Peaceful nights at last!

[Skysgal]

I started posting on this forum 2 years ago but it is many months since I last posted so I wanted to tell you what is proving to be a happy ending to my long RLS tale of woe.

I've had RLS all my life (inherited from my father) and for many years it was just an occasional thing but when I got old it became a regular, serious, night-time problem. As a lifelong natural health fanatic, I searched and experimented with all kinds of herbs and vitamins and so on, in the hope of finding a natural remedy that worked. Nothing did.

Eventually, in desperation. I let the doctor prescribe me Gabapentin and that did seem to help but I hated the side effects so I stopped taking it again (and the withdrawal was also very unpleasant.)

I had heard that cannabis works well for RLS but being in England, where it is illegal, and not wanting to break the law, I didn't try to get any. I did try CBD oil, which is legal, but that didn't help at all.

Last October, at the age of 86, I went to visit my daughter in Boston, USA, where cannabis is now legal and freely available, and (much to the amusement of my adult grandchildren) I bought some THC gummies and had one each night at bedtime. They worked brilliantly!

So as soon as I got home again I asked my GP to refer me to a medical cannabis clinic, which he obligingly did. I am now a registered medical cannabis patient. I have to have an online appointment at the MyAccess clinic (myaccessclinics.co.uk/) every three months (cost £50) and their dispensary sends me, through the post, a three-month supply of cannabis oil (cost £170). I take just 0.6 of a ml at bedtime and that is enough to help me sleep peacefully every night, RLS-free.

Yes, it is expensive, but no more so than smoking cigarettes or running a car, neither of which I do. And I feel as though I have my life back again.

Blessings to all.

[SueJohnson]

That's great !!! So pleased for you. 😀😀😀

[Depech]

hi I’ve suffered for 20 years I’m now on patches but have sucky feelings and feel anxious also I’ve been on them for a year and keep having to up the dose monthly prescription

I’m interested have you any side effects are you now addicted

[Madlegs1 in reply to Depech]

What patches are you on?

[SueJohnson in reply to Depech]

It sounds like you are suffering from augmentation having also read your profile. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

You need to get off the rotigotine. Rotigotine which is basically ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. To come off it if you only have the 2 mg patch, ask for the 1 mg patch and cut it in quarters so you are, reducing it by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off the patch although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal.

[Depech in reply to SueJohnson]

hi thanks for info it looks like I will be speaking to my Doc again

Thanks

[SueJohnson in reply to Depech]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Madlegs1]

Brilliant. Really happy for you.

[Skysgal in reply to Madlegs1]

Thanks! To answer your question, I think a mere point six of a ml of the oil would hadly be enouh THC to addict a gnat, let alone a person! But if you mean do I feel dependent on the oil, yes I guess I do, as it is the only thing that has ever really worked for me and I am so thankful for it.

[Simkin]

I also inherited rls from my father. I am 73 and all I can think of is the fact you have still been suffering at 86.I think as we age we all deserve a peaceful life but I've obviously got years to go yet!!

[Fingerandus in reply to Simkin]

me too here i am 80 and dont sleep from RLS now i have developed trigeminal neuropathy which strikes anytime anywhere. what to do !!!!

[Jumpey]

I'm delighted for you.X

[67Waterman]

Hi Skysgal

I wonder if an RLS Specialist (as compared to a GP), would be able to prescribe Cannabis Oil on the NHS, which would prevent so much money having to be spent?

Also, can you drink alcohol with it? (We lived in France for 15 years, so have the habit of having wine with our dinner!).

Warm regards and thank you for sharing, Sally

[Skysgal in reply to 67Waterman]

Hi Sally, no, nobody can prescribe cannabis on the NHS unfortunately. That time will come eventally, I'm sure, as a lot of people are lobbying for it, but we are not there yet. As regards wine, yes we like to enjoy a glass of wine. In fact we belong to Naked Wines (nakedwines.com/). Their wines are delicious and they do a wonderful job supporting small, independent winemakers all over the world, including France.

[67Waterman in reply to Skysgal]

Thank you so much for replying. I am going to ask my specialist to change me from Pregabalin to Buprenorphine. If that does not work, then I will follow your example. Happy summer and happy wine enjoyment!

[eliz45 in reply to 67Waterman]

I have a friend who is extremely health conscious and she has a glass of wine and a small amount of marijuana every evening. Probably moderation is the key. I take CBD oil which does not have the THC in it. I have been taking it for at least 6 months and have not felt any need to augment it.

[67Waterman in reply to eliz45]

Can I ask how much CBD oil you take each night (and is there any particular make?). Big thanks.

[eliz45 in reply to 67Waterman]

Well, I started out with just three or four drops as soon as my legs started feeling creepy crawly or had cramps. (You must shake it first). It lasts about 3-4 hours. So you do have to get up in the night and take more, but it is worth it. And some nights it lasts longer and some nights shorter. I would guess everybody is different. I may be taking too little. The brand is called EVOLVE+ and there is a website, but I can buy it locally here in the US. I live in New York State but was able to buy some and send it to my son in NC. Not sure how far they will ship it. I like it because it tastes fine. Others I have tried taste horrible under your tongue. Hope that helps.

