and I have very little of that dread and agitation that used to occur as evening approached. HOWEVER, the RLS is really bad. From reading other posts, I think my horrible RLS may be due to withdrawal effects.
I am taking everything I can get my hands on. For example, last night I took 275 mg. of pregabalin, 600 mg. of gabapentin my brother gave me, a cbd gummy that has 10 mg. of thc (but it is not nearly as strong as a marijuana gummy, I’m told), and all of that relaxed me and made me sleepy but didn’t touch the RLS.
The only thing that has been helping me has been red vein Borneo kratom. I take either a heaping 1/4 tsp. or a level 1/2 tsp. and within 10-15 minutes the RLS is gone and I go right to sleep.
QUESTION: Do you all think the RLS is so bad due to withdrawal from ropinerole and will eventually be helped by the right dosage of Pregabalin or am I always going to have to take kratom or an opioid?
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Abby2525
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Hoping for answers to your question as well, I am only taking 900mg of Gabapentin. Have been off all requip for 3 days since slowly weening myself off. I get to sleep after 12/1 am but when going to bed at 9/10 pm (my regular time), unable to fall asleep for a few hours.
Hiya. Since you weren't on it very long, there is a great chance that pregabalin or gabapentin will work for you after things settle down. For now, I am so glad you are using the kratom or you would be fully in hell. RLS is obviously very bad during this phase, which is why many people need an opioid to get through it.
It seems to vary quite a bit as to what happens after the withdrawal period. For people who were on the DA's for years, like me, we seem to have far fewer options.
I'm hoping you can use one of the above drugs, or just natural solutions, with no kratom. Hang in!
TeddiJ, thank you for your support! I have been reading all sorts of frightening articles about people getting arrested and going to prison for having kratom. I don’t think 1/2 tsp. of it is a high dose. But I am very afraid of getting arrested and I’m also afraid of what will happen if at some point I can’t get it. I am afraid I would end up killing myself. I almost killed myself a few times in the last couple of months when the ropinerole had caused augmentation and I couldn’t get any help. My state has made it a misdemeanor to possess it and a felony to sell or distribute it.
But that is just it-kratom is seriously saving your life. What are your choices right now? There are none. I felt the same way, as we have discussed.
I highly, highly doubt you will get busted, especially during this short term phase of use, by using it at home. If you are traveling by air with it, then maybe somehow you could get caught-maybe. I have traveled with it and I didn't feel anyone was searching for it at the airports. Carrying it on the plane might be better.
I know the fear of not getting your supply as I was ON kratom due to getting cut off methadone abruptly. Unlike a real opioid, kratom is easy to get, even in your situation.
At some point soon, you will get your meds plan all sorted out and you can drop it. The withdrawal might be making you overly anxious, too.
PS-Kratom is not prohibited for athletes, which says something!
Thank you, TeddiJ. You’re right that it has literally saved my life. The support on this forum has also saved my life. Without the accurate information people on here have provided, I would have killed my self because I wouldn’t have known that the ropinerole was making me worse and I also wouldn’t have known about kratom or where to get it.
I started looking at it last night. I am horrified about what the government in this country is doing to people who are suffering. It’s disgusting that lies and propaganda are being published in so many places.
Hi Abby2525. I’m so sorry your suffering so badly and can’t believe how many members on this forum have been contemplating ending it all through sheer desperation. RLS-UK have reported that the USA are about 10 years ahead of the uk in terms of treatment and research so I’m surprised you aren’t getting more medical support. I guess you’re in one of the States where Kratom is illegal I’m in UK and it was legal here when we were members of the European Union but since we left it’s confusing as some research I have done says still legal some say not legal. You have done so well to come off all Requip but Zoolsg sent a post saying that the 2 weeks after your last dose of Ropinirole is terrible so maybe you are in that phase now. Has your Doctor not prescribed anything to help. I’m on my reduction journey from 6mg Ropinirole but only down to 5.25mg/day but the RLS is a bit of a rollercoaster ride, sometimes not bad other times hopping round the house.but I take Kratom red vein powder and make it as a hot tea and find it helps me sleep but I don’t take it every night just 3 nights in 7. The more posts I read I’m appalled at the lack of real medical support and thought I was suffering really badly but compared to a large number of members who are suffering real torture I must think myself fortunate.
Take care and fight for your right to have your condition taken seriously and respected as a dehabilitating condition
I really do hope that you find some relief from what you’re going through.
I definitely think the increased RLS is caused by withdrawals from Ropinirole. I had 2 weeks of horrendous, all over, severe RLS.I think the RLS will settle. It will be difficult to see if your symptoms completely settle without any meds though.
The Johns Hopkins hospital in the US requires patients to be completely med free for 2 weeks after dropping Ropinirole to see what the baseline RLS is like but that is almost impossible for most people.
You now have to decide whether to go med free or up the dose of pregabalin to 300mg. I wouldn't take gabapentin as well. Stick to one replacement med and see what controls the RLS.
