Increased Gabapentin dose

[Sunflower197]

For ages I was on 300mg of Gabapentin at night but for a few months now they have stopped working and I was surviving on about 2 hours sleep each night. Went to see the GP who has prescribed 300mg 3 times a day. She didn’t stipulate what times so I’ve just tried to space them out evenly. They’re making me so groggy and tired in the day. Not helpful for working! And I daren’t drive. Will this grogginess in the day subside does anyone know? I weaned myself off Ropinerole last year which was a nightmare. I wish they weren’t allowed to prescribe that!

[SueJohnson]

The reason you are groggy is that gabapentin makes you sleepy. I assume you only have RLS at night so there is no reason to take them spaced throughout the day. Take 600 mg 1 to 2 hours before bedtime. And take 300 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. It's a shame the doctor didn't give you 100 mg capsules as normally you would increase by 100 mg every 2 days until you find the dose that works for you instead of jumping from 300 mg to 900 mg. I would first try just the 600 mg dose. That may be enough to control your symptoms. There is no reason to take more than you need. If the 600 or 900 mg works, later you might want to ask for 100 mg capsules and try reducing by 100 mg every couple of days to get down to the dose you really need.

By the way how is the fennel working out?

[Sunflower197 in reply to SueJohnson]

That’s really helpful, I will do that! I have completely forgotten about the fennel to be honest, I’ve had a lot going on lately. Is there a particular one you recommend?

[SueJohnson in reply to Sunflower197]

No - I was just responding to your post that said it helped.

[Noneoftheabove in reply to SueJohnson]

Hi Sue, I have read with interest about the dosage mentioned in this post and another post where someone asked if gabapentin stops working after a long time usage?

I’m now on 1200mg.. split & spaced 2 1/2 hours apart in the evening and two hours before bed, I’m also on 2 200mg ferrous sulphate a night, if I stop the ferrous sulphate it’s unbearable!!!

It’s not working anymore, well to be honest it’s effectiveness is lessening.. I can’t take anymore than 1200mg gabapentin as k get bruising to the arms…

I’ve cut out tea, coffee, salt, reduced dairy. And it’s getting worse.

I can make a new post if that’s what I should of done, so apologies if I’ve slipped up😆

[SueJohnson in reply to Noneoftheabove]

You can try spacing it only 2 hours apart. If that doesn't work you might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose which in your case would be 200 mg of pregabalin. You can switch directly. Then increase by 25 mg every couple of days until you find the dose that works for you. You probably won't need to increase much. It is common in the first 6 months to a year to have to increase it slightly but after that you won't have to for years.

[SueJohnson]

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.

[Sunflower197 in reply to SueJohnson]

Thanks again for all your advice. I am having my ferritin blood test on Wednesday. Last year it was extremely low. The GP told me on Friday that last May it was 9!! I was given supplements but to be honest I don’t remember being told how bad it was and I wasn’t great at taking the iron tablets. Plus, it wasn’t followed up either so it will be very interesting to see what it is now.

[SueJohnson in reply to Sunflower197]

Wow. That is extremely low. I have a feeling it hasn't changed much. If not you would benefit from an iron infusion. If you can't get that, I assume the iron tablets your doctor prescribed were ferrous sulfate, take two tablets of them with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Since you take magnesium take it at least 2 hours apart since they interfere with the absorption of iron. The same with calcium or zinc. even in a multivitamin. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Sunflower197 in reply to SueJohnson]

Excellent advice thank you!

[Sunflower197 in reply to SueJohnson]

Hello Sue, I finally managed to get an appointment to discuss my iron blood test results. Just to be clear, should my ferritin be at least 100 or 200? Because I’ve read both in replies to my original post. Many thanks

[SueJohnson in reply to Sunflower197]

It should be at least 100 but many people say it should be more than 200 or 300.

