Possible urgent need to come off pramipexole: any tips please.

[Tpebop]

This morning I awoke with very bad dizziness and nausea making me unfit for work. I seem to be suffering from side effects (serious day tiredness) of pramipexole already and (after seeking medical advice) such symptoms could be caused by the pramipexole. I will know tomorrow morning if they are. In that case I will have to come off the pramipexole swiftly as the side effects are wrecking my life. However other site-users have said that coming off pramipexole can have serious consequences too, i.e. worsening of symptoms. Please help. Should I lower the dose gradually over, say, two or three days or just stop. If any of you have gone through this before, your advice would be most welcome. Cheers, Tpebop, Kent, Britain.

[ookla]

They always recommend coming off slowly, lowering your dose a little bit every couple days. Whenever I titerated down off the dopamine agonists, it didn't make a difference - I still got the consequences of discontinuing them. I've read that the opiods are pretty much the only thing that will get you over the augmentation and side effects of coming off a dopamine agonist. For me, I took one 50 mg of tramadol at night for a couple days and then the side effects were done. I hope this helps.

[Hidden]

ookla is right, you will need to cut down the dose slowly

[Pete-1 in reply to Hidden]

Yes that's what I have heard. Google "neuroleptic Malignant Syndrome" for some detail.

[nightdancer in reply to Pete-1]

That is EXTREMELY rare, and usually happens when one is on psychotropic drugs, as in meds for schizophrenia. I know this because my nephew is in the hospital for the 4th time, because he developed NMS from that class of drugs. Discontinuing the offending drug is how you get rid of it, if you ever do. Discontinuing a dopamine agonist, like pramipexole, would most likely not cause that at all, but MIGHT in very rare cases. Meds that cause NMS are normally the psychotropic drugs and Reglan, an anti nausea med. the less rare form of this is called Tardive Dyskinesia, and can cause severe muscle spasms, that are nothing like RLS. It is neck and facial spasms in NMS. Does not include the rest of the body. I have seen it up close and personal the last 3 weeks. We have been having issues treating my nephew because he cannot take any of the schizophrenic drugs, because he has developed NMS. The neck spasms are so bad it looks like he will snap his head off, and that started when he started a new med for him, Seroquel/Quetiapine ( I am in the US, so drug names may be different for the US and the UK) I do know we have been told it is EXTREMELY rare. It can very rarely happen with dopamine drugs, but that is even more rare than the psychotropic drugs. Possible, but not probable, but good to know about, just in case. The doctor said it is 99% of the time caused by use of the psychotropic drugs and is not caused by stopping a drug, it is caused by starting one, no matter the class of the drug. So, coming off of Pramipexole could not cause NMS, it could only happen while on it. I hope that makes sense. I have lots of notes and will look back.

My nephew is basically catatonic from being on some heavy duty drugs and he almost died from high ammonia levels, his blood pressure was sky high, etc,. I copied and pasted the symptoms from Psychiatric Times in another reply here so people can see it for themselves. You would know if you had this, trust me. It is one of the scariest things I have ever seen.

[nightdancer in reply to nightdancer]

What is Neuroleptic Malignant Syndrome?

"Neuroleptic malignant syndrome is a life-threatening, neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. Symptoms include high fever, sweating, unstable blood pressure, stupor, muscular rigidity, and autonomic dysfunction. In most cases, the disorder develops within the first 2 weeks of treatment with the drug; however, the disorder may develop any time during the therapy period. The syndrome can also occur in people taking anti-Parkinsonism drugs known as dopaminergics if those drugs are discontinued abruptly." That is from Psychiatric Times web site.. Unfortunately, I have had too much experience with NMS the last few wks with my nephew, so that is why this post caught my eye.

[nightdancer in reply to nightdancer]

This is why you never stop any drug abruptly, and it does not sound like this is anything you have, Tbebop.

[Hidden]

Yes, reduce the dose slowly, but as ookla has said, you will still feel that withdrawal. It will send your RLS nuts, as the dopamine receptors will object big time in not getting the dopamine. I would take ookla advise, and see if you can get a strong pain killer which might help with the withdrawal.. I havent had to go through this as of yet, and i dread it if i have to...as i cant take pain killers....

[Hidden in reply to Hidden]

So many people end up throwing up after taking the stronger

pain meds. I can't say it enough to eat a meal when taking them

and even then, some still can't take them.

Wish that there was a topical medicine that worked. I even

tried Novocaine which is what the dentist uses... in patches

and in cream form...none worked but my doctor made me try it.

[nightdancer in reply to Hidden]

yes, but many people can also tolerate the strong pain meds. Same as any other meds. I cannot take the dopamine meds without getting sick, but can take strong pain meds every day with no issues at all.

[nightdancer in reply to Hidden]

I have used things like muscle rubs, like Ben Gay, with menthol in them, and that does help. Has to have the menthol ingredient, though, for it to help ME anyway.

[Hidden]

Just as you gradually work your way from half a tablet to 4 or 5 over

several weeks, you probably should cut yours in half.. and go down

gradually.

So sorry that you had such a negative side effect. How scary.

I wonder how you are doing today... and tomorrow...

Keep us posted.

I stopped cold turkey and by night 2 and 3, I was very much worse

off than I was before starting the meds. I wouldn't suggest going

that way for anyone. When I started back up, I had to take it

almost a week to feel the effects. I started over with min dose to

bigger doses.

[Hidden]

I agree with Ookla, Tallula and Elisse. I've been there also and took Tramadol and it helped me a lot!! I wish you all the best!!

