Andy Berkowski MD

[RCHD]

great resource .. seems to care about people with rls. Has blog , website and YouTube channel.

relacshealth.com/blog

[Joolsg]

Well done for finding that. A brilliant blog and a useful contact for our US members in Florida, Ohio, Michigan.

[Doggonetired in reply to Joolsg]

I live in Charleston, West Virginia and drove an hour to Gallipolis, Ohio so I could have a telehealth visit with Dr. Berkowski. I sat in the car at a rest area and talked to him for two hours. I had no idea we had chatted that long. Dr. B was kind and really listened. He did not hurry me or make me feel like he didn't have the time for me. He has helped me immensely. My primary physician had me on R0piner0le for a year and a half and I augmented on it about two months after I had been on it. I just assumed it was my herniated discs.

So, if anyone is within driving distances of those states, they can telehealth with Dr. Berkowski, too.

[LotteM]

Good that you mention him. Have you been in contact with him? Is he now your doctor? Hope so

He is one of the main RLS specialists doing RLS research and publishing about it. And advisor to the US rls.org. Like drs Buchfuhrer, Allen, Earley, Winkelman, Ondo, Walker.

[RCHD in reply to LotteM]

I’m just always looking for People to help my husband. This guy seems great so I didn’t hear anyone else here mentioning him. We finally got appointment with Dr B .. very thankful for that.

[Whymelord]

Hi RCHD,I've just read the blog which I found interesting but I live in N.Ireland,so definitely feel more like the red headed child,in my opinion my gp does not rate RLS as anything serious enough even to have a face to face discussion,its great that there is much more help in the USA,thankyou for sharing this blog.

[RCHD in reply to Whymelord]

yes I think it’s actually getting more common that People are starting to take it seriously. It seems many are affected. Yes his blog seems pretty good. Glad you enjoyed.

[RLSofManyYears in reply to Whymelord]

I'd also email Dr Buchfuhrer as he always responds with good advice. He email address can be found on this web site.

[RCHD in reply to RLSofManyYears]

we got appointment with him ❤️🙏🏾Praying he can help… currently Mu husband is using kratom which seems to be not working anymore in the way it was

[DicCarlson]

Excellent resources - the interview with Cleveland Clinic is great! FYI currently he is only licensed in the US states of MI, OH, FL. If there was enough interest in other states, he could consider getting licensed for that state.

youtube.com/watch?v=tEtepQR...(Not working as expected?)

[BeachGolfer]

Thank you so much! I’m in Florida and always afraid that my current opioid prescriber will retire or stop prescribing opioids. Now I have a backup!

[LanaCSR]

Great resource, but I agree with DicCarlson, he needs to widen his telehealth appointments to more states in the United States. I live in South Carolina, and I can't find a good neurologist/sleep doctor who knows how to treat RLS. I have tried so many in my area, but none of them have even come close to helping me. I finally found someone in Georgia, but even with virtual visits, I am required to be within Georgia state lines in order for him to see and treat me. It's really sad that I can't find someone as good as him who is closer to me or at the very least in South Carolina.

[coldfeet7 in reply to LanaCSR]

If I may ask, who have you found in Georgia that is helpful? I live in the Marietta/Roswell area in Georgia and always like to hear about different doctors. I have found the Doctors at FusionSleep to be very helpful.

fusionsleep.com/

[LanaCSR in reply to coldfeet7]

Hey there! Dr. David Rye is the neurologist/sleep doctor I see. He is in Atlanta. He is excellent and has really helped me with the meds he prescribes, but I would like to find a doctor who I don't have to drive so far to see. Plus, it makes me nervous being prescribed meds from an out-of-state doctor because I worry that the rules might change and I might not be able to get my meds from an out-of-state doctor at some point in the future. So where is Fusion Sleep? Do you see them in person or virtually? If you don't mind, do they have you on meds and, if so, are any of them opioids? One of the meds I take is buprenorphine which I think is an opioid, and everybody seems to be so weird about opioids, and that is one of the reasons why I'd like to find a more stable situation, if I can.

[coldfeet7 in reply to LanaCSR]

Thanks for sharing.

FusionSleep has two locations in the Atlanta area. I have seen them in person and via telehealth. I have had two PSGs with them: one in each of their locations.

