Need Support

[oceanwalker]

Oh one more detail I forgot! Today I had my first iron/ferron infusion !! YaY finally.

There are ..so far..two more scheduled.

Sincerely,
Oceanwalker Marie

[badnights]

If there's a newly discovered danger of death, then by all means remove one of the meds! However, from what I can tell, the danger seems to be from abuse, mainly from using opioids to get high and benzodiazepines (like clonazepam) to enhance the high. I doubt there is danger from following your prescribed doses (not that I would actually know!!), especially since the opioid you are using is codeine which is pretty mild.

But still, your doctor wants it, and besides, the clonazepam might not be helping your WED at all, so it might be worthwhile to try removing the clonazepam. Maybe ask your doc about replacing it with one of the newer sleeping pills, like zopiclone/Imovane.

Why are you taking Emtec? It is a mix of acetaminophen and codeine. Since codeine has a beneficial effect on WED, keep it instead of the clonazepam, if you have a choice. If you're taking it for WED, you should see if you can switch to straight codeine, instead of stressing your body with unneeded acetaminophen.

Re surgery, maybe don't concern yourself with the details of what you should be getting in your IV- instead, take multiple copies of the WED Foundation's surgery brochure to every visit - with the surgeon, the nurses, and especially the anesthesiologist. Give each one a copy. Make sure they know there are substances that make your legs kick while you experience sensations of torture

You are getting 2.5 - 3 hr sleep a night and you think you're doing ok...... sit back for a second and think about that.

You are not doing ok. No one does ok on 3 hr sleep a night. You're dealing with it as best you can, but please don't ever tell a doctor you're getting enough sleep. Tell him/her you're getting 3 hr a night, but don't tell him you're getting enough.

At least you're getting iron infusions. I hope they help.

[ViewsAskew]

What Beth said!

[oceanwalker]

Thanks for the replies Beth and Ann:)

I am taking Emtec for pain. The pain that I am enduring right now is pretty nasty. The emtec does take the edge off the pain a bit for a while.
By no means does it rid me of pain. I totally understand that acetaminophen is not good for the body & has devastating effects.

Never could I request a sleep med or even more or a different pain med.
This would just appear (at present) as if I where seeking to misuse meds.
Why this is as it is presently..No one understands. It just is this way.. at this clinic.
Have Never misused/abused the meds. This is all very strange.

I could never ask for any of the meds (even though I showed them all the WED INFO)
that are on the WED Info Sheets.

Things here seem to be strange ..to say the least... in re: to several meds.
I believe it is the result of misuse/abuse in Western Canada.

Sincerely,
Oceanwalker

[badnights]

Marie, you wouldn't be asking for more meds, you would be asking to switch the clonazepam for zopiclone. Zopiclone and the other Z-drugs are not benzos, they don't have the same reputation for abuse, so you would be complying with your doctor's desire that you get off clonzapam, while still hopefully dealing with your sleep issues.

It is probably important that you keep up the Emtec. If it's for pain, it makes sense to take acetominophen. Remember that the codeine will be helping both the pain and the WED. So that's the one to keep, not the clonazepam.

[oceanwalker]

Hello Beth:
Thanks for your help.
I found that Zopiclone is no longer allowed in the US and not much in Canada. Plus I found the following small excerpt from Health Canada >> Treatment with IMOVANE should usually not exceed 7-10 consecutive days. Use for more than 2-3 consecutive weeks requires complete re-evaluation of the patient.

The updated Product Monograph for IMOVANE® is posted on Health Canada's and sanofi-aventis Canada Inc. websites.<<

So I doubt I will be getting either one. Shall ask and see. ?

I am slowing decreasing the clonazepam...I can't and won't do this in 7 days as the doc suggested. He gave me some diclofenac for one week only. OMG I had been using diclofenac off/on for a year. It is an anti inflammation medicine.

Oh Beth they would NEVER allow Emtec to be used for WED/RLS. It is only for pain.

The emtec I am eventually to cut out as well. After my surgery.