[Stephenr]

U did not say how long u were taking the Mirapex..i stopped it cold turkey after years of usage..after discontinuing it gets worse before geting better..i used Tramadol for the withdrawal period, which lasted about 3 months

[Tpebop]

Thanks everyone for your advice and experiences; very helpful. I woke up this morning with no recurring symptoms, so it is unlikely to be the side effects of the pramipexole; thank goodness! I also seem to have been successful in being able to reduce the dosage and still keep the RLS at bay. Hopefully, if this continues, I may be more awake during the day. It would appear that there is every chance that my dizziness was caused by a condition called Benign Paroxysmal Positional Vertigo, a not uncommon condition in older people, something to do with floating crystals in the balance part of your inner ear. Well, at least I know now. Thanks again and best wishes to you all, Tpebop, Kent, Britain.

[Hidden in reply to Tpebop]

Tpebop, how is the getting off the pramipexole going?

[Tpebop in reply to Hidden]

Hi Yikes, thanks for the interest. Since that episode two things have happened. Firstly it's been confirmed that the dizziness was caused by the BPPV; very unpleasant but not a side effect of pramipexole. The second thing is that I have recently seen my sleep physician who has stated that the severe daytime sleepiness I suffer from is due to not fully controlled sleep apnoea and is now on the case. So it's back to pramipexole being okay then...at least for now. Complicated things these sleep conditions... Best wishes, Tpebop, Kent, Britain.

[Hidden in reply to Tpebop]

I lived through the hell of BPPV. I lost a good

30 pounds in 3 weeks with it. I sat on the floor

and did not move my head. I slept sitting up,

I couldn't eat or drink decent..I was given large

doses of Valium and I slept with a night light

directly in front of me to give me something

to focus on. I was put in a MRI to check for

a stroke or a cancer.. I had to be carried and

put in a wheelchair While holding a towel over

my face.. I did the many exercises that were prescribed

in falling down on the bed, head tilts, rotations..

and eventually it went away. I dropped on my knees

and thanked God that it was over. I still felt like I

was rocking while I was walking -just as if I was

on a cruise ship for weeks and just stepped off

to still land.

No salt diet was ordered.. Only Fresh meats and

fruits and veggies. I could have nothing that came

from a box or a can.. No bread, no cereals..

It was crazy bad.. I ate homemade soup that

my husband made without a single spice in it.

It was survival mode.. eating to stay alive.

I hope that it never returns to you, ever... and

same for nightdancer and me. By the way, I still

see the same neurologist for my rls... There is

zero connection between the two.

[nightdancer in reply to Tpebop]

Since it went away, it does sound like vertigo. I get attacks of that, and cannot stop vomiting, and have to crawl on my hands and knees to get to the bathroom. One day they took me to the doctor's office, and I had to be taken in a wheelchair because I was so dizzy with a bucket in my lap. IF you are doing okay now on the lower dose, I would dare say that it was the vertigo and not the med giving you that awful experience. Vertigo is brutal.

[Wollyhat123]

Dove liquid soap all over lower legs before bed time, left on to dry all night, shower off next morning, might seem ridiculous but has been working for nine weeks for me. Think it's something to do with high concentrate of magnesium in the soap. That's what I have been told.

[nightdancer in reply to Wollyhat123]

there is no magnesium in Dove soap, just so you know. Looked the ingredients up on several web pages to make sure. I would say it is the massaging action for you that is helping. Are you not talking any meds at all now, Wollyhat123?

[Wollyhat123 in reply to nightdancer]

Yes still taking co-codamol, but think they

Just calm me Down a bit, I was on them before Ropinerole and in great pain. So I know I don't get much relief pain wise from co- codamol. Sorry about ingredients, that just what I read, but still know how I feel.

[nightdancer in reply to Wollyhat123]

you must have the bottle of soap you can read the label for the ingredients. Really interested what KIND it is and what it says.

I also posted about a chemist friend who used to work in a soap factory. at least you are using the liquid kind, and not placing a bar of it in your bed. IT must be very moisturizing, too. and smells good.

[Wollyhat123 in reply to nightdancer]

I do have the Dove hand soap dispenser white with blue top, liquid is white, I cannot read the ingredients, the printing is so tiny and I have poor eyesight but somebody on here said they had

Looked. on the net, so you could try that . It does smell lovely but it did give me a rash for a couple of days behind my knees, I think a combination of the soap and friction from car seat when moving left leg for the clutch. I don't put it above my knees anymore, and it is soap so when I wash it off in the morning, I moisturise my legs as I think it might become too drying, but for me it works, otherwise I wouldn't have wanted to posted it on here, I only wanted others to maybe try it, any relief from that disgusting pain is worthwhile. If it stops working for me,I will say.

[Hidden in reply to nightdancer]

maybe you both are correct... the company that makes

the soap changed formulas several times over the

years... I do freelancing for that company. That's all

that I can tell you. I get so upset when they change

formulas and get rid of scents that please me. = /

[nightdancer]

yes, slooooooowly. If you come off of it fast, the dopamine levels will drop too fast in your brain and you will most likely get worse RLS, because of a sharp drop in the dopamine system.

[Hidden in reply to nightdancer]

YOU are SO correct. I wish that I knew that before I pulled

myself off it cold turkey. I honestly felt sick as well as extra

RLS 'e. My whole body was tense and angry about the

quick withdraw. Like I said, it took extra time to build up

in my brain again. It must have a very short half life (meaning

that if you miss a night of it, you will get symptoms)

[nightdancer]

yes, if it only happened that 1 or 2 days, it is most likely not the med doing that to you, it is the vertigo like you said. Keep us informed.

[Hidden in reply to nightdancer]

Vertigo.. would you have known that it was vertigo Nightdancer?

I thought that I had a stroke or a brain bleed.. I prayed to die when

it happened and lasted 3 weeks or so. I'm feeling comfortable to

agree with you that getting off of pramipexole is not the reason

that she has dizziness. (Gosh I feel terrible for her) But then

again, we are all so unique...