Hopeful RLS wife

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loriR
Posts: 3
Joined: Sat Jul 11, 2020 4:32 pm

Hopeful RLS wife

Post by loriR »

Hello,

This is my first post. My husband has RLS and has been on pramipexole for 25+ years, now 1 mg pills (I don't know how many he takes a day). RLS runs in his family in mother, siblings, now 2 of our children. Augmentation and the medication side-effects are both huge problems. I want desperately to help him. He wants change but is understandably resistant. He does not respond well to suggestions of lifestyle change. I think the only way to help him is to find a specialist that he can trust. I believe he will hear suggestions from an experienced specialist better than he does from me. Can anyone suggest the best person/clinic in California? We are both hoping to find someone that is more holistic and will not only throw more/different meds at him. This is obviously a complicated problem and needs a whole body approach, including meds, to get some relief.

I am thankful for sites like these and am hopeful.

Thanks,
Lori

Rustsmith
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Location: Colorado Springs, Colorado

Re: Hopeful RLS wife

Post by Rustsmith »

There is an RLS Foundation Quality Care Clinic at Stanford. One of the professors there, Dr. Mark Buchfuhrer, is one of the leading RLS experts in the US and also has a private practice in the LA area (Downey). One of his specialties is treating patients that are severely augmented like your husband.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Hopeful RLS wife

Post by ViewsAskew »

loriR wrote:
Sat Jul 11, 2020 6:15 pm
Hello,

This is my first post. My husband has RLS and has been on pramipexole for 25+ years, now 1 mg pills (I don't know how many he takes a day). RLS runs in his family in mother, siblings, now 2 of our children. Augmentation and the medication side-effects are both huge problems. I want desperately to help him. He wants change but is understandably resistant. He does not respond well to suggestions of lifestyle change. I think the only way to help him is to find a specialist that he can trust. I believe he will hear suggestions from an experienced specialist better than he does from me. Can anyone suggest the best person/clinic in California? We are both hoping to find someone that is more holistic and will not only throw more/different meds at him. This is obviously a complicated problem and needs a whole body approach, including meds, to get some relief.

I am thankful for sites like these and am hopeful.

Thanks,
Lori
Hi, Lori. I always admire partners/spouses who do what you are doing. He is a lucky person that you care, are helping him, and looking for a way that will work for him.

There are three places in California - Stanford and La Jolla have Foundation approved Quality Care Centers, and Dr. Buchfuhrer, a leading researcher and doc in the field, has an office in LA area (Downey), as Steve mentioned.

The more both of you know, the better, in my opinion. But, some of us are happy just following the doc's recommendations. Screwed up doc recommendations got me into a huge mess, so I tend to be a lot more careful now about just blindly following any doc, even the experts. But, that is me - very burned and not wiling to be back in a similar situation!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hopeful RLS wife

Post by stjohnh »

Dr. Buchfuhrer also sees patients at the Stanford Sleep center in Redwood City, if you live in northern California.
Blessings,
Holland

ViewsAskew
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Re: Hopeful RLS wife

Post by ViewsAskew »

stjohnh wrote:
Sun Jul 12, 2020 12:53 am
Dr. Buchfuhrer also sees patients at the Stanford Sleep center in Redwood City, if you live in northern California.
There are 3 or 4 other docs there. Do you think they are not worth seeing, Holland? I doubt you know them all...just wondering if you've heard anything about them. I know one of the La Jolla docs and absolutely would see him instead of Dr. B if I lived that way. Dr. B is only at Stanford once a month, making it much harder to see him there than the other docs.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Location: United Kingdom

Re: Hopeful RLS wife

Post by Polar Bear »

Lori, the one thing that jumped out at me was
""" My husband has RLS and has been on pramipexole for 25+ years, now 1 mg pills (I don't know how many he takes a day)."""
Your husband's pills are 1mg and it appears he takes more than one daily.
At present the max daily dose of Pramipexole is considered to be .5mg. Anything higher is likely to contribute to the onset of Augmentation.
How much is your husband actually taking each day?

This is something to bear in mind as you and your husband go forward..... tackling Augmentation is going to mean getting off the pramipexole.
I resisted weaning off Ropinerole (a similar drug) for years because I was afraid of the withdrawals etc. Eventually with the ongoing support of our fellow sufferers here on the Discussion Board I did it. Trust me it was the best thing I ever did.

Also, your husband is 'resistant'. For resistant read 'fear'. Augmentation is the very Devil.... but it's the Devil he knows.

Is your husband taking any other medications for rls. Is he being treated by his GP and/or a Neurologist.
Bear in mind that some other medications can trigger rls.
Have you looked at the pamphlets available on the Foundation Web Site rls.org. Some are free and others are only available to paid up Members.
If you wish to join as a fully paid up Member and have difficulty with meeting the subscription you can contact the Foundation directly for possible assistance.

If your husband sees an expert, gets a plan going to deal with the Augmentaton, we will be here to listen and support and help in any way we can.
We are here under any circumstances to help and support.

