New Member Info

[kickyknees]

Hi all, just found this site and board yesterday and I can see I have lots of reading to do before much posting. However, was advised to drop a line here to introduce myself, so this is the short version:

Always had minor RLS as an adult female (now age 66), several times a year which developed with a vengance after a surgery last June. (Only difference between that surgery and 3 previous from my anesthesia records, according to the reviewing anesthesiologist was that was apparently the first time I was given a nerve block for post-op pain prior to the surgery.)

Was doing well on 4.5 mg Ropinirole (1.5mg/ 3x) daily till another surgery just last month. I was assured by that anesth and my surgeon that due to the previous complications, no nerve block would be used, but after the surgery the attending nurse told they did a "minor" one. Poor choice. So now it takes 7.5-9mg daily to control my RLS.

Knowing I needed an increase in my R meds, yesterday I went to my P.C. doc who told me that 7-9mg/da is too much to be taking, so he put me on neurontin 100mg 2x/da concurrently with ropinirole to see if I can drop back on the R, and then possibly migrate to the N. He could not see any relationship between the nerve block and my RLS?!?

Prior to this last surgery, I had to take 2 units of blood because my hemo count was down to 9.3, considered inoperable status. My P.C. thought I might be bleeding internally for such a low count and wanted to do a colonoscopy. A few days later at surgery, it was up to the 13s. I have been taking 2-3 iron tabs daily, and had a blood draw yesterday to determine my body's mineral counts. I should have those results by the weekend.

This is where RLS gets strange: iron deficiency can bring on RLS...but taking Ropinirole can exacerbate an already decreased hemo count! I would love if I could "manage" this with merely iron tabs, but I'm convinced the nerve blocks have a huge bearing on my RLS!


Like I said, have a lot here to read, absorb, and possibly apply. Appreciate any suggestions or real life experiences with same.

G.

[Betty/WV]

Hi Kickyknees: Welcome, yes, lots of reading is required to learn as much as possible about RLS.

Just wanted to tell you I had whole knee replacement 6 months ago and had a nerve block. I don't think that had anything to do with your RLS getting worse. It could have been something else they gave you, one is antihistamines. There is a booklet you can print called RLS and Surgery. Before I had my surgery I had my game plan all worked out and went over it with the surgeon. And the anthesiologist (bad spelling). Thankfully they were cooperative. I had had a heart cath in the past and they gave me benedryl and for a few hours after my RLS went crazy, my one leg was jumping in the air all by itself. And you are supposed to lie quiet for a few hours after the cath.

This is a great site, you can learn lots of helpful information. Because usually the doctors don't know much about RLS. You have to be your own advocate.

I wish you success in dealing with this horrible syndrome. I am 73 and guessing I have probably had it for about 40 years. I'm sure you will get some help from some of the knowledgeable people that post here.

Take care. BETTY/WV

[Betty/WV]

Kickyknees: I forgot, I just wanted to say, you have to be careful about taking iron. Can be dangerous unless your iron count is low. Has the doctor checked your iron?

BETTY/WV

[Polar Bear]

Welcome to the site kickyknees. A great guidance for medications for your own information and for your doctor is the Mayo Clinic Algorithm.

http://www.mayoclinicproceedings.com/co ... l.pdf+html
This link should take you to it.

[SquirmingSusan]

Hi Kickyknees. Welcome to the forum.

Usually after surgery people are given some kind of opioid painkillers, and those often eliminate the RLS. I wonder, since you were given a nerve block, if you didn't get any painkillers after the surgery? Do you know what was in the nerve blocks?

A lot of people report that their RLS is worsened after surgery. No one is quite sure why, but it could be because of blood loss leading to low iron levels. Also, a lot of times with surgery they give you compazine or some other antihistamine that helps with nausea. That can make the RLS worse.

That is a really high dose of Requip. You could also be suffering from augmentation, which is when the drug itself causes worsened RLS. Sometimes people can switch to Mirapex and it will work better. Or stop the Requip, but it usually take a strong painkiller to knock down the RLS when you quit taking the Requip.

[badnights]

Hi kickyknees. That seems like a very small amount of Neurontin. Do you notice it having any effect?

Have you started to cut down the ropinirole yet? that is definitely a high dose of ropinirole; typical range for RLS is 0.25 to 4 mg daily. The more you take, the more likely you are to develop augmentation (a paradoxical worsening of symptoms: earlier onset in the day, spread to other body parts, or increased intensity). Also the risk of developing compulsive behaviors is higher at higher doses.

I like that your doctor is getting you off it, but you are definitely going to need strong opiods to control the RLS during the withdrawal phase, which could last a few days to a few weeks. You could show him/her page 106 from the book by Buchfuhrer, Hening, and Kushida; interestingly enough, Google book results lets you read this book online for free!
http://books.google.ca/books?id=hFNifHwa7n8C&pg=PR11&lpg=PR11&dq=buchfuhrer+hening+kushida&source=bl&ots=tsvuwE8OVB&sig=Lh48XElRMEI0KIiRL6zYQPtvhcU&hl=en&ei=r-eOS-KQBorQtAOJk92vCA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CAYQ6AEwAA#v=onepage&q=buchfuhrer%2C%20hening%20kushida&f=false

It's full of good info, including a description of augmentation.

[kickyknees]

Thanks for your input, especially bethf for the book recommendation. I have just ordered it. Also, please let me know when/if it is time to move this discussion to another area.

I have tracked my ropinirole usage since I started taking it, and was steady at 4.5 for about 4 months. (My initial surgery that set this off was in June, 09.) In fact, for about a week following my second surgery in late Feb, the levels stayed the same which I attributed to my higher hemo count (2units blood prior to surgery.)

