6 am symptoms

[707twitcher]

I’m currently taking buprenorphine and gabapentin for my RLS. Both are supposed to have a fairly long effective life. But lately I’ve had numerous 6am breakthroughs. I’ve adjusted timing of doses. Buprenorphine now at 9 and gabapentin (600 mg) at 4, 7, and 10pm. I also frequently get mild symptoms about 45 minutes after going to sleep . Those are easier to remedy - usually a session with my Nidra TOMAC bands quickly resolves them.

Any suggestions? I know that this would disappear if I increased my buprenorphine dose a little, but I’m trying to reduce or eliminate it. I think I’ll try splitting the buprenorphine dose to take half sometime after midnight (during a bathroom break). But that’s likely to worsen the bedtime episodes.

I can’t think of any other triggers. Just the transition to adding gabapentin and reducing buprenorphine.

Thanks

[SueJohnson]

My guess is you are not taking gabapentin at the right times. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. Since you need more than 1200 mg, take the extra 6 hours before bedtime.

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason.

[Rayme]

The morning RL is so irritating, I feel I need this last bit of restful sleep for my wellbeing! So, I'm in a similar situation, except I'm on methadone. Last night I decided to change the timing. Instead of all 7.5mg at 9pm I took 5mg at 9pm and 2.5mg at 3am. My legs were ok until 5.30am, so the reduced evening dose didn't alter things. I feel there was a minor improvement in the intensity of 5.30am symptoms. I'll fiddle around with this plan for a week or so. I also don't want to increase meds unless absolutely necessary.

[Joolsg]

What is the current Buprenorphine dose?Any reduction may cause opioid withdrawals - and increased RLS is a symptom. It may settle eventually.

Alternatively, you could try splitting the Buprenorphine dose. I take 0.2mg at 9 and 0.2mg at midnight to spread the cover until after 6am the next morning.

It's trial & error.

[mitziblue in reply to Joolsg]

I’ve suffered from RLS since I was a child. Sometimes I would cry myself to sleep at night. I don’t remember how long ago it’s been but my doctor prescribed me Ropinirole and it’s been a lifesaver. My RLS feels like you’re going through withdrawal. It’s horrible. A few times I would actually get it in my arm's as well. I honestly don’t know what I’d do without the medicine. Good Luck!

Michelle

[Munroist in reply to mitziblue]

Ropinirole is very effective initially as are most dopamine agonists. However over time they normally become less effective and Doctors frequently just increase the dose, in some cases past the maximum, which can eventually lead to a situation called augmentation where your symptoms spread to other parts of your body and to other times of the day. There are also other potential side-effects such as impulse control disorder. This is the reason that many people on this site are coming off ropinirole despite it being such a difficult process. I’d advise you to monitor your situation very carefully and if you get to the point where you think you need to increase the dose to seriously consider coming off the drug instead as it will only get more difficult over time. Please read the link below about augmentation. It is a very difficult situation because your sleep has been so bad and understandably you don’t want to go back to that but if you start to take more of the drugs it will be harder to come off them. There are alternatives such a pregabalin and gabapentin, or low dose opioids which do not cause augmentation although some may have side effects but these are less severe and not irreversible.

rls-uk.org/augmentation-reb...

rls-uk.org/medical-treatments

All the best.

[mitziblue in reply to Munroist]

Well I’ve been on it for quite some time now and so far so good. I honestly don’t know what I’d do without it.

[Munroist in reply to mitziblue]

I'm glad you are getting some relief and haven't had any problems. I'd say it's worth being aware in case things change. Best wishes

[Joolsg in reply to mitziblue]

Ropinirole is no longer prescribed by experts because it worsens RLS severely over the years In my case, it caused RLS to move to my arms, hands, back & face. They were signs of augmentation.

Please read the RLS-UK website on Augmentation. And there is a withdrawal schedule under 'useful resources'.

