Help please

[Cobobay]

Hi everyone, haven't posted for a while as I've been ok and gabapentin has been working fine till last week or so. I was on 200 at 5.30 and 600 at 7.30 and 9.30. I then increased to 300 at 5.30 but this isn't helping, I did a change around, so took 600 at 5.30 then 300 at 7.30 and 600 at 9.30, which seemed to work better for about 5 days had no problems. Now it's driving me mad it is now 11pm and they are kicking off again like mad. What should I do keep increasing?? As I'm also waking up to it too. I haven't been like this for ages and I don't want to carry on like this 😫

[SueJohnson]

try going back and increase the 5:30 one to 400 but also check if you did something different or took an OTC supplement or ate some thing different or exercised differently or at a different time, etc.

Or maybe your ferritin has gone down.

[Cobobay in reply to SueJohnson]

Hi Sue, thank you for your quick response, I'm here pacing the floor and pulling my hair out with frustration. I did go back as before but no change, I will increase to 400 starting tomorrow, but will take a 100 tonight I need sleep. I haven't changed anything or eaten anything different, as far as I know and I'm still taking 2 iron tablets each night. Will see what taking the extra will do, many thanks as always.

[DesertOasis in reply to Cobobay]

Cobobay, did you ever start the trazodone? That too can make the symptoms of RLS much worse. I, for one, do not consider it RLS friendly. Did you start HRT by any chance? That too will make symptoms worse.

If two hours pass after taking iron, and you still have RLS, you can take another iron tab. Iron at night is all I use to control my RLS. My stomach has to be empty and no eating after dinner, period.

I’m taking a drug, a PPI, that probably makes my RLS worse, but it’s incredibly helpful for another condition. As a result, sometimes the iron isn’t enough. Over the years I’ve read that potassium, as well as calcium, facilitate the release of dopamine. These articles were not in connection with RLS. One desperate night I started consuming everything in my house that has those two substances, including a banana, calcium citrate powder and an electrolyte solution. It worked. And has dozens of times more. I just take the electrolyte solution now, however. The amount of calcium and potassium in the electrolyte powder doesn’t even amount to the recommended daily allowance, yet it works. I’m pretty positive I know why the iron at night trick works, but I’m not as positive as to why the potassium and calcium (in the solution) work so well? Like I said, I “believe” it causes a “pop” of dopamine, which seems to be enough to get me over the hump.

You don’t know me, but if you did, you would know I never recommend anything but iron, because nothing else natural has ever worked for me, and I don’t take making recommendations lightly. I use one scoop of Ultima electrolyte mix in at least 9 ounces of water and in under an hour I’m asleep. Not that long ago I was taking a small amount of Tramadol (50mg) after a somewhat minor surgery. It was like the RLS didn’t exist and no need for iron at night. It was a nice few days 🫤.

With that said, I do recommend magnesium glycinate, by day only, to members, when I remember. It seems that taken day in day out, for weeks and months, many members have found relief from it. I believe it works because it’s a weak dopamine antagonist - just the opposite of the DAs, and also the opposite of calcium. Thus, instead of down-regulating the receptors like DAs do, the magnesium may be up-regulating people’s receptors, however slowly. Patience is a virtue. It’s just my theory as to why magnesium works so well and for so many people.

Good luck.

[Cobobay in reply to DesertOasis]

Hi and thank you, tbh reading your post makes me panic as I can't make sense of it. That's why when Sue writes she does it straight to the point of what yo take or not take I'm not taking anything that should make my rls worse as on Sue's advice I changed or on my own stopped taking others. I'm just taking the bare minimum, chloresteral and blood pressure along with my inhalers for copd that I take. Once again thank you and I will try and read again.

[Jerry57 in reply to Cobobay]

Cobobay - Regarding the iron. You may have reached your max. Like you I was taking 1 or 2 iron tablets every night. Iron was helping me for about 2 years, and then very recently, I hit a brick wall. My body could not tolerate any more - Not one pill, not a half, not a 1/4, not even a crumb. Any iron at all seemed to make my RLS worse, the severity directly correlating with the amount of iron I took. Now I take ZERO iron and my RLS has calmed down for a couple weeks, and I am better. I still need tramadol, but I'm completely off of iron for now.