Honestly,,I don't understand all of this at times. But am going with the flow in a pool of continuous horrible migraines.

Thank you so very much Beth for all your help as always.

Sincerely,
Oceanwalker

Marie

[Rustsmith]

Oceanwalker, I cannot say what will be available in Canada but the three Z-drugs that I believe are most commonly prescribed in the US are Ambien (zolpidem), Lunesta (eszopiclone) and Sonata(zaleplon).

I have used all three with mixed experience. Ambien worked great for me at first, but then scared me when I could not recall the first 45 minutes after I got up in the morning one day while I was traveling by myself. I remember going to breakfast and then the next thing I knew I was almost back to my room. I have not taken it again and the FDA has reduced the recommended dosage since then. There are reports of sleep driving, sleep eating and obviously sleep walking with Ambien.

As for Sonata, I was given it twice during my last sleep test and it had NO effect upon me. I never did get to sleep for more than just a few minutes at a time that night.

As for Lunesta, it works for me most of the time. However, if my WED is active it cannot overcome the WED. The result is that I am still awake, but I am also so groggy that I cannot do anything (including walk a straight line at times). Talk about a miserable could of hours until it wears off. The mind continues to work, the body is next to useless and the WED is still there.

[oceanwalker]

Hello Steve and thank you for sharing your experiences.
WoW you certainly had a couple of very frightening situations... I am sorry this all happened.

I will not be using either of the ones you mentioned.

Again ...Thank you so much for sharing with me and the rest of us.

I do hope you find something that works!

All the best.

Cheers!

Ocean

[oceanwalker]

Hello everyone;)

Would anyone know if hydrochlorothiazide (diuretic) would worsen RLS?
Thanks !

Sincerely,
Oceanwalker (Marie)

[badnights]

WED is pain. Pain in its broadest sense is a distressing sensation in a particular part of the body. WED sensations are not usually identified as pain if they aren't accompanied by a sense of physical harm to the tissues of the body, but they can be called pain (in its broadest sense) nevertheless.

I am in Canada and I take zopiclione/Imovane nightly and have been for years. Recommendations are guidelines, not laws.

If you don't ask about something, you will never know. You have to let the doctor make the decision, not decide the answer before you even ask.

Instead of asking for a specific medication, ask what will solve the problem eg. what will replace the clonazepam - ask how you shall counteract the hyperalertness that comes on at night as part of the WED/RLS.

[Polar Bear]

With regard to codeine with acetaminophen my understanding is that the acet... makes the codeine work more efficiently.

I think (and may be confused here) but seem to recall that in the case of someone taking too much acet/codeine medication, the acet.... will make you sick (vomit?) before any serious damage can be caused by the acet/codeine dual medication combo. Please no-one treat this comment as proven fact

[ViewsAskew]

Hello everyone;)

Would anyone know if hydrochlorothiazide (diuretic) would worsen RLS?
Thanks !

Sincerely,
Oceanwalker (Marie)

I can't imagine why. According to this site, only 190 people have RLS/WED out of 60,000 who reported side effects while taking hydrochlorothiazide. Most important is that none of them had RLS/WED in the first month. As far as I know, if a medication is going to increase/worsen symptoms, it does it immediately for most of us.

http://www.ehealthme.com/ds/hydrochloro ... g+syndrome.

[oceanwalker]

Thank you so so much Ann!!! Makes sense to me and I had some flutters the next couple of days after taking the hydrochlorothiazide. However; they have
dissipated.
Looking forward to the 3rd knee surgery-so I can walk again and be out of most pain. Had 2 done and one didn't work-revision's necessary.

Again Thanks Ann for your help and ty for the stats.

Marie

[ViewsAskew]

No fun that you need a 3rd - but surely hope it works this time!

[oceanwalker]

yes I agree Ann .
190/70 high top so the diuretic (hydrochlorothiazide) has helped.

Anyways the BP's come down to top# being 160 and 143 etc which is better than 190 something.

If all goes well with the BP I will get the surgery...if not...and it's all good...it will be delayed.

Thank you Ann!!