Make sure your iron levels are above recommended levels.
Taking both the gabapentin and the pregabalin is equivalent to 375 pregabalin. Assuming you continue to take 600 gabapentin after things settle down which can take several weeks you will need to slowly reduce that amount or you will have withdrawal effects. After things settle down that you may not even need 275 mg of pregabalin but can reduce that or you may need that much as according to the Mayo Clinic Updated Algorithm on RLS, the usual effective dose is 200 to 300. And yes I think you will be able to get your RLS under control with just pregabalin.
Sue, I will not take anymore gabapentin. My brother was trying to be helpful in any way he could think of so he gave me the gabapentin tablet. It didn’t help with the RLS. Thank you for your encouragement!
all I can say is I’ve had RLS since I was 16!im 91 now &I be been taking Ropinirole all this time 3/4/5 a day, it’s 50/c inthemorning I’ve been up all night & it will not go away. It gives me so much pain I can’t describe it except worse than the 6 babies I had . Anyone got a gun.????
Valerita,Your reply is hidden from most people as not everyone will read this. You're clearly suffering badly. I suggest you make a new post listing all your meds and doses and ask for advice.
I'm so upset to read this.
If you're taking high dose Ropinirole and have been taking it for years, I guarantee the reason you're suffering so much is because of the Ropinirole.
It works for the first few months, maybe years but then actually worsens the severity of the disease.
UK doctors aren't taught anything about RLS or that Ropinirole and Pramipexole will increase the severity of the disease. It's called augmentation.
Augmentation is common.
Your only solution is to very, very slowly reduce Ropinirole by 0.25mg every 2 weeks. The RLS will flare up with every reduction. Ask GP to prescribe a low dose opioid like 50mg of tramadol, 30mg codeine or 5mg oxycodone to control the withdrawals.
When you're down to 1mg Ropinirole, ask GP to prescribe gabapentin or pregabalin.
Pregabalin starting dose for over 65 is 50mg. Take it at night and increase by 25mg every other day up to 150mg.
Then after you stop the last dose of Ropinirole, RLS will really flare up for 2 weeks but will then settle.
If 150mg pregabalin doesn't stop the RLS at that stage, slowly increase up to 300mg.
Also ask for full panel fasting blood tests and ensure serum iron is above 60, serum ferritin above 100, preferably 200.
If pregabalin doesn't control the RLS, low dose opioids like Targinact or Buprenorphine can be highly effective.
I suggest you read all you can about Augmentation and ask your GP to look at the RLS UK website and the new Mayo Clinic Algorithm on the treatment of RLS.
You deserve to be treated better by your doctors. You could be free of RLS and getting a full night's sleep with the right treatment.
According to Dr. Buchfuhrer, a top RLS expert in the USA, 97% of RLS patients will see their RLS completely controlled with the right medication and treatment.
Please don't continue to suffer so badly. Many of us have been in your situation and managed to get off Ropinirole and onto better treatment that allows us to sleep and be free of RLS.
Valerita1, I am really sorry to hear how much you are suffering!!!!! Joolsg is so right in his post. I hope you will follow his advice. His advice and encouragement along with others on this forum have saved my life.
Just awful, Valerita! Follow this advice and also order red vein kratom powder (as tea from the netherlands-we have the link, too). It will stop the rls within minutes so you can SLEEP! things can turn around just that quickly for you!
TeddiJ, what is the link for purchasing it from The Netherlands? Is that something that a person who lives in a state where it’s illegal could safely receive?
hi. I don’t know if they ship to the US, but it’s worth checking. Joolsg posted it and I can look for the link. (I’m traveling so it’s not as easy to look.) it’s something like:: kraatje….
Joolsg is spot on. You are obviously augmenting, A couple of things to add to her post. When you have the full iron panel. stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When reducing the ropinirole you may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. On the pregabalin, it take 3 weeks to be fully effective so I would wait until then before increasing the dosage. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin daily."
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga. Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute
I can’t answer your question. I can tell you what has and does work for me. Any kind of opiate works well for RLS. pramiprexel has some success. I’ve started taking gabapentin less than a week ago and it hasn’t had any effect that I’m aware of…I’ve read it takes time to build up in your system. I take the red Kratom capsules (6) every night because it works. I’m hopeful the gabapentin works because I’d like to have a break from the Kratom. I am prescribed oxycodone for chronic pain but only 10 mg pill per day….which gets me through the day…but not the evening. Kratom works and it’s inexpensive..in the U.S. it’s sold in every corner smoke shop. It’s not FDA approved so it’s states not for human consumption. So many people use it it for multiple reasons. It certainly is a staple in many households. Several years ago the DEA was going to ban it. I think they realized it’s importance. People are going to use and purchase what helps them with pain and disease….legal or not.
Heavyd65, thank you! I have been reading more about kratom, including on the link ChrisColumbus provided above. I wish our lawmakers in EVERY state and jurisdiction understood the truth about it. It is saving lives.
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