Lyrica and Methadone

[LegJimmies]

My husband had a video gambling slots side effect from Neupro. These two meds that are dopamines and seem to work. He sees a neurologist and we also met with doctors at the Mayo Clinic in Rochester about 4 years ago. Temporarily he takes 2 doses of Tramadol per day because he is scheduled for hip replacement in December—he is in a lot pain. September 2023, he had a knee replacement. Here is my concern and I have been very worried. I feel betrayed. I was in a different state with 5 women and on October 28th he spent most of the day at various video slots in our small town. He has lied to me. Do I report this behavior to his neurologist? Gambling is such a foreign thing to him until he was on the DA’s. The withdrawal was terrible. Thanks for any input. Married 56 years and I am at my wit’s end. Thanks.

[SueJohnson]

absolutely report it

[LegJimmies in reply to SueJohnson]

To his neurologist or primary care physician? Are any of the meds triggering gambling?

[SueJohnson in reply to LegJimmies]

To whoever prescribed it. ICD (impulse control disorder) is a known side effect of Neupro and all DAs and he should have been warned about it. ICD includes such things as compulsive gambling, eating, shopping, hypersexualality, etc

[SueJohnson in reply to LegJimmies]

If in the UK also report it via the yellow card yellowcard.mhra.gov.uk/

[SueJohnson]

For his upcoming surgery this is my usual advice: Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Naloxone can affect anesthesia so tell them if taking. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS" And make sure your ferritin is high as surgery can cause blood loss making your ferritin go down. . RLS-UK also has advice under Useful Resources on their site.

Also after your surgery you need to withdraw slowly from any opioids they gave you. You will have inflammation from the surgery which will make your RLS worse but it will go away.

Another idea is to have your doctor write a note that you carry with you and can show to the hospital about your condition and that you need your medicine.

[SueJohnson]

I gather he is off the DAs now. If not let me know and I can give him some advice.

Is he taking Lyrica?. I will give you my usual advice if he is .

Has he had his ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. He should have his test in the morning before 9 am if possible. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and his transferrin saturation to be between 20% and 45%. If his ferritin is less than 100 or his transferrin saturation is not between 20% and 45% post back here and we can give him some advice.

DAs used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Beginning dose of lyrica is 75 mg . [If he is over 65 and susceptible to falls beginning dose is 50 mg .] It will take 3 weeks to be fully effective and won't be fully effective until he is off all DAs and his symptoms have settled. After that he should increase it by 25 mg every couple of days until he finds the dose that works for him.

He should take it 1 to 2 hours before bedtime. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg."

Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

Alternately he could take methadone or increase his tramadol.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in

[LegJimmies in reply to SueJohnson]

Live in the USA. He has a feeding tube for the rest of his life. Had base of tongue cancer in 2010 and radiation blasts got rid of tumor but compromised his swallowing. Now on a feeding tube for all liquids. No eating by mouth. Iron levels are fine. Horrible time when getting off DAs but why has the gambling started again. Hiding it from me too.

[SueJohnson in reply to LegJimmies]

I am so sorry!

You say his iron is fine but do you know his ferritin number? Doctors will say it is fine, but what is fine for others isn't fine for those of us with RLS

[Joolsg]

Is he still taking the Neupro patch or another dopamine agonist?Usually Impulse Control Disorder stops when the patient comes off the drug. If he's still on a dopamine agonist you need to report it to the neurologist AND the FDA.

[LegJimmies in reply to Joolsg]

No, he has been off all DA’s as soon as gambling began years ago. Now on Lyrica and Methadone. He is also in a feeding tube for rest of his life because of two severe bouts with aspiration pneumonia. Doesn’t eat or drink by mouth. Had iron tests and is fine. Why is this gambling coming on again?

[Joolsg in reply to LegJimmies]

That is the million dollar question.I have not heard of it continuing, BUT years on DAs can cause all sort of damage.

Definitely speak to the neurologist.

I'm so sorry to hear all this. You must be so upset.

[DicCarlson]

Gambling - Impulse Control Disorder - is reported even in patients with no prior interest or history of gambling - totally tell the neurologist. It's a side effect for DAs - not sure how it is surfacing now, maybe they can sort it out.