Please share your good experiences- off Ropinirole X4 days now with intense anxiety

[Todge]

Please tell me this will be short-lived. I have been off Ropinirole for 4 days now. I would say my daytime symptoms are really reduced and easily managed with a puff off my cannabis vape or 25 mg Tramadol. Years ago I had panic attacks and was started on Prozac. I had stopped taking it a few months ago when I started noticing my RLS getting worse. I hadn't needed it and felt pretty good that this was caused by a hormonal imbalance and was behind me now. The other night I had a small panic attack... thought nothing of it, I managed to sleep in the usual nasty fashion but wasn't any worse than normal. I even had a few good days and even a good night's sleep. Then All day yesterday I felt the anxiety looming. Sure enough I laid down (having taken 75 mg of Tramadol and 25 mg trazadone that my doc just started me on earlier in the week) and bam, was hit with a horrible panic attack. It lasted most of the night and just about all day. I have been on the edge of despair all day today. My doc ordered me 5 mg oxycodone for sleep tonight. I wondered if I can still do some of my Trazadone for the antidepressant effect? Do any of you reckon this is just my brain chemistry trying to adjust?? The thought of this being my new norm make me want to cry. I got really impulsive on Ropinirole and made my bf change the combination of the gun safe yesterday at the height of my attack because I feel so out of control with this sadness and anxiety. I feel so on edge and just soo incredibly sad.

Does anyone have any happy thoughts for me? Will I wake up tomorrow and all this will be behind me? I read that it takes about 48 hrs to get the Ropinirole out of the system.. its been 4 days. Maybe it just takes time for my natural dopamine to regulate??

Please tell me this is just temporary and I will tough it out!!

Thanks in advance.

Leslie

[Margaret122maryL]

Leslie—I have felt the incredible sadness too. AWFUL I have been off pramipexole for 3 weeks and I still feel some sadness and anxiety, but not as desperately. I went out with friends this evening, and actually enjoyed myself. I now know the desperation is temporary, and I know Tramadol helps. Please—take one hour at a time. This may not be behind you tomorrow morning, but some morning soon it will be.

Things that have helped me…music, stretching, walking, knitting, support from my husband.

Things that have not helped…looking up all sorts of side effects and reading dire studies.

Keep in touch.

[Polar Bear]

Todge, it is very early days. I don't know what dosage of ropinerole you were taking or what it was when you finally stopped but your body is in withdrawal. You've done the hard part of deciding to stop and have made it for 4 days. It will be maybe another 10 days when it should start to get easier but keep going.
I came off 5mg ropinerole but weaned myself very slowly taking about 10 months to do so, this caused practically no withdrawal symptoms. On previous attempts at coming off quicker I didn't make it past day 3. So well done you.
As I said, it's very early days for you. It will get easier but it'll take a few days before you see that.
Don't give up..... You are a four day warrior and you will get there. Don't expect too much of yourself, just concentrate on making it from day to day.
You will be so proud of yourself when you are fully ropinerole free and have made it through the withdrawal. It is a difficult journey you are on but you will get there. Every day is another day down.

[Margaret122maryL]

Leslie—I re-read what I wrote last night and decided it needed some upgrades.

Also, wondering how you are.

For me, it is an up and down fight. I get frightened when I read about those who have on-going withdrawal symptoms for months or years and decided it is best if I stay away from those notes.Those people are in the minority. You don’t hear from people who have success.

I think what has helped me is taking one day at a time, making a plan, keeping as busy as my body allows so that I accomplish at least one task every day and otherwise making no special demands on myself. My plan includes MD consults,accupuncture, accepting the need for medication. My plan is a bit complicated by my GP’s attitude—she’s willing to prescribe what I ask for, but I think she is resentful that I didn’t follow her original advice which was to increase the pramipexole rather than taper off it. I don’t think she has studied the withdrawal process closely.

The specifics…
I have been playing piano lots and wonder if my neighbors hear Moonlight Sonata at 1:00 AM. It helps me, maybe it helps them, too.
I have been knitting warm winter stuff for the clients at our food pantry. Keeps me busy and keeps me thinking of others.
I have been honest with my husband. “ Today, I feel….” And “Today, I need your support.”