Thank you for supporting him.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

loriR
Posts: 3
Joined: Sat Jul 11, 2020 4:32 pm

Re: Hopeful RLS wife

Post by loriR »

Thank you all for your responses.

My husband is taking about 2 mg pramipexole a day. And yes, resistance implies fear. The fear of being without his medication is real. He is not being followed by his GP very well at all and has never seen a neurologist. I do not even want to start with a local neurologist with the severity of his condition, and I know that if he doesn't receive experienced care from the beginning, he will be out of there without looking back.

We live a couple of hours north of LA. I am very interested to hear more about the doctors in Downey or La Jolla. If you have anymore information on one of them, I would appreciate it. I would love to find a doctor that integrates traditional and holistic medicine. It sounds as though it may be very difficult to get in to Dr. B. I will start with looking him up and seeing what his practice looks like.

Thanks for the direction.
Lori

ViewsAskew
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Re: Hopeful RLS wife

Post by ViewsAskew »

loriR wrote:
Sun Jul 12, 2020 11:03 pm
Thank you all for your responses.

My husband is taking about 2 mg pramipexole a day. And yes, resistance implies fear. The fear of being without his medication is real. He is not being followed by his GP very well at all and has never seen a neurologist. I do not even want to start with a local neurologist with the severity of his condition, and I know that if he doesn't receive experienced care from the beginning, he will be out of there without looking back.

We live a couple of hours north of LA. I am very interested to hear more about the doctors in Downey or La Jolla. If you have anymore information on one of them, I would appreciate it. I would love to find a doctor that integrates traditional and holistic medicine. It sounds as though it may be very difficult to get in to Dr. B. I will start with looking him up and seeing what his practice looks like.

Thanks for the direction.
Lori
I am in Long Beach. I actually moved to So Cal because I was flying here to see Dr. B regularly and still couldn't do things such as iron infusions. So, we moved.

I can usually get an appt within a few weeks. BUT - that was pre-COVID-19. They have cut office hours by 50%. But, I think fewer people are coming to see him, too, so you might get in more quickly than you think.

Support group meets in Rossmoor (next to Long Beach) twice a year: https://www.rlshelp.org is the site of the support group and also has over 100 pages of letters written to Dr. B (for like 15 years) that he publishes and responds to.

His email is somno@verizon.net. He usually replies within a day if he is not on vacation. It's amazing, actually.

He is as well-versed on what to try as any doc around, as far as I know. Recently I wanted to pursue some gut stuff and he wasn't all that excited about it - but I think mostly because there is no scientifically proven test, and he is a man of science. It also is because he is Canadian (came here long ago) and he fully understands the healthcare system limitations here in the US, so he also wouldn't send me for a test that the system wouldn't pay for - and what I wanted was not covered. He is pretty good at knowing ins and outs. He has, over the 15 years I have known him, talked to 3 of my primary care docs as well as two hematologists. Once, during an appt with a hematologist, I said, "I can call my doc if you want to talk to him." The hematologist said yes. So, I whipped out my phone, called Dr. B's office, the staff found him and Dr. B and the hemalologist talked for 15 minutes. I had my infusion scheduled five minutes later.

When I was augmented, I emailed him. I was in Chicago. He told me what to do (2005). I went to my doc, showed him the emails, and then my PC called him to verify (after my appt). My doc then followed the protocol and after 18 months of trying to find someone to help me, I finally got through augmentation. I'd just about walk on a bed of nails to see him, LOL.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Location: Northwest Territories, Canada

Re: Hopeful RLS wife

Post by badnights »

hi loriR. You don't mention what particular side effects are happening, other than augmentation, which lord knows is bad enough. But a very common side effect of those daopaminergic meds is Impulse Control Disorder. It manifests as uncontrollable negative behavior of some kind - inability to stop eating, seeking sexual gratification, gambling, etc. Any one of those can be devastating and life-destroying for the patient and his/her family. The good news is that the behavior STOPS when the medication is stopped. It is not a matter of morality, strength of character, will power. It is a matter of getting that medication out of your brain so your brain can function normally again.

Just thought I'd throw that out there, in case ICD is an issue your husband is experiencing, because it might help him to realize it is not him, he is not at fault, it is all the medication.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Re: Hopeful RLS wife

Post by badnights »

The Foundation has a pamphlet that goes over what it's like to recover from augmentation. Got to https://www.rls.org/member-portal/publications NS scroll to "Medication Withdrawal after Augmentation". It is available only to paid members, but if you can't afford to join, do email them and ask about getting a sponsored membership. The membership fee is pretty cheap and goes to support research and awareness (and to keep the server running that hosts this discussion board).

It might help your husband to read this description from an authoritative source of what to expect - and also of why it's necessary.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

loriR
Posts: 3
Joined: Sat Jul 11, 2020 4:32 pm

Re: Hopeful RLS wife

Post by loriR »

Thank you. I became a member. I will return in a couple of days when my membership is authorized and read the pamphlet.

I am relieved to find a reliable place to educate myself.

Lori

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Hopeful RLS wife

Post by badnights »

Does it take that long? Oh my.
I hope the information helps you both.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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