I need some guidance on DAWS.

[patioRN]

Hello! I went off Mirapex for RLS about two weeks ago. I was on one mg. I should have tapered (I realize that now). The depression is overwhelming, and I’m afraid it’s never going to end.

[Jelbea]

Hello there patioRN and welcome to the site. You must be feeling dreadful. I have recently come off an opioid drug and the withdrawals were absolutely horrible, especially the dark, dark depression which no matter what you do you cannot lift. I am sorry I cannot give you any advice but very soon someone will read you post who is much better qualified to help you. You may indeed have to restart the Miripex and then taper very slowly. However, as I say I am not the best person to help. I will tell you that the feelings you are experiencing will settle and just hang on in there until more help appears very soon.

Take care in the meantime

[patioRN in reply to Jelbea]

Thank you so much. It helps a lot to know I’m not alone.

[Hidden]

It appears you've gone from a massive dose in excess of the recommended maximum dose of 0.75mg to nothing overnight.

I wonder if you consulted your doctor about withdrawing from pramipexole and if so, did they not warn you? They have already caused you harm by overprescribing.

However, now you are obviously suffering fullblown withdrawal symptoms.

The good news is that the withdrawal effects you're now experiencing may be reversible.

My suggestion is that you start taking the pramipexole again, but no more than 0.75mg.

You might want to first keep taking 0.75mg until your withdrawal symptoms fade. THEN start reducing it slowly.

Withdrawal effects normally occur when lowering the dose of pramipeole even in small reductions. These usually consist of a temporary worsening of RLS symptoms and sleeplessness. The depression you're experiencing may simply be a consequence of going cold turkey

DAWS isn't that common and can occur in some individuals even when tapering off a dopamine agonist. It doesn't necessarily require somebody to go cold turkey.

In addition, people who suffer DAWS are usually people who have developed an Impulse Control Disorder (ICD) as a result of taking a DA.

In which case, if you haven't developed an ICD and as you did go cold turkey it's likely that you do NOT have DAWS.

You perhaps also need to think about what else you can do to minimise withdrawal effects and to manage your RLS once you have stopped taking pramipexole.

Things to consider are -

- A reducing schedule for the pramipexole

- Additional medicines which may reduce withdrawal effects

- A replacement for the pramipexole once you've stopped

- Other measures to manage your RLS.

I suggest the schedule I used for weaning off pramipexole i.e.

Reduce the dose in steps of 0.0625mg. For this you will need 0.125mg tablets and cut them in half. (You could also use 0.25mg tabs = 2 X 0.125mg tabs).

You can reduce the dose every 4 weeks, less if withdrawal effects fade, but no less than every 2 weeks.

Example

0.75mg until withdrawals fade (6 X 0.125mg tabs or 3 X 0.25mg tabs)

Then reduce by half a tab for 2 - 4 weeks (5 X 0.125mg + one half a 0.125mg)

Then reduce by half a tab for 2 - 4 weeks (5 X 0.125mg)

4 1/2, 4, 3 1/2, 3,

and so on.

This could take up to 10 months.

If you're currently suffering augmentation, i.e. symptoms in arms as well as legs, daytime symptoms, then this will reduce as the dose gets lower.

Your doctor may prescribe a sleeping aid if you're not sleeping.

Some people find it necessary to take an opiate to reduce withdrawals. A primary doctor may prescribe codeine or tramadol, for naything more potent a specialist consultaion would be needed.

The usual replacement for a dopamine agonist for RLS is an alpha 2 delta ligand. Your doctor could prescribe pregabalin (Lyrica) or Horizant. You can start taking this whilst still taking pramipexole. It takes up to 4 weeks before it starts working. You won't know just how effective it's going to be until you've stopped taking pramipexole altogether.

An alternative replacement is an opiate.

You should also consider two other non-pharmacological measures.

Iron therapy

Eliminating aggravating factors.

There is lots of information on these in this forum.

Your main priority is to initially to get your withdrawal effects under control.

All being well these occurred because you went cold turkey and may not be DAWS.

[LaLasMum in reply to Hidden]

I have joined this forum as my mother is suffering severe RLS and it is getting to a point where her lack of sleep is causing depression and mania. May I ask, are you a doctor or a specialist? It seems most GPs treat the syndrome by throwing drugs at it. I am convinced it is more deeply routed than that. It would be interesting to understand you frame of reference and your experiences. thank you

[Hidden in reply to LaLasMum]

Hi the vast majority of members of this forum are not health professionals and even those that are, are not acting in that capacity.

All members share their experiences of their RLS and learn from each other. Some members are "patient experts" and are a little more knowledgeable about the condition.

They may offer advice or suggestions based on their knowledge and experience but this is not intended to be professional advice.

It is recognised that health professionals knowledge of RLS is generally somewhat limited and in addition you don't have to be a health professional to be knowledgeable.

It's largely a consequence of the nature of current health services and the education that health professionals get that "allopathic" doctors prescribe medical treatments and since surgery isn't currently an option for RLS, they tend to simply prescribe drugs.

They have little knowledge of the wider or holistic aspects of RLS or any condition really.

Thats not to say that medications should be avoided in cases where RLS is so severe that it is having a significant impact on somebody's quality of life. It's often a matter of compromise or balance between the adverse effects of taking a drug and itgs benefits.

There are however, non-drug or alternative treatments for RLS which can be used alongside drug treatments.

For some people these may entirely replace drug treatments so that people can manage without drugs.

Such treatments may take much longer to work, might not be quite effective or may simply not be an individuals preference.