[DesertOasis in reply to Jerry57]

Wow, not only was the iron not working, it was making your RLS worse. What time of night were you taking the iron? My digestive system REALLY wants to go to complete sleep by at least 10pm. Any crumb after this time will kick start the RLS, including the iron.

[Jerry57 in reply to DesertOasis]

When it was working, I usually took the iron on an empty stomach, an hour or 2 before bed.

[DesertOasis in reply to Jerry57]

What time of night was that generally?

[Jerry57 in reply to DesertOasis]

Two years ago, I took the iron at 9:30 religiously on an empty stomach, then I gradually found that I could take it later, like 10 or 10:30 without consequence. Also, taking it with food did not affect the results, so I kept taking 2 pills each night for many months.

[DesertOasis in reply to Jerry57]

Jerry, if you can stop the iron and not need to raise the tramadol then the iron is superfluous. As an aside, my brilliant, highly acclaimed gastroenterologist from Northwestern has told me that our gut has its own circadian rhythm. We’re supposed to eat the majority of our calories between sun up and sun down. Our guts want to go to sleep with darkness as our brains do. My curfew seems closer to 10pm, but I’m trying to scale that back so that nothing goes in my mouth after 9pm. ANY food, including iron, after 10pm, not only causes cramping, but kick starts the RLS, which normally kicks in around midnight, if I don’t take the iron. If somewhere down the road you want to give the iron another shot go back to an earlier time in the evening. I know not everyone is like me, but I have a gut feeling about this one 🫣

[Jerry57 in reply to DesertOasis]

"Jerry, if you can stop the iron and not need to raise the tramadol then the iron is superfluous." Yes .... exactly .... that is why I stopped taking it.

However, it was very helpful the first 2 years. The iron effect was immediate and remarkable. It enabled me to reduce my tramadol from 300 mg to 200 mg/day, something I could not achieve on my own for nearly 20 years.

I didn't just quit the iron in one day. I tried skipping days, taking partial pills, mixing it, crushing it, switching brands, taking them at different times of day, with and without food. For 6 weeks I resisted the whole idea that iron could exacerbate my RLS, but it was undeniably conclusive. For now, taking iron is detrimental.

I assume my ferritin number was gradually rising, and I reached my maximum. I expect that I will need more iron at some point, when my tank runs low.

[DesertOasis in reply to Jerry57]

Well, no matter what, you will always be a member of the Ironman club.

[Orangehorses in reply to SueJohnson]

I would go back to your GP. I started on gabapentin and they worked at first but then stopped having any effects. Dr changed it to pramipexole and they have been great. I still get the odd night with RLS but that is all down to what I eat.

[Cobobay in reply to Orangehorses]

Pramipexole is not a good drug to use and causes augmentation. It is very hard to wean off of, I would think seriously about taking it, it does work amazingly for a while and then the problems start, good luck with it.

[Cobobay in reply to Cobobay]

I was on this at the start and also switched between pramipexole and ropinerole when on, or other stopped working. These drugs are not what is recommended anymore. Thank you for replying.

[SueJohnson in reply to Orangehorses]

Please do not suggest this.

I'm glad it works for you for now

BUT it is no longer the first line treatment for RLS since up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me one doesn't want because it can be hell to come off it and the longer one is on it, the harder it is to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which one doesn't want. And one expert believes everyone will eventually suffer augmentation.

There are many, many people on this forum who have gone through this hell.

So please don't suggest this to someone else. There are better options if gabapentin doesn't work.

[Cobobay in reply to SueJohnson]

Thank you Sue and well said. I would never want to go through that again, or wish it on anyone else, Doctors by now should know better than to prescribe these awful drugs.

[Orangehorses in reply to Cobobay]

I never suggested it to anybody. I merely said what I take.

[Cobobay in reply to Orangehorses]

Never said you did.

[Orangehorses in reply to Cobobay]

Reading my comment and your reply to sue it really does sound like both of you are

[Orangehorses in reply to SueJohnson]

Sorry I replied. I didn't suggest it . I said what I am taking

[Islay9]

I didn’t get much relief from gabapentin. I’m now on pregabalin (and dihydrocodeine) and it’s so much better.

[Cobobay in reply to Islay9]

I was also on Dihydrocodeine but weened off it as I didn't want to get hooked, plus doctor wasn't keen to keep on it, even tho I only literally took it when I needed it somi definitely wasn't hooked at all.

