Ropin-a-ROLLIN over me like a semi truck

[badnights]

Hi Todge. Trazadone will help with insomnia, which is common post-augmentation. I found it made me sleepy the next day too, but lots of people don't have that problem. If tramadol is good enuf to treat the WED/RLS symptoms that remain after withdrawal is complete, then you might not need anything else. However trazadone is not especially effective as an AD, and won't help your anxiety. As I mentioned in the other Topic, consider whether the anxiety could be cannabis-induced - Maybe the cannabis is doing more harm than good. And talk to your doctor about all of these things.

I am so happy for you that you made it through the worst part of your withdrawal, especially considering the extra challenges you faced. It's hard enough, yet you had to deal with even more! You should spend a few moments every day feeling very very good about that.

[Margaret122maryL]

Good morning, Leslie and all. I’ve been having trouble with this site for four days. Finally it is responding again.

It sounds as if you, like me, are on the mend. I, too, was worried about the depressed breathing on Tramadol. Death might have been a relief, but I was not suicidal. Now I am down to Tramadol 100 ER, with a half dose of Xanax to get me through the day. Five weeks after my last little dose of pramipexole, I think I am in recovery. My FitBit gave me a sleep score of 92 last night.

I am still doing little that is productive. No meal planning, shopping, housework. Just piano and a few upbeat movies. Some advice from my cousin, a clinical social worker/therapist—she said to do light exercise to raise my adrenaline a bit, but not enough to raise it too much. Let brain chemicals settle and re-adjust on their own. I think they are doing that and I will be my real self again, all day, soon.


Today, I intend to fill out the FDA consumer’s form to report an adverse reaction to pramipexole. The past three months have been hell, and more needs to be done to make physicians aware of the dangers of these drugs. Does anyone have any thoughts on that?

[Todge]

WB Margaret! I have been worried!! The site was down for me as well for a few days. Thank goodness it happened this week and not last week. I would have been lost. Badnights, I think you MAY be on to something with the THC. I don't think it always helps me mellow out at the very least. The other night I was a complete wreck and paranoid and I couldn't keep my train of thought. I did two loads of laundry with NO SOAP... Then when I realized I forgot the soap I stuck the detergent in the fabric softener hole and the fabric softener in the detergent hole. Then I started crying because I thought I had discovered the cure for cancer and had forgotten it because I was so stoned. Sigh. My kids think having a pot smoking mom is kind of cool. They used to bring me wine with their dirty clothes that they wanted me to wash. Now they bring bags of Funyuns and Doritos for my munchies.

Because leaf isn't legal in MN yet, they don't specify the strain of the marijuana. It all goes by percentage of THC. I wonder if some of what they gave me was more of the Sativa/higher THC kind. They specify by colors, but even though red is supposed to be the highest, the green makes me go nuts. AND to add even more confusion they change the kinds all the time depending on the source so a Red pill that works this month, might me high as a kite next month. Anyway, I go to Colorado next week and will experiment with the different kinds. In the meantime... EUREKA... I may have found a breakthrough. For the first time in forever, (I LITERALLY I HAVE NO IDEA WHEN I LAST DID THIS) I slept from 11 pm to 7:30 AM and did NOT wake up even once. I know!!

I ended up taking my 100 mg of Tramadol at 8. My 4.75 mg THC tablet at 9. THEN a unisom at 10. I used to love Unisom but then needed more and more to get the same effect. That is when they switched me to Ambien. So being out of my system for years, it again provided me with that great knock you out kind of effect and I think then the THC did the rest. I did exactly the same thing tonight so we shall see.

I am soo grateful for all the help I received on this forum. I am living proof that going off the DA is super SUPER hard, but somehow I survived. There were so many days I either didn't think I would make it another day AND didn't really want to live anyway, I was so miserable . BUT thanks to you all I held out one more minute, hour, night, etc... Its still turbulent but I am finally needing sunglasses again as I face the light at the end of the tunnel.

[Margaret122maryL]

Good morning, Leslie et al. Yes…good. It was another good night, though I learned the hard way that it is too early to push myself. I was feeling good enough to put off my Tramadol by a few hours yesterday afternoon, then had to do some yoga at midnight. I think I have to accept that I will be on Tramadol forever.

I, too, am grateful for the help of this forum and the RLS Foundation. I have been a supporter of the RLS foundation for years and their Nightwalkers news warned me not to increase my dose of pramipexole. This would have been worse if I had listened to my PCP instead of to the RLS Foundation.

