Need Support

[ViewsAskew]

Wonderful news! To have a doctor who is helpful, cares, and works to make our lives better - it's a dream come true.

Have a lovely holiday, Oceanwalker.

[oceanwalker]

Hello Steve:
The only side effect that I am experiencing is that I am tired from 600 mg of gabapentin/ 4Xday compared to the *prior 500 mg of gabapentin /4Xday. As well I was tired for about 3 to 4 days at that time...same as now. No problem I just rest for one or so hours. Before that I was taking 300 mg of gabapentin/4Xday.

One other thing is that I am having some difficulties with my L knee/had a total knee replacement 2 years ago and it's been bothering me now and then.
So resting it and icing it and falling asleep is good. Before the gabapentin increase I was unable to ice nor rest my knee. This of course was due to the severe WED/RLS.

So no I cannot say I am (at the moment) experiencing anything but being tired (lethargic) which will pass I am sure in a few days.

I know it's a lot of gabapentin...but having the severe WED I so so appreciate it at the moment. Always of course fearful this will stop.

Oh btw I am still using 2 X ropinirole (requip) each day as well. Not sure how long this will last? I don't even know if this is helping. It's the lowest dosage of 2 tablets/@6pm each evening.

All the best.....Sincerely, Oceanwalker

[Rustsmith]

Like you, I am also on a combined gabapentin-DA regime. I have been using the Neupro patches in addition to the gabapentin since last summer with good results. At this point, I believe that we will eventually see a shift away from simple treatments with DAs to a combined mode of treatment with the dosage of DA and gabapentin-link drugs adjusted based upon the patient's complaints.

[oceanwalker]

Hello Steve and I believe you are correct!
I just read up on the Neupro Patches and sounds very interesting for sure.
For now I am not totally sure about the patches but ..as stated they sound interesting.
I am very happy you are receiving such good results:)
Sure hope this continues for me as well.
Am wondering ? Do you use any type of opiate ? such as codeine ? Presently I use 6 emtec (tylenol#3 with no caffeine) per day.
As stated before... I am suffering a lot of pain with my L knee.

Ok ty for all the information; it is surely helpful and interesting!

Sincerely,
Oceanwalker

[Rustsmith]

I have been able to avoid use of any of the opiates yet. I am a competitive runner and am theoretically subject to random drug testing. I and not good enough to make it likely that I would be tested, but if I were caught with any trace of an opiate, I could be permanently banned from competition. So I hope the combination of he patch and gabapentin continues to work for a long time.

[oceanwalker]

Hello Steve and I wish you all the best with your running!!! This is awesome !!
Myself; I had several surgeries that do not allow me to run; (severe back surg. cancer surg, and the knees to name a few) however; I was an avid walker and I miss it so so much.
Praying that soon I will be able to walk again? as I used to.
But I appreciate each and every moment of not having symptoms from the gabapentin and the other meds. As well I appreciate my new doc and this wonderful place to obtain information etc.
I wish you all the best in your running Steve!!
Thank you for sharing. Please keep me informed as well I will let you know if I ever use this patch.

Thank you and have a great Christmas and New Year.

Sincerely,
Oceanwalker

[badnights]

Hi Oceanwalker!
Sounds like you're having a better holiday season than in a long time! I am happy that you got to see a doctor who will learn about WED/RLS and who will seek a neurologist who will also learn about it. It's a long, hard road sometimes, especially when you know that all the doctors are basically nice and doing their best; it's hard to leave one and find another whose best might be better.

I hope this gabapentin + codeine combo continues to work for years and years! The codeine is helping your WED/RLS as well as your knee, and you will notice if you quit it, does your doc realize that?

[oceanwalker]

Thank you Beth!!! Yes; things had been wonderful for quite a while...then he (the new doc) decided to take me off the nightly dose of dilaudid. All well and I went off of it straight away. Of course he as well asked me to decrease the emtec..and I did. However; this resulted in an increase in the return of WED symptoms. I advised him and he increased the emtec again. Now the thing is he told me that the General Surgeons and Physicians Board will not allow folks to use an opiod plus diazepam nor rivotril... (one or the other) which I don't understand? Anyways... I once again need to bring my information from our WED Foundation to him.
It just frustrates me at times..one doc's willing to give me anything BUT!! does not look into "preventable measures" "how can we fix this" and the other is against opiods. Okay ..I get that and then some. But the diazepam I don't even use (does nothing) I try to use minimal emtec..however I do require some quality of life with my pain and the WED.
Now this doc is one amazing doctor for sure... I am hoping and Praying that education will do the trick.
I try and do all that's asked..but there are some things that are difficult.
At least he has ordered tons of tests etc. and does not just ignore this.
As well I am still taking the ropinirole ? and I wonder why? Of course I know I am augmenting...I told him this but unfortunately last time I saw him ... (Christmas Eve) we were interrupted by an ER phone call for him.

Praying things work out ....

Hoping and Praying for everyone that 2015 will bring relief to all !!

