Well, finally landed on my feet with this neurologist. Her name is Dr.Phillips, she is in Dartmouth, Nova Scotia, Canada for anyone out here seeking a neurologist. For those not familiar with the health system structure in Canada, one can ONLY get in to see a Neurologist with a referral form a first line health practitioner, so unlike the UK one cannot go the private route with a self referral and pay. She was awesome. asked great questions regarding my RLS and actually really listened. She read my last blood panel while there and would also like me to start up again on a B12 supplement as I am borderline low. We had a DISCUSSION about augmentation, she was totally current. She even went in to her notes from a talk on RLS she attended at a world conference on sleep. She totally supports me coming off pramipexole and wants me to start with Gabapentin at a much higher dose than before. Then she brought up using opioids as she recognised the severity of my RLS. So have also got a prescription for Buprenorphine/naloxone. I am to keep taking the iron supplement. We discussed the rate to coming off pramipexole, and she said that I would need trial and error to find the level that worked for me. She reassurred me about the use of opioids citing several other patients she has using it with great success, BUT, if it did not suit me then there are alternatives. I am a little shellshocked to be honest with her openess , matter of fact acceptance of the state of RLS and her total support that I come off any DA's. I have a follow-up in April to see how things are going but she made it clear that if I was struggling to manage with the drugs thus prescribed she can switch me to pregabalin, and change the opioid......I was so prepared to have to push to get my situation recognised as desperate, and needed support and medical support to address things....She is familiar with the Mayo Clinic Algorithm and open to any questions I had based on this. So Thank you to everyone here for all the support, encouragement, advice and information, it helped so so very much to keep strong thus far. I know the months ahead are not going to be easy, but for the first time in a long time, I feel hope that things can be better. One question, is there anything like a RLS tracking diary template that I could use to track how things are going as I start withdrawing? Any advice on managing the withdrawal is very welcome.
Update on first visit with Neurologist - Restless Legs Syn...
Update on first visit with Neurologist
That is so great to have someone like that in your corner.
On the record keeping.
I ruled an A4 sheet of paper into sections.
Date
Medication
Dose
How I felt/ reacted.
Top up med, if needed.
I then made a graph of my progress.
Coming off Fentanyl 70 micrograms, that took me 18 months.
It is so gratifying to see the progress, and to note the bad days, and where I rested up for a week, to allow my body to catch up.
Hope that helps.
Using a large piece of card is more durable.
Good luck.💚
That is great ! So pleased for you to have a knowledgeable doctor.
I am so delighted. How wonderful that you have found such a great neurologist. Onwards and upwards.
Thanks your post and pleased for you. You have accepted that you may have to go through a few weeks/months of frustration until you finds the right balance of drugs. My neurologist (private) was sympathetic but not as "with it" on RLS as yours. He started me on pregabalin (could just as easily have been gabapentin) and gradually increased dose up to 600mg/day before admitting that it was not working for me and changing to opioids route. Of course that mean a long haul cutting back the pregabalin slowly.
I hope you find your medication balance quickly but please keep us informed
Kind regards
Davchar
How fortunate, great news! You are on your way. Best of luck. Rivers
So pleased for you. This should be a normal doctor’s experience…. Hold on to her. And great that you mention specifics for others in Canada.
Can you find out Dr. Phillips' marital status? I am ready to propose sight unseen. lol
Hahaha, she is married with three children in their pre-teen to teens ages. I do feel extremely fortunate and told her how much our meeting has given me hope and the possibility of a quality of life I was giving up on thinking possible.
LOL My laugh for the day!😀
That made me laugh!
I agree that that your good fortune is without parallel. And I'm one of the lucky SOBs that found Dr. Buchfuhrer!
That is such great news & all so interesting.Thanks for sharing with us.
Here in the UK I am on gabapentin plus buprenorphine.
Wahooo! A neurologist who knows about RLS AND she is in Canada. I can't begin to thank you enough for sharing this information. I am currently with a Neurologist in BC Canada. .
I have been taking 6mg Premipexole for the last fifteen years and it had taken me three years to taper the dose to 1.25mg. I was stuck at that dose for 1 year. My GP refered me to a Neurologist. He told me, in as many words, that I should stop messing arround trying to taper the dose. He refused to treat me until I was off the premipexole. He claimed that he regularly instructs his patients to go cold turkey. He claimed that there was no problem and implied that I was a being a wimp.
Despite my scepticism ( not to mention wimpishism!) and contrary to all the wonderful advice I have had on this website.... I foolishly took his advice. That was nine weeks ago. My life (if I can call it that) has been, and still is, a total nightmare of insomnia , anxiety, nausea and RLS worse than I have ever experienced in the last 30 years. I am finally starting to recover but now have an opioid addiction to deal with. He prescribed Tramadol which, I now understand, is the least effective opiate. He also prescribed an anti depressant which nearly killed me. Words cannot begin to describe the horrors of the last 9 weeks. The only thing that was worse than the last minute was the anticipation of what the next minute would be like...
It horrifies me that "professionals" like that have a licence to destroy peoples lives.By contrast I am so incredibly impressed by the people on this web site who, in spite of my stupidity, saw me through this ghastly experience.
I totally agree with the DoDahMan but suspect that polygamy is frowned upon here in Canada. Otherwise he would have competition.
Nice try though!