My son has RLS also. He is on pramipexole 0.25 and a low dose of Trazadone. So far, all is good with him. He knows he will eventually have to get off the pramipexole, and he knows he absolutely should not raise the dose of pramipexole. He will bring the latest info to his next physical and is confident his PCP will be open to reading it. Does anyone have any advice on whether he should let well enough alone, or whether he should substitute now rather than later?

[Rustsmith]

In my opinion, as long as your son knows not to increase the dose above 0.25mg and is not showing any signs of augmentation, there is no reason for him to try to get off of pramipexole at this time. Some people are able to successfully treat their RLS with a DA for years before they experience augmentation and the challenges of withdrawal will be pretty much the same now as they will be once he moves into augmentation.

[Polar Bear]

Margaret and Todge.... We were all very happy when the site was back up and running as normal.
I agree with Steve that many people can use a DA for a long time without issue, others for not so long. As long as he is aware of the possibility of augmentation and keeps his dose as it is, there is no reason for him to come off it at present. As you say - leave well enough alone, but be aware.

[Margaret122maryL]

Thanks for your reassurance about my son. He has a demanding job and the pandemic has made more demands, with child care, etc. This is not the time to go into the depths of withdrawal. The future, however….Mom will continue to worry about the future. Hopefully, more research and options will be there when he needs them.

[ViewsAskew]

To add to that, I originally augmented in about a week or two - not exactly sure, but it was before the 2 week appt with the neurologist.

I went through h-e-double-hockey-sticks as my MIL used to say. Took me years to completely get through it and the WED/RLS was permanently worsened. Yet I take it again and have for quite a few years. I started getting iron infusions. Now that my iron is MUCH higher, I can take if for long periods. I started taking it 3 days, then a break. Then a week, and a break. I eventually made it several months without augmentation. Now I don't really keep track. I did this over a several year period, but I am positive that iron in the brain is related to the ability to use it for longer times.

Highly suggest anyone taking it have regular serum ferritin and other blood work to make sure their hemoglobin is in the normal range, as well as that their serum ferritin is at LEAST 100. My symptoms are lessened when my ferritin is over 300, but I can handle the pramipexole without augmentation when it's over 100. I still try to take breaks from it, but right now is a great example of me not having been able to - it's almost a year since I took a break and I haven't had to increase it. Hopefully the infusion will resolve things and I'll be able to cut it out again for awhile.

[Margaret122maryL]

Thanks for your input. It sounds complicated. I want to check I read your info correctly…you augmented on pramipexole but still take it, on and off, along with iron infusions. Is that correct?

As for me…I am terrified of going back on pramipexole. It was too difficult to get off it. But it may be an option for my son when his time comes to consider.

My ferritin is 65. My PCP is against iron. I will have to do some seeking and consulting about that in the future. I really want to try an infusion, see if I can get along without Tramadol, but will need another physician and I am not sure what is available in my area. Baltimore is a manageable trip, but Johns Hopkins isn’t taking new patients and doesn’t even have a waiting list. Maybe Boston?

[ViewsAskew]

Thanks for your input. It sounds complicated. I want to check I read your info correctly…you augmented on pramipexole but still take it, on and off, along with iron infusions. Is that correct?

As for me…I am terrified of going back on pramipexole. It was too difficult to get off it. But it may be an option for my son when his time comes to consider.

My ferritin is 65. My PCP is against iron. I will have to do some seeking and consulting about that in the future. I really want to try an infusion, see if I can get along without Tramadol, but will need another physician and I am not sure what is available in my area. Baltimore is a manageable trip, but Johns Hopkins isn’t taking new patients and doesn’t even have a waiting list. Maybe Boston?

I took methadone - alone - for a few years. But, I am someone who gets tolerance, so once my dose had increase from 10, to 12.5, to 15, to 17.5, to 20...I knew I had to do something else. So, my idea at first was to alternate pramipexole with methadone, so I never took it for more than 2 days at a time. That was horrible - I was always going through withdrawal.

Long story short, after a couple years, I had an infusion - I wanted to see if it would help stop the issues with augmentation - and it did. It's allowed me to keep my methadone dose from ratcheting upwards for over 10 years. As long as my ferritin is high enough, I don't augment.

I flew to California, originally, for the infusions, and paid cash. Not cheap - but it was the only way and I was pretty desperate. Finding a doctor locally (Chicago) seemed impossible. It totally changed my life. Eventually I just moved to Southern CA so I could see Dr. Buchfuhrer whenever I needed.