[Sunflower197 in reply to SueJohnson]

Thank you x

[Sunflower197 in reply to SueJohnson]

Unfortunately a full iron panel blood test wasn’t done but my ferritin is 7. The doctor said that the normal levels are 25-120 but I did point out that RLS sufferers need it to be at least 100. I asked about an infusion but I can’t have that because I am not anaemic so I’m being prescribed ferrous sulphate (or glycinate) I can’t remember which she said for 3 months to be taken 3 times a day and then get another blood test. As a side note she had never heard of Brain Iron Deficiency 🫤

[SueJohnson in reply to Sunflower197]

Taking it 3 times a day is useless since once you take it hepcidin is released which prevents you from absorbing any more for 24 hours. Instead take two tablets of 325 mg of ferrous sulfate or two tablets of 25 mg of iron bisglycinate whichever you were prescribed with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[Sunflower197 in reply to SueJohnson]

Thank you! She did say I could take it twice a day like you said but that was if it was causing me stomach issues but if 3 times is useless anyway then I will stick to twice.

[SueJohnson in reply to Sunflower197]

Not twice a day. Twice the amount once a day.

[Sunflower197 in reply to SueJohnson]

I see

[Joolsg in reply to Sunflower197]

You should push for an iv iron infusion! Iron is now first line treatment among experts. Follow Sue's advice.

[Sunflower197 in reply to Joolsg]

I will! Thank you 😊

[SueJohnson]

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, estrogen, 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, 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.

[Sunflower197 in reply to SueJohnson]

Thank you Sue. I’ve had this condition since I was 18 and I’m now 52. I’ve tried most things. It’s not as bad as it has been when I couldn’t sit still in a theatre or public transport which was horrific. It’s interesting you say collagen supplements as I have been taking those. I take magnesium, Vitamin D and Glucosamine with Omega 3 to help my joints.

[Jimbartlett]

Hi Sunflower 197,

I am in a very similar position to you. Just come off Ropinirole and started on Gabapentin, 200 mg three time a day. This isnt working for me so GP has changed dose to 300mg tablets three times daily plus co-codamol for the difficult times. I get attacks in the day if I sit down for a while. I will be interested to see if the higher dose of Gabapentin works. I dont feel tired like yourself but I guess it affects everyone differently.

[Bananie123 in reply to Jimbartlett]

I started on 300mg of gabapentin 3x a day 10 years ago, because I get it 24/7. It wakes me up. Following the death of my husband recently, the nightime dose has been increased to 600mg., as the rls got worse.Some years ago I flew to Australia and for a week before the flight increased the dose gradually to 6x300mg and then decreased the dose once there. I did the same for the return journey. Now, if I know I might have to be sitting for a few hours, I take an extra gabapentin about an hour before I set out. Hope this helps.

[Sunflower197 in reply to Bananie123]

I’m sorry to hear about your husband and thanks for taking the time to reply. I used to get RLS in the day and it was horrendous and at the time I wasn’t taking any medication so I don’t know how I coped! I’ve had it so long now and I have gone through many cycles with it. It’s helpful to hear that you increase the dose when you feel you may need it for a long journey or similar. I’ll keep that in mind 🙂 Best wishes to you x

[Sunflower197 in reply to Jimbartlett]

thanks for your reply. I used to get it in the day but thankfully not now. Sue Johnson helpfully explained I don’t need to take it in the daytime if not affected then so tonight I am going to take 300mg 4 hours before bedtime and the other 600mg about 1-2 hours before. I don’t feel as groggy this morning as I did yesterday but I think if I took one now in the daytime it would knock me out again! Good luck with your treatment, hope it helps you 🙂

[Susan728]

I also was on ropinirole and had a horrible reaction. I was taking 300mg of gabapentin as well in the evening and it stopped working for me so they upped it to 600 mg and I take it at night. It's important to speak to your doctor and let them know that it's causing you to be too tired during the day. See if they can increase in smaller increments at night. My doctor said I can take 600mg -900mg but I just keep it to 600 mg and it works for me. I was also taking my medicine too late so I try to make sure I take it by 9 PM. Be sure to contact your doctor. I wish you the best.

[Sunflower197 in reply to Susan728]

Thank you for your reply, it’s really helpful x

[Susan728 in reply to Sunflower197]

Oh good! I hope you get your dose adjusted. Always good to start off with changes slowly. Take care!!😊