Relief, finally!!!!

[hm523]

I am only 23 years old and have been dealing with RLS for 10+ years. I just recently decided to seek medical treatment for the condition. First I saw my primary care doctor, with whom I tried Ropinirole and Pramipexole, both of which have me bad side effects. They referred me to a neurologist, who tried Gabapentin and Neupro patch, which both gave me bad side effects again. The neurologist was cold, rude, didn't seem caring, and didn't listen to a word I had to say, so I decided to move on and try a different route - a sleep medicine practice. They were so booked they couldn't get me in for months, but when I finally went, they spent an entire 1.5 hours with me. They listened to everything I had to say, were very caring, and knew what I was talking about (I later found out the doctor is an expert in RLS - in fact, I he is 1 of only 2 RLS experts in North Texas). Anyway, we tried Klonopin first, which worked fine to put me to sleep, but the next day I would feel so out of it and my motor skills were so messed up that I couldn't even form sentences (even the nurse, who I called about side effects 2 weeks into treatment, said I sounded drunk on the phone). They prescribed 5mg hydrocodone instead, and it is working wonders with no side effects!! I am so ecstatic to finally have the relief I've been desperate to find for over a decade. I just wanted to share my happiness with you all

PS: if your neurologist isn't helping, I suggest seeing a sleep specialist instead. Try to find one who specializes in RLS!

[Madlegs1]

That's a great story with such a good outcome. I found a similar result with oxycontin and am hoping that I will get relief for the foreseeable future. Dr Buchfeurer says he has patients on similar regimes for over twenty years - so heres hoping!

May your journey in life be as successful as your discovery of a good outcome has been.

Cheers.

[hm523 in reply to Madlegs1]

Thank you very much!!! I hope the same for you.

[funnyfennel]

Very pleased for you. May try to change myself, as on the pramipexole I am now sleeping for one hour at a time...feeling like rubbish...although I also take one oxycodone, must see what the difference is to hydrocodone. Does it make you itch?

[hm523 in reply to funnyfennel]

They are very similar, so yes Hydrocodone makes you itch (at least it makes me itch). Maybe try an antihistamine along with the Oxycodone to avoid the annoying side effect.

[funnyfennel in reply to hm523]

But we can't take antihistamines....they send me up the wall....may have to do something as sleep eludes me. Feeling pretty rough as have a guest for a while and its a trial.....

[Retren]

Hms523i have found only opiates give me relief but am not allowed them anymore as my physicians attribute my cardiac arrest last summer to them.Since which time have tried just about everything and get side affects into the bargain .Keep an eye on the intake I know how much relief one gets.Best of luck.

[Madlegs1]

Opioids/opiates can cause itching- I had it for about a month- not bad now. Also insomnia- severe at first , but gradually wore off. On the bad nights , when I needed to be alert the next day, I will take a short acting sleeing pill ( trazadol/ Halcion- not available in UK) Ambien is a decent alternative , but I would neveruse them for more than two consecutive nights.

The main thing is , NO RLS-!!

May the force be with you all!😎

BTW Hm , what is your total daily dose of hydrocodone and is it a long lasting one?

Cheers.

[hm523 in reply to Madlegs1]

I am on 5mg of Hydrocodone 1-2x/night. Its half life is only 4-6 hours, so the second pill is to be taken in the event that the first one wears off and causes me to wake up during the night.

[Madlegs1 in reply to hm523]

Ok- I found when I was starting , and was on oxycodone5mg (oxynorm) it was causing spikes in relief and pain because of the short halflife. This med is designed for breakthrough pain relief - not pain therapy - which is what we need. It also leads to addiction potential because of the constant up and down leading to craving for the next hit.

Ihave changed to oxycodone slow release (10-12 hrs) oxycontin10mg - this is the same as having two oxycodone5s over12 hrs - but much better for your system.

Dr Mark Buchfeurer of rlshelp.org reckons there should be no problems with dose up to 20 to 30 mg pd . Youcan email him for advice at that site. He is prompt and free.

At one stage I tried to just take the oxycontin at night and then oxycodone during the day as required - but my mood swings and craving was "unhelpful" to my family situation. So now I take a 10 at night and a 5 in the morning. Life is liveable again , - as I have said - a bit of insomnia--( mindfulness and sleep apps help) and itching - ( nothing helps😣) but after two months , that is not a big issue.

I hope this is of some further help to you.

BTW I find distraction activities are very good. I cycle and walk/ hike/ tramp and sign up for Adventure races to keep me motivated-(and I'm nearly 70yrs young)

Cheers.

[Pippins2]

Great news! ! Could you please give the name /address etc of this doctor as I keep a list of recommended doctors and he sounds like a good one to add. Message me if you prefer, thankyou. ..Pippins2 x

[johannasuar]

I'm glad you found a relief, however, be very careful because Hydrocodone is EXTREMELY addictive. Try TRAMADOL , same effects but not as addictive. I've been on TRAMADOL for six years with great success. Remember that what works for one doesn't work for the other, but try it and get off the Hydrocodone ASAP.

[Toofartoot]

I am glad to hear of your response to the treatment, the active ingredient of which is found naturally in corned beef!!

[Madlegs1 in reply to Toofartoot]

Do you have shares in Fray Bentos ?

[Pippins2 in reply to Madlegs1]

Ha ha Madlegs I can barely type for laughing! ! Thank you x

[Lindy14 in reply to Toofartoot]

So, might this eventually see us all being prescribed appropriate foods instead of being dosed up with substances from rich Drug companies! But seriously, it sounds like a good idea to explore things other than pills that could help us. Moo! Moo!

[DJTP1962]

Lucky you! I too have suffered from RLS since a child (I'm now 54) and people don't seem to understand how debilitating it can be. Still searching for a cure...