Caffiene - ever again?

[Perhapslove]

My RLS with Augmentation story has been told and I have been given excellent advice. The Ferritin and Iron levels have been tested and found to be low, so the therapy is in place. My gabapentin dose is up to 1200 with 300 mid-day and 900 at bed-time. My lifestyle is slowly getting back on track. But a question that I asked my sleep medicine specialist remains unanswered. "Can I ever again enjoy a cup of coffee or wine?" It seems that my 2 FAVORITE beverages are the main contributors to my RLS issues. I have been pretty good about cutting back the caffiene by using decaf or half-caf coffee. I have experimented with a little glass of wine occasionally only to suffer the symptoms later that same day. I can live without the wine but the coffee - Gees Louise, everyone and their brother is drinking coffee by the pot. I would love to get back to my favorite beverage. Any hope?

[ChrisColumbus]

Caffeine is by no means a trigger for everyone - indeed it helps some. And even where it is a trigger, a reduction rather than abstinence can sometimes be enough.

For me, iron is not my problem and taking magnesium daily while just reducing sugar and caffeine intake and cutting out artificial sweeteners (particularly aspartame) has left me symptom free. You may have different diet and medication triggers.

[ChrisColumbus in reply to ChrisColumbus]

Note: if you take magnesium you have to take it a couple of hours away from both iron and gabapentin.

[ChrisColumbus in reply to ChrisColumbus]

On the subject of gabapentin, posts here and in the Mayo Algorithm say that doses above 600mg are not best absorbed - so if you are taking 900mg in one go at bedtime this is not best practice.

As SueJohnson has previously advised you, you should take 600mg an hour or two before bedtime, and the extra 2 hours before that.

[rmbroadh in reply to ChrisColumbus]

Hi. So it's ok to continue taking magnesium with gabapentin just spaced out by at least 2 hours?

[Madlegs1]

Try freshly percolated coffee. Immediately after it is made.

[Munroist]

I have a couple of real filter coffees every morning, the second decaffeinated, and it doesn’t seem to affect the RLS. If I have it later then I don’t sleep so well and the RLS wakes me up. Luckily wine isn’t an issue.

[John_naylor]

I have tested my treats over many months, recording what I take and what the effects are. I found no RLS increase associated with:

1 espresso in the morning

1 tin of (weak) lager

2 squares of chocolate in an afternoon

This keeps me sane! My RLS goes from zero to 4 x 1/2hr interruptions per night in waves irrespective of my ‘treats’. Next phase I think will be an iron infusion as taking iron as advised (every other night with vitamin C) worked initially but then tailed off.

We are all different…

Good luck!

[Eryl]

Coffee is no problem for me and I've eliminated my rls without drugs. I've just concentrated on avoiding foods that cause systemic inflammation like refined sugars and starches like in white bread. Also I avoid refined seed oils like cannola and sunflower oil which cause oxidative stress. Low iron can be the result of inflammation i.e. it's a marker not a cause so supplementing it will likely make no difference.

[coldfeet7]

Drink tea and you can enjoy it with your friends. I should taper off to purely herbal to see if truly no caffeine helps, but I have removed all coffee (caff and decaf) to good effect.

True Confession:

I drink a cup of coffee every once in a while (maybe every three weeks). It can help with slow ... ahem.... plumbing. 😉

[ChrisColumbus in reply to coldfeet7]

I find that plumbers generally work better with a cuppa and a biscuit! 😉

[coldfeet7 in reply to ChrisColumbus]

I don't think I'll try to squeeze any more out of this thread... 8-o

[coldfeet7]

I should say, my iron is 400+, so no need for iron. Should give some blood as someone suggested a while back.

[ChrisColumbus in reply to coldfeet7]

While 400+ is a bit above most quoted 'normal' ranges for men, the Cleveland Clinic quotes 'normal' as "For people assigned male at birth: 30.3 to 565.7"

[coldfeet7 in reply to ChrisColumbus]

Interesting... I should take labcorp ranges with a grain of salt (not iron filings ;-).

[ChrisColumbus in reply to coldfeet7]

There's considerable variation in 'normal' estimates: the most common male top 'normal' figure quoted is 300 µg/L, but as I wrote some like the Cleveland give more latitude.

The concern would be if your ferritin number continued to rise without explanation

[SueJohnson in reply to coldfeet7]

There is no need to give blood with a ferritin of 400. That is not too high and if you give blood you might reduce it too much to the point where it affects your RLS. (Mine is over 500 and my doctor just said to stop taking iron tablets.)

[coldfeet7 in reply to SueJohnson]

Thanks Sue. Sounds like you took iron to get it up there? I don't take multivitamins, so mine must be from my diet and genetics I guess.

I just wish there was a way to easily check brain iron levels since that is the factor that correlates, right?

[SueJohnson]

As ChrisColumbus mentioned you should take 600 mg 1 to 2 hours before bedtime and then the 300 mg 2 hours before that.

[Perhapslove in reply to SueJohnson]

We were recently reminded that these are chats and that the advice of our medical professionals is not to be over-ridden by any advice or comments made here. While I appreciate the advice of this string of replies, all that I was asking is whether anyone believes that caffiene and wine are the problem. I am benefitting form following my dr's orders at this time and will continue to do so.

[SueJohnson in reply to Perhapslove]

The only advice I gave was what is in the Mayo Clinic Updated Algorithm for RLS. Doses of more than 600 mg are not as well absorbed. Obviously you can ignore any advice given or discuss it with your doctor. We are only trying to help.

[TheDoDahMan in reply to Perhapslove]

What about professionals who recommend augmentation-inducing dopamine agonists because they've not heard of the Mayo algorithm? Sue seems to be so well-informed compared to SOME doctors whose training has omitted any chapters on the specifics of RLS. But thank you for your well-intentioned warning.

[Birdland]

All I can say is there is no hope for me. The slightest amount of a caffeinated beverage any time of day will trigger my RLS. Same with any alcoholic beverage. Only way to find out is to experiment. Hope you are able to indulge.

[koliflower]

I have not drunk coffee or tea for 40 years, and alcohol about once sometimes twice a month. My legs are still restless.