What's happening??: This is week 15 of... - Restless Legs Syn...

Restless Legs Syndrome

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What's happening??

soupersuzy profile image
22 Replies

This is week 15 of Pregabalin and have just gone up another 25mg to 250mg which I took at 8.15 and 9.30 last night. It is now 4.30am and I'm up again with my twitching and jerking, unable to sleep. Probably managed 2 hours max.

Why am I not getting more relief after upping the dose, the same thing happened when I went up 25mg the last couple of times, in fact I don't remember the last time I felt any change. I'm so disappointed with this stuff. Seems I'm getting all the side effects but no benefits. Am I doing something wrong? No point in talking to my GP, he hasn't got a clue and not interested. Can anybody on this brilliant forum offer some advice please?

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soupersuzy
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22 Replies
SueJohnson profile image
SueJohnson

There is no need to take it at 2 different times. Take it all in one dose 1 to 2 hours before bedtime. And you still might need more. Try increasing it again in 2 days.

soupersuzy profile image
soupersuzy in reply to SueJohnson

Thanks Sue same things happened tonight, slept for about 2 hours now up twitching and jerking again. Tomorrow night will take it all at the same time.That will be the third night at this dose. If I increase again should I do so immediately and by 25mg or should I go up to 300mg. Thanks again.

SueJohnson profile image
SueJohnson in reply to soupersuzy

Go up by 25 mg but give each increase 2 days before increasing it again.

Amrob profile image
Amrob

For some people pregabalin takes time to work. I realise you've been on it for 15 weeks but probably not at a sufficient dose.I would advise against jumping straight to 300mgs because the side effects are that much greater at the higher doses (i know because i'm on that dose).

Another options would be to stick with the 250mg pregabalin AND introduce a sleep aid (eg a benzodiazepine) for the next two weeks. Then reduce the sleep aid gradually. In that time the pregabalin should have started to work at the higher dose. If not, then add in 25 mg at a time.

soupersuzy profile image
soupersuzy

Thx Amrob maybe I'll stick with 250mg for another few weeks and see what happens. I really don't want to increase as already suffering side effects mainly swollen legs and feet, double vision and I'm pretty unsteady at times, like I'm drunk. Bit like all the pain without the pleasure lol.

SueJohnson profile image
SueJohnson in reply to soupersuzy

If you decide to use a sleep aid, I would recommend ambien which is not a benzodiazepine.

Amrob profile image
Amrob in reply to SueJohnson

Benzodiazepines are associated with decreased limb movements of sleep and also assist in sleep maintenance.

SueJohnson profile image
SueJohnson in reply to Amrob

At Dr Buchfuhrer's treatment page on his website at rlshelp.org/ He states: "It is not a benzodiazepine, but it does work selectively on some of the benzodiazepine nerve receptors. Because of this selectivity, Ambien appears to have fewer side effects than other drugs in this class. It is unique in sedative pills as it does not alter the sleep stages. Most drugs in this class decrease stages 1, 3, and 4 (and possibly even REM sleep) to increase stage 2 sleep. There have been as yet, no reported tolerance or withdrawal problems with long term usage of Ambien. There are also no problems with rebound insomnia (increased problems falling asleep the night after using the drug) which occurs in short acting sedative."

soupersuzy profile image
soupersuzy in reply to SueJohnson

Thx Sue that's interesting, don't know if my doctor would agree but worth mentioning. Last few nights have taken 250mg all at once as you suggested and I think I've had more sleep although quite broken. But broken sleep is better than none!

Maximus01 profile image
Maximus01 in reply to SueJohnson

Hi Sue, forgive me for barging in here, but these are my concerns too. I am still taking 1200 Gabapentin and, after the sleep study, there is less movement of legs during sleep-- "Moderately frequent amount, but rarely causes sleep disruption." I also have "mild obstructive sleep apnea" which came as a surprise to me,. The doc and I will be talking about what I should do next on Sept. 15th. Whether CPAP or other contraption. Don't know whether I can fall asleep with something on my face--since I have trouble falling asleep anyway. I have had the worst time sleeping and mostly feel like a truck ran over me when getting up. Summer time seems to be more difficult for me sleep wise. I have some Ambien 10 mg which I have not used in over a year. The pharmacist said it would be ok with the 1 mg Lorazepam I am taking for years. (Of course, at the time I was not taking Gabapentin.) I am thinking of cutting the Ambien tablet into four pieces and take one (2.5 mg) with the Lorazepam and the Gabapentin. Would that be too much to take together?

