What do I tell the neurologist?

[Newmomma567]

I need some advice about how to best go about discussing RLS and possible treatment options (hopefully opioids?) with a neurologist. This will be the first time I see a neurologist, and I am worried I won’t say/do/ask the right thing, and I’ll just be told there is nothing that can be done.

I suppose my pessimism is showing, but I feel desperate; I don’t want to get blown off as a patient with “drug-seeking behavior” or as someone with a made up problem when I have been suffering with this for most of my adult life. Were there specific things for those of you who have found relief that I should say specifically? Things to avoid? Etc.

I write this in the middle of the night while I continue to kick and wriggle around...

[Madlegs1]

If you have tried all other medications, and pinpointed all possible triggers, and had iron levels tested. And printed out Dr Buchfuhrer s' paper on augmentation for the drs perusal. Then go ahead.

You could threaten selfharm experiences and feelings if you feel ignored.

Good luck. Let us know how you get on.

[Jules1953]

Last night I commenced Buprenorphine 200 micrograms

(As hydrochloride)

In Western Australia it is sold under the label Temgesic Sublingual Tablets.

It is a controlled Drug here in Western Australia so possession without Authority is illegal.

My Doctor went through the appropriate channels to get me the necessary approval. I have had RLS for 49 years and all other medications have been exhausted.

The tablets are dissolved under the tongue. They come in very small doses and I took 3 tablets over a 1.5 hour period after going to bed last night.

So that is less than 1mg of the Buprenorphine.

I immediately stopped all my other RLS medication last night and commenced the Buprenorphine.

I was taking .....

600mg Gabapentin

5mg Endone (oxycodone)

0.250mg Sifrol (pramipexole)

It took me a while to get to sleep but once asleep I slept through to 6.00am

I then stayed in bed till 11.00am sleeping on and off with no RLS symptoms and no jerking.

I will keep you up to date with my progress.

[Sampsie in reply to Jules1953]

I'm so hoping my consultant will prescribe me an opioid this month.

[Hidden]

Your position is unique because you are withdrawing from ropinirole not because of augmentation but hecause you're breastfeeding.

You're also finding the side effects of gabapentin intolerable at the moment.

If you don't wish to take either of these two then you have the right to choose not to. Nobody can insist you do.

It would appear that the only other pharmacological options are a benzodiazepine or an opiate. The opiate may be better.

In which case that's possibly all you need to say to the neurologist as regards medication. No to ropinirole/gabapentin, please prescribe an opiate.

You could also ask about iron therapy.

It would be good to take along some information about the effects of dopamine agonists on prolactin abd infonon the use of low dose opiates for RLS.

[Rottie3]

I’m assuming you are having pain with your RLS since you are wondering how to get a neurologist to agree to give you opioids. I went to a pain doc before ever going to the neurologist as I am being treated for back pain. None of the injections, ablations, etc. have helped so the pain doc sent me to see the neurologist when my legs started being as bad a problem as my back. The neurologist says the leg pain is RLS. I think a pain doc is where you need to go for opioids. I just started with the neurologist so now trying out a time released gabapentin along with the other gabapentin I’ve already been taking. For now the only way to get relief is with hydrocodone, Vicodin. I also take Cymbalta..have you ever tried that..it works for chronic pain. I have tried to wean myself off of it twice, thinking it wasn’t that helpful, but am convinced it is also a necessary evil that I have to take if I don’t want intense, unrelenting pain. If you can’t get the neurologist to give you opioids for your pain, definitely go see a pain doc as I can almost guarantee you will get the help you need for pain from them..good luck

[Joolsg in reply to Rottie3]

Cymbalta causes or worsens RLS - like most anti depressants and should be avoided. Some anti depressants work on nerve pain which is why neurologists still prescribe it for RLS BUT the majority of neurologists are unaware it worsens RLS.

Opioids are prescribed for RLS even where there is no pain at all and there are many RLS specialists in the USA who are knowledgeable and will prescribe methadone or Buprenorphine as first line RLS treatment. The RLS foundation in the USA is campaigning to make sure low dose opioids are available for all RLS sufferers.

[Parminter]

podbean.com/media/share/pb-...

Here is an informative podcast with Professor Winkelman of Mass General on augmentation and how to handle it. Your neurologist should respect this.

[Eryl]

I found relief by avoiding sugar and foods contain high levels of refined carbs. Apparently the resulting high insulin causes inflammation and sensitivity in the nerves.

[Newmomma567 in reply to Eryl]

I did a super low carb diet (under 50 carbs) for over a year, and felt really good! But it did nothing for my RLS. I had to come off of that diet for pregnancy and breastfeeding, but you bring up an interesting point. I suppose it can’t hurt to try to avoid more sugars right now.

[Hidden]

Docs usually like giving opioids a a last resort.

[Hidden]

I have opioids to use but I will use them only if I am having a really bad night. I will take my Pramipexole and Gabapentin before the other drug.

[Augie1140]

My personal opinion is that you look the doctor square in the eye and tell him exactly what you said to us in your post. Respectfully ... be assertive, tell him what your goals are, describe what your quality of life looks like right now, and on a scale of 1-10 ... let him know what level you're at, right now. The more you jibber-jabber or look "weak" ... the quicker you will lose his/her attention. Be succinct, but not rude.

INVITE him/her to ask you anything he feels would be pertinent to your problem. Never lose eye contact if you want to be taken seriously. So many of the times ... people hand over total control and lose out on being taken seriously, or even a participant. Tell him your a little lost, but let him/her know that you ARE here ( in this office ) for a purpose. Let him know you need his knowledge. Then he/she will feel valued and be more apt to engage. Ask if your "case" is something he or she would like to take on. This will cause your case to be taken seriously because of a verbal commitment. These tips will make a proper connection, or you will know right away to not waste your VALUABLE time with this Doctor. This should be your first visit ... not your tenth. You ( in a way ) are interviewing him for this position.

Never forget ... it is your body, and no one else's, and stay up to date. ( be fully tuned in ... study ).

I Wish You Well, Augie

[Newmomma567 in reply to Augie1140]

Great advice. Thank you.