Endless DAWS

[Mikatrap]

Merry Christmas all,

I have been DA-free for 3 months now, and I don’t see much progress in my life quality. I am still stuck at home most of the time. I am exhausted, depressed. I suffer from endless RLS during day. I have kind of electrical jolts in the low back that make my low body shiver. I sleep well, thanks to clonazepan. In case of strong crisis, I can take up to 3 clonazepan to knock me down. My current medication is 600mg pregabalin, 200mg tramadol ER, bisoprolol 1.25mg, Venlafaxine 37.5 mg, clonazepan 0.5 mg before bed (and up to 1.5 mg in case of strong crisis).

In my worst times, it is hard for me to do anything else than stay in bed and take clonazepan to sleep.

I barely see my kids and I don’t see my colleagues anymore, except in videoconference. I can work 2-3 hrs per day top.

I think a lot about putting an end to my misery, as this is no life, not even for an animal.

I took pramipexole 0.19 and then 0.38 mg from 2021 to 2022, and then Mirapexin ER 0.26 mg in 2023. My initial RLS was mild. I suffered from augmentation after about 6 months under DAs. My DA withdrawal was a total failure. I was put under Neupro 2mg after an abrupt stop of Mirapexin. And my covert narcissist partner abused me and abandoned me (twice) while pushing me to suicide during my Neupro tapering off, which caused me a PTSD. Now she has blocked me for 5 months.

My ferritin is very high, thanks to two infusions.

Any advice is welcome.

Cheers

Mikatrap

[SueJohnson]

What happened to the methadone you were taking?

[Mikatrap in reply to SueJohnson]

I never took methadone. I was supposed to give a try, but the Liege neurologist did not agree to follow the instructions of the Antwerp neurologist.

[SueJohnson]

Bisoprolol is a beta blocker and makes RLS worse for most.

Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor including side effects.

And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res...

And as mentioned before Venlafaxine can make RLS worse.

[Joolsg]

I'm so sorry to hear this Mikatrap. But it can get better.The first thing you need to do is get a medication that covers the daytime RLS.

Methadone or Buprenorphine. Please push your doctor to prescribe something.

And as SueJohnson advises- venlafaxine worsens RLS so you need to safely taper off it and on to a safe anti depressant like trazodone or wellbutrin.

And it is possible for your dopamine receptors to heal. It can take months, even a year. But there is STILL the possibility that the dopamine receptors will repair themselves.

Try to do a little thing every day that gives you a little bit of pleasure- to stimulate dopamine. A cup of decaffeinated coffee with a piece of cake. A walk along a river.

There is hope.

Please stay safe.

[SleeplessinNC]

I felt this way for a long time after augmenting on Mirapex and the DAWS that came with tapering. Slowly the sunshine is returning. It is taking so much longer than I expected but most days are now a baby step forward. There IS hope. I’m so happy you reached out to the forum. Great advice and support can be found here along with empathy from kindred spirits. It does get better ☀️☀️☀️

[DicCarlson]

Effexor (Venlafaxine) is a nasty drug. Beware of discontinuation syndrome when attempting to change or quit. Consider The "Prozac Bridge" to get off it and perhaps switch to a friendlier drug.

[SueJohnson in reply to DicCarlson]

The problem with that is prozac can make RLS worse for many.

[tagaxel]

My heart goes out to you. Frankly I think you need to find another physician, perhaps a neurologist. Did anyone suggest that you should go back on pramipexole and taper it very, very slowly. The most important thing that you need to do is stabilize. Prescribing opiates and benzodiazepines just seems way over the top to me. I once suffered from a major depression and venlafaxine did nothing for me.

[Mikatrap]

Hi all,

I would prefer to avoid a stage 2 opioid like methadone. I tried buprenorphine and it gave me series of sleep paralysis through the night, which is pretty unpleasant.

My condition can be very good on my good days, with no symptom at all, and I see a positive trend in my evolution, even if it is very slow. My guess is that my nervous system is (way too) slowly recovering, and that at some point I could get back as I was before taking those awfull dopamine agonists. My hope is to end just with pregabaline for RLS, and to kick out all the other meds.

We'll see. Anyway, thank you a lot for the amazing support of this forum!