I was on Pramipexole and augmented and then I couldn't tolerate Gabapentin (itching). So I am not on meds now. My second PSG was able to get me confirmed as needing BiPAP. That made ALL the difference to the apneas and greatly limiting the aerophagia.

My RLS is tolerable, especially if I avoid sweets, especially at night. My second PSG showed severe PLMS, but I don't take a med for it since they failed. I found that eliminating all coffee (decaf and caff) helped a good bit (compounds in the coffee block the opioid receptors and your body make natural ones). You might try switching to tea and see if it helps or if you can reduce the buprenorphine.

I see Dr Rye is at Emory. I've heard the Drs are good and very well qualified but LOTS of negatives on Google about the staff and scheduling appointments so I held back from using them.

Maybe I should look into trying them via telehealth.

[LanaCSR in reply to coldfeet7]

Hmmmmm....I would have never thought to switch from coffee to tea. I drink several cups of coffee a day, all the way into the evening because the caffeine doesn't seem to affect my sleep. But maybe I should try switching. I love that idea! Do you know much about teas? What would be a good tea that won't put me to sleep? I know like camomile helps people sleep. So I wouldn't want to drink that. I would definitely like to find a tea that would be a good substitute for caffeinated coffee but without the side effects you mentioned.

[coldfeet7 in reply to LanaCSR]

I just drink any black tea in the morning for the caffeine. Some prefer green tea for better health benefits.

I drink decaf tea after noon. I don't drink many herbal teas, but sometimes in the evening to avoid caffeine and have a change.

Here is the article about the affects of coffee.

pubmed.ncbi.nlm.nih.gov/629...

[LanaCSR in reply to coldfeet7]

When I try to pull up the article it says no abstract available. 🤔

[coldfeet7 in reply to LanaCSR]

Sorry. Do some searching for terms in the summary that might help you find other sources. I originally found out about it from this person's page where they shared their experiences. It has lots of detail.

aminotheory.com/coffee/

[LanaCSR in reply to coldfeet7]

Thank you so much!

[LanaCSR in reply to coldfeet7]

So do you think the caffeine has any effects on RLS or is it just those compounds in coffee? Because if it's caffeine, as well, then even black tea has caffeine, right?

[coldfeet7 in reply to LanaCSR]

I think caffeine could have an effect if too much, but the coffee compounds mentioned in the reports are a bigger factor in my opinion. I noticed a difference when I switched to tea.

[LanaCSR in reply to coldfeet7]

Oh, really? That's GREAT that you noticed a difference when you switched to tea! So encouraging for the rest of us, and I'm so happy for you!!

[RCHD in reply to LanaCSR]

Chamomile, lavender, hops, lemon balm are all great night time teas

[Marlayna67]

Thanks for this! In blog #4 there is a useful tool for investigating how much a physician is being paid by a pharma company. Wow!

[coldfeet7]

I found his skepticism of PLMD interesting.

relacshealth.com/blog/does-...

[Hidden in reply to coldfeet7]

I just read the blog, and i agree it really is interesting. I've read similar things in the past and even Dr Buchfuhrer has suggested that PLMD/PLMs are something that do not need treating.

While i understand the arguments to an extent, if i look to my own experience whereby PLMs are my primary concern (with some mild RLS), I most definitely benefit from RLS medications. In fact, I couldn't function without them.

That's why i don't understand when these medicos say PLMD/PLMs shouldn't be treated. Obviously if they're not causing any issues with sleep, there's no need to treat them. But in the case of non-restorative sleep (bearing in mind that researchers don't currently have any alternative explanations as to why many people with a high number of PLMs have non-restorative sleep) then why not use something that works?

[coldfeet7 in reply to Hidden]

What meds work for you? I'd like to find one that I could tolerate to see if it works. I have been waking not really rested for so long that I don't know if I could tell what it feels like.

I have done better without coffee. I rarely fall asleep on the couch anymore.

[Hidden in reply to coldfeet7]

I take 300mg pregabalin with a very small dose of clonazepam (0.125mg) and have done for years. It does come with side effects but at least i sleep. Still seeking the HG (Holy Grail)

[SueJohnson]

I followed the link and it came up with a whole bunch of blogs at ReLACS health. Which is the one by Dr Berkowski?

[ChrisColumbus in reply to SueJohnson]

All, Sue