marijuana please?

[Brenda B]

Hi, it's been a long while since I posted but I'm kind of getting to the end of my rope and need advice.
First I'll start out with: I've had RLS for 26 years, I've been on 20 different meds for RLS (some conventional, some were pretty off the wall). I've seen 17 different doctors from PAs and family practitioners to neurologists to pain specialists. I live in a rural area so I'm running out of doctors to go to. I live in South Dakota which is a state that is close to legalizing medical marijuana and wondered if anyone here has had experience with it. At present I'm on a 4mg Neupro patch and 7.5mg of methadone/day. They're not working anymore. I can have RLS at any time of day or night and right now, it's averaging about 5 hours/day. It's ruining my life and I need to do something different. I most recently was prescribed carbamezapine which made me WORSE so I'm not at all enthused about calling my newest neurologist for another drug. Just so tired of being a lab rat. Any help would be greatly appreciated.
Brenda

[stjohnh]

Hi Brenda. I'm glad you found us but sorry you are having troubles.

Lots of people on this forum have tried marijuana, and quite a few use it here (me included). However, THC (that is how I will refer to marijuana) does NOT do much for urge-to-move (jumpy legs in the evening). It is however one of the few drugs that seems to help with RLS insomnia. RLS actually has two major symptoms, and they are only partially related: urge-to-move and insomnia. In the milder forms of RLS the insomnia is not a major problem and people with mild-moderate RLS do fairly well with sleep as long as the urge-to-move is controlled. In severe RLS the insomina problem is clearly separate and controlling urge-to-move doesn't help much with sleeplessness. I know you said you have tried a bunch of meds, but have you had IV Iron? Newer research has honed in on iron deficiency as one of the primary causes of RLS.

Your Neupro dose is quite high by current standards (even though it is in the approved by FDA range, most RLS specialists would consider 4mg to be too high). Not only that, your symptom description sounds like you are augmenting. This is a condition in which higher doses of dopamine agonists (the group of meds that includes Neupro) cause worsening symptoms rather than improving them. See the section on augmentation. The treatment is difficult and requires stopping the Neupro.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:

https://reader.elsevier.com/reader/sd/p ... 83A240A179

[ViewsAskew]

Hi Brenda - just wanted to say a quick hello. I hear you on the rural thing (used to live 2 miles south of a town of 600 ppl) and trying SO many medications. I finally just started flying to California to see one of the well-known RLS docs. It was worth it to me. Eventually I just moved to be close to him. Not the right thing for everyone but I am SO much better from seeing him that it's the only way I have a reasonable quality of life.

Hope you find something to help.

[Rustsmith]

Hello Brenda, Ann mentioned flying to California to see a doctor. One of the things that a number of us who are not fortunate enough to live close to an RLS expert have to do is travel. I live in southern Colorado and found that I have to drive 100 miles each way to see a doctor at the Univ. of Colorado medical school in Denver. Although you live much further away, that might be something to keep in mind as an option for the future.

As for your initial question about marijuana, that is a big reason why we moved from Texas to Colorado six years ago. We flew to Colorado to look at potential areas to live and also so that I could try the MJ out before we made a major decision like that. The first night I tried it was also the first night that I woke up the next morning to see the sun. As Holland said, most of us find that MJ doesn't help much when it comes to the urge-to-move, but it is one of the most effective things for addressing the form of insomnia that comes with severe RLS. Some people smoke or vape it, but many of us use an edible form, like chocolates or gummies. Edibles take longer to take effect, but the benefit lasts much longer.

[badnights]

At present I'm on a 4mg Neupro patch and 7.5mg of methadone/day. They're not working anymore. I can have RLS at any time of day or night

No wonder you can have WED/RLS any time of day or night! 4mg Neupro is too high, you have probably augmented. More crazy than that, though, is the fact that 7.5 mg methadone might be enough for you on its own, if you weren't taking Neupro. Meaning: when you have gone thru the withdrawal from Neupro, during which your symptoms will get even worse than they are now (temporarily), then your symptoms will improve, simply from being off the Neupro. And they might improve enough that all you will need is 7.5 methadone. At the least, they will not be bothering you at all times of the day.