Ropinirole seems miraculous at first. Until it creeps up on you and makes the RLS unbearable.

Read any reply to posts headed Ropinirole/Pramipexole and you will see augmentation is extremely common.

Research studies show that after 10 years- nearly every person taking these drugs is worse off than when they started. That's because the drug feeds the disease.

Many of us are now doing very well off dopamine agonists.

[mitziblue in reply to Joolsg]

I guess everyone reacts differently. I know most medications I try I’m allergic to. All anti-inflammatories, a hunch of antibiotics and just about every medication for pain. It’s a struggle. I hope you can find something to help you.

Michelle

[SueJohnson in reply to mitziblue]

You had painful RLS a year ago and I doubt that has gone away.

I strongly suggest you visit the new Quality Control Center at the University of Virginia and ask for an appointment with the director Elias G. Karroum [phone] and no one else. If you joined the Restless Legs Foundation at rls.org as was suggested to you then you know they are the best is the world.

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[ziggypiggy]

I applaud your effort to try and further intergrate the Nidra band into your treatment regimen by reducing your buprenorphine. Best of luck. Following your progress. Thanks for the updates.

[Clamire]

Have you tried iron? healthunlocked.com/rlsuk/po...

[707twitcher in reply to Clamire]

Yes. No help, but thanks.

[Clamire in reply to 707twitcher]

🫡

[J_J_758]

Hi there! I feel your frustration I’m afraid I’ve no advice as I am living through the same experience (with Pregablin and a little tramadol). On a good night I can get 6hrs sleep but most of the time it’s only 4.5 so I’m up having to move about 3am.

Still life is much more bearable compared to this time last year when I was so distressed unable to see any light at the end of the tunnel.

Sending to lots of love and best wishes 💛

[SueJohnson in reply to J_J_758]

Are you still on 150 mg?

[J_J_758 in reply to SueJohnson]

Yea Sue I take it at 8.30pm.

[SueJohnson in reply to J_J_758]

That's still a low dose. You might want to increase it by 25 mg every couple of days until it completely controls your symptoms. According to the Mayo algorithm the usual effective dose is 200mg to 300 mg.

[J_J_758 in reply to SueJohnson]

Thanks Sue I’ll discuss it with the consultant at my next review. It makes sense to me! (they’ll have to adjust my prescription so I don’t run out at the end of each month)

Hope all’s well with you

[Bluett]

I have Chronic inflammatory demyelinating polyneropathy of which RLS isa symptom. I started taking lions mane for it about a year ago and was able to eliminate my gabapentin. My balance and coordination had gotten so far out of whack and my concentration was lacking as well. Lions mane is a mushroom that lessened the loss from side effects and reduced the demylenation. On nights that it seems to be bothering me a little more, I can just take a little more because lion’s mane is a mushroom and there really isn’t a limit to how much I can take.

[violetta254]

I also often wake up at 6am with some RLS after my methadone dose at bedtime. I use a Pulsio massager to go back to sleep. Just 5 minutes with it running it across my thighs and calves will calm that feeling and I can usually get another hour of sleep. When I sometimes wake up about an hour after I go to sleep, I just get up and have some hot milk and do a half hour of jigsaw puzzle or read and then can go back to sleep with an iron bisglycinate and a couple of Calms Forte.

[DogBella]

Can you tell me more on the Nidra TOMAC bands? I am waiting for them and wondering how you fell about them.

[707twitcher]

I’ve had them for about 4 months. It takes a few weeks of usage for them to be fully effective. For me, they only work on fairly mild symptoms - they do nothing for severe ones. They have been useful as I try to reduce or eliminate my buprenorphine and introduce gabapentin. If the buprenorphine reduction is a little too much, the bands generally handles the mild symptoms well - one cycle and I’m good all night.

But they don’t always work well, even for mild symptoms. It’s a nice tool to have, but you can’t always count on it.

Feel free to message me when you get them if you want to discuss further.