Two very different doctors' visits

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
sleepdancer2
Posts: 188
Joined: Sun Jun 29, 2014 7:46 am

Re: Two very different doctors' visits

Postby sleepdancer2 » Tue Nov 21, 2017 12:04 pm

I spent a few years on Sinemet as the first line of treatment for PLMD back in 1998. I augmented but the doctors didn't recognize it for so long. I did learn a lot about how to work with the med for more predictable results. Unfortunately it's been so long ago I've forgotten much of it, but I'll share a few things that come to mind. I learned to be very conscious of what and when I ate. I studied food types and their digestive rates. The active ingredient in Sinemet absorbs in the small intestine. I avoided having foods in large amounts present in the small intestine at the time the medicine was absorbing, I think meats were the worst. A small bit of carbs seemed to be ok. I think it was something about the transporters for the med were the same transporters as iron (or maybe protein ??) in food. There were plenty of transporters at the digestive level, but at the blood/brain level there were fewer transporters, so the food competed with the medicine to actually enter the brain. A hamburger within an hour or so before my dose would mean less effectiveness. Back then there were no instructions for this accompanying the med. At some point they added "Diet may affect medication" but who the heck could know what that meant? I found information by digging on a Parkinson's site. Maybe info on all this is readily available these days, but the knowledge helped me manage my symptoms at a lower dose and with greater predictability. I shudder to think how many patients are instructed to keep increasing their dose when diet management is what they really need. Sorry if there's any info not exactly right. Was afraid if I took time to research I might forget to come back and reply.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

2BassetMom
Posts: 157
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Wed Nov 22, 2017 9:52 am

Today I had the best appointment ever with a medical professional concerning restless legs. I saw the PA to my pain management doctor. We were working to get me off oxycodone very slowly. When I saw her today she asked how I was doing and I explained that the back/hip pain was a little less but I have restless legs that make my life very difficult. I told her that I am getting about 3 hours combined sleep and how it affects my daily life. She was appalled that I was getting by on such little sleep. Then I told her about my history with the drugs usually prescribed for rls and that I found that oxycodone was the only drug that truly helped calm my legs. I explained that in my research I found that opioids were a viable option for those who can't take the other medications. She listened and didn't doubt what I said! I wish I could convey the level of compassion she displayed. We discussed dosage and decided to lessen my dose from 7.5mg to 5mg. This was after I told her I often am able to take 1/2 tablet during the night. She said that I was getting less that 5 mg when I do that. What a relief! I see her in 3 months to see how I'm doing. So now I'll see how this all works out with some lifestyle changes I'll be making.

Rustsmith
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Re: Two very different doctors' visits

Postby Rustsmith » Wed Nov 22, 2017 1:55 pm

Congratulations on finding someone who will listen and cares. It is a wonderful feeling to finally find someone who is willing to help. I hope that your changes continue to provide some relief and that she is able and willing to allow you to remain at this level of oxycodone.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Two very different doctors' visits

Postby Polar Bear » Wed Nov 22, 2017 3:32 pm

I can hear the joy in your 'voice' - I'm so happy for you.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Posts: 4910
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Two very different doctors' visits

Postby badnights » Thu Nov 23, 2017 4:45 am

Wow, good news about the PA.

Have you stopped taking the Sinemet, then? It can still be useful for a one-off, but I would recommend never two nights in a row, and no more than 3 times a week. In other words, for emergencies. I made up those numbers based on my experiences; yours might be different but the point is to be very very cautious with that med, because it will turn on you in a hurry if you use it too often.

Another thing that limits its usefulness, for me anyway, is the rebound effect. It wears off in about 4 hours, and every time, I get re-bound RLS/WED. It's ok if there's less than 4 hours before I have to get up, because I can deal with the rebound if I'm up and about. I am lucky that my doctor gave me a small prescription of immediate-release hydromorphone to supplement my hydromorph contin (continuous release hydromorphone), so I now use that if I have strong symptoms when there's more than 4 hours before I have to get up.

I hope that PA remains an ally. If you're becoming a member of the Foundation anyway, get her a copy of the Medical Bulletin - it's on the Publications page near the bottom in the section for Healthcare Providers. It is the single best summary of diagnosis and treatment that I have seen - short and complete. You might like to read it yourself, too. It's very informative and the jargon is manageable.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

2BassetMom
Posts: 157
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Sat Nov 25, 2017 3:16 pm

I still have my Sinemet and will use it only if I am in a situation that requires I use it such as a long plane ride etc. I found that 3 days in a row and I'm a jumpin'. The dietary aspect is fascinating. I think I'll start keeping a food diary just to see if some foods I eat cause increase or severity in my RLS symptoms. I'm coming off of a bad night right now. Of course Thanksgiving food is not what I normally eat so that may have been a factor. Plus, I find that a long day on my feet without a nap causes my hip/back pain and RLS to flare. That's how I would describe Thanksgiving Day:) We are driving our grandson back to college tomorrow and it is a 5 hour drive one way. I will be prepared with my portable heating pad and we'll stop often for me to walk around. Life keeps going and I am determined to take part.

