More advise on Gabapentin ( eye pain ... - Restless Legs Syn...

Restless Legs Syndrome

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More advise on Gabapentin ( eye pain & headaches )

Kiram profile image
23 Replies

recently I posted about trying Gabapentin, I wanted to come off codeine , I was prescribed 100mg at 5pm and 100mg at 9, this wasn’t working and I was finding my RLS had become more frequent and more intense , and having to. Take more codeine , so I changed the times and started taking both tablets at same time , RLS is still more intense ( feels as bad as it did when I was augmenting ) but I have also started getting pains in my eyes and waking with the most horrendous headache , I also struggling with my mood , I feel agitated , and noticed getting more upset then I should be , plus I’m concerned about the amount of codeine I’m having to take just to get a few hours sleep . Any advise please ?

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Kiram profile image
Kiram
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23 Replies
SueJohnson profile image
SueJohnson

Headaches are sometimes a side effect of gabapentin. Eye pain is a uncommon but can also be a side effect. Both may go away in a few weeks or may not. Mood changes can also be side effects of gabapentin

But they can also be side effects of withdrawing from codeine although eye pain is not as likely.

I would first take your usual amount of codeine to check that. Then you could wait a few weeks to see if they go away or you could 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. You can switch directly. Divide the gabapentin amount by 6 to get the correct dose.

As far as your RLS, 200 mg of gabapentin is below the starting dose so won't help. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Kiram profile image
Kiram in reply toSueJohnson

Unfortunately pregabline affected my mood , too the point of suicidal thought , it concerns me that I could be heading that way with Gabapentin

SueJohnson profile image
SueJohnson in reply toKiram

Then you don't want to take pregabalin.

Kiram profile image
Kiram in reply toSueJohnson

Thank you , the consultant gave me 250 mg ferrous sulfate, one per day , what would you recommend the dosage , would I be better off taking 2 x 250mg every other day?

SueJohnson profile image
SueJohnson in reply toKiram

What is your ferritin?

Yes take 2 X 250 every other day as more is absorbed that way with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Take it 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 (or magnesium rich foods), calcium (or calcium rich foods) 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 your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

Kiram profile image
Kiram in reply toSueJohnson

Thank you , I asked what my levels were and he just said low and gave a giggle as if I don’t understand 🤦🏼‍♀️

Iv not heard of Lactobacillus plantarum 299v could you please recommend which is best ?

Sorry if I’m being a bit of a nuisance 😢

SueJohnson profile image
SueJohnson in reply toKiram

It's a probiotic. You can get it at a pharmacy or on Amazon

Kiram profile image
Kiram in reply toSueJohnson

Thank you , I will definitely try that , may help other issues I have with my stomach, so I could be onto a winner

SueJohnson profile image
SueJohnson

As I remember last time you tried it you only had mood changes. Buspar (buspirone) can help with your agitation and feeling upset.

Kiram profile image
Kiram in reply toSueJohnson

I asked gp for this med they would not prescribe, and this is why they have referred me to consultant , and even tho the consultant says he also gets RLS I don’t feel he’s up to speed with medication , he’s still try to push the DA’s on to me , the consultant I’m under is Geriatric medicine And Parkinson. , which is a bit odd as I’m only 56 🤦🏼‍♀️😂

SueJohnson profile image
SueJohnson in reply toKiram

Why wouldn't the doctor prescribe it?

Kiram profile image
Kiram in reply toSueJohnson

Consultant said they do not prescribe it anymore, classed it as an ‘ old fashioned ‘ drug

SueJohnson profile image
SueJohnson in reply toKiram

It has been around for a long time but in 2022 it was the 54th most commonly prescribed medication in the United States, with more than 12 million prescriptions. source: en.wikipedia.org/wiki/Buspi...

All of the other ones make RLS worse that are currently used except trazodone. I would explain this and say you need something for your symptoms and this is the only one that will help without making your RLS worse and plead with him/her to prescribe it.

I had also suggested trazodone before - what happened with that?

Kiram profile image
Kiram in reply toSueJohnson

They prescribed Trazodone as he wouldn’t give me the others , but I found Trazodone aggravated my RLS 😢

SueJohnson profile image
SueJohnson in reply toKiram

Darn!

If you are able to get buspar - it takes 2 to 4 weeks to fully work.

ziggypiggy profile image
ziggypiggy in reply toKiram

Clonidine for anxiety as an option.

Kiram profile image
Kiram in reply toziggypiggy

Thank you for your reply , I’m not so much worried about the anxiety , if I can improve my sleep , my mood lifts when Iv had better sleep , I stopped the Gabapentin about a week ago , and my RLS , has gone back to how it was, it’s still not ideal but I think it’s the best I can expect , so for now I’m going to concentrate on Iron levels , Iv started taking them every other day , with vit c supplements and probiotics , and fingers crossed it will help , when I see consultant I will ask about an iron infusion , and with new year I will eat more healthy than I have of late .

Joolsg profile image
Joolsg

Kiram, has your GP or Parkinson's consultant referred you for an iron infusion? If your serum ferritin is below 200ųg and serum iron below 60ųg, you would benefit from an iron infusion.A few specialists arrange this on the NHS. Your GP should not giggle and say your iron is low! He should do something about it. Low brain iron is the leading cause of RLS.

200mg codeine may well be causing headaches. Your GP should review your meds, arrange an iron infusion and consider switching you to another, longer half life opioid such as Buprenorphine. Push for a proper review or another appointment with the specialist.

As he's a PD neurologist- they are more likely to push for dopaminergic meds. Simply refuse and say top experts no longer prescribe them.

As you are in Wales- ask for a referral to Dr Jose Thomas at Abergavenny Sleep clinic. He can prescribe Buprenorphine in Wales.

Kiram profile image
Kiram in reply toJoolsg

in one consultation with the actual consultant he had mentioned and infusion , but my last appointment was with one of his supporting dr’s , he was the one who giggled and said it’s just low , I had to ask for the iron , apparently next appointment will be with actual consultant, so I shall ask him

Joolsg profile image
Joolsg in reply toKiram

If they refuse, you can always pay for a private iron infusion via the Iron Clinic in Harley Street or Manchester. Costs around £800.

Kiram profile image
Kiram in reply toJoolsg

Thank you I will try the supplements every other day , I take vit C anyway , but will definitely try the probiotics aswel , see if that helps ,

do you know what the max in iron supplements is per day ?

If that don’t help then certainly will look into paying for infusions

Joolsg profile image
Joolsg in reply toKiram

Most people take 65mg elemental iron ( 325mg ferrous sulphate) or 2 x 30mg ferrous bisglycinate. But Professor Toby Richards of the iron clinic says it's almost impossible to OD on oral iron supplements. But just take the recommended daily dose every other day.

pubmed.ncbi.nlm.nih.gov/367...

Kiram profile image
Kiram in reply toJoolsg

Great thank you so much for your replies and help x

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