My advice to you is to refresh your mind on what augmentation is. Read the Foudation's pamphlets. Read the Medical Bullentin for Healthcare Providers. Read some of the links in the page linked to by my signature below. Then, armed with this knowledge, go back to your doctors and tell them you think you've augmented on the Neupro, and you need their support in getting off it. If they don't know what you're talking about, you can either try to educate them, or seek another doctor.

You might need more methadone for 10-14 days after your last dose of Neupro. Expect nothing of yourself during that time. If the doctors advise you to taper, then taper off, but tell them you want it done as quickly as possible. As soon as the medication is not enough to have an effect, quit it completely, if your doctors see no danger in it, because tapering at that point just prolongs the agony.

Simply, you need to get off the Neupro because it is making your disease worse. That's augmentation. The medication that is supposed to lessen the disease, instead augments the disease.

[Brenda B]

Thank you, I realize that it's probably augmentation. The Mayo neurologist who put me on the 4mg patch (started at 3 mg to get me off Mirapex along with methadone but it wasn't enough) told me that Neupro was a better alternative and would cause much less augmentation. Well that was 5 years ago. It took me 5 months and a lot of hell to get off Mirapex. Doctors here won't prescribe methadone, especially with all the 'fixing and medling' that the government has done with opiods recently. I'm on the same dose that the Mayo Dr put me on back then. I've always told each doctor I saw that Neupro was a much worse drug for me than methadone but they don't believe me. I still don't know what to do. Even trying to see a new doctor 2-3 hours away is torture, I can't sit that long in a car.

[Rustsmith]

Brenda, maybe this publication would help with your doctor/opioid problem, at least if the problem is that your doctor(s) are not aware of the use of opioids for RLS. But if the problem is their fear of the DEA, then nothing is going to override that.

https://www.mayoclinicproceedings.org/a ... X/fulltext

[Brenda B]

I'm sure you all are right. Thank you so much for the information and advice.
I have found though, if I'm even 1 hour late in changing the Neupro patch, I will go though hell for 2-4 more hours. I'd have to find a doctor who would increase the methadone dosage considerably to get me through coming off the Neupro. Dr. Silber at the Mayo Clinic did me no favors in putting me on Neupro.
Thanks again,
Brenda

[RickyS29061]

I've actually tried thc to help with my rls and like you I have it all times of the day and currently I'm on 20mg of oxy 3 times daily and I've noticed if I use thc it actually made my symptoms alot worse. I was prescribed lyrica to help me fall asleep and it actually also made my symptoms worse to where even taking the 20mg of oxy wasn't doing enough so I'd have to take half of my oxy 20mg on top of my 20mg dose just to get relief. I'm not sure if I'm the only person who has certain meds make it alot worse and others on those meds it doesn't. So for thc use for rls all I'm gonna say is trial and error it might be the best thing for you or turn out to be the worst.

[Brenda B]

Thanks Ricky, I've found that MANY drugs make the RLS worse. Most anti-nausea. anti-dizziness drugs, lamisil, Jublia, many sleep aids, lots more I can't even remember. It makes treating other diseases/disorders really difficult. Lyrica made me sick and didn't help the RLS, carbemazepine made me worse (permanently), clonazepam made me so depressed I could have commited suicide if I'd have followed the doctors suggestion that I double my dose... I've lost all faith in doctors. I was overdosed on sinemet many years ago that I think did terrible damage, thanks to an ignorant doctor. I've been put on quinine, benadryl and heart meds by various doctors. Of course, none of them helped at all. I feel like a lab rat. The thought of going off Neupro, cold turkey or not, fills me with absolute panic after seeing what being slow to change a new one does to me.

