identical to mine.  Pramipexole, although a great and effective drug to relieve symptoms of RLS, will over time augment the disease (make it worse) so that you experience daytime symptoms and are basically miserable all the time -- exactly your experience.  You will need to come off of Pramipexole, but you need to do it slowly, very slowly.  Coming off of Pramipexole was a nightmare for me.  I didn't do it with a doctor's help and I wish I would have.  My experience with medical doctors (and my husband and son are both doctors) is that as a whole they are uninformed and untrained to treat patients with RLS.  That's why forums such as this are good.  Those of us who suffer with this horrible syndrome can relate with each other and tell their personal stories and also share how they are coping.  All medications will over time lose their efficacy.  You have to increase and increase your dosage until you reach the max dosage and have to change drugs.  Sad but true.  I currently take Lyrica (this is a miracle drug as far as I am concerned as it has taken away all of my daytime symptoms and I can ride in a car all day -- something I haven't been able to do for a long long time).  And Lyrica will not augment RLS.  And you don't have to keep increasing the dosage.  BUT it doesn't help with sleep or with middle of the night symptoms.  I currently take Temazapam to get to sleep.  Then, four or so hours later, when I am jolted awake and miserable with RLS, I have discovered CBD oil relieves my symptoms and allows me to get back to sleep.  I am so very hopeful about CBD oil. It is ingested orally.  Research it.  I get mine from CBD+ Plus.  I get the large 10mg tube ( the green is less expensive than the gold, but the gold provides more CBD per dose.  Both work well for me.)  It is not a cure, but it currently works for me and I can't sing the praises of it enough.  CBD is from the hemp plant, but it has had the THC properties removed (the property that provides psychogenic effects and makes it illegal in most states) and it is legal in all states.  I take 30-40 mg of actual CBD per dose.  Am hoping this is a long-term coping measure for me.  Blessings to you on your journey.  

I have suffered since 1994 . About 4 years ago a friend said I should see the doctor about some 24 hour patches which were available for restless legs. The patches are Nero transdermal patch Rotigotine. I started on a low dose but quickly went onto the higher dose. (3mg) . I have no side effects other than the patches Burn my skin but I can put up with that ! They have literally changed my life.

I can now go to the theatre, , go out for dinner, go on an aeroplane and all the normal things we do and take for granted.  Prior to getting the patches I was becoming suicidal - they actually saved my life. I also take I cocodomol on a night. I know that not everything works for everybody but do try them- they might make your life normal ad they have for me

Good luck and please post how you get on with them

Pramipexole, Ropinorole and Neupro patch are dopamine agonists and when they stop working (Tolerance), GP’s often mistakenly increase the dose. Augmentation often results, RLS starts earlier in the day and symptoms spread to arms, hands etc. It is then necessary to come off the drug slowly with GP help and using a drug such as Tramadol (an opioid). Gaba’s are another useful RLS drug eg Gabapentin and opioids can be used as an effective treatment for long periods without Augmenting. It is best to use the minimum amount of drugs that you can and to keep a diary to try and find your triggers. Caffeine, alcohol in quantity, spicy food, sugary foods, even potatoes can be triggers. My Neuro told me to read up, google and join RLS groups to educate myself and become my own expert! Good luck.