Fired the doc a year ago..here I am today

[Ballybofey26]

I'm off pramipexole almost a year now!! I take no meds (since a year) and have moved from chronic RLS to mild- moderate. I sleep at night in blocks of 3 and 4 hours. In between I watch light tv on YouTube like Poirot, nothing too exciting! It takes my mind off the restlessness. Too much stretching at night caused me pain/ soreness during the day! I might have the odd bad night. But v odd. I notice that when i took antibiotics for a while it messed up my rythym and took me a while to get back on track. Incredible. I nearly went mental a year ago with all the symptoms I had which included electric like shocks going thru my body. I still don't know what causes my RLS and I am well read on the topic. However i just keep doing what I've been doing this past year....exercising, good diet( green veg, fruit, nuts, seeds etc) keeping my values up ( and it's always a personal thing , for me it includes taking large dose magnesium and vit d daily, and iron and vit c every second day....AND focusing on my health not my disorder. Thanks to this forum for providing the motivation to take the action. Hugs to all suffering from this disorder. I have been journaling a year now, I write down everything I learn, diet , exercise , tracking sleep, trends, weekly trends, monthly trends. I think it gave me a sense of empowerment. Taking my health into my own hands! I have not journalist now in a month. Must do a little update!! xo

[LotteM]

Thank you for sharing. And how brave to go without meds, but I must admit from what you write it sounds feasible. It seems to require discipline though. And I applaud you dor keeping it up. I think what you write about focusing on your health and not on the disorder is a relevant aspect. But again difficult to maintain on bad days and especially nights. Still, I find tour experience heartening. So again: thanks! 🙏

[Madlegs1]

Well done for your progress.I'm fascinated by your possible story!

You're Swedish, but named Ballybofey??

I'd love to know the background, if I'm not being too nosey?

Good luck.

[Bluebboat]

Thank you for this post which keeps up my hopes that there is a non drug route out of this disease. The forum needs posts like yours to increase the critical mass of anecdotal evidence for such an approach. The criticism that anecdotal evidence is not the result of gold standard random controlled trials and is therefore too ‘subjective’ is so difficult to counter, but as we know hard trialling of medical evidence is only available to research institutions and usually only available for drugs or large medical interventions.

[Nettles68 in reply to Bluebboat]

Hi Bluebboat,I can see from your previous posts that you were using an infrared lamp to ease your RLS with some success. Do you still use the infrared lamp?

[Bluebboat in reply to Nettles68]

Hi Nettles. Yes I do still use it as one of my nightly devices to temporarily stop the ghastly restless feeling. However I generally find yin yoga stretching more effective. I’m not sure I have my supplements quite right as I still have some bad nights but things are better and I do get some sleep. I take codeine occasionally but nothing completely works. However I remain optimistic that there is a complete non drug regimen that will make it totally manageable. When I find it I’ll post it.

[Nettles68 in reply to Bluebboat]

Thanks for getting back to me Bluebboat, much appreciated. I have heard others mention yin yoga, I will have to look into this for myself. Glad to hear you are getting some sleep at least and yes if you do find a non drug regimen that works well please do report back!

Take care 🤗

[Nettles68]

Thanks for posting Ballybofey26,I would absolutely love to find a non medication solution such as you have found. It is very encouraging to see that it is possible at least for some.

Long may it last 😊

[janland]

Hi..I have just read your message and am very pleased for you...

I am similar in that I don't want to go down the drug route from doctors and risk augmentation and horrid side effects even before the cause has been found..

I am cutting looking for a neurologist.. privately...but where to start..

During the winter the restless legs is worse... not sure if it's connected with the circadian rhythm or not..

For example this last few weeks it's been quite bad... awful in fact... even though I do similar to yourself... take vitamins..

I take

Magnesium..

Vit D..

Oregano oil..

Probiotics..

B12.... Perhaps a b complex would be better..?

Folic acid..

Cod liver oil..

And if I am woken several times in the night I massage legs with magnesium oil.. and include ginkgo biloba and l phenylalanine...

Which is most nights..

It costs a fortune for all these tablets but I think they mitigate the condition somewhat...

Mabe it's stress that causes rls..?

Mabe it's all connected up with other ailments diseases or problems we have..

Such as high blood pressure..

Hypothyroidism.. for which I take levothyroxine..

Perhaps its chicken and egg situation..

I know lack of sleep can cause high blood pressure...

I would love to hear back from you with your thoughts about all this..?