[badnights]

The thought of going off Neupro, cold turkey or not, fills me with absolute panic after seeing what being slow to change a new one does to me.

I can relate to that. My god, I feel awful for you. I know 2-3 hours in a car is a nightmare, but you desperately need a knowledgeable doctor. What happened to Silber? Can you not go back to him and show him the results of his work? And tell him: "I have augmented. I am in agony and my life is effectively stopped. What can you do about it?"

If not him, then someone who knows. If I were in your shoes PLUS I was capable of doing anything (which I don't think happens together, but this is a what-if) I would move to southern CA to be near Dr. B., or Baltimore to be near Chris Earley, or one of the others... I am hesitant now to recommend all WED/RLS QCCs until I know why Silber is not treating your augmentation.But seriously - - your life is not happening right now, so the old rules don't apply - you should be in survival mode, doing whatever you have to to survive - which means, to get your augmentation treated.

The maddening thing is that there are people who can help you. In a just world, you would have access to those people. In this world - what can you do to get yourself access to them?

Is there anything I can do to help you?

Ah - and to answer about THC - I won't use it anymore. Sometimes it helped me sleep, but other times it made my WED/RLS go wild. I tried vaping flowers of a few different kinds, infusing oils with the flowers and making baked goods, and I tried gummies, with and without CBD gummies.

[Brenda B]

Thank you again. I could go back to Silber but that's a 4-5 hour drive to Rochester, MN. We ranch for a living and own land and my husbandf and son-in-law work together. This is all we have and just cannot, would not think of moving. I've sent the info about opiods/RLS on to my newest neurologist. Waiting to hear back. He flat out stated in the beginning though, we do not use opiods here. I might have to change his mind. My family practictioner is much more open minded though.
The last time I was at Mayo was in 2015, I learned afterward that if you do not go back there every 18 months, you are no longer considered a patient and do not have access to any doctors there (even by phone) unless you go back in person. I guess I wasn't all that impressed with Silber. He's VERY intelligent but has the personality and bedside manner of block of ice. He also will argue with anything you try to tell him. Guess he always has to be right and I'm always wrong.
Thank you so much for your advice, especially on the THC. I'd really hoped it was the answer. A couple of years ago, I had a spinal stimulator inserted in my back for back problems. The doctor had also stated that it's been known to help with RLS but since it has not been approved by the FDA for that purpose, the technician wouldn't even touch on the subject and I think was a little disapproving of the doctor for even saying it.
I guess I will see what my neurologist says and maybe go back to my family doc again for help.
Thanks again,
Brenda

[badnights]

debbluebird on this forum has recently had a spinal stimulator implanted - you could connect with her about it. I believe its primary purpose is to help Deb's RLS/WED, but she has other problems too. She could tell you how she got it, if her insurance paid for any of it, and what settings they've found to work and what settings to avoid.

[legsbestill]

Hi Brenda, to revert to your original question about cannabis, I wonder if kratom might prove more effective for you. So far as I am aware, it can be ordered by post in the US from a variety of suppliers. More generally, I agree with the posters who suggest that your neupro dose is high and may be contributing to your current difficulties. In your shoes I would consider gradually reducing the drug (so far as I am aware this can be done by cutting the patches) with a view to eliminating it ultimately, even if your medical advisors are reluctant. I also agree that ensuring that your serum ferritin is high should be a priority.

[stjohnh]

Hi Brenda, to revert to your original question about cannabis, I wonder if kratom might prove more effective for you. So far as I am aware, it can be ordered by post in the US from a variety of suppliers. More generally, I agree with the posters who suggest that your neupro dose is high and may be contributing to your current difficulties. In your shoes I would consider gradually reducing the drug (so far as I am aware this can be done by cutting the patches) with a view to eliminating it ultimately, even if your medical advisors are reluctant. I also agree that ensuring that your serum ferritin is high should be a priority.

Yes the patches can be cut to give lower doses. This not true for all patches, but Neupro can be cut.