[Simkin]

I went higher & higher with gabapentin dosage but in the end had to resort to low dose buprenorphine and I have had one year of no RLS. Bliss!So I have dropped gabapentin to 300g at night plus 0.2 buprenorphine & that works for me.

[Cobobay in reply to Simkin]

Thank you for replying, great you've dropped on gabapentin, I have been fine till last couple weeks and it's all blown up again andnuts really getting me down. I can't imagine dropping to that low now im about to up to 1400mg tonight! in total.

[Simkin]

I was up to 1,800 a night!I have only been able to drop.(very gradually) because I am on buprenorphine now.

Gabapentin just stopped working on its own. Even that very high dose.

[Cobobay in reply to Simkin]

Problem is I don't understand all the ins and outs and I really don't remember names etc, I findnitnhard to explain to Doctor and can never find posts again once I've read them and gone off them. I'm getting so depressed over all this I'm just finding it hard. Thank you for your reply

[Islay9]

Buprenorphine is very hard to get hold of in the UK.

I suggest persevering with the gabapentin as Sue suggests and if no relief consider pregabalin.

Low dose opioids have been shown not to cause problems in addiction I believe so might be worth looking into dihydrocodeine again if needed. It’s the only thing for me that’s ever “switched off” my legs (temporarily unfortunately).

[Msmac]

Hi Cobobay, in the past year, I have gone up to 1600mg gabapentin and it completely stopped the rls and plmd. A couple of times I've had minor twitching that was relieved by walking, doing lunges & squats etc. But - sometimes I actually sleep through the entire night! It does cause pretty bad brain fog for about half the day. I'm working with my sleep doctor to try decreasing the dose. I will decrease it by 100mgs every 2 weeks. At this point, I'm so happy not to have the twitching, that if decreasing the dose doesn't work, I'll go back up. I feel like people don't understand how badly it effects your quality of life. The fact that there is not consensus in the medical community regarding effective treatment, is very frustrating.

[Cobobay in reply to Msmac]

Thank you, I suppose I'm scared of hitting the dose where it doesn't work anymore, so reluctant to take if I haven't got too, but lately it is needing the extra dose. I'm so tired again after having such a good run it's making my depression worse as I can't cope with daily things. I'm going through an extremely stressful time atm too, so I guess my Doctor is right and stress effects RLS too, I'm sure Sue will confirm if this is correct. I don't feel mum getting the support I was from my Doctor as she was extremely supportive, but lately it's like she isnt, maybe getting problems from others I've seen, I don't know. I'm so lucky to have this group even if I dont understand all the medical talk so thank you all.

[Msmac]

Yes, I get that. I had taken another medication that I had to keep increasing the dose, and it just didn't work. I've been on the 1600mg of the gabapentin since March of this year, and have not needed to increase it since then and it's still working. Everyone is different though. I do have a very supportive doctor who is good about communicating. Hope you can talk to yours and express your concerns.

[Cobobay in reply to Msmac]

Yes I have a very good Doctor and she took what I told her up until now, I just get the feeling she isn't quite the same with me when I told her I needed extra to top up, we will see next visit, I haven't had a full blood test for a while but they only tend to allow them once a year.

[Bganim1947]

You are experiencing augmentation now with gabapentin. You need to get off gabapentin and have your doctors prescribe tramadol . I had the same problem several years ago. I got off gabapentin and onto tramadol—three times a day: 8 AM 100 mg, 3 PM and 100 mg, and 10 PM 100 mg. I also take Pregablin 150 mgs. at. 8 AM and 150 mg at 10 PM. This should take care of it. Sometimes even with this medication I will get some mild RLs symptoms, usually when I’ve been on my feet too much. You can do this asap while you’re waiting to get these new prescriptions. This works like a miracle: apply Magnalife Relaxing leg cream from the knees down to your ankles. Let it dry before putting on socks or pants or Pjs. It drys in about 5 or 10 minutes. Apply it liberally. It stops RLS symptoms in its tracks. But you still need the medication. Good luck.

[Huntingleroy in reply to Bganim1947]

Im pretty sure Im right (Sue and Jules will know ) I dont think you can get augmentation from Gabapentin. Its the evil dopamine agonists that cause augmentation

[SueJohnson in reply to Bganim1947]

You can't augment on gabapentin.