As regards your poor mum I can appreciate that she will be depressed if she isn't sleeping. There is a range of things that could be suggested to help her, but it would be useful to know what treatments she's already tried.

You also mention "mania" which needs clarifying since mania is the opposite of depression so I'm wondering if this is actually what's she experiencing or if this is something else e.g. anxiety or agitation.

Mania is rarely seen these days and it doesn't normally occur as a result of RLS, it's usually the result of a mental health condition, which in turn could cause insomnia.

I hope this helps.

[Joolsg]

I don’t know how you’re still able to write. Going cold turkey from such a very high dose is extremely dangerous.

I was depressed for about 4-6 months after getting off a similar drug Ropinirole and I had NEVER suffered depression before.

Please read Manerva’s response and seek medical advice.

Anti depressants make RLS worse so don’t just start taking those.

Your RLS must be keeping you awake constantly? Are you taking any new meds for it?

[patioRN in reply to Joolsg]

Thanks so much for your response. Actually, the RLS hasn’t been much of a problem. My RLS is due to my multiple sclerosis. I’m on no other meds. The problem I’m struggling with is depression and crying sieges. They were starting to get better, but came back yesterday. I guess I’m just needing some reassurance that this depression will go away. I do have an appointment with my primary doctor tomorrow.

[Joolsg in reply to patioRN]

I also have Multiple sclerosis and severe RLS. I’m stunned you managed to get off such a high dose without severe withdrawal symptoms.

The depression should settle but as I mentioned don’t consider anti depressants ( including Amitriptyline) ad they’ll worsen RLS but perhaps a benzo like diazepam or clonazepam might help with the withdrawal depression.

How is the RLS? How long were you on pramipexole?

[patioRN]

The first few nights were leg pain hell, but it’s much better, thanks. I’ve decided because I’ve had some horrible reactions (Botox to loosen my calves is a whole other horror story and compulsive Mirapex behaviors that nearly destroyed my 22 year marriage, then the detox depression) that there will be no more meds. I’ll just ride out the DAWS like the rest of you brave soldiers! Thanks so much. It’s reassuring to be able to talk to someone who doesn’t think I’m crazy, a whiner or both!

[Joolsg in reply to patioRN]

You’re very brave if you’re prepared to see if med free will work.

I suggest you get full panel blood tests and ensure serum ferritin is above 100, preferably 300 as you may be one of the 45-50% who find it relieves their RLS.

Magnesium can also help.

If you find it’s too difficult there are other meds available like pregabalin & Gabapentin or low dose opioids.

I really hope your depression lessens and that you enjoy many nights of peaceful sleep.

P.S if you suffered Impulse Control Disorder you can sue the drug manufacturers- many people have done so and been awarded compensation.

[patioRN]

Oh. I was on Mirapex for about eight years. When I went on it, DAWS wasn’t mentioned in anything I read, but I don’t think much was known about it back then.

[Hidden in reply to patioRN]

I'm sorry to hear that you've that you have an ICD a result of the mirapex. In which case you may be experencing DAWS.

You will need to take all the steps that you can to get through the withdrawal period.

I would still suggest you start taking mirapex again and then slowly taper it.

Also take heed of what Jools says.

DAWS can cause severe depression and it can last a long time.

[luckykarin]

Hi. I tried to stop mirapex cold turkey as well. It was pure hell. I did not know about DAWS. My doctor did not know anything about it. She is a general practitioner and did not have enough knowledge about the drugs. After some extensive research, I sent her everything I found. She thanked ME for all the work !! I went to a neurologist and we now have me on a slow tapering plan. I went from taking a 1.5 twice a day to now I take .25 in the am and .25 at night. It made all the difference in the world. Still tapering. Slowly. I started on the mirapex 12 years ago. So I feel it will take time. Best of luck to you.

[Hidden in reply to luckykarin]

1.5mg Mirapex is TWICE the official recommended maximum dose for RLS. The dose you identify is for sufferers of Parkinson's Disease.

Great that you've managed to reduce the dose to a total daily dose of 0.5mg, but this is still high.

If you're taking it both morning and evening, I guess this is because you have daytime symptoms. In which case it would seem you are suffering from augmentation.

As you reduce further you should find the daytime symptoms diminish.

I hope your tapering plan is working and I wonder if you have started taking any replacement medication for the mirapex.

I hope that the neurologist has also discussed iron therapy and the avoidance of exacerbating factors with you. These are also recommended in cases of augmentation.

[Ranjits]

I am seeing neurologist next week I can ask him in kings hospital but appointment is telephone appointment

[Hidden in reply to Ranjits]

Hello Ranjits, I hope this has a good outcome for you.

[Merny5]

I’m so sorry to hear you are suffering with DAWS. The is such a small percent of us who suffer from this when coming off of a DA. Let me reassure you that it DOES get better. I went from 9mg of Neupro to 0 in about a month. I was in such an extreme state of depression, coupled with anxiety. That is when I did some research on withdrawal and reached out to this group. DAWS was definitely the culprit. I stared taking the patch again at 6mg. and have beeN cutting my patches Very slowly. It has been 7 months and I am still not completely off of the patch. ( just under 1mg. now) I keep a daily log with a rating scale of how Im doing every day. When I am having days of uncontrollable crying and sadness, I look back at the log and I can see that I have definitely improved. I now have many more good days than bad. In addition, the length of time of the “sadness/crying episodes” has decreased So take the advice of this group and go VERY slowly and you will get through this! Good luck. Please keep us updated as to how you are feeling