I started Gabapentin 4 years ago, at first it helped a little. Started with 600mg, then 900mg, then 1200mg. Still not much help, asked to be increased to 1800mg per Mayo advice and DR. declined my request. Referred me to a neurologist who said"NO" to Gabapentin, and prescribed Pramipexole Dihtdrochloride 0.25m+. Per the advice from this site, I chose to say no to Pramipexole and stay on the 1200m Gabapentin. That was a year ago.
About 6 months ago I felt the Gabapentin was doing nothing. I actually thought it was a placebo as I had zero side affects. So I decided to come off it lowering my amount by 75mg every 2 weeks. I got down to 325mg and all of sudden the RLS got much worse. Day time, most the night was afraid to drive because of my leg reactions.
So a week ago up the dose to 900mg and it helped, that's where I am now. I take 300 at 7:30pm, 300, 9:00pm, and 300 at 10:30pm.
I go to the DR. next week, will ask to be increased to 1800mg, don't think that will happen
But I have a question. Was I experiencing augmentation with the Gabapentin?
THANKS!!
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C82021
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No. You were experiencing withdrawal effects. Also you are taking it wrong. You should take 600 mg 1 to 2 hours before bed and 600 mg 2 hours before that.
Then I would suggest you ask for Horizant. It works for 24 hours and you only take it once a day. It is expensive (over $6,000/year) and insurance including Part D Medicare doesn't usually cover it but you can get it from Truax Pharmacy for $165 for 3 months or $60 for 1 month . tps-rx.com/
I'm a little confused though since gabapentin doesn't come in 75 mg capsules nor tablets.
As far as increasing it, you don't want to go all the way up to 1800 mg as you may not need that much. Ask for 100 mg capsules and increase it by that amount every 2 days until you find the dose that works for you. Take it 4 hours before the dose you take 1 to 2 hours before bedtime.
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, fast after midnight and have your test in the morning. 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.
Hi Sue, I just want to say that this site has been a tremendous help to me. Am titrating off ropinirole and shifting to gabapentin and feeling better. One thing though - I read the gabapentin side effects and it is quite scary…. Memory loss, mania. fluid build up etc. anecdotally do you see these occur, or what is your take on it?
Most of them are uncommon. If they do occur luckily it is easy to come off gabapentin by withdrawing slowly and if done slowly there will be no withdrawal symptoms. The most common ones are dizziness or unsteadiness when you first get up which goes away after a few hours and yes one can have some edema although it is not usually a problem. I have both. Also many of the initial side effects disappear after a few weeks and those that don't will lessen. If coffee doesn't make your RLS worse I find drinking coffee right after I get up definitely helps with the unsteadiness.
Thanks Sue. Very helpful. One thing I’ve noticed is that my heart rate variability at night already is consistently 5-10 points higher than it was when I was on ropinirole. Given the connection between HRV and vagus nerve, I think this is important.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Could we have a name and shame thread on this site - or if that's not feasible, set up a rogue site on "rate my doctor" or suchlike.
I'm really fed up with consultants who are unable to keep up with current prescribing information, and who start people on maximum doses for medications without starting at lowest dose and titrating up .
It is really time to STOP this prescription misery.
If it were not for this site, the suicide rate for RLS sufferers would be through the roof.
We have to get tough on ignorance regarding RLS. It's not as though the information is not out there and easily available for anyone half interested in educating themselves in a specialist subject for which they are paid mouthwatering sums to dispense incorrect information.
OK- RANT OVER.
OK- You weren't experiencing augmentation, and Sue has answered the dose question.
You were correct to refuse an initial max dose for Pramipexol, quite apart from refusing it at all!!😢
Avoid taking any form of magnesium within 3 hours of Gabapentin, including most stomach potions.
Also ,please check for any possible triggers such as alcohol, antidepressants, antihistamines, msg and most processed foods.
Keeping a food diary is extremely important to check for such triggers.
I agree with Sue and Madlegs. As gabapentin doesn't seem to be covering your RLS, try taking it as advised by Sue. If 3 x 600mg doesn't help, you may need to switch to low dose opioids.
Dr Berkowski covers Ohio and Florida. He will NOT prescribe dopamine agonists like Pramipexole as he believes they cause permanent damage to dopamine receptors. We then don't respond well to iron infusions or pregabalin or gabapentin.
For whatever reason the DR doesn't want to go beyond 1200mg. Thinking of asking to be switched to Pregabalin. Thing is, I have zero side effects with the 1200mg Gabapentin which I was prescribed. Problem is I felt it didn't help. That's why (as mentioned in original post ) I tried to taper off, seeing that the DR won't go beyond 1200, I think I need 1800mg.
Very annoying, especially as the Mayo Clinic Algorithm has a medications table and states most patients need between 1200-1800mg of gabapentin, but some need 3600mg.You could also consider Horizant ( gabapentin enacarbil) as that is better absorbed and may work better for you.
Dr Arthur Walters is at Vanderbilt Institute he was my doctor here in NJ at the JFK Neuroscience Center until he left for Tennessee!! He is one of the founders of the RLS foundation and leading researchers. He just put me in touch with a Dr Scharf at RWJ Barnabus . Just starting with him had iron tests and have to go for sleep study. I guess I’m starting over!!
The medical community is definitely not educated enough if at all on RLS it’s a shame!! I truly hope they get them educated because to many people are suffering with this awful disease!!! Not syndrome! As far as I’m concerned!!
Dr Scharf did tell me they want to get away from pramipexole bc it basically is not right RX for RLS. He mentioned Gabapentin which I’ve been on for a long time. My dosage is 800mg 3x day. He also told me exactly what Sue suggested above about taking 1 at say 9pm and another right bf bed basically.
My memory is shot so hard for me to give verbatim information like Sue!!!
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