I’m wondering how your appetite is. I have lost about 8 pounds in the past month. No appetite. My BMI is fine the way it is…another 5 pounds and I could be out of range. Today, I think I will start sipping a supplement.

I think of you often, and pray for us both.

[Todge]

Hello and thanks for your replies! Ugh this has been HORRIBLE. I have been off the Ropinirole for one week officially. I had been on 4-6 mg for the past 3 years. I managed to wean down in 20 days. The good news is that my daytime symptoms are just about gone for the RLS. A tiny dose of Tramadol at night seems to help them. I still do my rituals, my bath, sleepytime tea, etc. But for the first time in years I don't dance around the house in between increasing doses of Ropinirole.


BUT the anxiety and panic attacks are just insane. I don't know if I would have been brave enough to do this had I known about the anxiety. And it makes sense, I have always been sensitive to hormonal changes and I am putting myself through a humdinger right now. I had thought the lack of sleep from the Ropinirole withdrawal would be the worst symptom. And yes.. those nights were bad. BUT Leave it to this whole process and RLS, just when I thought being up all night and pacing was bad, now I get to pace all night AND freak out.

I spend all day long watching the sun move across the sky and feel the fear of the night looming. I think the years of RLS just make me dread the nights and sure enough I fall asleep pretty fast (Oxycodone IR 5mg) But usually snap wide awake 2 hrs later in the middle of a panic attack. I spend the rest of the night pacing and following my old RLS routes. So I have one panic attack that lasts like 20 minutes, then spend another 2 hrs to realize that I didn't die where I march around blankly staring at nothing being too scared to try to lay down again. I finally fall asleep at like 5 or 6 am and am up for the day and already dreading the coming night by 7 am.

I have been so busy staying occupied but the ruminating thoughts are just merciless. I Rage Garden, raise mealworms for my 5 chickens and am painting the shelves in my utility room- even the undersides because what else should I do at 6 am. I am glad I am on FMLA because I am a zombie all day. Oh and I took up canning this summer. I stink at it. Literally. I was like what is that horrible smell?? Come to find out the top came off one of my cans of corn and it stunk to high heaven. My son is stuck in his house with a flu-bug and I went out today to get him supplies and it felt good to be out and about. Anxiety is such an absorbing issue. I spend so much time feeling sorry for myself. But I think, Margaret, that I shall emulate you and I will try to be more giving of my time tomorrow. Dwelling on Anxiety all day long doesn't seem to lessen its effects at 2 am.

I was going to try Kratom, but my crazily self-educated know-it-all daughter said SHE won't even take that stuff. And this is the kid who charged over a thousand Morning Glory seeds to my amazon account. You supposedly soak them in alcohol or something and you are either high all night or vomit for 24 hrs straight. Here I thought she was getting into horticulture.

You mention weight loss, I have plenty of pounds to spare but yeah barely ate yesterday and haven't eaten anything today yet. Just NO appetite. But leading up to these past anxious days, the Cannabis certainly kept the munchies alive. Now that Anxiety is driving, I fear the stock price of Door Dash will suffer. I believe I personally finance half the delivery drivers in Rochester.

Ok... I also figured out how to get notifications when people respond so I won't leave you hanging.

thanks again Polar Bear and Margaret. I am so glad to not be alone.

[Margaret122maryL]

Leslie—So glad to hear from you. I do think of you often. I think it amazing t hat you are able to do as much as you are doing despite your symptoms…the gardening, the painting, the canning. I sit and knit or play the piano or go to bed—after I force myself to do one or two productive things. Today, we are going north for two days to visit with family. I think it will be good for me. The last time we traveled north—two months ago, when this whole thing started—it was very difficult to put a smile on my face and tolerate the children. No children this time.

My good news—My FitBit says I slept 8 hours last night and gave me a sleep score of 89%. I took half an ambien before bed, and a total of 100 mg Tramadol. Less than usual. Low level RLS symptoms were tolerable. Last week, I needed a total of 175 Tramadol to stay sane. Tramadol does help with the depression and anxiety.

