Advice Rls

[Krickets]

Rls I was supposed to go to Mayo Clinic for sleep study and see a neurologist for my rls, but had to cancel twice due to my sons epilepsy problems. So now I’m back to no hope of getting off the pramipexal! I honestly went off of it for a week and a half and took some old OxyContin in place of it and I had no rls at all! But family got upset at me for self medicating. I can not find a dr who will listen or that knows anything about rls . I could get re referred to Mayo but I would have to rebuild my emergency fund, because it’s going to take at least a thousand $ for motels travel and food. Any advise?????

[Hidden]

Really sorry to hear of your situation. It's a real shame you missed going to the Mayo, did you pay? Can't you get a refund?

I have a few suggestions if you can't legally get an opiate. They don't include getting an opiate illegally!!!

The first is that I hope you didn't just stop taking pramipexole. That's really dagerous! When you do decide to stop it. reduce it slowly. As slow as possible, in steps of 44 mcg. That's half of the smallest size tablet (0.088 mg base or 0.125mg salt). Reduce about once every 2 weeks, certainly no less than once a week.

If you've not tried it before, you can replace pramipexole.with gabapentin (Neurontin in the US), gabapentin enacarbil (Horizant) or pregabalin (Lyrica) whichever you can afford.

You should be able to get a script for one of these from your PCP and you ought to start it BEFORE reducing the pramipexole.

For further relief of withdrawal symptoms you could at least try paracetsmol and codeine, It's over the counter, not really strong enough but may help. Do NOT exceed the stated dose to get more codeine, This will give you a possibly fatal overdose of paracetamol.

A benzodiazepone may also help with insomnia due to pramipexole withdrawal.

Many RLS sufferers find cannabis helpful, illegal or not.

I hope you do manage to get to the Mayo, but.these tips might be worth considering in the meantime.

[Krickets in reply to Hidden]

Yes thank you for the advice! I was able to cancel in time so I wasn’t charged at Mayo , My sons Neuroligist is 5 hours away and he was in the hospital for a week and so we got home and had to go back for a surgery for him , so we have made about five trips in two month period! I can’t take neurontin as I start hallucinating. Lyrics does the same thing to me. I see my dr in April ( we live In a small town) which is pretty ridiculous to have to wait four months to see your physician, but it’s better than seeing temporary residents or nurse practitioner that do not even try to understand! So hopefully she will be able to help me figure this out. Any suggestions are appreciated!! Thank you!!!

[Hidden in reply to Krickets]

Sorry to hear, it appears you have limited options. As both pramipexole and gabapentin have failed for you then an opiate seems the only pharmacolgical option left and I understand it's difficiult to get a prescription.

It might still be of benefit to you to try and reduce the pramipexole VERY slowly. RLS without any mecdication at all might actually be an improvment on augmentation if that;s what you're experiencing.

In the meantime you could try taking all the usual supplements that may help B12, vit D, magnesium and iron.

[bill54321 in reply to Krickets]

Neurontin in the brand name for Gabapentin in the 300 capsule form. It is for seizures and nerve repair. It is not approved for RLS. Horizant is a brand of Gabapintine with large doses of a sloe reease standard pill of 600mg to 1800 mg and is recognized as the approved treatment for RLS. Many Drug stores do not question a misinformed Doctorwho might not be that well versed in the brands or doses.. You should bring this up with him/her

[robert1957]

Hello krickets have you looked at magnesium deficiency and symptoms of magnesium deficiency also vitamins d3 and k2mk7 also vitamins b12 in the form of Methylcobalamin and adenosylcobalamin

If you can pick the type of magnesium that is best for you good luck.

[Parky1949]

Location? I go to a neurologist at the University of Chicago, she got me off the dopamine’s and has had me in a comfort zone for 3-4 years now.

A Godsend after three quacks pumped me full of dopamine and none of them knowing what augmentation was.

[Krickets]

I am in south west Nebraska, what are they treating you with?

[Parky1949 in reply to Krickets]

Gabapentin

[Heatherlss in reply to Parky1949]

How was your experience weaning off DAs? Can you describe it ?

[Parky1949 in reply to Heatherlss]

A GP listened to me about augmentation and put me on a patch. I asked him how to transition, he told me cold turkey. I talked to the pharmacist he advised me to taper off for a week as I transitioned. I went through 90 days of hell, couldn’t sleep, couldn’t sit, my legs were in agony unless I stood up. I did that until I fell asleep standing, then I’d fall. I fell numerous times with little or no injury. I’d reach a point of exhaustion and be able to sleep in my bed. Then I started walking in my sleep- three times I woke up in complete darkness with my nose in a corner. Twice in my bedroom, once in a spare room. Physically exhausted, I searched for a doctor with answers. I found one at day 60+. She put me on tramadol to complete the transition. My lesson learned- find a specialist up front, The 2 GP’s and the sleep doctor were clueless.

( I was addicted to dopamine).

[Krickets]

Honesty I was on .5 pramipexal and just stopped taking it and took Vicodin and a Valium half hour before bed. It was tolerable with the Vicodin but I was irritable and very tired. But after a week and half the kids got mad at me for self medicating so I just went back to half the pramipexal. But it sure did work I just wish I could find a dr to treat me with it!