Best wishes

Jan

[Jumpey]

I'm really pleased you are coping without meds. I totally agree about focusing on the positives.x

[SueJohnson]

Nobody knows what causes RLS although for some there is a genetic component which is my case. Stress doesn't cause it, but can make it worse. Have you had your ferritin checked?

[Joolsg]

Brilliant news. Thanks for sharing your journey and how you're dealing with your RLS. I'm sure many of us wish we'd never started dopamine agonists as we might have been able to control it with supplements and diet.Keep us updated.

[Cowbsky]

Hi, Ballybofey_You: "I take no meds (since a year) .....I sleep at night in blocks of 3 and 4 hours. In between I watch light tv on YouTube like Poirot, nothing too exciting!....AND focusing on my health not my disorder....Taking my health into my own hands! "

_ nice to hear this your approach! sounds rather similar to mine, which could go like this, just to share:

(1) I am 69; RLS since 7, I think. No meds currently, since some two months, when I was on 0.4 mg and stopped Clonazepam (wonderful drug for me). Longer ago I tried Pramipexol (shor time, awful thing: does kept legs quiet, yet pretty much no sleep; and Pregabalin (some two months: does work, yet unbereable side effects...gave up both forever);

(2) Because I am also a UARS sufferer and use a Bilevel CPAP, I have been tracking closely my sleep (tons of data from app OSCAR, free from Internet), every night, now, for some 1,200 days, I am very familiar with pretty much everything I go through each night. I have also a HYF index (how you feel) for all my days. As you said: taking my health into my own hands!

(3) Sleeping in phases (maximum 3.0 hr-long blocks) was a crucial and turning point for me, which I found out some 1.5 years. Then, these days, under rigorous sleep hygiene, I go to bed by midnight (sleeping within maximum some 15 minugtes) and get up 9:00 in the morning, yet with a total net sleep of only around 5hrs ( following day, between earth and heaven) to 6 hrs (heavens).

(4) In between phases, for a total of some 3 hrs, soundly awaked and doing something or not, I stay in bed, either (a) tapping to stop RLS crises (see on EFT technique, just in case, in my replies elsewhere), which pretty much every night come by 1;30/2:00 am, and around 4:00 am; (b) meditating, or (c) reading;

(5) with this approach I ende up with some 80 to 90% solution for my two sleep drawbacks (UARS and RLS, this latter more severe maybe) (please, see picture attached);

(6) currently, I am in a process of revisiting one ENT (just went to a new PSG and face tomography) to see what ultimate decision I will take from now on: either back or not to 0.4 mg of Clonazepam (to deal with a hypersensitive nervous system) or keep evolving whithout no med at all (this my tendency);

(7) Clonazepam at low dose is not meant to stop RLS, no need for that, but rather to calm dow my nervous system, increase arousal treshold, allow quicker back to sleep after so many awakenings in the night, and to leave a residual sleepness to be complemented with tapping, , and, consenquently, retuns better life quality, with no significant side effects.

all the best and good luck to all

sleep tracking for the last couple of months

[Freegaza786]

Ballybofey26 Glad to see I’m not the only one wanting to take the no medication approach but god it’s hard.

My story, severe RLS was triggered in February 2020 when stopping pregablin abruptly, which I was taking for another reason.

At the time was on 3 different medication for anxiety. Come off Lorazepam January 2020 after adverse reaction and then mitazipine in May 2020. Symptoms improved intially then worsened.

Started a DA Ropinorole in September 2020 which initially helped. Then 5 days after a dose increase in January 2021 my symptoms worsened.

It wasn’t until May 2021 I found out I was suffering augmentation, and quite severe. I stopped abruptly. Withdrawal was bad.

I was prescribed tramadol initially 50mg then 100mg, which I took vary scarcely only when nights were extremely bad.

Still being on one more anxiety medication which I believed was worsening my RLS I come off in July 2021. Initially symptoms improved but after 4 weeks they came back with a vengeance.

I was then given Iron infusion around that time which did not ease any symptoms.

I was advised pregablin. I refused. And wanted to Continue to find triggers and causes of symptoms intensifying. Caffeine being a big one for me. Also changes in diet and lifestyle. After finding triggers, initially symptoms would improve but then worsen.

Medication absolutely scares me because of my experience. However over last few days I have stated the pregablin at 50mg every other night and it has worked and symptoms have eased. But I’m also apprehensive that how long will this low does continue to work for. Inevitably I will have to have a dose increase. And after reading your post I’m doubting weather to have actually started taking pregablin was a good idea in the long run.