As for the THC—not something that is practical in NYS. It’s legal to have, not legal to sell. We can get it if we cross into massachusetts, but there are so many mixed reviews that I wonder if it is worth it. I tried it a few times, but it wasn’t as pleasant as I had hoped.


Dopamine agonists should be given to NO ONe who is not terminally ill. I will tell this to every doctor I encounter. I have never, ever been in such a dark place.


Have a good dat.

[Todge]

I grew up in the Fingerlakes region of NY. Newark, N.Y. I got my BSN from UB. Still a big Yankees and Bills fan. I need to go back for a visit as I still have a brother up in Watertown, NY.

Medical Marijuana has been approved in MN. I THINK the cannabis helps take the edge off now during the days. I don't think it helps the full blown augmentation symptoms. I am still mostly undecided about its effectiveness but will keep you posted on if I think its worth it or not when I feel normal again.

I slept pretty good. I took 25 Tram, 25 Traz, and 5 of the oxycodone. I did not have my usual middle of the night panic attack so of course I feel all tough and spunky today- till about 5pm when I start fearing the night again. BUT I have to tell myself and anyone else who has panic attacks during withdrawal that it isn't every day. It is just temporary. I hope to feel the good effects of Tramadol any day now as I have been on it for just under 2 weeks.

Just sharing that you are traveling helped me enormously. I have a girls weekend planned and a roadtrip to Colorado in a few weeks and I was thinking yesterday that I may have to cancel since I feel so crappy. I also just can't manage a smile on those days after an all night walking session. I am probably pretty horrible to be around as I just am constantly moving. I aim to have an expressionless face and not let anyone see that I am dying inside. I try not to impact the people around me, but I know I don't really fool anyone. BUT I think I may tough it out, or at least not cancel yet. I have a few more weeks till my trip and maybe by then things will be more tolerable.

I am keeping careful records of my "journey" so I can hopefully share a happy ending for other people who finally get off their DA. As hearing from someone who is a few weeks ahead of me has been invaluable to keeping my sanity.

Have a great day yourself and anyone out there!!

[Rustsmith]

Were are you going in Colorado? I live in Colorado Springs.

As an FYI, you will find Recreational Marijuana shops in the larger cities. You need a Colorado marijuana license to enter a medical marijuana shop, but any adult can enter one of the recreational shops and those from out of state can purchase enough to get into trouble if they don't know what they are doing. The recreational shops carry a wide variety of products, from buds to a large variety of edibles.

I will also warn you that if you or any of your friends have breathing problems, be sure to bring any meds that you might need. Our air quality has been terrible all summer due to the smoke from the fires in northern California. Many with severe asthma have not been able to go outside for weeks.

[Todge]

My friend lives in Ft. Collins. This will be our third trip. I just love it out there. And we go the way of the Badlands (From MN) and sightsee along the way. We always hit the recreational shops and of course look like tourists as we exclaim about the different offerings. Marijuana has come a long way from smoking my mom's friend's homegrown out of pink post-it notes in the 80's. They even have it in pop now! I can get the medical stuff here in MN now that I have a "card." BUT since leaf isn't legal until the spring they don't separate the strains.. so it is hit or miss if your product will knock you out enough. So I plan to stock up on Indica and other sleepy hybrids. My own doctor said I should find what strain works for me then buy it off the street as the medical stuff is SOO expensive still and NOT covered by insurance.

Is Colorado Springs by Ft. Collins??

[Rustsmith]

As you know, "close" is a relative term when it comes to the western US. Springs is about 140 miles south of Ft. Collins. That isn't too far except that it means having to drive right through the middle of downtown Denver on I-70 and the traffic in Denver can be horrible, simply because there are not that many freeways. The only good thing about that drive is that it doesn't require having to go into the mountains.

[badnights]

Hi Leslie - My brother lived in Fort Collins for years, but he moved to Oregon a few years ago.

I have been reading your thread. Something for you to consider is whether cannabis might be causing your anxiety. I haven't dug into the science much, but it seems that the main culprit is THC, which can relieve anxiety at low doses but cause it at high doses in susceptible people.