I am new to this community- glad to have found it. i am 50 have had severe rls and rlmd since i was 10. have been on everything from sinemet to vicodin, mirapex to oxycontin and have only gotten progressively worse. i am currently taking 6- 8 mg of requip with limited success. i have had issues in the past of falling asleep on my feet, but it is becoming dangerous. i am hitting different parts of my head on walls, floors, etc nightly. i sometimes am in such a deluded state of mind i kneel on the floor and thinking i am in bed, i dive head first literally slamming my forehead onto tile and hardwood floors. when taking a shower to try to relax, i fall frequently and "head butt" the walls. i have no insurance and limited income- very difficult working when i can't sit still and fall asleep on my feet.my wife is a saint and it kills me to see her and our kids- 4 to 19 suffer because of my disease.
right now if there was even a 50 % chance of success or death with surgery i would volunteer to be the first guinea pig. i can't live like this anymore and if the head injuries continue i probably won't . i am literally afraid to try to go to sleep and disgusted that i cannot support my family.
don't know if anybody has advice just need to get this out.
thank you all
Written by
spikel1
To view profiles and participate in discussions please or .
Oh spikel that sounds terrible . Are you saying you are falling randomly asleep due to the drugs you take or cos you are just really sleep deprived? If not... It just sounds a bit like you may have narcolepsy. You really really need to see someone n the medical profession....don't you have free healthcare or anything like that?
not much here in help for family that was until recently was middle class. fortunate to have insurance for the family.
don't think it is narcolepsy- definitely coincides with bad sleep cycles. i go a few weeks with decent sleep-4-5 hrs consecutive is awesome. but invariably get into cycles beginning with one rough night of limited sleep which peaks after multiple sleepless nights and i usually crash at some point from shear exhaustion
WOW, thats bad....!! I dont know what to suggest for you... but taking 6-8mg of requip is way to high for RLS. That might be why you have some of your problems. Are you falling asleep on your feet because you are not sleeping..?? If not, then the requip can cause that to happen. I think you need to get off the requip, just my opinion. But cant say what to take instead of. Having no insurance for health care, i know is a big problem for people in the USA. Do you still have a doctor...?? I am just going by what i have seen on other forums when people have no insurance in the States, but i think you still need a doctor, you can i think i am right get in touch with drug companies for samples of their meds. Or, you have walk in clinics...??
We have a few people on here who live in the USA, they might be able to advise you better than i can, regarding no insurance.
You seem to have tried almost everything. Have you tried the Neupro Patch, but it is very expensive. You have tried oxycontin, so i dont know whether Tramadol would work for you.
You could look at this website, its based in the USA, but some of us in the UK, use it too. rlshelp.org the treatment page gives a list of RLS meds. it also gives a list of medications to avoid which can make RLS worse, and also food and drink, which can make things worse.
oxycontin made me hyper guessing the tramadol would do the same
i have a dr who is fairly sympathetic, but he rls is not his specialty
- thanks for the reference- will definitely take a look
Oh my goodness, you are in a bad way, but i have to agree with Elisse, i think Requip is way to high, and the sooner you can get of that and onto a different med the better, requip used to wipe me out in about 10-15 mins, so i think that may be part of your problem, i know its a lot harder in USA if you dont have insurance.
I dont see Horizant mentioned in your post either, so as Elisse says, i would either try the neupro patch, or the Horizant, hope you can sort something soon.
Personally having read the experiences of people and rls drugs I have no intention of ever using them! I take co codamol only to relieve my rls and get some sleep. It works for me most of the time. Just a suggestion. Get off all the drugs and just try painkillers.
It sounds as if the painkillers dont work either. Vicodin, oxycontin are painkillers, vicodin, is one of the strongest ones.
But if other drugs are causing problems.....maybe nothing else just painkillers might work. Spikel .....were you using the painkillers alongside other medication? X x
no i was just on the oxycontin at the time- i have taken it a few times recently -- after injuries and a shoulder surgery, but it definitely makes me more awake and hyper
Spikel, I feel so sorry for you. I am on 6mg Ropinirole a day but slow release. I take 4mg at 12 midday and then 2mg at about 4pm which seems to be having the best result so far.