[Allyp69]

Really pleased you have found relief from RLS. I have found CBD oil and gummies help plus my Therapulse gadget...Would love to find an actual cure before I die (am 76) and also live in UK. Thanks for sharing.

[Goldy700]

I have found much the same Skygal - I am reluctant to take the orthodox drugs - Gabapentin was not successful. I find vaping medically prescribed cannabis a wonderful help for both sleep and RLS. I am in Australia and am very happy to say you can get free telephone consults and very reasonably priced cannabis sent to your door now. It is wonderful for now I can socialise without feeling a tired wreck. I have been taking for many years now and no feeling of addiction. Important to get the right prescription but doctors seem quite cluey when it comes prescribing varieties that are sedating and dull the sensations which we know can keep us up all night,

[Skysgal in reply to Goldy700]

So glad to hear that. I lived in Oz myself for 35 years but I left in 1996 and at that point the RLS wasn't messing up my sleep so I don't know whether medical cannabis was available back then or not. It's so good that you can get it now.

[tuckerdog109]

I recently started taking a half a gummie and it has worked wonders. Finally getting sleep again. I take 2 Pramipexole a day as well. Conditions have greatly improved.

[Joolsg]

Great to hear skysgal. I've been advocating medical cannabis on here for years. People STILL think it's illegal and they won't qualify. My cannabis clinic doctor prescribes cannabis for RLS.

lyphe.com/welcome/?gclid=Cj...

[Skysgal in reply to Joolsg]

The first clinic I tried, I approached direct. Told them my story and gave the access to my medical records but they knocked me back and said I hadn't tried enough remedies. That's why I asked my GP for a referral and when I approached the Myaccess clinic with that letter it did the trick. So maybe it IS hard to qualify if you don't have a sympathetic GP.

[Joolsg in reply to Skysgal]

Very interesting. I was unaware of this. The doctor who treated me at the Lyphe clinic said he treats RLS patients.I'm so pleased your GP helped and was sympathetic. I imagine many will try to block access.

[bedith6 in reply to Joolsg]

Hello Julie. Really interested in this post as l am still getting breakthroughs during the day and as soon as l get into bed at night. The clinic has said l am eligible but am wondering if l would have to involve my gp or neurologist. How much does it cost you ( if you don’t mi nd saying ) Does the clinic instruct you in dosage etc. How much do you find you need ? Does the clinic know that you also take opiates and is this o’k? Sorry for all questions but would like to try it but am nervous of taking the first step. Take care Best wishes Beryl

[Joolsg in reply to bedith6]

You just contact the clinic directly. Neurologists and GPs aren't involved. You pay £45 for initial consultation and follow up consultations every 3 months. The clinic contact your GP for your records.Price will depend on what they prescribe. I was given oil with 20% THC to take at night. However, if you need 'instant relief' from breakthrough RLS, they may prescribe 'flower' which is the bud of the cannabis flower. You have to then buy extra equipment. A grinder to grind the bud into crumbly powder and a vape tower which heats up the cannabis and allows you to cool the heated smoke to inhale.

My cannabis works out at about £2.50 a day but flower bud may work out cheaper or more expensive.

It was very strange to have to look up how to take cannabis properly. But as I'd never taken in before, I just googled and found out a lot. Having children in their 20s helped enormously!

The clinic know I was on Oxycontin and am now on Buprenorphine.

[bedith6 in reply to Joolsg]

Thank you Julie for your reply. Another question, sorry, do you feel tired or unsteady at all the next day as at my age l am terrified of falling. I suppose if l want to try it l will have to bite the bullet and pay the initial £45 to find out what the on going costs would be. It seems such a big step to take because cannabis was so frowned on in my day but l shall go crazy if l don’t get some peace soon. Take care. Beryl.

[Joolsg in reply to bedith6]

I take a small amount at night and I'm asleep before any 'high' affects me.I don't feel tired or unsteady the next day. Pregabalin and gabapentin did however make me feel tired and unsteady the next day.

It's a shame cannabis has such a stigma. The right strains are very helpful. Queen Victoria used cannabis regularly.

I've seen first hand how it has changed people's lives.

It may not work for your RLS. Some find it works brilliantly, others not so much. But as with nearly everything in RLS, it's worth a try.

[bedith6 in reply to Joolsg]

Thanks for your reply Joolsg. Nothing has ever worked completely for me so you never know perhaps cannabis is the magic bullet. Kind Regards. Beryl

[Merny5]

So very happy for you skysgal! I too supplement my methadone with 20mg. Thc gummies. After about a year I had to increase it. It doesn’t eliminate the symptoms but does take the edge off.

[wantokporo]

That is wonderful. I know cannabis has worked for many. I found it hard to dose and also had to get stoned to have it work at all and then I had a hangover the next day, and I became tolerant and had to take more. Big congratulations!! (It is horrible that people can't access it in many parts of the world.)

[the7thsong]

So so pleased to hear that @Skygal I too have a prescription from Lyphe clinic for medical cannabis and vaping helps me sleep every night. Edibles / oil don't work as well for me.