i have had severe rls for 4 years. i was originally [mis]treated by a sleep doctor and neurologist who eventually had me on Sinemet every 2 hours. you can imagine my physical state. i was told that they didn't know what was wrong with me. my present doctor was horrified by my condition and immediately got me off the Sinemet and used Horizant for a short period of time. within a few visits i was sleeping 5-7 hours a night and not having the visicious attacks at night. he gave me a small piece of my life back for which i was forever grateful. i think you all know what i mean. he was also there when i needed adjustment. this lead up to the most recent go around with an artficial sweetnercalled asparthame, a known trigger. i was at the doorstep of taking opioids, but a codeine allergy made it more complicated. etgo, the 6mg patch. he has other patients who are on 6mg and doing as well as i am. side effects are the major problem. thw sleepiness ever present and totally foreign to an insomniac[i confess]. i also didn't mention that i am a physician.
i didn't expect the response to my note. i was initially overwealmed until i thought about this disease. we are all living through this affliction having our lives turned upside down while waiting for the next indescribable attack. an attack that we cannot share with even close friends because it isn't like anything else. that is where these short notes come in. they are voices of concern from a fellow sufferer, with cheers of encouragement, possibilities of a new home remedy or wearable device. something to spur on some hope for this wretched disease.
believe me, much thought went into starting the 6mg patch, mixed with memories of the relapses in my legs. i would do almost anything not to have another viscious attack.
i feel you all have my back.
thanks!
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badia1
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I feel ya...i too cannot take opiates...the disease is debilitating and ppl jus dont get that...i cant make plans until day of...i let ppl down constantly so feel guilty all the time...i also live in a state of anxiety worrying about the next attack which we all kno is inevitable....it scares me to kno ppl hv had this disease/lifestyle for forty plus years...i hv had rls for three years and am already exhausted...i cannot fathom hving to fight nearly everyday with this disease for much longer let alone forty more years of this hell...
I find that judging me on whether i abbreviate my words or not jus rude....i abbreviate because im manic and i hv so much to say and frankly cant keep up with my head...i thort this was a forum to gain support not call someone lazy for the way they text...i am prob one of the least laziest ppl around so instead of judging me simply on my text why not try accepting ppls different ways of communicating....i come here for supportive messages not to be judged...
no worries. Totally understandable if you are texting. As long as can understand what you are saying, i would say do not worry about it. Different generations have different ideas. We have your back also, do not forget that.
Well Badia you are on the right forum for help,I can't believe you started on 6 mg patch why didn't you start on 1mg and maybe a Tramodol ,where can you go from there starting so high ,you will get some replys befor long ,good luck
I agree on the 6 mgs, as I did in my reply. We all know we should start with the lowest dose possible and go up as needed to the highest therapeutic dose, which is 3 mgs for the Neupro patch if that is what badia is taking.
I wonder if you could take kratom. Kratom affects the mu receptors like opioids do, but is not an opioid, and does not have some opioid qualities, like suppressing breathing or causing a real high. I have severe RLS and kratom is all that I use. Good luck to you.
Kratom has a lot of negatives also. The tree they get the leaves from is grown in Asia, cannot remember the exact country at this moment. But, it is outlawed in the country where the tree grows. I am glad it works for you, and can be helpful, but can have very negative side effects. All "natural" is not always "all safe".
Kratom is illegal in six states in the U.S. none of which I live in. Medical mj is illegal in 26 states--not in my state, as it happens, but I've heard people who have used both for RLS report that kratom works better.
Kratom has helped me tremendously as well. However, I know you're not suppose to take anything forever and I've been on it nightly for almost a year. My RLS is just starting back up again (mild), so I guess I need to take a little break from it in order for it to be effective again. I've not had any side effects from it at all; what a blessing it has been to me!
I've been taking kratom nightly for three years, and I do take more now than when I started. I started taking 4-6 grams a night, and now I'm taking 6-9 g rams. Usually I just take a gram at a time, but lately I've found that I need to take a 2 gram dose in the middle of the night for it to work. I take it usually take a dose every 2 or 3 hours in the night.
I've cut back before by cutting down my doses a good deal for a few nights, and then I find I can go back to my usual doses and my tolerance is reset. I'm not sure if I can survive a few days off of it altogether.
If you take a break, let me know how you do. Maybe I should just bite the bullet and do that as well. No way am I going to try any prescription meds.
Yeah, I'm with you on the prescription medications. I'd never try any of those because of the side effects, and I prefer to take natural remedies. I'll let you know how I do taking a break from it. I'll try the magnesium when I stop the Kratom too.
Okay, I said I'd let you know... I was off the Kratom for about 4 days. Fortunately, I found some leftover pain medication from my surgeries that I used during those nights. I thought that would be long enough of a break from the Kratom, but apparently not. Although the RLS was very mild, it was still there on the night I went back to Kratom. I don't know how to compare my dosages with yours because I put mine in those little capsule things, the smallest size, and I was taking 3 about 2 1/2 to 3 hours before bedtime and that worked for quite a while. That's the dosage I took the other night and I had mild symptoms. The last two nights, though, I added one more capsule right before bed and it worked like a charm. No RLS at all the last two nights.
The small capsules (marked size 1) take about three-tenths of a gram, and the larger ones (size 0) take six-tenths. So you can do the math. It doesn't look like you are taking very much. Even with 4 capsules you are just over a gram.
Truthfully, I don't know if my need for a little more now is because of a tolerance I've developed or because the RLS has just become more severe. I'm guessing a little of both.