I am so so sorry you have had to go through that nightmare. I am glad that you, like me found your way here. I was told by my GP a while ago to taper of pramipexole over the course of a week and that they wanted me to go on to ripinirole the following week and taper up until the RLS was under control. That week was hell. literally zero sleep, RLS everytime I stopped moving for more than ten minutes...even moving was not enough. I had to occupy my brain as well. The brain fog and the anxiety was off the charts. When I went back at the end of the week I saw a nurse practitioner.... who was utterly useless and belittling the severity of what I was experiencing. Now, here I am better prepared and with the advice and support here and from the neurologist who seems to get it, I am starting the process. having a neurologist as an ally in this journey has added to my optimism that I can win this battle. I am taking 300mg of gabapentin until 21st of this month then increasing that up every couple days or so by 100mg and start the withdrawal off pramipexole. I am on 0.25mg three times a day at the moment and that is considered high....you have been fortunate not to have some of the other devastating affects of pramipexole given the dosage you have been on. Congratulations of how you are doing now. It takes a lot of strength and resilience to do this and I take strength from hearing others stories of their experiences. Hang in there and too bad you are waaaay over in BC. Maybe there is a more knowledgable neurologist out there to support you. Keep me updated with your journey and know you are in a better place. I must admit to nearly being in tears part way through the consultation with Dr Phillips, I was so relieved to being able to talk about it and how to manage it without seeming pathetic. It is so hard to explain what it is like and how utterly destroying it is.
Great to hear that you've found a doctor so informed about RLS. I'm in Lunenburg and will ask my family doctor for a referral to Dr. Phillips. If you don't mind me asking, how long did it take to get your first appointment? Thanks and good luck with your treatment.
Hello sleeplessinNS. Initially the referral had me on waiting over a year. That put me on an appt in maybe Oct or Nov this year. However. When I saw one of the doctors at the practice I am listed with I was having a hell of a time with augmentation, lack of sleep and told him that quite frankly is this was it, then I could not live this way and I would be coming to see them to pursue MAID. He added a paltry amount of gabapentin but did say he would get on to the neurologist to try to get me in sooner. I got a call from the neurologist office for 6 weeks ahead. So, expect at least a year unless you can convince the doctor you are deperate. I also took a copy of the abstract of the Mayo Clinic paper and asked yet again for a full iron panel. They told me my iron levels were fine but maybe take a supplement if it might help. Iron infusions by IV are not available in NS anyway. Depending on your doctor you could take in the Mayo Clinic paper and discuss treatment options and management based on that. I also collated the sections that were highlighted and in boxes for ease of access so the doctor could easily and quickly access the info. Good luck and let me know how you make out and Know you are not on this path alone. You have to be a squeeky wheel and desperate to get in to Dr Phillips in a relatively short time…
Thanks very much for the quick response. I have suffered with RLS for about 8 years. I was on Pramipoxile for most of that time and doing quite well until augmentation started about a year ago and I weaned myself off it (suffering terribly in the process). I am now on 1800mg of Gabapentin which worked fairly well until about a month ago when, for some reason, it just stopped working and I am going to wean myself off. Unfortunately my family doctor is not open to discussing options other than Pramipoxile (although I convinced her to give me Gabapentin) and is not interested in any of the research. I tried talking to her about the Mayo guidelines and her answer was that her "system" (which I suspect is some NS guidelines) says to just keep increasing Pramipoxile which there's no way I will do. The good thing about her is that she is generally open to referring me to any doctor I suggest so hopefully she'll go along with Dr. Phillips, although I doubt that I can get her to try to expedite the appointment - I'll probably have to try to do that myself. I am thinking about going back on a low dose of Pramipoxile in the short term just to try to get through it while waiting for an appointment, but I really don't want to. I have found two other possible options - Dr. Rigby at QEII and the Sleep Disorders Clinic, also at QEII. Have you heard of either of these? Thanks again for the help - hopefully I'll manage to get through this while waiting for some help.
I understand from other posts on here that some people are on higher doses thatn 1800mg of gabapentin to manage their RLS. The change for the re-emergence of RLS sounds quite sudden. Has anything changed in your life? or have you added or altered anything in your daily routine; Any diet food changes etc? How are your iron levels? These seem to be key factors that can trigger RLS. There are others here who can perhaps shed more light on this than me but it may be helpful to visit anything that may have changed during the time preceeding the renewed RLS showing up. Let me know how you are making out, I will be thinking about you and how you are doing.
Your point about the sudden change in the effectiveness of Gabapentin is a good one. Nothing has really changed in my life, routines or food. I tried adding another 300mg for a few days but it had no effect. I saw my doctor on Thursday and she ordered iron and B12 tests and I will have the results on Monday. But the best news is that she gave me a referral to Dr. Phillips and based on your experience, she emphasized that I have severe RLS. To my great (and pleasant!) surprise, I got a call from Dr. Phillips office the next day and an appointment for April 11! I just have to make it through the next 19 nights. I’m thinking about taking a very low dose (.125mg) of Pramipexole to help me. I don’t think that being on it for 3 weeks will cause any withdrawal problems. Thanks for your help!
I am so happy to read your post. It gives me hope. I am a 67 year old female. I have been on Mirapex for around 20 years. It served me well but is no longer working well. My family doc suggested I do a drug holiday. I know I couldn’t tolerate it because my RLS is too severe. I have reading the Mayo clinic abstract and I know there is help but the problem is finding someone to implement it. I don’t know if family docs are allowed to prescribe these treatments but if not I am going to insist upon a referral to this neurologist. Thank you for recounting your experience.
Hi Rushgram, you asked about what prescriptions my neurologist wrote for me from another post. Thought to post them here for you and others struggling in Nova Scotia to get the help they need. She has prescribed 1800mg gabapentin daily taken as 300mg capsules 3X daily and Buprenorphine/naloxone 2mg/0.5mg to be taken as 1/2 tablet up to twice a day dissolved under the tongue. These are not starting doses...she was quite clear about this. She also told me that she has some patients who only require 1/8 of the Buprenorphine/naloxone to manage their RLS. She was comfortable giving me these prescriptions as I seemed knowledgable about my condition and the Mayo Clinic algorythm, and the recommendations they have put out.
Hope this helps,
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