Joined just to share this in hopes that it can offer a deeper look into getting off dopamine agonists and what it entails for people. I've never seen anyone online post a thorough log as to what getting off these meds is like and how they did it, so here is mine.
Background
Some context, I have been on pramipexole for about 10 years (Am 37, female), and was never warned that it would be near impossible and hell to get off of. When I attempted to get off of it before and told that doctor that studies show it requires methadone or similar to get through it, she laughed at me and told me no docotor was going to prescribe me an opiate. Thankfully, I have an absolutely amazing doctor now who was open to the latest research and sympathetic. I had been augmenting for a while, going higher and higher in dose, but it was starting to not be effective anymore and I knew I had to get off of it.
Like many others, I had tried everything else, diet changes, lifestyle, iron, magnesium, blood work to check levels, epsom salts, OTC RLS remedies, gabapentin, pregabalin, exercise, and so forth, the list goes on.
Having been off of pramipexole now for almost 2 weeks, I will say the roughest thing right now is the anxiety and fatigue. At this time 100mg of tramadol and cannabis RSO capsules, along with vaping cannabis is effective enough to deal with the rls. Hoping the rls continues to calm down as I get further away from my last dose of pramipexole. Goal is to get down to 25-50mg of tramadol with cannabis to control the rls, and hoping that the Near-IR will work because I do have really bad circulation in my lower legs which is the basis for the original theory of what causes RLS. Also waiting on the TOMAC Nidra device from Noctrix to try.
My doctor also confirmed that Wiley is a huge source that he used as a med student and during his residency.
onlinelibrary.wiley.com/doi...
From the study, "It was claimed by Ekbom in 1945 that the symptoms of RLS were due to impaired circulation in the small vessels of the lower extremities"
This isn't the kind of circulation problem where you need compression, compression in this case makes it worse, as it is where not enough blood is getting to your feet and lower legs in the first place. My feet and especially my pinky toes often turn purple from lack of blood flow. My shins down are often cold no matter how active I am. Socks don't help because my feet aren't producing enough heat in the first place from lack of circulation to hold any heat in.
My doctor pointed out as well, with impaired circulation, if it is an iron issue, even if you have a normal level of iron, that iron isn't getting to the lower legs in the amount it needs to. Increasing iron could theoretically help, by increasing the amount of iron that does manage to get to the nerves and tissues in the lower legs. Theoretically, fixing the circulation problem with NIR, fixes the issue of iron not getting to the tissues, etc. (So long as you have adequate iron levels in the first place)
As I have only been using the NIR device for a few days, it is too early to tell if it will help, as using NIR takes 2-4 weeks at 30 minutes to affected areas for at least 3 days a week.
Of course this is my experience, my lack of lower leg circulation is a lifelong problem that steadily has gotten worse and until I have given the NIR device a fair chance, it lines up with the original theory. This is not me saying that this is the case for everyone, but it is worth a look if it is a possibility you've never known or considered.
Anyway, to the taper log. Note: When I mention Levadopa, it is a 100/25mg tablet that I break in half.
I hope this helps people in their journey to taper off of DA's and gives a clearer picture on what to expect, what it will be like, and what is necessary to get through it. This took about 3.5 months.
--The Taper Log------
Nov 25th 2024 - .875 to .75 (-.125)
W/ 50mg tramadol
Dec 3rd - .75
W/ 25mg tramadol
Dec 4th - .75 to .6875 (-.0625)
W/ 25mg tramadol (had to take other half at 7am)
Dec 6th - applied 10mcg buprenorphine patch before bed. (Was to replace tramadol, no tramadol taken)
Dec 7th - .6875 to .625 (-.0625)
Patch removed in afternoon, extremely intolerable/dangerous side effects. No tramadol.
Dec 9 - dry vape cannabis ("Animal Face" strain), no tramadol, still lingering effects from patch. Feeling apathetic, no motivation or drive to do anything. Worsening insomnia.
Dec 11 - cannabis + 25mg tramadol. Vaping only lasts two hours. Tramadol improved sleep. Patch finally out of system?
Dec 12 - RSO 10mg cannabis capsule. No rls but can't sleep. Need 25mg tramadol to sleep.
No motivation. Dopamine dysreg symptoms.
Dec 14 - .625 to .5625 (-.0625)
RSO capsule + 25mg tramadol
Dec 15 - Worsening dopamine dysregulation
- depressed mood, high anxiety, paranoia, no energy, no motivation, no drive, just want to numb my mind and sleep.
Dec 18 - worsening anxiety, racing thoughts, intrusive thoughts, mouth area muscle twitches, other body muscle twitches, insomnia, breakthrough rls - required taking 25mg tramadol in middle of the night.
Dec 19 - taking two RSO capsules seems to allow me to only need 25mg of tram. Didn't have to take a second 25mg in the middle of the night.
Dec 20 - .5625 to .50 (-.0625)
Two RSO capsules + 25mg tramadol.
Some mild breakthrough rls.