ViewsAskew
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Location: Chicago

Re: Two very different doctors' visits

Postby ViewsAskew » Sun Nov 26, 2017 5:19 am

2BassetMom wrote: Life keeps going and I am determined to take part.


Good for you! I want to always feel this way, but sometimes I do not.
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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Posts: 7222
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Two very different doctors' visits

Postby Polar Bear » Sun Nov 26, 2017 2:13 pm

Life keeps going and I am determined to take part.

This could be a motto :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Posts: 4910
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Two very different doctors' visits

Postby badnights » Tue Nov 28, 2017 6:40 am

Life keeps going and I am determined to take part.
I love it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

2BassetMom
Posts: 157
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Fri Dec 01, 2017 9:53 am

I saw my primary care doctor for a respiratory infection this week. He asked how my legs were doing and I told him that I tried the latest med he prescribed, Sinemet, and that after 3 days my rls got worse. So, he said to double the dose! You can imagine my frustration. I will be seeing him again for a recheck on this med and I do believe I will tell him that I am choosing not to go with a prescribed med. He doesn't seem to be doing any research on rls and I don't see him being influenced by anything I may tell him or hand him to read. I may ask if he would read some information I have received from the RLS Foundation if I get the courage. Since the PA for my pain management doctor is working with me on this I feel that I am taken care of as far a meds go with her. You all seem to have been fighting this longer than I have and I so appreciate the advice and wisdom that I find here.

2BassetMom
Posts: 157
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Thu Dec 07, 2017 7:14 am

I just picked up my prescription for oxycodone. I had run out this morning and was without for about 12 hours. I have a tendency towards laryngeal spasms as a result of 8 weeks radiation to my larynx region. This followed surgery to remove my cancerous thyroid. I use a cough med to control these spasms called Tussionex. It is made up of hydrocodone and a powerful antihistamine. if I am on oxycodone consistently I don't get these spasms. This morning I starting having them so I took a dose of Tussionex. I have had the absolute worst case of rls ever all afternoon and into this evening. Seeking answers I searched this forum for antihistamines and found they trigger rls attacks. I am in absolute misery and cannot take anything else until at least 2 hours from now. What have I learned from this experience? I need to visit my ENT and change the cough med and also talk to my PA about this experience. So, opioid use is beneficial to 2 conditions I suffer from. Another thing; the spasms are really scary but the severe rls attacks are worse.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Two very different doctors' visits

Postby Polar Bear » Thu Dec 07, 2017 9:04 am

Sorry you had to find out the hard way that antihistamines can be the devil's work for an RLS sufferer.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 15301
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Two very different doctors' visits

Postby ViewsAskew » Thu Dec 07, 2017 7:12 pm

Oh, my. Yeah, the first generation antihistamines can wreak havoc for those of us with RLS.

Last year I went to a new primary care doc about vertigo. I TOLD her about RLS and how the meds usually used for vertigo would trigger RLS. She proceeded to NOT look it up and prescribe a drug that was in the same family anyway. Yeesh, sometimes....
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.

2BassetMom
Posts: 157
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Fri Dec 08, 2017 9:32 am

I know! Do they think we are lying? Or, that we make this stuff up? What really upset me was my primary care doctor telling me Mirapex wasn't in a class of dopamine agonists. I find it so frustrating to come up against this thinking. I'm thankful for my neurosurgeon and the PA for acknowledging that I do research and it is sound.

2BassetMom
Posts: 157
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Tue Dec 12, 2017 5:49 am

I am currently on 5 mg of oxycodone for my rls/hip & back pain. I find that this strength, down from 7.25/3.25 is not very effective. I only get about 2-3 hours of relief and I am waking up with restless legs after 1 1/2 hours sleep. I am wondering what dosage anyone else is on with this drug and how effective it is. I plan to message my PA with this new development but need to know if this is common at this dosage. Lack of sleep is starting to affect my everyday existence. I find I am very depressed and getting a bit cranky. Not me at all. I'm not sure what to do next. Thanks for any help.


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