I don't feel so sleepy during the day because the tablets are slow release. Hope it works for you. Kind Regards
Spike I can empathise with you as I have such awful problems too. I was put on a 8mg dose of the patches by my consultant and it made the RLS very much worse. It took ages then to get them out of my system which made me very ill. I think it could be that the high dose of Ropinerole is making things worse for you too. Ropinerole may control your RLS but at a lower dose and you could try a split dose over the latter part of the day. I personally would try to reduce the dose slowly by 1 mg every few days but take the remainder - 6-7mgs starting late afternoon 1mg at a time - every hour. Then reduce again and spread the remainder over a slightly longer period always leaving 2mg to take half and hour before bed. Did you know that one of the side effects of Ropinerole is "instant sleep" where you fall asleep with no warning. Reducing the dose may reduce the instant sleep. Have you tried Clonazapam? It dampens down the nerves which are jangling in your legs and if you take it before bed it could relax you and help you sleep. I can't get any rest or sleep without taking Ropinerole and it does't always work but without it I'm suicidal.I also take high strength co-codamol as opiates seem to help, but if you've been on oxycontin which is stronger it may not help you. I'm wondering if some of your symptoms are worsened by the combination of drugs you're on/have been on - and the way it effects your body by coming off them in order for you to change to another drug. I often wish I could have an anaesthetic for a month or two without any of these drugs as a painless detox. I wonder how bad things would be when I woke. I really believe that once your on Dopermine type drugs it's almost impossible to come off them as the withdrawal is horrendous. Hope some of this helps and I really hope you get some help soon,
Janet your symptoms are quite similar to mine-i fully understand your suicidal feelings. i was out of ropinerole over the weekend- my doctor's assistant was pissy that i had not come in recently and held up my refill. got so bad, i hit my head twice- have a black eye and truly wanted to die.
to date, the ropinerole has been the only thing that worked. in fact my research with the southern cal. rls foundation led me to ask my neurologist for it about 8 years ago. originally he prescribed it with another med which was a disaster- when i stopped the other med (klonopin or mirapex or sonestta i think) it worked very well in low dose form- 2 mg nightly. the slow release did not work. i now take one 4 mg in the evening and another 2 mg right before bed if symptoms get bad, i take another 2 mg. it really makes me feel lousy- nauseous, constricted nasal airways and overall awful. my Dr. has no issue with my dosage, but i think he relates it more to the higher dosages for parkinsons. i don't want to take more and it is certainly less effective. noticed that one of the 2 generics i was taking was not effective.
i also have had issues with gambling- lottery etc. not quite compulsive, but to the point that i have to resist the urge and not carry any cash.
to make matters worse i am working in construction and am concerned i will get badly injured because of my lack of sleep already had a ladder incident that led to ambulance and er- could have been much worse.
my plan is to get back to exercising- yoga seemed to help in the past- my diet is good, but am trying to severely cut gluten and processed foods.
i have read that meditation can help- wish i knew how to sit still long enough to do it.
My wife is from Brazil and her family has offered to help me get full brain scan, neurological testing etc. all ii had here was a sleep study. so we are saving and selling to hopefully get there in december.
.What is so sad is the number of people- even in my family- who do not think rls is for real. I am convinced that my lifespan has been greatly reduced and the symptoms are torturous beyond explanation. i have already made plans to have my brain donated to science in the hopes that i can somehow help others- including my son who has shown some symptoms.
thank you all for your support and advice.
may you all find relief from this horrible disease
yes i agree and am incorporating that in my plan as well just need to find something that will work. may be able to get samples of newerr meds from my dr.
Spikel It would appear that rls affects us all differently. I have Clonazapam but it doesn't work for me, but it might for you. The slow release seems to work for me.
I would suggest that your family doctor refers you to a specialist in head injury rehabilitation. That way you could undergo a variety of tests to see which parts of the brain are affected. A Neuropsychologist would be a useful start - if you are in the UK contact Headway for advice.
There is a neurological disorder which can be seen in dogs where they are running without problems, then drop to sleep instantly. It can happen with humans. It is not un-known - let us know how you get on!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Vicodin, oxycontin are painkillers, vicodin, is one of the strongest ones.
extreme whole body restless seizures
Restless body and legs
New to blog, but sufferer of RLS for many years
Food intolerances and inflammation in body.
Blood Thinners for RSL Sufferers