Yeah, I bet it is a little of both. I hear it gets worse as we age and I know we can develop tolerance for medicines and herbs that we take. I know we're not suppose to take something forever, but idk what else we can do. Thanks so much for the information on the capsules. It's good to know I'm not taking much and now I don't feel bad about increasing the dosage to 4 capsules.
I would think since you say you are a physician, you would be able to explain to your friends better than most. Also, as you say you area physician, why would you even think it is ok to take Sinemet every 2 hrs? And, the patch? I assume you are talking about the Neupro patch? Also, way over the recommended therapeutic dose. Eventually augmentation can happen at too high a dose of any dopamine med, FYI. I know you said a lot of thought went into it, but you have to know that it is not a good long term solution at that dose. Just being honest, and we DO have your back, though! Are you a practicing physician and what is your area of expertise?
Hi badua1, didn't know you were the enemy I'll say nothing about Dr's
I'm partly with Nightdancer and partly with March1044.
Nightdancer first - that dose is way to high and as a Dr I would imagine you would know that and act accordingly - I had awful, absolutely awful side-effects from Mirapexin as the dose increased. I was hypersexual could not be satisfied and had very disturbed thinking, (only I am quite awate of myself and thoughts it could have been very bad). Look at those who developed Impulse Control Disorders and ruined their lives! As you quite rightly said at 78 what's long term - well if you have RLS in your legs and you end up with it all over your body a week is long term, believe me.
March1044 - Kratom is as far as I can research and from personal experience the single best drug that can be used to treat RLS, Nightdancer you talk about the tree being illegal where it originated and that is true but the incidents of harm from Kratom are a magnitude of times less than Oxycodone, Tramadol, Mirapexin, Ritigotine, Lyrica, etc, etc.
Erowid stands as a shining example of knowledge about drugs and I would say check there:
Here it speaks of Kratoms safety and how the LD50 of caffine is lower than Kratom making it more toxic/harmful!! How many are now giving up their morning cuppa?
The difficulty is that some US states, although not all have it banned and the crooks in Westminster have outlawed it in the UK, (although there are ways around that).
IF I were you I would look to opioids first, (in so much of minimal side effects easier to obtain for you and efficacy) and after that I would look into Kratom THEN and only then the Dopamine Agonists but rather than go to the 6mg risky range I would augment at a lower dose with the likes of Lyrica or a weaker opioid/opiate -Tramadol has been seen to be quite effective and I can testify to that.
Please don't take offence at this but are you really a Dr? You seem to take other Dr's advice without question, checking or even having your own knowledge to do different! The treatment regimes you are been on wouldn't stand up to a modicum of research so you can forgive me for questioning both you and the Dt's that treated, or as you said mistreated you!
If you are in the US the Relaxis Pad has been helping people who have RLS just in their legs and I have gotten good but temporary relief with hot baths. Massage and stretching have also helped people.
Iron levels need checked and double check what other drugs you are on to see if they can be exacerbating the situation, (anti-depressants and histamines are ruthless on the RLS and will ramp up the symptoms quite a bit.
Goingthruhell - Text speak for many is offf puttingand confusing, and I can understand, (although take a different view) to it being called lazy. What I would say to you if someone feels that's lazy that is OK if you are not lazy don't let it bother you - what do you care if someone on-line thinks you are lazy or indeed a friend if you aren't? That said I would ask if possible try not to use it, just a personal thing -I try and respond to everyone that I can and with RLS, pain issues, ME and other health concerns anything that makes it harder to read drains me. That said why would you give two f**ks what I think
This site has been a treasured find for me - I have gotten great practical advice and support and when I was at a very low ebb, (praying for death and as an atheist that is desperation!). Through helping others I have learned about myself and the pain discomfort and everything seems less as I can use my suffering to help others. Good to know there are people there who understand - really understand the desperation frustration and suffering. Thank you all.
Ur right i shouldnt hv over reacted...this is the way i communicate on my phone... to ask me to change is like asking a left handed person to write with their right hand...jus as shorthand drains u...typing full words drains me...iv texted this way for years...i jus thort there was no need to bluntly call me lazy (how is that productive or supportive?) wen they dont kno me...i hv enough guilt that my pain eps take time from my children so run around like a headless chook tryin to make it up to them...which in turn causes me stress and then another pain ep...Like i said im not on this site to get called names...my struggle is real, jus as is urs...i too try to respond to everyone that replies...i jus abbreviate a lil more...lol
Badua, for those of us who have been on this forum for many years, have seen the result of people taking a med that is way above the recommended dose. Also we see it on other RLS support groups not just this one. We read the agony they are going through on that high dose from the augmentation, we then read of the agony when they find they have to detox from that med and what that entails for them. Many have come on this forum and didnt even know they were having augmentation until some of us have had to inform them. We are then here to listen and help and support members when they are going through the detoxing which for most can be horrendous and you have to have a really understanding doctor who will help and support you through too. So, when we see a member saying the dose of a med they are taking is way above what should be taken, then we will speak up and say so. So, as i replied in your other post "6mg or bust" your doctor should have never increased your dose to 6mg or in fact his other patients either come to that. It will in the end , end in misery.
I was on just about all the meds for RLS over the years and the last was Mirapex which I was on for about 15 years. The augmentation got so bad, I was taking more and more. After getting off it I now take Percocet and am so blessed I can take it. Although it makes my scalp itch after taking it but I can stand that over the movement disorder. This RLS is an insidious disease and one that many people just don't understand. Thankfully we have this forum which is very helpful. Thank God that all these people here.
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I'll say nothing about Dr's 
Update on My Neupro Withdrawal
3 years Buprenorphine Success.
Coming out of a very very long dark tunnel.