SueJohnson profile image
SueJohnson in reply to Maximus01

No - I wouldn't think so.

soupersuzy profile image
soupersuzy in reply to SueJohnson

Thanks Sue

oldfidgetlegs profile image
oldfidgetlegs

I could have written your post - I have identical issues so I'm really interested what the group have to say about it! It probably isn't much comfort to know that - sorry! Hopefully you will get some very useful advice. Good luck.

soupersuzy profile image
soupersuzy in reply to oldfidgetlegs

Sorry to hear you're suffering too. Hopefully the replies will help you too. Good luck.

thorp profile image
thorp

It may be you are allergic to a constituent in the pregabalin.

Some manufacturers of pregabalin use SLS or Sodium Laurel Sulphate in their capsules.

I am allergic to this and have major RLS reactions when i take pregabalin from manufacturers who use this

I have made a list of manufacturers whose pregabalin capsules are available in UK and who use this.

I give this list to my pharmacist and tell him never to give me pregabalin made by these manufacturers

PLEASE DO NOT PRESCRIBE:(These all use SLS)

Pregabalin Accord

Pregabalin Amarox

Pregabalin Lyrica

Pregabalin Milpharm

Pregabalin Mylan

Pregabalin Ranboxy;

Pregabalin Dr Reddys

Pregabalin Relonchem

Good luck

soupersuzy profile image
soupersuzy in reply to thorp

Hi thorp thanks for your interesting post. I nearly always suffer side effects from medication I'm given so no surprise Pregabalin could be the same. Is SLS a very frequent allergen? Thank you so much for listing all those manufacturers, I do have some Relonchem at the moment. I have spoken to my pharmacist about this but they insist they have can only get what is available. Practically every time I get my prescription it's a different brand, really annoys me but unfortunately that seems to be the NHS. However will give them a copy of that list and see what happens. Thank you again.

Amrob profile image
Amrob in reply to soupersuzy

The side effects that you describe are common with pregabalin. Generally they tend to settle down after a period of time.

soupersuzy profile image
soupersuzy in reply to Amrob

Oh I do hope so Amrob, although 3 months is quite a long time, but fingers crossed.

thorp profile image
thorp

Not many people are allergic to SLS. Fortunately.

There are a number of manufacturers whose products sell in UK and who do not use SLS in their capsules. .Here is the list I give to my pharmacist.

Please ONLY PRESCRIBE: (these do not use SLS)

Pregabalin Alzain

Pregabalin Axalid

Pregabalin MSN

Pregabalin Neuraxpharm

Pregabalin Northumbria

Pregabalin Sandoz

Pregabalin Sciecure

Pregabalin Teva

Pregabalin Tillomed

Pregabalin Wockhardt

Pregabalin Zentiva

He always give me pregabalin from one of these.

But of course you have to take whatever he can get ie If you take 200 mg, you might have to have 4x50mg rather than 2x100mg

Hope it helps

soupersuzy profile image
soupersuzy in reply to thorp

Thank you so much for that info thorp, I will have another word with my pharmacy, might get someone else who is a bit more understanding. I see you are in UK so you know how it all works, or doesn't, when it comes to patient requests. Out of interest how did you find out you were allergic to SLS?

thorp profile image
thorp

I was using pregabalin 50s plus one at 25 for my dosage of 175 per day

my GP upped my pregabalin medication from 175 to 200 per day

so she prescribed me 100 's

my 50s were pregabailn Teva but the new 100s my pharmacist gave me were pregabalin relonchem

For two nights i took the relonchem 100s

my RLS symptoms started much earlier, were stronger and lasted longer in the morning

So i compared all the ingredients from the Teva and the Relonchem

and SLS was the only one that stood out as a possible allergic constituent

So I switched back to Teva

and stronger longer lasting RLS symptoms went away

soupersuzy profile image
soupersuzy

Hi thorp been offline sorry. I was interested in your last post as I have just been able to get some Teva Pregabalin as I always try to get Teva for other meds. This is the first time so fingers crossed they will be good for my RLS etc. although I am on 250mg much higher than I would like. Hope you continue to be able to get your Teva, best wishes.

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