Lyrica ocular side effects and more

[WelbyB]

I am an optometrist in Colorado with severe RLS symptoms. This forum is an excellent method of sharing information on a complicated multifactorial enigma that desperately needs some solution to this pharmacologic mess. Maybe somebody can get more clues to give better relief without the nasty side effects. I have studied the algorithms currently available and get good advice from Dr. B.

I see several references to ocular side effects of Horizont/gabapentin/Lyrica drugs. Blurred vision is common. My research (and personal experience) reports that the underlying reason is loss of steady fixation on this class of drugs. The fine motor system is broken down and triggers nystagmus (eye tremor). It can also cause loss of binocularity and eye dryness causing redness. I could not find where it caused yellow eyes. This is more jaundice possibly from alcohol or liver problems. Other side effects of these drugs for me were loss of coordination, nausea, and mental fogginess. I did not get any significant help of RLS symptoms after a few short trials and one trial lasting a full year. Most of the side effects went away after two weeks on the longer trial.

I have had RLS symptoms for 40 years. Pramipexole worked very well for 20 years before I was advised about augmentation. Tapering off that drug was the most difficult thing of my life. Insomnia is a beast! I was off the dopamine agonist for two years before starting Neupro patch a few months ago. I did take low dose Synamet (Carbodopa/Levodopa} with some limited help. Methadone (15mg nightly) helps the intensity of symptoms but not some much the frequency. Unfortunately, Lyrica was not effective for me. I have tried iron infusions, diet control, other pain killers, pot, timely sex, Kratom, and 30 other suggested cures or triggers. None helped more than 10 percent except for dopamine drugs. Neupro 1mg patch is helping about 70-80% for now. Dr. B says the risks of further augmentation are possible but less than Pramipexole.

Hope this helps someone else out there. Maybe it is a "message in a bottle" to someone who can put the pieces together.

[SueJohnson]

You say Lyrica was not effective. How much were you taking?

[WelbyB in reply to SueJohnson]

Thank you for your concern. I have read many of your posts with much respect for your knowledge. I started with 150mg of Lyrica for two months, then 300mg for six months, then 450mg for two months, before tapering off the last four months. I was careful to monitor cause and effect at least by the night using the drug and not using it. No consistent difference. It just didn't seem to work for me. I also tried Horizont and gabapentin. I have read that many people on long term dopamine adrenergics like me are often poor responders to the Lyrica type of drugs. What do you think? Was that enough dose and was it long enough? Any other ideas that work for you or maybe others with my profile? I am still suffering.

[SueJohnson in reply to WelbyB]

If you didn't respond at that dose it is unlikely you would respond at a higher dose. Another one to try is dipyridamole which has worked well for some.

[WelbyB in reply to SueJohnson]

I have not tried dipyridamole for my severe RLS case. However, I have tried Tramadol, Percocet, Belbucca, and Methadone. Methadone was the best of that painkiller bunch. But it only helps the intensity (about 20%) rather than the frequency. Do you think there is anything significantly different with dipyridamole what would justify a trial?

[SueJohnson in reply to WelbyB]

Yes. It is entirely different and has helped some, even completely eliminating their symptoms in some cases. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole (a blood thinner) discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... also see sciencedirect.com/science/a... You can also search HealthUnlocked. It's worth a try. Nothing ventured, nothing gained.

[MumofSam in reply to WelbyB]

Lyrica hasn’t worked for me either

[Eryl]

This phenomenon is probably due to the fct that the drugs only tackle the symptoms of RLS while the cause continues and often increases. The cause is chronic inflammation which damages the nerves. The cause of the chronic inflammation is mostly high blood sugar and for most people with permanently high blood sugar they will eventually run into insulin resistance which will result in even higher blood sugar which speeds up the damage. Chronic inflammation is also caused by industrially refined seed oils which cause oxidative damage. Unless the diet is addressed you are not treating your RLS but only controling some of the symptoms.

[WelbyB in reply to Eryl]

Thanks Eryl. Inflammation control makes a lot of sense. I am not diabetic although my diet is not great for high glycemic foods. It is odd that I crave carbo/sugar foods in the middle of the night which seems to reduce the RLS symptoms temporarily. I probably need more discipline and better cause and effect diet monitoring.

[Eryl in reply to WelbyB]

Sugar causes a release of dopamine which might give temporary relief.

[BocaMom]

Thanks for your enlightening post - have noticed the eye issues with pregabalin.

Horizant did virtually nothing for me except make me depressed and foggy.

This is a wild card but is there any chance you’re taking testosterone? I did pellets for a year and the testosterone drove my legs nuts. It arguably drops your ferritin (which for me is a disaster below 100).

I’m so sorry for your suffering and really thankful you’re in touch with Dr. B.

Keep us posted how you’re doing.

