Had rls for 2 or 3 years now. Refuse to use prescription drugs after reading extreme side effects enclosed in the pack.
A friend recently recommended taking A.Vogel horse chestnut drops. Some nights they work, others not. Bought Restiffic foot clamps which also work well sometimes, but not always. On this site tonight as legs really bad and looking for feedback from anyone who has found cbd oil helpful. I tried 300mg a while back but no noticeable effect. Should I up it to 600, 1200 or even 2400 all of which Provacan supply? Apparently voted best cbd available in UK.
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I'm not a huge fan of CBD oil as I believe that there is much more to be had from as full spectrum oil which includes more of the 100 odd cannabinoids than the simple CBD only oil. I'd go as far as saying the CBD oil is an attempt to minimise the prevalence of medicinal cannabis but that's another story.
Considering its impossible to overdose on cannabis proper (well you can overdose but apart form transient problems its not as dangerous as a paracetamol or alcohol overdose), there should be no fear of an overdose with only one of its constituent components - worst case scenario you feel a bit drowsy or thirsty.
Increment slower than the 3 or 600 jumps you mentioned - no point taking 600 if 400 will do. Try upping by 100mg at the beginning then see if that makes any difference. Keep going until you feel an effect or realise that it wont really work for you. If you are able to obtain a full spectrum oil safely a low dose of that might be more effective. I've tried CBD oil and cannabis with high CBD levels as well as cannabis with high THC - it is the high THC that I found to be (more) effective.
Best of luck with your trials.
Good luck with whatever you try.
I'm afraid I felt compelled to respond to your statement "apparently voted best CBD available in UK".
It does appear that "democracy" is now a meaningless word in the UK. but I can't help feeling that might be a good thing in some ways because just because people "vote" for something doesn't necessarily mean it's a good thing, it just means that for some unknown and sometimes unfathomable reason, it's popular.
CBD oil does seem very popular, that doesn't make it effective.
There are however other things you could explore to deal with your RLS that may be more effective.
You could see if there is any underlying condition to your RLS e.g. iron deficiency is a known factor, you could have your ferritin level s checked.
You could have your vitamin D and B12/folate levels checked
You could reflect on your lifestyle, medications and diet.to see if there are any "triggers". Alcohol should be avoided, caffeine is a trigger for some people. Are you gluten intolerant or lactose intolerant. Antihistamines, antidepressants and antacids can make RLS worse.
I think.you're probably right to avoid prescribed medications if you can. However, RLS gets worse as you get older and if you get to the point, as I once did, where you are simply getting NO sleep for months, the risks of taking prescribed medicines will diminish in the face of the real benefits.
I don't know what medication leaflet you were looking at, but they warn about potential side effects. I took a Dopamine Agonist, Pramipexole.for years and for most of those years I was quite satisfied with it. I then suffered augmentation and have now stopped that. If I'd known about the augmentation, I might not have started it, but then I wouldn't have had the good years.
Now I'm taking Gabapentin and, joy! I sleep. The list of side effects on the leaflet looked horrendous so I'm taking the smallest dose I can that's working. Apart from a slight tendency to fall.over and bumping into.things, I really have no problems with it.
I have also started taking CBD with no noticeable effect. But doctor said it needs time to build up in your system. It's been weeks, though. I'm now thinking of increasing the THC content, and see if it helps.
The doctor recommended 2 spray inside check however I need at least 10 spray .
However Cbd oil alone stops my asthma attack in under a minute and I start bringing up phlegm it is miraculous for my asthma better than prednisone , puffers etc .
Try a weighted blanket. Works well for me. Had severe RLS and augmentation. Now after getting off mirapex I have it mild. Weighted blanket calms down enough to sleep thru it
It is currently surmised that RLS is caused by a deficiency of iron in the brain. The International group of experts in RLS treatment (comprising experts from both US and Europe) published a paper in 2018 which recommends using iron as a first line treatment for RLS - before the alpha2delta ligands, the dopamine agonists or opioids. They recommend a short stint of oral iron for anyone whose serum ferritin is below 75. If oral iron fails to raise serum ferritin to over 300 (this is common) or if levels are above 75 but below 300 to start off with, they recommend an iv iron infusion, ideally of ferric carboxymaltose (marketed in Europe as Ferinject). It will be appreciated from this that ensuring that serum ferritin is above 300 is an obvious tactic for anyone wishing to avoid taking prescription meds. The theory is that the additional iron sort shunts extra iron supplies across the blood brain barrier into the brain thus overcoming the BID (Brain Iron Deficiency).
Unfortunately there are some sufferers who have high levels of iron in their bodies and have RLS nonetheless - it is surmised that in these cases the blood brain barrier is particularly effective at keeping the iron out of the brain. In such cases, clearly supplementary iron cannot be taken. It is important to get serum ferritin checked in advance to ensure that you are not in this group.
If I had my time again I would not take a dopamine agonist as it is now considered that these cause permanent damage to dopamine receptors.
Other non-prescription treatments that are fairly widely recommended are magnesium - taken as a supplement or a rub and kratom which, unfortunately, is not legal in a lot of European countries. There are numerous other suggestions dotted through this forum which work for a smaller number of people. I will set out a few that occur at random: a cup of caffeinated coffee when symptoms strike (caffeine operates on adenosine receptors which are implicated in RLS), 20 minutes of gentle yoga stretching, rooiboos tea, a very diverting activity such as a computer game (reading, tv or paper puzzles are not sufficiently diverting), compression stockings, vibrating devices - various, any number of supplements (gaba, glucosamine, taurine, vitamin D, vitamin B12, cbd, etc etc - most sufferers have a cupboard of supplements they have seen recommended).
Good luck and keep posting. It will be interesting to hear how you get on. There is a sufferer on here who manages a severe case of RLS without prescription meds but she does have a hard time of it.
Great advice. I’m currently weaning myself off Pramepexole after there was a delay with my prescription that meant going 3 nights without it (Absolute TORTURE!!) I wish I’d never started it in the first place as my symptoms were way less severe at the beginning. Now taking cbd oil and just take half a tablet. Slowly getting a little better! And remembering to take iron sups every night as doc only took my blood iron test, not ferretin levels. Those weighted blankets sound good!
Thanks and well done for reducing pramipexole. It's very difficult to do. Sadly, there are many on here who are familiar with the torture you describe when you had to do without for three days. For almost all those who were originally prescribed a dopamine agonist there comes a time when it has to be discontinued and there is no easy way of getting off pramipexole.
I should also have mentioned that many sufferers find that a 'clean' diet (avoiding sugar, alcohol, too many carbohydrates etc) helps with their symptoms. There are a number of diets recommended on here eg fodmap, anti inflammatory, low carb, avoiding nightshades, etc etc. Many people report that certain foods trigger their symptoms. I find red wine and chocolate bad. Others mention monosodium glutamate, raising agents, sugar, some sweeteners and many more.
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