[brightfirefly]

I dont even know how to use this site but hapened across it and really need to get off mirapex. Im on 3 pills at .25 ml, 3x a day and got off 1/4 2x a day and ended up in bed for days. This is my 4th attempt. Dr. wants me off of it
because of memory loss and addiciions to sugar and food. Eating late in the night and have never done this in my life. Thanks for any help anyone can
give me.

[Conductor71]

Originally Posted by brightfirefly

I dont even know how to use this site but hapened across it and really need to get off mirapex. Im on 3 pills at .25 ml, 3x a day and got off 1/4 2x a day and ended up in bed for days. This is my 4th attempt. Dr. wants me off of it
because of memory loss and addiciions to sugar and food. Eating late in the night and have never done this in my life. Thanks for any help anyone can
give me.

Hi brightfirefly (what a nice name, btw),

I can feel your pain...never have I been so huge! I found myself binge eating and awake all night. I would eat an entire family size bag of potato chips then the next night nearly a pint of ice cream. Wasn't even aware...just thought they were cravings. It hit me when I went to the docs and the nurse got a bigger cuff to get my blood pressure. I didn't even know those existed. I gained nearly 20 lbs! I feel like a linebacker.

It sounds like you have a good doctor. I would go even slower as you wean yourself off. If you go to quickly it can be pure hell and your PD will look much worse before you even out to a near baseline. I had this happen when I learned I was pregnant. I did in two weeks what should have taken two months at least. There are also cases resulting in a very serious reaction called Neuromalignant Syndrome and stopping meds too quickly can trigger this.

I vowed after Mirapex withdrawal that I would never take another agonist, but doctors think they help somehow, so I tried it again. A year later the crazy eating binges started. I will say that switching to the extended release agonist helped curb some of the icky side effects as did lowering my daily dose from 12 to 8 mg (Requip), but I still want to be off of it entirely for same reasons as you not to mention the daytime sleepiness and brain frog. It would be nice to warn that these drugs may be addictive.

My advice is to heed your body's signals. I just started with my doc's suggestion but went more slowly and it was so much easier this time. I had to stop at 8 mg because at the time I was a teacher getting called back to work.

Keep us posted!

Laura

[Conductor71]

Oh to offer more specific advice...you are in bed all day because you are in withdrawal. This is not acknowledged as something that happens but it does and no one in medical or research wants to know go on record, but I don't get delirious after the last dose of an antibiotic...so how else is this sudden incapacity explained?

I can only share what has helped me. When I reached a stage where I felt really debilitated I remained at that dosage or even back=pedaled by returning to previous week's dose. I let my system adjust for a week or so then started back on doctor's schedule only after I felt more normal or stable. This is simply just listening to your body and common sense.

Lauraa

[brightfirefly]

I went down to 110 lbs which was my normal when younger but now am 135. I can stand
the weight but Im harming my body with all the sugar Im eating at night! Just cant seem to stop! I know this will only make the Parkinsons worse faster and to be so dependent
on a drug scares me. I Worked in a hospital for 22 years in sterilization, (was exposed to
gluteraldahyde and was off work for 4 months with breathing problems etc. which my Dr. thinks may be what caused the Parkinsons) and then as a booking clerk in many clinics so know there can be med. shortages. This is frightening and I am aware of the syndrome that can be caused by going down on meds. Sometimes it is better to not know!
tnks.

[Conductor71]

Glad that you are aware of NMS; I hear stories of PWP having their meds taken away by ER docs...crazy.

You are right; in addition to not liking my Rubenesque figure; I was alternating between salt and sugar binges- nothing healthy. Why can't I crave celery or carrots? lol

Living healthfully and well is a challenge for many so-called healthy people; it is even more a challenge for us because of the meds. Any sort of curative is the holy grail; I would be happy with better treatments. Fifty years is a long time to have no real innovation in treatment.

It sounds like you have a good handle on this. Hope you decide to stick around; this forum is so informative and helpful.

[brightfirefly]

Well since last summer it has been an up and down life for me. All the med changes
are messing me up badly and I just want to dance, sing and be happy working away at
whatever suits me at the moment but this is really cramping my style. Today started out fine but then I started shaking all three limbs really badly around noon and about 2pm
I felt dizzy and felt over medicated and sleepy. This has never happened before.
I just sat there in a room full of people crying and then my husband took me home.
Im just a little tired of all the ups and the downs. I want to get things done and often
cant because of the mood swings and physical symptoms. I think the drugs are wearing off in between doses and the muscle spasms really are uncomfortable when I shake that much. That was rare and I just dont get it. Why the fluctuations? This certainly is a challenge trying o go through my second childhood with all this interference.
I was at the pool yesterday and they had a band playing so I went in and aked if I could
sing with them and they let me! The mike wasnt working well and I wasnt very good but
I have never done anything like that before and stepped right out of my comfort zone and did it! This is how I plan to live my life depite ole Parky. My arm was shaking away
but I just tell people what I have and why I shake and move riight along. that gets it out of the way for me as I am a very straight shooter and cant entertain beating around the
bush from people and dont have time to do it myself.
I have lots of living to do yet and plan to do it but I do need to get stablized a little better than this as Im either too happy or not functioning. A little more balance would
be nice for all those around me too. I can be a little hard to deal with at times.
I wish I could figure this out so I can get on with things. Too much Leva Dopa?
Too many changes trying to get off of Mirapex? Too much sugar and lack of sleep?
It is too confusing.

[brightfirefly]

I have an ache in my chest, am anxous and sick.
IM STUCK. I cant do anything.
Im to high on the levadopa and cant help myself.
Im in florida and am not covered for PARKINSONS BECAUSE i have had os
many nmed changes and now IM IN A MESS.
i AM SO FRUSRAATED i cant even opost on this site I dont know how.

[Conductor71]

Originally Posted by brightfirefly

I have an ache in my chest, am anxous and sick.
IM STUCK. I cant do anything.
Im to high on the levadopa and cant help myself.
Im in florida and am not covered for PARKINSONS BECAUSE i have had os
many nmed changes and now IM IN A MESS.
i AM SO FRUSRAATED i cant even opost on this site I dont know how.

Are you feeling any better? The choices we have really suck, don't they? One involves not moving and the other involves moving more than you want - if there is a God I am not believing that "made in his image" stuff anymore. Last I know there was no mention of him looking a spaz on drugs in Genesis...

Please let us know how you are doing. We all have our "...dark November of the soul" so says Melville. We especially can't dwell there though. PM if you need a pep talk :-)

Laura

I thought I had responded to you last week or so...I've lost count of how many times posts have poofed on me.