[WelbyB in reply to BocaMom]

Thanks BocaMom, It is good to know that Horizant didn't work for you either. No testosterone supplements but my ferritin (total iron?) was 35 on the last test a few months ago. I had 5 iron injections one week apart about 4 months ago. It did not seem to help the RLS. The trouble is this demon has so many moving parts. I respect your frequent posts on this site. It shows you care.

[Felicity21]

Hi Welby, Like so many RLS sufferers on this forum, I too used Pramiprexole successfully over many years. My neurologist at some stage prescribed changing to Neupropatch and that worked reasonably well, even better when supplemented with Clonazepam and 2 co-dydramol. As advised on this forum, I too came off the DA’s and tried Gabapentin with not such good results. It did not help the RLS and even worse it caused my eyesight to deteriorate. So I am back on a DA and take Prolonged Release Mirapex (0.26 mg) and do not intend to increase its dose. I still take 2 co--dydramol (with a high strength Senekot to help constipation) plus 0.5 mg Clonazepam to help me sleep. I have been on this for more than 2 years and it is not perfect. I have to really watch my triggers (grapes, raisins, banana’s, apples, pears, strawberries, melon, mayonnaise, margarine, onions, garlic, sweeteners and preservatives). The list is a mile long. However, I get a good night’s sleep most night after a relaxing bath. If it is still bad, I get on my exercise bike and/ or play scrabble on my iPad. That wears me out and distracts me. I am taking the road of the best of 2 evils as I just don’t want to go down the road of drugs such as Buprenorphine and Methadone. Good luck.

[SueJohnson in reply to Felicity21]

Have you had your ferritin tested?

[Felicity21 in reply to SueJohnson]

Hi Sue, Thank you for asking. My ferritin level is 88 so seems ok. However, according to Professor Nordlander “Despite this strong association between serum iron insufficiency and RLS, only about 15% of the RLS clinical population appears to have peripheral iron deficiency (serum ferritin < 50 mcg/l)”. To account for this, he in proposing his “iron deficiency” hypothesis of RLS stating “It is possible…that there can exist an iron deficiency in the tissues in spite of normal serum iron.”Will we ever find the right treatment?

[SueJohnson in reply to Felicity21]

Your ferritin is not OK. Improving it to 100 or more helps 60% of people with RLS. What is normal for other people is not normal for those with RLS. Check out the Mayo Clinic Updated Algorithm on RLS which discusses this and which will tell you everything you want to know about RLS including the latest treatment and refer your doctor to it at

Https://mayoclinicproceedings.org/a... The usual advice is if your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months. If you don't want or can't get an iron infusion then you can try just taking iron tablets as described above.

[WelbyB in reply to Felicity21]

Thank you for sharing. Our cases have some similarity. Your list of triggers gives me some clues. I like all those things you mentioned. I think it is time for another elimination diet and some careful reintroduction of possible trigger foods. Dr. B in California has suggested Neupro patch and methadone rather than extended release Mirapex and dydramol for me. My hot tub is often a life saver for me.

[Hidden]

Thanks WelbyB, I experience vision problems on pregabalin.

I'm curious as to whether you were already augmenting on pramipexole when you decided to come off it, or whether you came off it in anticipation of augmentation?

If you got 20 years out of it, that's amazing. It also suggests you may be less of an 'augmenter' on DAs than most other people.

Hopefully the Neupro patch brings sustained relief even if not perfect.

[WelbyB in reply to Hidden]

Thanks Amrob, I was doing quite well on 2.25mg of Pramipexole before a "risk of augmentation" started a bad RLS two year chapter in my life as I weaned off it. My doctor is one of the leading experts on augmentation so I am inclined to believe him and trust him. I know now my dose was quite high. I understood about tolerance but not really augmentation which makes the underlying condition worse allegedly. My prescribing doctors of Pramipexole asked me if I had compulsive behavior which I denied. Maybe it increased sex drive as opposed to the Lyrica type drugs decreasing it. Nobody seems to want to talk about the role of sex for RLS.

[SueJohnson]

It helps with symptoms in 60% but only completely eliminates symptoms in some.

[MumofSam]

I agree. Maybe that’s the cause for some people but I’ve had this condition since before I could even walk, so definitely not a chronic inflammation of anything. Also I eat a very healthy diet.

[Nightwalker6]

Yes, it’s annoying that the only class of meds that works brilliantly is also eventually debilitating. I have heard they are developing a DA that uses a different pathway to avoid augmentation. Holding hope for this drug.

[WelbyB in reply to Nightwalker6]

I asked my doctor about epipipam which is a new dopamine adrenergic working on D1 receptors. He told me it is not ready yet. It seems like that would be the answer for me. Dr. Ondo reported a 10 person study on it with good results. Hopefully it will be a safe medicine that does not cause augmentation.