update from neurology appt last night

[Zenawarrior73]

firstly a huge thanks to Sue,Jools, Desert and Chris in here who have given me brilliant advice since I joined all which helped last night at my private neurology appt

My story was history of on/off restless legs but had bilateral hip surgery 1st Feb this year and a week later started with all over muscle twitching and my restless legs returned with a vengeance

My neurologist tried telling me I as anxious at my last appt 🤷🏽‍♀️ but did refer me for an emg and nerve conduction as my right arm kept going dead

The nerve tests came back fine.

Any how I went to see a rheumatologist who ran loads of bloods and discovered I’m hypo-calcaemic and have v low iron ferritin saturation etc I posted my readings yesterday and my antiphosoholipid readings are higher meaning my blood clot risk has increased.

Anyhow I’m on prescription calcium supplements and Have bought the iron bisglycinate which helped last night (thanks Desert)

So the neurology appt - I showed him Sue’s advice and his words were that’s very solid advice let’s get you started on Pregabalin.

by the time I got back the pharmacy was shut so I’m off this morning to get my script - he has said start on 2x25mg however, and I note Sue you say start at 75mg at night and take 2 hours before bed is that right?

I’ve also got the diazepam to help with the twitching as my muscles can get so fatigued but don’t use it every night.

Last question does anyone get any side effects and do I have to be careful with my iron magnesium or calcium supplements near my Pregabalin?

Also did anyone gain weight on Pregabalin as the diazepam I’ve been on and being less active post surgery has already seen me gain 7 pounds 😬

Honestly without this group I’d be lost so a huge thank you I wish I could give you all a big hug 🤗

[Hidden]

Hi Zena, sounds like good news all the way around. I would meditate on taking the Pregabalin, as long as the iron is truly providing you a decent night’s sleep.

Well, speaking of calcium, it’s part of my not yet ready for prime time 2am RLS treatment. While I was taking Trazodone my RLS was getting worse (and I didn’t make the connection), as well as my self-diagnosed small fiber neuropathy. I was recently tested for PN and I don’t have that. Anyways, one particularly bad night while on Trazodone, my brain went into over-drive recalling all the substances that are supposed to cause a “pop” of dopamine release. I could only recall calcium and potassium, but I nevertheless ran to the kitchen and put calcium citrate plus an electrolyte solution containing potassium into water and chugged it down. Like I’ve said before on here, I’m dangerous, and I’m not recommending this, only relaying my experience since you mentioned calcium.. My cocktail worked and as the RLS was leaving and I was falling asleep a little voice in my head said “You IDIOT, it’s the trazodone.” I stopped the trazodone and two days later there was a noticeable improvement and after a week I was back to baseline. Luckily, for those two days my super-secret cocktail worked, whereas the iron didn’t quite cut it.. This was back in January that I stopped. Then I started a PPI. It took a couple months, but I ended up right back where I was with the Trazodone. I so didn’t want to give up the PPI, and even though the cocktail was helping me through, I knew I had to stop it.

The cocktail is not an everyday thing. It causes a release of dopamine, most likely similar to orgasm, only longer lasting. I assume I would have to keep increasing the amount to get the same effect. It is an emergency med, that’s it.

[Zenawarrior73 in reply to Hidden]

That’s really interesting about the cocktail at 2am working

One of my other meds Topamax is a calcium channel med so I’m wondering if that’s what’s leeching the calcium out of my body 🤷🏽‍♀️ the neurologist wants me off the Topamax and on the Pregabalin as the alternative as Topamax is hard on the kidneys

Ideally I’d rather be on no meds but I need to see how my symptoms fair this week I think.

The body is a complicated machine that when it’s homeostasis is knocked out not does it go wrong!!

[Hidden in reply to Zenawarrior73]

Wait, are you taking a calcium channel blocker, which Topamax is not, as far as I know??? Calcium channel blockers will greatly worsen the symptoms of RLS, but in the long run may up-regulate the receptors. Topaz may leech calcium which I need to research. In which case it may be just as bad as the blockers??? Bedtime. Please feel free to respond. I’m up every two hours to pee.

[Zenawarrior73]

ahh I thought Topamax was a calcium channel blocker my mistake but I’m sure I read somewhere it can effect calcium levels thanks Desert

[SueJohnson in reply to Zenawarrior73]

It does cause loss of calcium through the kidneys.

[Zenawarrior73 in reply to SueJohnson]

Thanks Sue that explains it and. Possibly why my levels are low

[Hidden in reply to Zenawarrior73]

I would think twice about an iron infusion. It may make your calcium levels worse. ncbi.nlm.nih.gov/pmc/articl... Plus, the iron at night trick won’t work for at least a few weeks after the infusion, nor will the infusion itself.

There’s a thoughtful, important, and rather scientific debate going on here whether infusions help with RLS. I’m in the “they only work, maybe, if you’re truly anemic camp.” I believe that the iron at night trick should always be recommended before an infusion since we’re talking about $10 and one night of your life versus a somewhat big deal infusion that it seems people have to beg for and pay for out of pocket.