Dec 22 - tried 3 RSO + 25mg tramadol.
Still needed to add another 25mg at 6am.
Dec 24 - 2 RSO + 25mg tramadol
Have needed to add 25mg in the very early morning or middle of the night to stop breakthrough rls. Previous night taking 25mg did not stop the breakthrough rls. So taking 50mg at once tonight with the two RSO capsules.
Feeling increasingly impulsive, wanting to gamble.
No breakthrough rls
Dec 25 - irritable, tired
50mg of tramadol once with pramipexole 2-3 hours before bed is a must to combat DA withdrawal related worsening rls. Hoping cannabis allows me to stay at 50mg. Don't want to increase opioid.
Dec 27 - .50 to .4375 (-.0625)
Jan 3 - .4375 to .375 (-.0625) + avb w/peanut butter (already vaped bud) cannabis ("animal face" strain). (Disp doesn't have RSO capsules in stock).
Mentally feeling a bit better. Impulsive cravings subsiding.
Jan 5 - starting to feel worse mentally. Becoming more impulsive. Needed half a Levodopa with 50mg tramadol (didn't want to open window to vape it's too cold). Worsening breakthrough rls.
Jan 9 - worsening anxiety, depression, lack of self control/impulsiveness.
Tired. Not sleeping well. Dizziness and losing balance but haven't fallen.
Doctor recommended slowing taper to every other week rather than weekly.
Jan 14 - mental health has been extremely poor. Unbearable anxiety, feel like I can't relax, very stressed, feel like my brain is on constant "high alert".
Tramadol and pramipexole most effective if taken on empty/mostly empty stomach. Taking on full stomach noticeably lessens effectiveness and leads to really bad rls.
Jan 17 - .375 to .3125 (-.0625)
Jan 18 - while trying to sleep: random muscle twitches/tensing. Involuntary mouth/face muscle movements (TD-like). Body muscle twitches. Really bad insomnia.
Jan 19 - random muscle twitches have lessened/stopped
Jan 22 - breakthrough rls requiring cannabis to control. Hadn't needed any cannabis since last dose reduction for a few days. 2 "hits" on dry cannabis vape alleviates breakthrough rls within minutes ("Garlic Cookies" strain very effective). Like usual inhalation only lasts about 2 hours and need to repeat when I wake up and rls comes back. (I use a single tightly packed "bowl" in the pax vape for a few nights, then for a few nights use the avb, etc) (avb at 0.05g "dose". Made the mistake of ingesting too much avb one night, was not a good time.)
Feel very tired most of the time and want to sleep in more and more.
Jan 23 - since last reduction I again have no drive or motivation to do even basic self care or eating. Have to force myself to eat even if I physically feel hungry. The drive to actually eat isn't there despite the physical hunger.
Everything feels like overwhelming physical and mental effort. Can't bring myself to do anything but sit on my PC and play WoW. (I feel it is giving me the only dopamine I can get right now).
Despite depression symptoms, I don't feel particularly "depressed". It feels like something is missing in my brain and everything related to that feels empty. Hard to explain, not apathy, but empty, but content in a way? Bizarre. Anxiety has definitely been worse than depression. Otherwise I'm just "existing" but not feeling as bad as I had been a week ago.
Stress tolerance extremely low/getting stressed very easily.
Partner has commented that I look like I'm "wasting away".
Jan 29 - Starting to feel better. I seem to start feeling better a little over a week after lowering dose.
Jan 31 - .3125 to .25
Really bad migraine lasting into the night. Bad insomnia even after migraine stopped.
Feb 6 - anxiety getting worse. Having mild anxiety attacks. Been using half a levadopa early mornings when rls starts.
Feb 8 - tired, still having slightly elevated anxiety. Same general symptoms of low drive and motivation. Emotionally and mentally exhausted from current politics.
Feb 10 - Was able to find RSO capsules again.
Feb 13 - Noticing increasing agoraphobia/social anxiety. Don't want to leave the house. Don't want to be around people or be seen by anyone except close familiar individuals.
Feb 14 - .25 to .1875
Feb 16 - only needing 1 rso capsule. But having breakthrough rls in middle of the night and morning requiring vape or levadopa.
Feb 17 - .1875 to .125
Having bad breakthrough rls that only adding 25mg tramadol could stop. Tried vape and levadopa with no success. Was awake till 6:30am before I finally took the 25mg of tram so I could get some sleep.
Lowered to .125 cause I want to get this over with and try not to need the increased tram for longer.
75mg tramadol + 2 RSO capsules.
Feb 18 - really bad insomnia, racing thoughts.
Feb 19 - took 50mg tramadol with 1 rso capsule last night. No rls til 4am, but bad insomnia. Took half a levadopa and fell asleep. Woke up and started having rls at 6, tried to take 25mg tramadol, didn't stop the rls, waited until 8:30 to take another half levadopa and went back to sleep.
Tonight Took 75mg of tramadol at once with .125 pram and 1 rso capsule at 7:30, took NyQuil to help with the insomnia. No breakthrough rls til about 4am which responded to vaping.
