My symptoms are 24/7, ferritin 120. I have been taking 1800mg split into 3x600 during the day for two weeks now, having gradually increased to this over a couple of months. No effect on symptoms yet. My gp said if this dose didn't work it wasn't worth going higher. His alternative is to add pramipexole at night (not sure how that will help my daytime symptoms though). Not keen on going down the DA route though, but getting desperate for a solution.
Just wondering if anyone has found a higher gabapentin dose worked for them? Or is it worth thinking about pregabalin switch? Someone mentioned that in a previous post
Thanks
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Nottsali
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I would imagine the increase in side-effects at these larger doses would be quite off putting. I went through to the highest dose some years back with no effect on my RLS - although I was not doing all I should have been doing as in dietary and lifestyle modifications.
In my opinion I'd say your Dr is right UNLESS you've been through a good few drugs with no benefit, in that case I'd ask nicely (very) if they would extend you the courtesy of going to the maximum/effective dose although with NO change at those levels I'd really doubt there'd be any - but you never know.
The DA's are b*****ds, I really do not like them. That said if they bring peace to the body they are worth looking into - just make damn sure you are well read up and aware of your self (so if things start to change you can spot rapidly and get it nipped in the bud). Have you tried opioids? For me there are no drugs as good, but as I am sure you know they are not always prescribed easily for RLS. If you are in the UK Targinact is on offer and it is very effective imho.
Moving away from prescribed drugs you have Cannabis and Kratom - both effective to varying degrees, (isn't everything?), but also carrying other legal implications.
Make sure you have looked into changes such as avoiding alcohol, caffeine and other stimulant substances while altering diet - I go gluten and dairy free others low food map and some vegan. Check out Gentle Iron too.
Thanks Raffs, I do need to look at lifestyle factors. I had forgotten sbout targinact, not sure whether gp will prescribe without me trying a da first, but I'll ask next time. Have started gentle iron too.
From what I've read, it seems your doctors right I'm afraid in that after a certain dose of Gabapentin, a higher dose will make no significant difference. Pregabalin, I hear is more potent.
Pramipexole, although not a happy choice is generally more effective than Gabapentin, but if you agree to start on that you need to be well informed about the consequences. Particularly augmentation.
Which suggests to me the possibility of exploring another option.
Based only on the information you've given, I'm assuming that you've never taken a Dopamine Agonist before, (e.g. Pramipexole), RLS can occur 24/7, I believe, but is probably rare. One of the classic diagnostic criteria for RLS is that it occurs in the evening. My experience of RLS is that it can occur during the day, but that is because I developed augmentation as a result of taking Pramipexole for years. You appear to have augmentation before you've even started on Pramipexole, that is unless you have previously been on a dopamine agonist.
In a nutshell, because of this, are you certain that you actually have RLS? Who gave you that diagnosis and what exactly are your symptoms?
Thanks, trying to get a diagnosis has been hard, my symptoms fit the other 3 criteria, but came on really quickly in a zero to full on way over about 2 months. Definitely worse when sitting/lying down. Spinal Mri scan showed various changes related to age which my nhs neurologist said "may" be responsible and suggested the gabap or ropinirole, preferring the former because of the risk of augmentation/icd. He discharged me, gp said it "is probably" rls. Mum had it in her 70s, doesn't seem to now (she's 94) . Jury still out for me though, all the descriptions of the pulling, tingling, bubbling etc fit it to a t, and better momentarily when I move around, so it's the nocturnal bit that doesn't fit.
I'm considering trialling the prami for a couple of nights almost as a diagnostic test, Dr B suggested that a while ago. I'm also thinking about paying for another neuro consultation.
Hello again. If your RLS came on suddenly, it does suggest that something might have triggered it. Did your doctor or the neurologist order any blood tests. Ferritin is the main one and yours seems to be OK. Other than that it might help eliminate other possible causes if you had blood tests for renal function, thyroid function and diabetes if you've not already had these.
Did you start any other medication 7 months ago?
Yes you could try Pramipexole as a "test".
You'll have to be careful that if it doesn't immediately work (it usually does work immediately) that you don't end up escalating the dose so much that the risk of augmentation also escalates. Your doctor may urge you to keep increasing it.
You might also want to start reducing the gabapentin, I believe that it's of no extra value to take any more than 1200mg and 900mg is probably the maximum.for RLS. You can't just stop it suddenly and taking Gabapentin and Pramipexole together can make some of the side effects worse.
Paying to see a neurologist is a bit risky unless you know for sure that they are knowledgeable about RLS. RLS is not a neurologists "bread and butter" as it were. It might be difficult to find one that has taken an interest in RLS.
I had this same dilemma myself a few months ago, luckily I didn't bother as i've managed to deal with the situation myself.
Agree about neurologist. There is one near me who had a conference presentation on rls and ferritin, so I figure he is at least aware. Prof Choudhuri in London is too ecpensive for me with travel from Midlands
You mention that the nocturnal bit doesn't fit. Are you able to sleep at night? Most people with RLS are unable to sleep because the RLS kicks in straigt away.
Are you taking any anti depressants or anti histamines ( including cough meds like benadryl) or any herbal sleep tablets like Nytol? These can all trigger RLS.
No other meds. It does disturb my sleep sometimes, but usually once I fall asleep I don't wake up much . Symptoms are no worse at night than they would be if I lay down during the day - oh how I miss the days when I could lie on the sofa watching catch up tv without changing position every few minutes!
I think that partly because I have learned to cope during the day, then at night I just keep altering position till I fall asleep. I don't exhibit PLMS either. All a bit weird. My gp says we may never know the exact cause, but hopefully will find an effectivd treatment.
Might be worth reading the link below if you are considering Gabapentin. For myself I find medical cannabis and diet helps. I also find having a hot bath (sometimes in the middle of the night) very effective and have ordered Zen Chi Relaxiciser Mk3 and will report whether it helps with my legs. A friend found it helpful.
I read your post and the replies. I would be wary of that high dose of gabapentin (look up side effects and withdrawals).
If your RLS came on suddenly as my severity did a couple months ago, you might find it was triggered as suggested by some other disturbance. I believe mine may have been triggered by post-shingles/herpes and for that, gabapentin is prescribed along with 1200-1800 mg of acyclovir for a four-week period. I added the acyclovir after finding a study case where it was done and the RLS disappeared. Here’s the link about gabapentin used for this :
Neurontin (gabapentin) is an anti-epileptic drug, also called an anticonvulsant. It affects chemicals and nerves in the body that are involved in the cause of seizures and some types of pain. Neurontin is used in adults to treat neuropathic pain (nerve pain) caused by herpes virus or shingles (herpes zoster).Oct 29, 2018
Drugs.com › neurontin
Neurontin Uses, Dosage, Side Effects & Warnings - Drugs.com
I’m addition, I’ve been posting about ‘The Absolute Cure’ at rlcure.com and having good results with it as in little to no RLS over the past 16 days. Check it out, anything is worth trying to stay off these drugs. Wishing you the best.
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