Venting about a poor night, again and no relief in sight

[HappyGreenBean]

This is more of a desperate rant than anything else -- I wish I was outside today, in the sun and enjoying life. Instead I'm in bed feeling wiped.

Last night I tried codeine, again. Only this time i tried a much higher dose. All previous times I've used codeine it's either worked alright or not very well at all. I went to bed, fell asleep with some mild rocking and woke up to what I can only describe as full body 'tremors'. I was shaking or thrashing violently. My arms and legs. It only lasted a few seconds, maybe 30secs tops.

I looked around and realised that I'd obviously not been sleeping well as my pillow was on the floor, my bedding was all over the place and I'd pulled of my eye mask. I didn't feel like I'd been sleep either.

Then came the constant RLS. After 2hrs of it with me lying on my back on the floor and my legs in the air and moving around, I went back to bed and nodded off while rocking.

A grand total of about 3hrs sleep was had.

My follow up with Prof Walker isn't until March 2024. I wrote to him last week asking for an earlier apt, explaining that the codeine isn't working, the clozepam isn't working. The gaba meds are off the table due to allergy. And, he's very-very reluctant to prescribe anything else other than oxy.

I'm making really dumb mistakes throughout the day. I forgot I had an apt this morning, they called to ask me where I was and I blanked. Once it came to me and I looked at my calendar I explained that I haven't been sleeping (I should have said for decades!) and that it was an honest mistake.

I want to know what it feels like to wake up from sleep, not from lack of sleep or PLMD. I just want to sleep. I just want to sleep.

Vent over! I have a feeling may will understand where I'm coming from.

Hope everyone has some rest this evening, where ever you are. x

[Madlegs1]

What's your concern with oxycodone?

I've been on it for over 7 years ,and it has saved my life.

I presume you have looked at all the usual issues with RLS ?

Triggering medications, iron levels and trigger foods.

[ziggypiggy in reply to Madlegs1]

I too get great relief from Oxy for RLS. I do though have issues with sleep onset. But it's just something I have to factor in. I am on year 25 of taking Oxycontin with only minor dosage increases along the way. At this point my body is dependent on the medication, which is expected . Withdrawls begin to set in rapidly if a dose is delayed or missed. This too is expected.

As others do, I have squirrled away an emergency stash for self weaning if necessary. This stash has been a lifesaver at times as there have been several interruptions of supply beyond my control throughout the years.

One other annoying aspect of being so dependent sensitive to Oxy is it makes it almost impossible to experiment and tinker with diet and lifestyle changes or other treatments to help RLS symptoms independent of the medication. My suggestion to others is to exhaust all other more benign options first such as iron, gabapentin etc ... the list Sue provides below is fantastic. My doctor and I could only wish for such options and information when we started throwing spaghetti at the wall three decades ago

Ideally, I would prefer not to have to take such a powerful medication that is strictly controlled and socially stigmatized.

[pennygates in reply to ziggypiggy]

I concur with everything you say.

[HappyGreenBean in reply to Madlegs1]

I have a few issues with it but most notably that I've watched someone close to me essentially die as a consequence of having to take higher and higher doses. They were totally out of it for the last several years of their life while being on it.

The other reasons are things that have already been noted like having to increase the dose because the body acclimatizes to it. This is already happening to me with the codeine and it's only be a couple of weeks.

Once it's on your record it doesn't look good with other Drs. I'm in and out of Drs offices every week and I've been an 'unwell' person (no fault of my own) for well over 2 decades. When I had tramadol on my records every single conversation was about how I wasn't doing myself any favours and that I should stop taking it. Codiene is less of an issue compared to tramadol for a variety of reasons. But oxy - no way.

I'm not getting any younger and my brain isn't what it use to be, I'm now beginning to struggle to advocate for myself and many of those in my life wouldn't know where to begin with such things.

In short, I'd like to delay using Oxy or avoid it if at all possible for as long as possible. I'm aware there may come a time where I won't have a choice. It may come sooner than later with the way things are going! I'm tired and tired of arguing with Drs to take RLS seriously and to understand that I'm not on these meds because I'm a wimp or an addict.

[SueJohnson]

I am so sorry you are suffering so. You might want to go private to see your doctor. Waiting until next March is ridiculous.

Since you are desperate here is my list of all of the things that might help RLS.

They may have side effects you cannot live with. They may not be appropriate for you based on your medical condition or other medicines you are taking. As always discuss these with your doctor that is if you can see or talk with him.

clonidine (Kapvay, Catapres), perampanel (Fycompa), ketamine, various anticonvulsants:[ Tegretol (carbamazepine, Equetro, Epitol, Carbatrol), Oxcarbazepine (Trileptal, Oxtellar XR), Lamotrigine (Lamictal), topiramate (Topamax, Qudexy, Trokendi), valproic acid (Depakene, Depakote, Sodium valproate, divalproex sodium, Epilim, Alti-Valproic (in Canada), Convulex), levetiracetam (Spritam, Roweepra, Keppra), Wellbutrin (Bupropion, zyban), buspar (Buspirone, vanspar), botox, Bambuterol, Naltrexone (LDN, Vivitrol, Revia), Piracetam, Propranolol (Inderal, Hemangeol, InnoPran) a beta blocker, - Provigil (Modafinal)

OTC: GABA, valerian, lemon balm, passionflower, l-theanine, magnesium, taurine, green tea, chamomile tea, black tea, and oolong tea all increase GABA, Selenium, Radix Paeoniae Alba (RPA)

I have sources on most of these.

They are listed in the order of the ones most likely to help first.

[HappyGreenBean in reply to SueJohnson]

Thanks so much Sue! x

[nic94]

Hi, have you tried CBD? It seems like it’s working well for me. I am taking some drops during the day, and some before bed, and I feel more relaxed. I am also sleeping well without feeling the need to move my legs. They usually suggest talking to a doctor before taking it, but I just bought it from Boots over the counter. You could start with 500mg, but if your symptoms are more severe, you could go straight with 1000mg. I hope you get better.

[HappyGreenBean in reply to nic94]

I have - it does nothing for me. Thanks though.

[purple-flowers]

I’m also under Professor Walker. I’m on Gabapentin 900 mg plus 2 x .088 Pramipexole. Came off of taking 6 x .088 Pramipexole per day and of course, it stopped working after a couple of years. Professor Walker put me on Neupro 2mg patches but my ankles swelled alarmingly every day. Gabapentin just makes me so tired and the brain fog is very frustrating. Some nights it helps. Last night it didn’t and I took an extra 300mg as advised. It didn’t do anything and consequently I was like a zombie today! I never realised until I joined this forum how many suffer from this awful disease. It makes you so depressed because of lack of sleep and nothing takes my mind off if it. You just dread going to bed. Wishing you well.