[Margaret122maryL]

Thanks for your response. …clearer now. I can’t imagine what you have been through. Good luck to you. I will certainly look into iron. Somewhere.

[Todge]

Update on my withdrawal process.

I saw my GP today for the first time since this all happened. Up until now I had been working with Dr. Moore- a neurologist from the sleep center at Mayo. My GP is usually awesome but even working at Mayo himself, he had no idea there was a new algorithm for treating RLS (I had printed out the article for him) and had no idea that Ropinirole was the devil's drug- BUT he was totally on board with continuing on the 100 mg of Tramadol at night. He did add some Buspar for my anxiety (which is 999999% better but then this morning I had a TINY panic attack which tore away what little self confidence I had built up since this whole thing started.) He did know something about DAWS and told me it sounded like I should have been hospitalized. I totally agree and gushed about how this forum and the UK one literally saved my life when I was sooo ready to just lay down and die.
Seriously, I couldn't have made it without you all!!

We are still playing around with the cannabis. I only take a tablet at night that contains 4.75 mg THC and .25 mg CBD. I don't think it effects my RLS at all. And it doesn't make me sleepy. BUT I do sort of think it improves the quality of my sleep?? AND if I get woken up by my BF or the dogs barking or something, I seem to be able to just roll over and go back to sleep sans anxiety and restlessness. SO I will stay on it a bit longer. I have stopped vaping during the day. I think Ann had said that it can actually cause anxiety. Since I've stopped I have been a little less anxious- may just be the timing of things, BUT the coolness of smoking pot all day and watching Cheech and Chong movies wore off pretty quick. And I have gained weight with all the munchies.

I am still AMAZED that I still have NO daytime RLS symptoms. I still get some twinges at night but they are easily stopped with a quick massage (me thumping my legs repeatedly), or a bath or a short walk around the house. My GP did bring up that he hopes I don't build up a tolerance to Tramadol... I said I was more worried about augmentation again. He also warned me that even though its been 3 weeks without Ropinirole, I still have a few more weeks ahead of me where he said I shouldn't be surprised about some small "bumps in the road."

He ended the visit saying that I have been through HELL and made it out alive. And that I should be really proud of myself. I thought that was super sweet of him.

Anyone out there on Tramadol- can I expect to be stable on 100mg for a while? I know everyone is different, but if you could share your Tramadol experiences it would be helpful! I just want to know if I should be working on lowering the dose?? Raising the dose???

Thanks again to all of you FRIENDS out there!

Leslie

[Rustsmith]

Leslie, I am very glad to hear that you are in recovery mode AND that you have managed to educate your GP. If only we could get more of them to understand the horrors of having RLS and augmentation.

As for your question, I have been on 200mg tramadol ER for as long as a year. The only issues that I experienced were specific to males.

Tramadol can rarely cause augmentation, but that is so unusual that it should be anything of concern to you.

[Polar Bear]

A long time ago I was prescribed Tramadol as part of my rls treatment. I cannot recall what my upper dose was but would reckon above 100mg.
However, I developed random jerking, my shoulder would jump, my lower leg would kick out unexpectedly while I was seated.
The Tramadol was stopped and the jerking ceased and never happened again.
At the time I was a bit wary of the Tramadol anyway because it can interact with an antidepressant and I was also taking Citalopram.

I don't mean to put a cloud over the usage of Tramadol, it can work so very well.
Also I don't recall how high my dosage was. As the jerking side effect concerned me enough to come off it I felt it worth a mention and something to be aware of.

You are indeed doing so well, a true warrior to have come through what you have done and I hope that everything continues to work well.

[Margaret122maryL]

Leslie—i just read your good report and hope it is still good. Are you able to go back to work?

I was pleased to hear about the potential bumps in the road…I have experienced a few in my recovery. I am surviving on Tramadol 100 ER, with supplements of 25 mg when needed. It totals to 125-150 mg daily…along with some alprazolam. I FEAR the panic attacks. i still get hot flashes…not as many as two weeks ago, but still bad hot flashes. I have little interest in food, down 10 pounds— now I am at an ideal weight rather than nudging overweight so that’s not all bad. My endocrinologist (osteoporosis) and my oncologist (minor breast cancer) were both sympathetic but I have had only phone and email contact with my PCP. She prescribes what I ask for, but I feel like I am managing this on my own with help from this community.

I realize I haven’t been myself for a long time. Perhaps the augmentation was creeping up on me for a year. I want to be myself again am probably being impatient. I hope this is not permanent.