Sincerely,
Oceanwalker

[oceanwalker]

Hello again...........
Sorry I don't mean to complain.
There's always someone worse off than me.
Guess I am being selfish...I don't know.
After having such a WED free time..hehe I did get spoiled.

Ocean:)

[ViewsAskew]

Hello again...........
Sorry I don't mean to complain.
There's always someone worse off than me.
Guess I am being selfish...I don't know.
After having such a WED free time..hehe I did get spoiled.

Ocean:)

You know, one of the hardest things for me to learn was that while there ARE others who have it worse, I was hurting myself when I didn't allow myself to feel all the emotions associated with this disease - the loss, the sadness, the anxiety, the terror at what's next...etc. It's counterintuitive (to me, at least), that there really isn't a scale when it comes to the emotional impact. Sure, some of us have it worse or it bothers us more hours in the day or more often....but all of us have it affect our lives in very similar ways.

So, to me, no one here is every whining or complaining. We're trying to figure it out, to put our lives in some kind of order, to solve a problem, to share, to feel heard.

When you do what you just did, someone else can read it and feel instant understanding. They can all of the sudden realize that someone else understands THEM, because someone else feels the same way. These kinds of post allow other readers to feel that they are not crazy! And much much more.

So, please, OW - share whenever you want. It may helps you....and it almost assuredly will also help someone else.

[badnights]

I Agree with what Ann said - there is no such thing as whining here. These emotions are real!

The rationale for not allowing an opioid and clonazepam/Rivotril/Klonopin is probably that both meds depress the central nervous system so that together they might cause damage or even death through a lowered breathing rate.

Let's not expect too much of this doctor, he is referring you to a neurologist and meanwhile he is doing the best he can. At least he raised the Emtec. The neurologist might put you back on Dilaudid/hyrdomorphone plus replace the benzodiazepine with one of the Z-med sleeping aids, like Ambian or Imovane/zopiclone, to avoid or reduce the CNS-depression problem.

But how to live with it meantime. Gee.

[oceanwalker]

Oh Beth and Ann you are both like my new doctor - Angels-
You both put it into proper perspective for sure !!! Thank You!!
Yes; you are surely as well both correct re: the opiods, benzo's and breathing issues plus.
This new doc is m y Angel Doctor and he is doing soo much for me. I appreciate this doctor and at this time in my life...he means a lot to me.
He is new with new techniques. It's not that he's all that better perhaps / just different. Some doc's are willing to take the extra time for WEDisease / others are too busy.

I Pray all works out but ya know ...yes; others have it worse.

*There is always someone better off and Worse off than myself*

In the meantime I will do what I can to live with it. Biking's just minimal doe to the bone crack under the prsthesis; but...this too shall pass / one way or the other.
So I can walk as much, rock as much, and just talk more to my darling husband.
I as well can do some floor exercises / there's always something one can try.

Am looking at this all positively and there's a solution. I just know it!!

There's been about 30 lbs together in weight gain; but slowly have come to accept *& am trying one day at a time ...to eat better.
All in due time.

Many thanks for everyone's feedback because I so so appreciate it !!!!

Happy New Year to all:) huggzzz Oceanwalker

[Polar Bear]

Ocean - During the years that I've been here on the Discussion Board I can't recall ever thinking that someone was whining.
Each and every one of us suffers, that's what brought us to find this site.
And as has been previously mentioned, any comment or thought of any sort can be of support to another member, or can elicit support from another member.
Please feel you can rant, rave, give off (we've all done it) and also share when times are better.

[oceanwalker]

Thank you Polar Bear, Ann, Beth and everyone!!

[oceanwalker]

Hello everyone;) I missed posting.
Still on Gabapentin (2400mg/day&ropinirole-small amount)
Anyways the gabapentin's still working and I use 2 tabs of the white ropiniroles/day.
Sorry I don't have the exact mg's for the ropinirole but it & gabapentin's working for the legs etc. I have the odd flutter every day but it's okay. No complaints Not much sleep @night...approx 2 to 3.5 hours. But I grab a nap at times during day.

Going to have surgery May13/2015 on my L knee again and I thought I read somewhere here ? what medication the anesthetist can use instead of dimehydrinate aka in Canada known as gravol. It is an anti nauseate. Here they use large quantities of it for a conscience sedation. If anyone knows ? Please let me know; thank you so so much.

As well...my doc stated that no longer can I take clonazepam and emtec together? Apparently the BC Surgeon General - advised our office of this. My doctor advised me I have to choose? Choose either clonazepam or emtec? This all seemed very weird to me...I had never heard of this. Apparently there were some deaths due to patients using the two together. I queried this ..of course but Hmmm - that's the answer. Okay? strange enough... perhaps they took too much ? I don't know. So now I am taking lesser amounts of the clonazepam - Praying no WED. I had been taking this medication for over 25 yrs primarily beginning for the WED. Never had I been asked to *Choose*? one med out of two. It's just difficult prior to surgery.

Thanks for listening

Ocean Marie