Feb 20 - too much breakthrough rls this morning. Didn't want to keep vaping or use levadopa. miserably tired.
Feb 28 - losing a lot of sleep from worsening rebound rls. Took 50mg of tram last night with RSO. Took another 25mg around 6am, tried vaping, tried Levodopa, barely any relief.
March 1 - decided to just run the gauntlet now and stopped the prami completely last night. Took 100mg of tramadol and hoping to go back down to 75mg and then 50mg after a month and so forth. Dont want to be on 100 longer than necessary.
Barely slept, had to take 3 halves of Levodopa at three different times to get any sleep. Tried vaping, didn't help. Really bad rebound rls. Levodopa wears off after about 2 hours.
Tonight I took 2 RSO, 100mg tramadol, vaped a little bit and ate a small amount of AVB. Praying it's enough to keep the withdrawal rls at bay so I can sleep. Going to try not to take any Levodopa tonight.
2am had to take half a Levodopa. Rls is unbearable.
Finally caved around 3am and had to take 0.0625 prami to make it stop.
Mar 2 - Took two RSO (20mg THC), 100mg tram, and 0.0625 prami. Maybe in two weeks I can stop it completely.
Mar 3 - had to take Levodopa a couple times to get through the night. Tonight I went ahead and just took half of one before bed.
Had to take another half at 5am.
Mar 4 - had drs appt, stopping prami, Levodopa, and tramadol and trying 5mg methadone with 1 rso capsule and vape as needed. Can take another 5mg if needed. So far no bad side effects and having much more profound pain relief than with the tramadol.
Methadone is to try and get through the worst of the withdrawal over the next 2-3 weeks.
Mar 5 - had to take second 5mg methadone last night.
Mar 6 - had breakthrough rls throughout the night but did not take third pill or anything else. It was bearable enough to deal with. Side effects getting worse. Didn't take RSO.
Mar 7 - didn't have any breakthrough rls last night. Still only taking one 5mg in afternoon and one 5 mg at night. Side effects have gotten worse, nausea, constipation, memory issues, brain fog, intense drowsiness.
Today I didn't take afternoon dose because I needed to be able to leave the house. Hopefully tonight will be okay.
Haven't been using RSO or cannabis.
Mar 8 - had some breakthrough rls this morning. Took only half an afternoon dose of methadone (2.5mg). Will try 2.5mg tonight to see if it's enough.
Mar 9 - No breakthrough rls with 2.5mg.
Mar 10 - had some mild breakthrough rls in the middle of the night but it went away. Needed half a zofran today due to worsening nausea.
Didn't take afternoon dose cause had to go out. Took 2.5mg tonight. Taking half a hydroxyzine tonight for anxiety.
Mar 11 - more breakthrough rls but it did go away. Hydroxyzine can make rls worse. Just taking 2.5 tonight.
Mar 12 - had to take 2.5 this morning, once a day isn't enough. Got a near- infrared 850nm wrap to test the circulation theory. Takes 2-4 weeks to notice results at 30 min a day on lower legs and feet at least 3 days a week according to studies and anecdotal reports. Will be using it more than that.
Mar 13 - anxiety attacks getting worse. Took 2 RSO at night. Had to take half a hydroxyzine to stop anxiety attacks.
Mar 14 - took 25mg tramadol this morning when rls became unbearable. Took a while to kick in.
Took 1 RSO capsule and 50mg tramadol tonight.
Been completely off of pramipexole for 9 days.
If rls is controlled by tramadol and cannabis again I will consider the withdrawal from pramipexole over as far as needing methadone to get through the worst of the rebound rls.
Mar 15 - needed to take an additional 50mg last night to stop the rls. Felt less anxiety and more at peace today. Went ahead and took 100mg of tramadol tonight with 1 Rso.
Mar 16 - Had to vape a couple times to combat some breakthrough rls, but otherwise manageable.
---------
-Disclaimer-
I kept in regular touch with my doctor throughout all of this to make him aware of the doses of medications I was using. I never exceeded 10mg of methadone a day, or 100mg of tramadol and I NEVER took them both in the same day.
DO NOT mix opiates and make sure your doctor is aware of what you're doing and get their permission to adjust dosages of any medication or switching medications. Methadone has a variable and unpredictable half-life, for me it seems to last a couple days before I notice its effects wearing off, and side effects/pain relief effects compound quickly and maxed out for me after 3 days of regular use at 5mg twice a day.
You MUST have regular communication with your doctor when using opiates like this! The last thing you want is to withdraw off of one medication and find you need to withdraw off an opiate (Other than a low-dose maintenance dose approved by your doctor to treat your rls).
I am having my ferritin checked this thursday, it is likely way under 100 so I will be requesting an iron infusion once the results are back. I will also look into that probiotic, thank you!
Pramipexole withdrawal or...?
rls withdrawal symptoms
Pramipexole Withdrawal
RLS & Pramipexole
Tramadol Withdrawal Hell
