What would happen?

[Brynmr]

I've been thinking lately what would happen if I went off my meds for a day (I take 3000 mg of gabapentin daily). I imagine it would be Hell. Sometimes I'm late on my meds and symptoms start up. It can be pretty uncomfortable. I usually grab my meds and a glass of wine. I hate it. I can't imagine a night without my drugs. What about you all? Has any of you gone off your meds for an entire night? What happened?

[Rustsmith]

I have stopped most of my meds for a week on two different occasions. I found out that my untreated RLS is far worse than the withdrawal that I experienced from stopping the meds. In each case, the first day off was when I experienced most of the withdrawal symptoms, but my RLS was too bad, yet and I could get limited sleep. The second day, the withdrawal was lessened but my RLS returned to untreated levels. At that point, I could only sleep after a long soak in hot water or the times that I would fall asleep in the tub and would wake up sitting in cool water.

[Polar Bear]

I have never stopped my meds for a short period of time.
I'd be afraid of the repercussions of a cold turkey stop.
Like you Brynmr I am on occasion late with my meds and know that once the symptoms start up it can be almost impossible to regain control without taking extra meds on top of the regular dose. Regardless, taking them late is often a recipe for disaster, often a very uncomfortable evening and night.

[Brynmr]

I have never stopped my meds for a short period of time.
I'd be afraid of the repercussions of a cold turkey stop.
Like you Brynmr I am on occasion late with my meds and know that once the symptoms start up it can be almost impossible to regain control without taking extra meds on top of the regular dose. Regardless, taking them late is often a recipe for disaster, often a very uncomfortable evening and night.

Yeah right! At worse I just hang on til the meds temper the symptoms - playing catch up. There is the bouncy stuff I can put up with but the nerves twisting into knots while my sweaty skin crawls is really hard to take.

[Brynmr]

I have stopped most of my meds for a week on two different occasions. I found out that my untreated RLS is far worse than the withdrawal that I experienced from stopping the meds. In each case, the first day off was when I experienced most of the withdrawal symptoms, but my RLS was too bad, yet and I could get limited sleep. The second day, the withdrawal was lessened but my RLS returned to untreated levels. At that point, I could only sleep after a long soak in hot water or the times that I would fall asleep in the tub and would wake up sitting in cool water.

That's a double whammy. I can't imagine.

I'm not afraid of much but I fear going a night without my meds.

[Stainless]

I can relate to all of the above. The Clonazepam I've taken for the last 25 years is treated tighter than Oxy was. For most of that time had to have script every 30 days, now 90. I used to squirrel away any extra dose I got, not to take but have a spare. I don't know how I did it while traveling for business, vacations, etc. Neurologists have no flexibility to supply spares and adhere tightly to recommended max dose on their computer. The year I quit with great difficulty, just to go back on, made things worse than just staying on it in my opinion. RLS went from a bad nuisance to painful torture. I'm terrified to go through quitting again.

One thing I know is if I don't have it I will not sleep.Thx for listening.

[debbluebird]

There is no way I would stop my Gabapentin for one day/night. The withdrawal would be awful. Then the RLS would prevent any sleep at all.

[Polar Bear]

Just on the subject of Pregabalin the word here in the UK is that GPs are not going to be allowed to prescribe it. I don't know if it is rumour but I've read about it on a forum and read where a patient has already been affected by her GP not prescribing it.
Not the sort of thing I want to hear when my dosage of Pregabalin was actually increased last month by 50% by my neurologist from the Mobility Disorder Clinic.

This week I had a telephone review appointment with my neurologist to check on how I was doing on the increased dose and I asked about this 'rumour'. She said that if this was to happen (didn't deny it) it is possible that if it was prescribed by a neurologist from a hospital via the GP it would be OK, or alternatively she would see me and provide me with a 6 x month hospital prescription.

She also mentioned a patient could change from Pregabalin to Gabapentin but this would involve coming off the Pregabalin completely - to zero - before starting on the Gabapentin. You can imagine how I felt about weaning off that considering I am on max dose of Pregabalin.
However, I will assume that should there be an issue of Pregabalin that I will get a 6 month prescription from her at the hospital.
I also wonder if Pregabalin, why not Gabapentin also?

If Pregabalin does become unavailable from the GPs there are going to be a lot of desperate people in a dire situation, worried sick and stressed to the hilt.
Brynmr says about the fear of going a night without benefit of meds.
Stainless says that without his/her meds there will be no sleep.
Debbluebird says there is no way she would stop her Gabapentin for one day/night.
These are the feelings from these particular members and myself, here where we benefit from the support and experience of each other. So many other sufferers continue to struggle unsupported and put the famous bar of soap under their bed sheet!!

I'm sorry, I got carried away here, just thinking about the fears of going without our med for one night, or a week. Imagine what suffering there could be should the prescribing of Pregabalin become the issue as is rumoured - here in the UK.
Sorry to kind of sidetrack.

[Brynmr]

I'm sorry, I got carried away here, just thinking about the fears of going without our med for one night, or a week. Imagine what suffering there could be should the prescribing of Pregabalin become the issue as is rumoured - here in the UK.
Sorry to kind of sidetrack.

That's not a side tract. That's a serious concern that could lead to much suffering. This problem could easily happen in the US where the hysteria over opioids and other controlled drugs seems to be rising. 30 years ago I quit smoking and I remember this difficult nights. Hardest thing I ever did. But that pales beside going without gabapentin.

I really really wish we could get the name of our disease changed so it doesn't sound like no big deal. "Restless legs" - oh yeah like that really nails it.