The Story Continues

[Lineker]

Just a reminder: I seem to have a nasty mix of RLS and Long Covid. I have successfully come off Pramipexole and have moved to Gabapentin. Despite experimenting with the dosage I have had little luck sleeping. In desperation last night I took some Cocodamol. Result: I slept for two hours and then five hours. Wonderful, though I am aware of the potential dangers of a reliance on Cocodamol. Would the Cocodamol work without the Gabapentin?

This has left me with a dilemma - what to do next. Anybody have any suggestions? I thought about changing to Pregbalin. Can this been, done easily? Are there any possible advantages? I am also trying acupuncture (mixed results) and I have a hypnotherapy session booked for next week.

As ever, any suggestions would be gratefully received. Many thanks in anticipation.

[SueJohnson]

You can switch easily but the only advantage of pregabalin is it can be taken in one dose rather than having to split the dosages above 600 mg or if there were side effect one couldn't stand. Since gabapentin has worked in the past for your RLS I think you just need to increase the dose to find what works and keeps working. 3600 mg is the maximum. I wouldn't worry about becoming addicted to cocodamol as that doesn't really happen at the doses that are used for RLS where one is using it for RLS and not to get high. It is possible it would work without gabapentin but you would probably have to increase the dose and again why would you want to when gabapentin has worked for you in the past. It's great that you are now getting some well needed sleep.

[Lineker in reply to SueJohnson]

Thanks so much Sue. It is wonderful to have your advice. What would we do without you!

[Oliversmom55 in reply to SueJohnson]

gabapentin is a nasty drug. It did not help me. I added Tramadol and it’s better for me.

[Lineker in reply to Oliversmom55]

In what way is it nasty? Some details would help. Thank you.

[SueJohnson in reply to Oliversmom55]

It is not nasty. It can have side effects that some people can't live with, but many people finds it helps their RLS and in many cases eliminates their symptoms as it does for me. It is the first line treatment for RLS. I'm glad the tramadol is working for you. Just be aware that it is the only opioid that can cause augmentation in some.

[NeuroSeeker in reply to Oliversmom55]

Pretty much every drug has a "nasty" side, some worse than others. Gabapentin does have side effects, including long term issues with memory, etc. However given the reality of RLS and the alternative treatments, it seems to me gabapentin is the lesser of the host of other evils RLS suffers get subjected to.

gabapentin enacarbil (Horizant in the US) is an extended-release version of gabapentin; I take it along with old fashioned gabapentin (since the Horizant doesn't last the full 24 hours) and 2 low-dose hydrocodone (not all at the same time - old fashioned gabapentin during the day, Horizant and the hydrocodone in the evening). This has been my best combination so far.

[SueJohnson in reply to NeuroSeeker]

That answered the question I had on another post. Do you have RLS during the day as this is not common?

[NeuroSeeker in reply to SueJohnson]

I do. It will often start in the afternoon. I start taking gabapentin at 4:30, sometimes earlier.

One of the signs of augmentation is earlier and earlier onset of symptoms. Before I came off Mirapex, I would start getting the electric leg-bone wormy feeling around 10 am. Now it rarely starts before three. It is moving up my body, though - at first it was my legs (of course! ). Now it's moved into my lower spine and hips and my arms from the shoulder down.

I'd say my RLS is moderately controlled. I'm sticking with what I've got for now, for as long as my doctor is allowed to prescribe the hydrocodone. The anti-opioid trend in US Healthcare is leaving many sufferers in RLS agony. Luckily, my sleep/RLS doctor is very smart and doesn't take idiocy lightly, and i think she has my back.

Of course, my (quite expensive) insurance won't pay for it, and the pharmacy charges $66 for one month of pills. I have to use one of those secondary prescription plans for this one RX and am usually able to pay around $25. The pharmacy still holds drugs up every couple months for "review." It feels more like another corporate big brother, to be honest.

Cheri

[Edengirl58]

I’ve no advice re meds as am managing ok on iron infusion and Gabapentin. However as a fellow sufferer of debilitating Long covid I wanted to sympathise. When either are very bad it’s difficult to manage both together, and I feel very aware of having two diseases that people just don’t understand.

[Lineker in reply to Edengirl58]

Thanks for your kind words. I am glad you have the RLS under control.