Lyrica, RLS and tinnitus

[Marlayna]

Hello all, I have RLS and tinnitus, and I’m wondering if anyone else shares these two diagnoses with me. I thought I had a great solution in Lyrica and felt great for about two weeks. I slept multiple days in a row for the first time in 20 years. But the Lyrica caused an increased pressure in my head and made the tinnitus louder. I did the research and found out that Lyrica is ototoxic and is causing tinnitus and hearing loss in some users. This makes it a no go for me.

I was up last night feeling quite depressed that I feel like I have to choose between my hearing or a single nights sleep. I’m in the states so getting a doctor to prescribe anything for me these days is quite difficult. Valium and opioids work for me, but unless I want to buy them on the street I’m not getting them.

Question for you all outside of the states. We are on an open ended working vacation in March, landing in Italy in April and moving on from there. Does anyone know anything about US ex-pats getting proper RLS treatment in foreign countries.

Thank you!

[Jumpey]

I feel for you and your predicament. I too have both conditions. I take Tramadol which doesn't affect my tinnitus .Could you try an alpha 2 delta ligand such as Gabapentin?

Dr.Buchfuhrer prescribes opioids for RLS. I don't know how far you are away from him.He's based in California. Experts in Johns Hopkins also recommend them. It depends where you live and whether you could access the hospital.

I have no idea I'm afraid what medical treatment you could get in Italy.I live in the UK. Here you would be entitled to free emergency treatment on the NHS.

By the way, have you had your ferritin tested and is it around 100?That may help the RLS .

Also do you live in a State where cannabis is legal?Lots of people get relief from cannabis oil with thc.

The best of luck finding a solution. I hope you have a wonderful holiday and are able to get some relief soon. X

[Marlayna67 in reply to Jumpey]

I took one of my daughter's Tramadols last night to give it a shot (25 mg) and had the worse night ever! MAJOR anxiety, insomnia, and tinnitus. I thought I was going to lose my mind.

Just had my iron checked and it is 42. I'm guessing that is way too low? Now what? Yes, legal cannabis is nearby, but that hasn't helped me either.

[marigold60]

I too have both conditions. I was taking pramipexole but now on gabapentin which I think is similar to lyrica ?. The gabapentin is great for my rls but if anything my tinnitus is a bit worse, however I'll put up with that just to be free of rls. Although tinnitus is quite loud especially when I'm thinking about it like now I can zone out and forget about it.

[Marlayna67 in reply to marigold60]

I tried to deal with louder tinnitus to sleep and it's not worth the tradeoff for me.

[DicCarlson]

A small amount of searching reveals a connection between iron deficiency and both RLS and Tinnitus - get you iron levels tested and find out the exact numbers not just "normal". Ferritin is the protein that stores iron and a level below 50 might signal too little. A common oral supplement is Ferrous Bisglycinate Chelate also called "gentle iron" (non-constipating).

[Marlayna67 in reply to DicCarlson]

Thank you, just checked and I'm at 42. According to doc, this is "normal." Any advice on how much iron to take and how often, etc.?

[DicCarlson in reply to Marlayna67]

My Ferritin level was 49 with raging RLS - docs said normal. I finally read Johns Hopkins Neurology website and never looked back! Originally I read a "home remedy" for RLS - Black Strap Molasses (it contains iron from the manufacturing process) and it cut into the real severe RLS. I made the leap to supplements and within a week - the severe nature of the RLS was gone. I took 1 capsule (18mg) daily, mid morning away from food. In 3 months I was at a Ferritin level of 105 so I feathered back to 3 times a week, then none. hopkinsmedicine.org/neurolo...

[Marlayna in reply to DicCarlson]

Ooooh! I feel like I have hope! So many side effects from the meds.

[DicCarlson in reply to Marlayna]

One doc said there was no alternative except Requip (Ropinirole) to control RLS - I refused (knowing the side effects) but when RLS is really bad, night after night - I was close to taking it.

[Marlayna67 in reply to DicCarlson]

Just bought the iron and am looking forward to evaluating how I feel over the next few days/weeks. Glad you passed on the Requip - pretty scary reading how hard it is to come off of it. My 89 year old mother has resorted to it, but as we said, it's highly unlikely she will have to worry about augmenting and switching at her age.

[IrisRN]

Have you tried any of the herbal cures for tinnitus? My husband had a bad case of it and used drops...they stopped. Also if your state allows medical marijuana,try it at night.

[Marlayna67 in reply to IrisRN]

I've had tinnitus since I was 11, so 43 years at this point. I've tried everything, so have just learned to live with it. MJ just doesn't help me and causes extreme anxiety.

[DicCarlson in reply to Marlayna67]

You might want to consider this - a probiotic that increases iron absorption. ncbi.nlm.nih.gov/pmc/articl...

[Marlayna67 in reply to DicCarlson]

Thank you so much! I had recently done a Viome gut test, so checked it against that probiotic. It's not naturally in my system, so will check into supplementing. I'm on day 3 of no meds, 750 mg of niacin and 60 mg of iron. The RLS is better, but not by a whole lot.