It was then that I noticed increasing restlessness in the evening hours. I have never felt "textbook" onset coming earlier in the day. I had been spreading the 1.5 dose at 8 hr intervals. Went to 6 hr. intervals for about a week, but would often need to advance somewhere in early evening with my bedtime pill but was not satisfied to think I could get through the night at that longer stretch, so would take another just prior to bedtime. That is what put me at the 7.5 level. But then just past weekend I thought if I simply increased my dose to the full 3mg tab, 3x day that would take care of the evening issues.

It was at that time I thought I should tell my dr. and that's when he recommended I start the Neurontin.

As for sleep patterns, I could sleep from 9P to 3:30 or 4A. The past 2 nights on N I have awakened at midnight. Cleaned my bathroom last night for an hour, and here I am tonight on my computer. And I'm still awakening around 5A. No symptoms, just waking.

I tried really hard the last 2 days to hold my R. dosage to 6, but at midnight having awakened due to RLS have had to take another 1.5 to get through till morning.

On my surgery medications, I took anti-nausea drugs only the first day. But I feel the nerve block had some lasting effects into the first week and I was also on oxycodone, but no longer need it for the pain.

I think before I ask my doc to change it up too much, I need to wait for my blood panel results and try his recommended dosages of N., raising it every few days till I feel I can back off the R., as he recommended.

Does that sound like a plan any of you could/have lived with?

[kickyknees]

P.S. I guess what I was trying to say was that I don't feel my increased requirement was due to natural augmentation since I can tie it so directly to the surgery date.

[Polar Bear]

I also spend 2 or 3 hours each night 'just awake', mostly rls symptoms are under control, but I'm just awake.

Could be a side effect of the meds. Or could be a habit which has evolved from when my symptoms were more active during the night.

Good luck with the Neurontin.
You will find Dr Bs book a great source of information.

[kickyknees]

yes, i was also thinking "habit" from when my pre-surg shoulder pain was so bad I couldn't sleep more than a 3-hour stretch. since my surg which has extended to now 5-6 pain free hours. don't want to take "sleeping" meds so am content(?) to simply either get up at 330A or have breaks in the middle of the night since i don't have to be anywhere most days. Anyway, after going back to bed this morning at 3:30 I slept till 7:00 ....yea!!!!!

[badnights]

When I was on Neurontin, it had the effect on me of stilling the creepy feelings but leaving the hypervigilance; so I would be wide awake, not kicking but exhausted. There is a component of hypervigilance which goes with the sensory disturbances in RLS, tho I've only seen it mentioned in one paper. The Neurontin dulls the kicks but doesn't remove that.

I really thought I had a problem with insomnia too, not only when I was on Neuronin, but when I was on oxycodone too; but now that my RLS is properly (I hope!) controlled (on hydromorphone), I sleep without any insomnia whatsoever. So your insomnia is not necessarily bad sleeping habits.

I really hope your doc gives you something (oxycodone?) for the ropinirole withdrawal or you will never be able to bear going off it. I seriously doubt the Neurontin will cover it.

[kickyknees]

The pain in my shoulder and surrounding muscles was so bad I could not use the arm for 2 months prior to my surgery last month (total shoulder joint replacement).

For the months between surgeries (L. rotator cuff in June '09, then R. TJR in Feb 10), I was on hydrocodone and hydromorphone, oxycodone and tramadol (not all at once ) I cannot say that I would have thought any of them had any effect of dulling or decreasing my RLS.

Do you think I should consider they WERE effective, now that my new requirement has increased 50% since taking no pain killers? Can actually see on my spreadsheet (have kept immaculate dose records since 1st surgery), the need for increased ropinirole comes once no more pain killers were in my system.

However, just the fact that I still required 4.5 R when on them says I don't think they could give me a high enough (legal!) painkiller dose to quell my RLS. But interesting (and new) propsoal to consider.

Today (full day #2) I can say that I think the neurontin is having some effect. At mid PM and evenings is when I start getting "antsy". I just took my second ropinirole (1.5) at 2P and have REALLY needed to take one again for the past 45 min (since 3P)! Probably will not be able to hold off much longer.

[kickyknees]

bethf, do you take ONLY hydromorphone?

[badnights]

I have tried a number of different combinations of things. 10mg oxycodone by itself was nowhere near enough. I am now on nothing but 9 mg hydromorph contin and it's working. I sleep. I am still in the day. But it has only been a week so I am keeping my fingers crossed.

2.5 years ago, before I was formally diagnosed with RLS, 10 mg oxy after surgery was enough to quell the RLS. But my RLS has gotten so much worse (because I augmented on ropinirole? because I went thru Neurontin withdrawal -which isn't supposed to happen lol -?). I would guess the opiods were indeed helping your RLS, and that you have intensely bad RLS, and that you will end up on strong narcotics.

PS I don't feel high when I take them, although I do feel a mild something when they kick in.

[SquirmingSusan]

Do you think I should consider they WERE effective, now that my new requirement has increased 50% since taking no pain killers? Can actually see on my spreadsheet (have kept immaculate dose records since 1st surgery), the need for increased ropinirole comes once no more pain killers were in my system.

Wow, that's amazing that you keep such good records. And yes, it's likely that the painkillers were helping to control your RLS. Opioid painkillers are one of the most effective treatments out there for RLS.

Maybe you can bring the spreadsheet in when you talk to your doctor again. There are some strong painkillers out there and it's likely you could manage your RLS entirely with one of them, if you want to get off the Requip.