[Zenawarrior73 in reply to Hidden]

I’m deffo going to stick with the nightly iron for a while and see how I fair before any big decisions I’m hoping my ex bosses partner who’s the haematologist might be able to shed some light on the muscle twitching aspect as both neurologist and rheumatologist are stumped as to why it’s happening maybe when all my levels return and my body feels like it’s recovered from the trauma of surgery it might start behaving again …. Who knows I can live in hope

[Wordsworth99 in reply to Zenawarrior73]

Hi Zen, the muscle twitching could be a magnesium deficiency? It’s definitely one of the symptoms. I know you are taking magnesium but perhaps you need to take more or a different type? Some are better than others. Magnesium deficiencies are very common but difficult to determine because 90% of magnesium is located within cells, so standard blood tests can’t measure total body magnesium. We lose a lot of magnesium each day due to things like sweating, stress, alcohol and some medications. During an operation we lose a lot of iron due to blood loss, and the same would go for magnesium. I wish you all the best, and a hug back to you!

[Zenawarrior73 in reply to Wordsworth99]

Hi Wordsworth thanks for this I was taking a threonate at night but switched to taking a soluble glycinate in morning with my calcium plus D and the magnesium threonate an hour later 2 days ago when I changed my iron to 60mg bisclycinate and last night my symptoms on both my RL and the twitching were less so I’m hoping this might be the winning combination

Thanks for the hug and the advice and sending one back to a fellow restless legs warrior

[Munroist Administrator in reply to Zenawarrior73]

If taking iron bisglycinate every night relieves your symptoms then there’s absolutely no need to look at things like pregabalin or gabapentin or anything else other than eliminating common triggers like statins, SSRI’s etc. Pregabalin can be tried without any real difficulty but most people see one or two side effects. I took it for a year for neuropathy and it didn’t seem to help the RLS. I put on a small amount of weight but that was probably careless eating rather than pregabalin itself. I also found a slight “cognitive fog” which would be tolerable if it cured the RLS but it didn’t. As long as you increase or decrease slowly and give yourself time to notice the changes then it should be easy to experiment. However as above if iron bisglycinate every night works then you are sorted and lucky!

[Zenawarrior73 in reply to Munroist]

Thanks for this Munroist the last week I’ve been staggering my calcium and vitamin D taken with a teaspoon of olive oil as I’m deficient doing the nerve flossing and targeted stretching to relieve pressure on the nerves that my physio and I are trying to help settle the muscle twitching and taking 60mg iron on an empty stomach at night and already the twitching is 60% less after 5 months of hell and the restless legs probably 65-70% better

[SueJohnson]

Yes on the starting dose of pregabalin. It is possible you may gain weight on pregabalin although most people don't. If you are concerned about that you might want to ask your doctor for gabapentin which is less likely to cause weight gain. They are basically the same drug except you need to divide the doses, Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

You can take magnesium at the same time as pregabalin and normally I would say you could probably take calcium at the same time but in your case I wouldn't. Iron is no problem for either one.

Sounds like you have a good neurologist. Could you give me his/her name so I can add him/her to my list of doctors in case someone else needs a recommendation.

[Zenawarrior73 in reply to SueJohnson]

Hi Sue his name is Professor Evangelou at the Park hospital in Nottingham and thanks for the dosing advice that’s really useful

Normally the weight gain wouldn’t bother me as I’m naturally rather slim but the diazepam I’ve been in for 5 weeks has seen my weight creep up by 8lbs and I’m just a bit concerned another medication with this as a side effect could see me needing a whole new wardrobe v soon 😬

I’m going to see how I go for a few weeks and if it’s creeping up I may switch to Gabapentin is there any idea why Pregabalin is more likely too

To be fair the state I’ve been in recently I’d take the lbs over the agony

[SueJohnson in reply to Zenawarrior73]

No idea why pregabalin is more likely but everything I have seen has said this.

[Joolsg]

You start 75mg pregabalin at night for RLS and increase by 25mg every other night up to 150mg.Pregabalin can cause weight gain as it increases appetite and causes water retention. So can gabapentin. Try to stick to your normal diet.

On the blood test results, if your serum ferritin is low, that is probably the cause of the RLS. I would ask for a referral to a haematologist so you can get detailed advice on the blood clot risk and whether an iron infusion would be a possibility.

[Zenawarrior73 in reply to Joolsg]

thanks so much Jools my old managers partner is a consultant haematologist who is going to take a look at my results next week for me so I will ask

[Suhavard]

this group is awesome! Especially Sue and Joosleg, they have really helped me. I take Gabapentin 2 hours brfore my calcium, magnesium and iron but I’m not sure if the same rules apply to Pregabalin. I find the benzodiazepines make me groggy the next day - I occasionally take one during the night for breakthrough RLS. Sometimes I’ll take a tramadol instead of klonopin. For reference I am 71 years old and have suffered with restless legs since my teens. Went through every remedy out there. The gabapentin-600mg- and iron, calcium, magnesium mostly keep it under control.

[Zenawarrior73 in reply to Suhavard]

The benzo’s can make me groggy and if I take one then don’t get to sleep within 30 mins they make me hyper which is horrendous so only using them when desperate now but so far I’ve had a good week

Thanks for responding Suharvard 😊