RLS and DAWS on Twitter

[Mikatrap]

Hi all,

I wrote a document on my terrible RLS/DAWS story that I shared on Twitter: x.com/Michael59607421/statu...

Cheers,

Mikatrap

[SueJohnson]

Excellent article and I am so glad you found the doctor in Antwerp. It would be great if you could give me her name so I could give it to other sufferers who could use the excellent help she is giving you.

Only one correction to your article. 100% of people will suffer from DAWS when they withdraw from an dopamine agonist. Some will suffer much less than you did especially if they can get methadone or another opioid.

[Mikatrap in reply to SueJohnson]

Hi Sue,

Thanks for the feed-back. The doctor is Dr. Isle de Volder from University of Antwerp.

I added an acknowledgmend to healthunlocked.com. You are extremely usefull and supportive to me, and I'm so glad that I found your forum. Thanks a lot.

I'm gonna correct for the 100%.

Cheers,

[teakabeagle in reply to SueJohnson]

Actually , the incidence of DAWS is not 100%. Studies have shown it to be about 15-20%. DAWS has specific criteria that needs to be met for the diagnosis. People who suffered from any of the ICD’s were more likely to meet DAWS criteria. It is far more than increase in RLS symptoms.

[Mikatrap in reply to teakabeagle]

Thanks for the information! I directly correct it in my text.

[Joolsg]

What a traumatic journey Mikatrap. You should try to publish this in a medical journal so doctors understand how dangerous and life threatening these poisonous drugs really are.

I wish you success getting off the rest of the Neupro patch

Follow Dr Winkelman's advice, and go slowly, using opioids if necessary .

youtu.be/h5Hyhmxli54?si=aDS...(Not working as expected?)

[Sydney75 in reply to Joolsg]

Excellent information I know understand the pharmacology of gabapentin vs horizant. He seems very compassionate MD and able to admit his own mistakes about prescribing DA. Thanks.

[Merny5]

This is an excellent article and very well written! I agree with jools. You should try and get this published in medical journals. The general population as well as a huge part of the medical community have no idea how dangerous these drugs are and the silent suffering we have been experiencing. I’m sure that the big guys, Dr. Berkowski, Dr. Winkelman, Dr. Buchfurher and others could utilize this article to advocate for more research. I would strongly encourage you to share this beyond x and healthunlocked. 🫶🏻

[Moonwalker1967]

Thanks for sharing.

[Rameau]

Also now posted on Bluesky

[Typicallygaslit]

Thank you for sharing such a harrowing journey, it’s helpful when us sufferers discuss and try and raise awareness about these problems with health practitioners to have real life experiences to refer to even if we haven’t had DAWS ourselves. I wish you all the best using opioids to finally get off the dopamine agonists.

[Mikatrap]

I reworked a bit the text, improving some sentences, removing some typos, and adding a small conclusion.

[Mikatrap]

The plan of Dr de Volder to end my DA withdrawal is exactly in line with the one presented by Dr Winkelman: first ease my mood with an AD + redo an iron infusion, then maximize my dose of pregabaline to decrease as much as possible the augmented symptoms, if needed add methadone to decrease the symptoms even further, and then only taper off very slowly the remaining 1mg of Neupro. Then it will be time to remove as much other drugs as possible...

[Ticki]

You Go!

[Oscarcat63]

Superb piece of writing and a powerful message !Thank you for sharing this.

Have you sent it to Dr Winkelman and Dr Buchfuhrer ?If you can -and if is not too difficult - you could request your hospital records to add your story and send it ALL to the above.

I am certain that by using both your story and your records that they (Dr W and Dr B), could write up a 'Case Study' and publish it : hopefully not just in the US, but in the international medical journals, to be disseminated both far and wide !

Most of our problems seem to stem from a high rate of medical ignorance, scepticism and downright psychological gaslighting, attenuated by what I can only describe as a rabid paranoia concerning opioids.

I hope that your new neurologist will continue to work with you and your 'highway' will end at a happy, pain and rls free destination in the near future.

Wishing you all the very best and please keep us updated !

[Mikatrap]

I modified the document, notably to better ensure the anonymity of the persons mentioned in it. I removed the name of the hospital where my whole medical journey took place. As I work in the university to which this hospital belongs, it seemed wise to me to remove its name of the document

The new document can be found here: x.com/Michael59607421/statu...